Ralph and the Crew

Something about Zhen

2012-01-26T15:12:00.003-06:00

By now you surely know that with me, tomorrow means sometime this week or next, right?

Poor Zhen. From the moment we busted him out of his orphanage he has had nose issues. Among other things. First thing in the morning, virtually every morning, he would sneeze or cough and a HUGE, green, mega-booger would fly out of his left nostril. Easily the size of my pinky finger, this snot snake would often be licked clean before I could even grab a tissue! ICK!

Concerned about sinus infections, Zhen went through several series of antibiotics. The green snot always returned. Eventually.

Early in December, 2011, the odor arrived. Oh my goodness, the odor. I would wash his hair, brush his hair, but someone was going on inside. I suspected the nose, as it was running green and heavy again.

I couldn't wait to have his tonsils and adenoids removed! I thought that there might be rotting food hiding in tonsil pockets. I even told the doctor that I wouldn't be surprised if he found something stuck up his nose, considering the monster boogies that only came out of one side.

Well, guess what?

During Zhen's surgery, the doctor found a piece of upholstery-type foam stuck up in his nose. When I say stuck, I mean adhered to the tissues of his nasal passages. He tried to flush it out, but that didn't work. He had to go after it with instruments. Eek!

Poor sweetie. I suspect that that foam had been there for a LONG time. Zhen was a hurt puppy the whole afternoon and evening after the surgery. The nurses and I had to force liquids on him with a syringe. Same with his pain meds. He just laid in his crib moaning all night long.

Thank goodness he turned the corner overnight and was happily sucking down chocolate milk the next morning. He even willingly took his Lortab medicine, which tastes AWFUL. He's been in great shape ever since.

And no more monster boogies!

I was a genius.

2012-01-24T22:55:00.003-06:00

The boys are doing great! After all three had their tonsils and adenoids removed on the same day last week, the first night was dicey, but after that it was a piece of cake.

We had two rooms with "name alert" stickers on the sign. Don't want to mix those boys up!

Thank goodness Chip came to help me! He took care of Theo the entire time since I was busy next door with Ralph and Zhen. Theo would NOT keep his gown on. We switched to jammies after this because you know the place was chilly! Doesn't Theo look big?

Ralph was ready to play after sleeping for a few hours. He charmed all the nurses.

Zhen was the BIGGEST whiner after the surgery. He just whined with every breath for the entire first night. He may have been hurting a bit more than the other two...tell you why tomorrow.

Looking good and feeling fine today!

Going to Kansas City

2012-01-15T14:31:00.004-06:00

What a week we had last week! Phew!

Between the orthotics fittings, eye doc, family doc, birthday, therapies, event planning, and 2 IEP meetings, I was totally exhausted.

Tuesday was Zhen's birthday. He's five years old now! Wow! He gets to eat his cereal in this red bowl every morning. Dad was out of town, so we baked a cake and had it without frosting for a little party after dinner. The kids were so surprised that cake tasted good without frosting! Ha!
Wednesday had to be the highlight of my week...Theo's IEP meeting. If you have never had the pleasure of looking forward to an IEP meeting I'm sorry. This is just one of the ways I am blessed by Theo. Watching him blow expectations and goals out of the water is so exciting! Working with a team of professionals that have fallen in love with him is rewarding. This deserves a whole blog post of it's own.

Friday I finally got Ralph to the eye doctor. The kid wants glasses. He needs them for reading but I wasn't certain that he would be compliant. Since he keeps stealing Zhen's glasses, I think he's ready.

Later that afternoon was Zhen's IEP meeting. Even though his skills are scattered from 18 months to 4 years, the magnitude of his growth over the past year is impressive. He was basically untestable this time last year. He's transitioning into an FAA (functionally applied academics) room for next year.

I wonder how much Zhen will grow over the next year. I wonder if he is full inclusion material. The school psych says no, never. I like her, but I would love to see her proven wrong.

My mother came to visit yesterday, and dad is home again, so we had another birthday party last night. Mom and I both bought the same gift for Zhen! Actually, they were slightly different versions of the same noisy siren trucks. That turned out great for Ralph!

Tomorrow is the BIG day. Ralph, Theo and Zhen are having tonsils and adenoids removed in the morning. We are getting this over with in a big way. I'm either crazy or a genius. I guess I will find out which one tomorrow!

Since trying to get the three boys to sleep in a hotel room sounds like more of a pain than getting up at 2am to drive to Kansas City, I'll be an EARLY riser tomorrow morning. Chipper is going with me to help out. He's great with the boys. If you think of us tomorrow, say some prayers for the doctor and the boys to recover quickly.

Oops! Umm...Happy New Year!

2012-01-11T11:05:00.000-06:00

Oops! Happy New Year!!!

I just realized that I totally missed Christmas! haha!

Let's just say that blogging is taking a back seat around here lately. I have lots to share...funny stories, kid craziness, my off-the-wall plans and schemes. I've just been trying to BE with my family as much as a write about them. I was a mom long before I ever owned a computer.

With that said, here are some photos from our Christmas. Hope you enjoy!

I was dreaming of a muddy Christmas. How do you like this Christmas scene?
Richy was home, so plenty of Guitar Hero battles took place.

Grandma Linda came to see us. Ruby was in beauty shop heaven!

The girls dressed up for Christmas Eve but I couldn't get a nice smile out of Rose, until...
...she covered up Ruby's face.
These boys provided quality control for Santa cookies. The cookies were approved, I'm happy to say.

Some sort of record was set as mom and dad were in bed before 1am. Even after a battery run. I guess we will never learn.
Here is the whole crew, minus Wesley who came for New Year's. They are all waiting for the action to start after we got all the little ones to the potty.
No trouble getting smiles on Christmas morning!
The BEST gift, hands down, that was received this year. Zhen has an obsession with vacuum cleaners and this little beauty was just the ticket for him.
Theo enjoying the good vibrations.
Ralph liked it too!
My little drummer boy! This conga drum sounded awesome.
Jordan and his new puppy, Rufus.

Thomas never disappoints with his duct tape creations. He made Chipper his first Superbowl trophy. Oh man did we laugh!!
Leroy got a duct tape sword that say "I AM THAT IS." He loved it! Brownie points if you can guess where this saying comes from!
My little dolly with her new cabbage patch dolly.
Theo working hard on unwrapping.
I think it's love.
Yep. Delicious!
Rose and her unicorn, Cornelia.
I got a nifty new, heavy duty colander. You know what those are good for, right?
What do you think of this ribeye? A great friend gave us this tasty hunk of meat. We cut it up and put it on the grill. Mmmmmm.

January is shaping up to be a stress filled month for me. Four surgeries, two IEP's, scads of doc appointments, birthdays, anniversaries and event preparations. If you think of me this month, will you shoot a quick prayer up for me? Thanks!

Working on it...

2012-01-04T22:29:00.002-06:00

I'm working on a blog post from Christmas. haha! But I've resolved to take better care of myself and family this year. So instead of working late into the night, I'm headed to bed.

I have some other projects to share, too. But priorities are priorities.

Low Expectations

2011-12-19T09:05:00.002-06:00

Theo continues to surprise me. Over and over it seems, I underestimate him. I'm trying to understand why I don't have higher expectations for him.

When we met Theo for the first time, http://psalmsixtyeight.blogspot.com/2010/07/where-to-start.html, the orphanage caregivers told us that he did not understand anything? Did I somehow take that to heart?

Low expectations are partly to blame for the fact that he laid in a crib so long. Starving. And starving for love. May I always remember that and never fall into the trap of low expectations.

He understands:

Yep, it was a big day.

2011-12-16T19:55:00.002-06:00

Guess who came home today?

And guess who was happy to see him?

That's right, Richy is home for Christmas. We've not seen him since May.

And I'm also happy to say that Ralph had a great report today from the cardiologist.

Ralph's pulmonary pressures are near normal after 2 months of being off his medication. YES!! I couldn't have asked for better news at Christmas time.

Big day tomorrow

2011-12-15T22:14:00.002-06:00

Life has been proceeding at warp speed around this house. Therapies, homeschooling, muddy puppies, laundry, dishes, doctor appointments, gotta get home (or out of bed) before the bus gets here!

Now Christmas is almost here, but no time to think about that. Ralph has a cardiology appointment in the morning. Somehow I will get the children fully dressed off to school by 8:30am so that I can get Ralph fully dressed and off to the doc by 9.

My little love went cold turkey a few months ago and quit his pulmonary hypertension meds. (I just realized that I'm having trouble blogging these days because I quit staying up for his midnight dose.) We did this last year and it didn't work so well. He ended up going back on the medication and my hopes that he would outgrow his condition were dashed.

Tomorrow we will find out if Ralph has kicked PH butt or if he'll be back on medication again. It's a big day.

Back soon...

2011-12-13T23:48:00.001-06:00

Been a little preoccupied...

Be back soon.

Pondering thankfulness

2011-11-22T13:08:00.004-06:00

Wow! Where did November go?

I spent the last week in Ukraine getting Project TLC off the ground. Now I'm home and so very thankful, but perhaps not in the ways you might expect.

After living with Ukrainians and spending time with Ukrainians and trying to understand life in Ukraine I'm less thankful for what I have.

Did you get that? I'm less thankful. At least for my material possessions.

I'm more thankful for the experiences and relationships that have blessed my life. I hope to explore this more completely in the near future. But, for today, let me ask this question: are you holding onto something of material value that might be interfering with the relationships of value in your life?

Thursday is Thanksgiving in the United States. Instead of heading out to the grocery store to gather the ingredients for all the traditional American Thanksgiving dishes, I'm going to do something different. I'm cleaning out my freezer.

In the past I have bought things to stick in the freezer, and they are never seen again. Why must I hoard food this way? So today I started with the top shelf. I found a mini loaf of cocktail bread, some fruit and pecans and some freezer burned stuff that went straight into the trash. The pecans will make a nice pie. Ruby and I ripped up the old bread to use in stuffing.

It was fun to spend time with my daughter, working together in the kitchen. I look forward to finding more ways to put relationship over possession as we move toward Christmas.

Sleep Over!

2011-11-07T21:36:00.004-06:00

Ralph finally had his sleep study last night!

New recommendations from the AAP are for children with Down Syndrome to have a sleep study done by the age of four. You can read the updated guidelines for yourself HERE. I don't agree with all of the recommendations, particularly the updates related to AAI and AOI. Read what Renee has to say about that HERE. But, back to the sleep study...

I did sleep studies with Zhen and Theo back in September and that was a disaster! Theo had to have arm restraints and Zhen had to be held down until he went to sleep.

Ralph was a totally different story.

We arrived at the sleep center right at 7:30. Ralph was the only study of the night. We took a look at the room and I was disappointed that they didn't have a crib big enough for him. We set up a side rail on one side of the bed and I planned to sleep on the other side of him.

Next we went to sit in the little room where he would be wired up. Thank goodness for the HUGE mirror on one wall. If there is anything that makes Ralph happy and relaxed, it is looking at himself!

As the technician started applying stickers and wires to his legs and belts with wires around his trunks, I told him that tonight he was going to be a robot. We did a little robot thing with our arms and made some machine noises. This was fun! Ralph was an angel while each little electrode and wire was attached to his head. (Thank you, Yo Gabba Gabba!)

Back in the bedroom, Ralph got a mustache-like sensor applied to his face along with a nasal cannula. It's been years since he has worn a cannula, but he didn't seem to mind a bit. Once all the wires were plugged in, and the lights were turned down, Ralph laid back on his pillow and promptly went to sleep.

Ralph slept fine.

Me on the other hand...I just cannot seem to fall asleep at this place. I counted sheep. I prayed. I couldn't get comfy. I couldn't turn off my mind. Just knowing that I had to take care of children in the morning was making me desperate to fall asleep.

Oh, and when I say that Ralph slept fine, that means that he flopped around and punched me all night long. I did eventually fall asleep, but was regularly awakened by a sticky head of hair in my face. One time I had to grab Ralph before he plunged over the far side of the bed.

About 5:30am we got up and the technician and I removed all the tape and stickers and stuff from Ralph. He went potty, and we headed for home. Not my idea of a fun sleepover, but it was done. And he was a very, very good boy.

I did get to look at Ralph's study chart briefly before we left. He has some obvious issues during certain phases of sleep. I anticipate surgery for him as well and Zhen and Theo before the year is out.

Fun on All Saint's Day

2011-11-01T08:36:00.003-05:00

I took about 50 photos of these children sitting on the steps and not one of the photos was perfect. The experience was something like herding cats! This is probably the best one.

Miss Rose, looking WAY too grown up for my taste.

This morning before school we had a little discussion about All Saint's Day. Then I told the children about Martin Luther and the stunt he pulled on October 31st with his 95 theses. Shame on me for neglecting their education this way, but the conversation went something like this:

Me: You do know who Martin Luther is, right?

Assorted Children: You mean Martin Luther King Jr.?

Me: Umm...no. Martin Luther.

Assorted Children: You mean Martin Luther King Jr.?

Me: No, the first Martin Luther. He was born over a thousand years ago.

Assorted Children: Was he Martin Luther King Jr.'s dad?

Me: Isn't it about time to watch for Theo's bus?

Photo catch up...

2011-10-25T09:10:00.004-05:00

I'm not so sure how Ralph is doing since he stopped getting his pulmonary hypertension medication. What do you think of those dark circles under his eyes?

He's still full of energy. Playing in front of the mirror is his favorite thing.

This is my view in the morning. And at bedtime. All three of them were making poop sounds and laughing! And, do you know anyone who sits Indian-style on the pot like Ralph? So weird.

Here are some leftover photos from our fun day with the McDonald family. This girl is cra-zay about Zhen!

I think this is the best photo we could get of the three Ukrainian boys! ha! At least TJ knows how to ham it up.
See what great lengths we went to? Sit. Stay. Get back up there. Sit. Stay. Smile!!
Cute! Toby was giving Theo some valuable advice.

Crazy boys

2011-10-20T22:49:00.002-05:00

I had so much fun last weekend that I'm still recovering! Here is a small taste of the craziness that I enjoyed while trying to get a nice photo of these three Ukrainian boys:

Is it me, or do these boys all have the same exact color of hair?

Challenge FAIL

2011-10-16T22:51:00.002-05:00

I've failed the 31 for 21 challenge. But that's ok with me.

You see, I have stayed up late for years to give this boy his medicine at the proper eight hour intervals. It would be easier, and earlier in the evening, if he didn't go to afternoon preschool. But, it is what it is.

Or, what it was...

Ralphie had a cardiology appointment last Friday. During his heart echo, I could see that his pulmonary pressures were as low as I had ever seen them. The doctor confirmed this to me later. Low is good. Got that?

I had the choice of letting Ralphie continue to grow out of his pulmonary hypertension medicine, or giving him another two month trial off of the medicine. If you remember, we tried this earlier in the year and were disappointed.

I chose the two month trial. I have no illusions. I'm well aware that this might not work, so my hopes are not high.

But, now I get to go to bed at the same time as normal people. Don't be surprise if this blog continues to suffer the loss of my prime late-night blog time. It's OK.

Beating PH and grinding it into the ground trumps late night blog time. Can I get an "AMEN!"?

Birthday boy.

2011-10-13T22:39:00.003-05:00

I was very busy with my birthday boy tonight. He'll be the first to tell you that he's mommy's boy.
Over sweet & sour pork tonight, he told me that he wants to be an animal doctor. This is new!
One thing is not new. Those eyes. What would you do for eyelashes like that? No fair!

Looking back tonight

2011-10-12T23:04:00.002-05:00

Ralph is four years old. He has great, I mean GREAT, receptive language. He knows heaps of signs. However, he just struggles to hard with the spoken word.

Well, that is starting to change.

Umm, yeah. He's got one word that comes out clearly and without a doubt. Can you guess?

Yup, we have "no." AND, we have a boy with a mind of his own.

When we get home from church and it's time to get out of the van, Ralph slips into the back of the van and give me a "no!" At lunchtime, when he slips away from the table to eat his sandwich on the couch he gives me the "no!" When I ask him to stop strangling the puppy with his particular brand of affection, I get the "no!"

On days like today, it helps to remember when he was really little and really helpless. haha!

Here is Ralph in his car seat for the first time ever, on the way home from the hospital for the first time ever.

And asleep in his own crib for the first time ever.
No way would this sweet little thing ever backtalk his momma.

Ralph and church.

2011-10-11T22:29:00.004-05:00

Gathering with our church family on Sunday morning sets the stage for the week. Without it, I feel a bit disoriented and off kilter. It builds me up, too. So we make it a priority for the whole family.

Over the past four or five years, several children with additional needs have either been identified, started attending, or have been born into this church family. As a result, a Friendship program has been initiated to assist children who need individual assistance to participate in Sunday school classes. There is also a Friendship classroom which is self contained.

Ralphie has been included in the nursery setting since he was very little. He used to push his little oxygen tank around in a toy shopping cart! I've just been so very pleased with the way he has been received and loved. We have pushed through fear, at times, and made things work.

Now that Ralph is four, he is too old for the nursery. I had a little anxiety attack earlier this fall when I realized that he would be sitting through services now. He was just not ready for that.

Thanks to the Friendship program, Ralph has several volunteer helpers for Sunday school. One has worked with him for over a year and is actually a sign language interpreter. It is wonderful to see them working and signing together. She can only attend two Sundays each month due to her work schedule, so Ralph has two other young women who alternate assisting him in Sunday school on the other weeks.

But what about the worship service? What was I going to do about that? Does he look like the kind of child who can sit quietly and listen to a sermon?

This is where the Friendship classroom comes into play. Our fantastic Friendship coordinator was able to find one more helper for Ralph each Sunday. This lovely young lady sits with our family in the back row of the worship service during the announcements and the worship songs. I get to hold Ralph in my arms while I sing praises. I get to encourage him to sit quietly and patiently. When the sermon begins, he and his helper slip out the back door and head for the friendship room to play until it is time to go to Sunday school.

Isn't that great? It works so perfectly! I really feel spoiled by all the love and care given to me and my family at church gatherings. I'm so grateful for the ladies who give up their time and energy to work with my children.

Next time, Zhen and Theo!

blech

2011-10-10T22:03:00.005-05:00

I'm not feeling so hot tonight. HOMY has offered to stay up and do meds for me, so I'm going to hit the sack.

In the meantime, check out the new blog for Project TLC. It's a work in progress but stop by and "follow." Zhen says do it!

Sunday

2011-10-09T23:04:00.002-05:00

I was going to title this post "A Typical Sunday," but upon further reflection, there is no such thing for our family. Instead I will just tell you about today.

Dad is an usher at church and today he had to be there at 7am. My teenager was away at an academic weekend at KU. You know what that means for me. Yup, me vs. eight slippery little kids. The goal is to leave the house at 9:15.

I get Zhen and Ralph up first. The go straight to sit on the potty. I ruffle Theo's hair and then I raise the blinds in the little boys' room so they don't get destroyed by rough hands later in the day. Then I move Zhen's crib so that it sits on top of the air register. If I don't, the boys will stuff all their toys down there later.

Hopefully, the little boys are still sitting down. Zhen is great. He always sits until I tell him to get up. Ralph won't sit too long. When he is done, he is done! Theo waits a little longer while I get Ruby up and sit her on her potty next to Zhen.

Next Theo gets a fresh diaper and heads for the highchair. He gets started on breakfast while I help Ralph, Zhen and Ruby get pants on. Next we flip on the radio, because our rule is "no TV on Sunday morning."

At this point, I'm looking around for my older children. I assign a buddy for each little child a buddy to make sure they eat. We do bagels or cereal before getting anyone dressed. Someone always spills something, right?

This the point where I start freaking out because I didn't lay out clothes and socks the night before. So I start the hunt for matching socks. Ralph, Zhen and Theo get pants, socks, braces and shoes on. No shirts until we are ready to load the van.

Next I have to convince my fuzzball two year old that beauty shop is fun. Sometimes it works, sometimes not. Today she tolerated me combing her hair just long enough to get two crappy little pigtails in place. Good enough.

Everyone is ready to go. Except me. I'm still in jammies and haven't even considered eating. I get 10 minutes to throw on some clothes and a little makeup and we load up the van. I'm usually sweating, so it's nice to leave the house and hit the cool air. Ralph gets buckled up first or else he will end up in the driver's seat pushing buttons and "driving." The other three littles are easy and we roll down the driveway at 9:30.

Late again.

Next time, adventures in the church building.

Buddy Walk fun!

2011-10-08T21:42:00.006-05:00

Can we get going already?

Ready!!
Today was our annual, local Buddy Walk to raise awareness for Down Syndrome. It's one of my favorite events each year. I love gazing at the faces, lit up by the unmistakable beauty of an extra chromosome.

Oh, and the unmistakable flop-n-drop!
Buckle up!

Grab your blue gorilla! And go find your picture along the route.

The event ended too soon due to the arrival of chilly rain while we waited in line for food. Another disappointment is that there were no medals left for our children as they crossed the finish line. I didn't even get photos of that.

On a positive note, we won a gift basket in the raffle and it was delivered to our home by our good friends, the Hendrich's. Hanging out and chatting with them for a few hours was so fun!

October is off to a smashing start!

Best month of the year.

Hands down.

Meet Bruno.

2011-10-07T22:20:00.002-05:00

Meet Bruno. One of the newest members of our family.

He is an English Pointer. For a bird dog, he's extraordinarily calm and mellow. He officially belongs to Jordan.

In keeping with our family's adoption style, he has a minor disability. haha! He's missing almost half a hind paw and a toe on a front paw. He was attacked, along with his puppy brothers and sisters, by an unknown varmint as a wee little baby pup. Could have been a rat, or a tomcat, or who knows.

He's settling in with our family and growing very fast!

I just had to share this photo of Ruby eating beets. This was our afternoon snack. She's so open minded about trying new foods, especially when the other children are away at school. There was no one around to make disgusting faces and noises when I opened up the can of beets!

I actually got some video of her saying, "I love beets!" I'll be saving that for when she's older and refuses to eat her veggies.

The unexpected.

2011-10-06T23:22:00.006-05:00

Parents of babies and children, and adults too, I suppose, with Down Syndrome are typically very deeply in love with their children. It is not more, certainly not less, but different somehow than the love I feel for my other children. It's a kind of "us against the world" type of love that knits two hearts tightly together.

I'll admit, I often carry a chip on my shoulder when it comes to my boys with DS. Because as much and as deeply as I love them, I'm acutely aware that the world typically sees them differently. As less. As less important. As more work. As more trouble. I've come to expect it. And I'm ready for it. I have built a little wall around my heart. And some tougher skin.

And then...

the unexpected happens.

This boy in the stroller, my precious Theo, started Kindergarten last Tuesday. He is in a life skills program at a small school in a neighboring town, but joins a regular ed Kindergarten class for classes like phys ed, music and library.

The school change was rather sudden for my taste and I was fearful and emotional. So, I dropped in unannounced this week and took a tour of the school with him. I arrived with my old friend, "Chip Ontheshoulder," not knowing what to expect.

Theo walked down the hall between his teacher and I for a good long stretch. I decided to carry him when he stalled out near the library. As we prepared to take a look inside the library a class of children was lining up to return to their classroom.

It was Theo's Kindergarten class.

These precious little children walked out of the library and spontaneously lit up when they saw Theo in my arms. Without exception, and unprompted, each child said "Hi Theo!" and cooed over him as they passed.

I could not help myself, I cried. The walls came down. My heart was softened.

I spent some more time looking around the school after that, but I don't remember much else. I had already seen what I needed to see.

Once again I'm blown away. The little boy who laid starving and alone in a crib for four years has people all over the country rooting for him. Now he has a fan club at his new school, too. I wonder if it will ever cease to amaze me?

Beauty shop

2011-10-05T21:16:00.002-05:00

Look who is all ready to go to school! One problem...she's only two! Oh well, we'll just start her out at home.
Look who finally has enough hair for pigtails!

If you only knew how difficult it is to get her to allow me to even comb her fuzzy, curly hair! We play a game called Beauty Shop. She sits on the bathroom counter top where she can see in the mirror, with her toes in the sink, with the water running slowly. I carefully pick out the knots while the water distracts her.

Sometimes it works. Sometimes it doesn't. She is strong willed.

She loves to do school. But is she right handed?
Or left handed?

I'm leaning toward left, as her grasp looks a little more natural. But, she does switch back and forth with ease.

She's a treasure.

How typical is that?

2011-10-04T20:18:00.000-05:00

When Ralphie was a baby I wondered what it was like to have a child with Down Syndrome. I mean, really, he was a baby. He was just like all the other 7 babies I had previously cared for. I was so curious what life would look like when he was older.

Ralph is not a baby anymore. He's four. And now I know. He's just like the 7 other children that have previously raised to this point. For the most part anyway. Communication is his biggest challenge.

He's pure boy.

He's busy.

He's so typical! So much so that I often forget about Down Syndrome altogether.

He's just Ralph.

He puts his underwear on like every other four year old boy I've ever known. How typical is that?

New school for Theo

2011-10-03T14:04:00.003-05:00

I never have cried when my children go to Kindergarten. I never got in the car and raced the bus to school to get their photo stepping off the bus for the first time. Just not my style.

Until now.

Theo is so very delayed. When you take the delays caused by Down Syndrome and then you add severe neglect, zero stimulation, and near starvation for four years you end up with a very damaged child. You can take the child out of the orphanage, but it's tough to take the orphanage out of the child.

Theo started preschool in January, going three afternoons per week. He has made some solid physical gains over the past year. In other areas he is just not making good progress, so I asked to have him reevaluated.

Last Friday we had Theo's IEP meeting and have decided to move him to a new school where he will attend 5 full days each week. It's what he needs. It's what he is ready for.

I wasn't prepared for the wall of emotions to hit me. Theo will be gone...all day long...in a neighboring town. He will have more face time with his teachers than with me. I have to buy school uniforms for him. haha! I'm going to miss him like crazy!

This morning his new bus driver called me to make arrangements for transportation. She sounds quite nice. Very grandmotherly. He gets picked up @8:20am tomorrow. Oh goodness, there go the tears again.

I may have to try to beat the bus and get some video or photos!

He started it.

2011-10-02T21:35:00.003-05:00

I never imagined that I would have a child with Down Syndrome.

I had nothing against it, it just never even crossed my mind. Funny, because I have a cousin with DS. I also have a very close friend whose daughter has DS and shares a birthday with me. (I cringe when I think of the awful questions I used to ask her. Boy was I dumb! That's one reason why I don't really mind when people ask me dumb stuff. I remember when!)

Ralph started it.

Because of him I started blogging. Because of him I met some incredible people, some of them doctors! Because of him I go to Buddy Walks every October. Because of him I learned a new language, filled with acronyms and initials. Because of him I learned some medical skills and can change an oxygen bottle in complete and utter darkness. ha!

Because of Ralph, I did loads on internet research on Down Syndrome. In the process, I found that children with DS are still routinely placed in institutions in many countries in the world. In the process, I found Theo and then Zhen, two orphaned (rejected by their parents at birth) children with DS from Ukraine. They are now a part of my family. In the process I met some more incredible people and darling orphan children.

Soon I'll be headed back to Ukraine to try to help those children live better lives.

Ralph started it.

I'm so glad that he did.

I'm Baaaaack!

2011-10-01T19:16:00.004-05:00

Grab This Button

I'm back from from my unofficial, lamey bloggy break in observance of Down Syndrome awareness month. Each October, I take the 31 for 21 challenge to bring awareness and education about Down Syndrome.

I have three boys with Down Syndrome. Theo is five years old. Ralph and Zhen are 4. My boys are quite young and so I still feel like a newcomer to the DS scene. It's a scene that I'm proud to be a part of.

If you want to join this blogging for DS awareness challenge, visit HERE and sign up. If you have any questions for me, leave a comment. Happy October!!

Theo

Zhen

Ralphie

Sweet 16

2011-09-17T22:09:00.004-05:00

Chipper, not his real name, turns 16 years old today. Of course he's sweet, but he also got to scrape out the frosting bowl!

He asked for an ice cream cake this year. Not my best decorating effort, but still, it's butter and sugar so who cares?

Theo tore into his cake. He can't just sit and wait for a bite. He meets you halfway or more if you are too slow.

Grandma C came over and a few cousins, too.

I did learn one thing yesterday, don't try to make the whole ice cream cake in one day. It needed more freezer time. Overnight would have been ideal.

More miscellaneous photos from yesterday. Rose. She takes a nice picture, huh?

Ruby in her typical pose, fingers in mouth and belly button.

Zhen actually keeping his glasses on! I've not been forcing the issue with the glasses, but I need to. The eye that had the cataract is still not developing correctly.

Adventures in pottying

2011-09-11T23:43:00.004-05:00

HOMY and I attended an open house with Ralphie today. It was one year anniversary of Ralphie's cardiologist's new office.

This is the man who showed up at the hospital in the middle of the night that Ralph was born. In the wee hours, he spent time with us, drew a picture of a heart, and explained all the terms as if we were actually intelligent enough to understand them. If you've been around doctors and hospitals at all, you know how rare that is.

We sat around in the waiting area playing with toys and eating cookies while waiting for our turn to take pictures with the doc. I noticed that Ralphie was sort of quiet sitting in the corner. Then I caught a whiff of something. Oh NO! I didn't bring a diaper bag!

I did a little peek down the back of the pants and was relieved to find that it wasn't Ralphie that I smelled. I took this opportunity to take Ralph to use a public restroom for the first time ever, not counting hotel rooms and church. Well, ha-ha, the ladies room was being used, so the doc's assistant showed me the men's room!

Can I just say that it felt SO wrong for me to be in the men's room with him?! It was just a one seater, so I'm not sure what my problem was. Ralph did great! He did his business without taking every single piece of clothing off like he does at home!

Sorry if you didn't want to read about Ralphie's pottying adventures. It was just a pretty big deal to me. He's come so far from a medically fragile baby to a confident and strong little boy.

And after all those warm and fuzzies I got today, guess who woke up screaming with a fever? Ralph.

He was choking and crying and holding his breath. For the first time in over a year, I got out the stethoscope to listen to his chest. I laid him down in the living room and he snuggled up with Chipper and then puked on him! After that he seemed to breath a bit easier.

Guess who's not going to school tomorrow?

PS-here is Ralphie at Big Truck Night at school. He was too busy looking at himself in the mirror to look at the camera! Little narcissist!

Fun times

2011-09-10T21:08:00.006-05:00

As I was getting dressed this morning, preparing to head out to our local Down Syndrome meeting, I couldn't figure out why my hair looked so greasy! I mean, I just washed it...on...oh golly, I forget. So now you know what sort of week I had last week.

On Tuesday, while packing for an overnight trip with Jordan, Theo, Zhen, Ralph and Ruby, I got cold feet. I suddenly felt that getting up at 3:30 am to drive to Kansas City for Down Syndrome clinic would be less awful than having a slumber party at a friends' house with five children.

So that's what I did, almost. I heard the alarm go off on Wednesday morning. And then I didn't. And then I got up and noticed the time: 4:45am. OH NO!! I threw on my clothes, made numerous frantic trips to the van to buckle children for the ride and pulled out of town at 5:10am.

It's a three hour drive unless you hit the edge of the metro area at the start of rush hour. On top of the stress of being late, the stop and go traffic was enough to give me the jitters. Pegasus, our pretty white van that flies, was in rare form and I was only 15 minutes late. The newly increased speed limit didn't hurt, either.

The folks at the DS clinic at Children's Mercy Hospital in Kansas City are the absolute BEST! Everyone we have encountered there over the past few years has been highly professional and caring. But, four hours in a little room is hard. It's hard with one child. With five it's just nuts. I felt like a caged animal! We had some escapes, some puke, some leaky diapers, and lots of noise. Theo bit one of the therapists. He just crawled over to her and chomped down on her shoe! She let out a little yelp of surprise. Then we had a good laugh.

I was never so happy to head for the hospital cafeteria for something to eat! Ralph had a hearing aid check after lunch. That was a breeze, but still...me, five children and an audiologist stuffed in a little office=no fun. I was so happy to be done with the appointments that I completely forgot to stop off at the lab for blood draws. I realized what I had done about an hour later, well on our way home. I never fail to screw something up!

All the aggravation and discomfort was worth it for this one thing: the clinic pediatrician commented to me that last year, when we arrived at this very clinic with an emaciated Theodore, she did not expect him to survive. She called him a miracle.

I have to agree.

The End...sort of a beginning.

2011-09-05T20:12:00.003-05:00

My friend, Grace, asked me for recommendations for a new facilitator. She and her husband had prayerfully decided, based on numerous reports of intimidation and threats, to switch to a new adoption facilitator before completing their dossier.

I was happy to help and gave them a few names that had made a good impression on me. I was also happy to assist the family in finding low cost lodging with a friend. Since Grace was not using the facilitator that had previously threatened my friends in Simferopol, they were happy to help.

Early in July, I was informed that Grace's original facilitator, whom she was referred to by Reece's Rainbow, had threatened her current facilitator with bodily harm. Additionally, as a result, Grace was asked to please find another place to stay (her husband had gone home after their court date) by my friend who was renting her an apartment.

Grace dropped off the face of the earth at that point. She stopped blogging and sharing photos. Not a happy way to spend the last few weeks of an adoption trip. She's home with her new child now, dealing with PTSD on top of the usual health and bonding issues.

How much more could I take, watching friend after friend being intimidated and abused? Why are families still being referred to this adoption facilitator? Who would continue to do business with such a person?

My ride is over. I have lost hope in the rainbow ride and I'm sick of being sick.

But, the children.

I'm so in love with the children I left behind. Especially the ones who are not cute enough to benefit from a photo listing on an adoption website. The ones who are kept in the back room, out of sight, out of mind. The ones in remote, backwater institutions.

I'm so in love with the idea of adoption. It's not for sissies. It's not for everyone. But, it is as true a reflection of salvation and God's love for us as anything I can think.

So, two things:

1) I'm going back to help the children that no one cares about. This fall, I and two other 'Yolochka' moms are headed back to Crimea to visit institutions and find ways to improve the lives of the children who have not yet been, or may never be, adopted into a family. We also hope to visit with Ukrainian families who are raising their differently-abled children at home. We want to encourage them and love them, too.

2) Are you adopting? Thinking of adopting? I'm around. Ask me anything. I'll share with you here what I know. I'll tell you if I don't know. I love adopting families as much as I love the children who need them. :) Leave your questions in the comment section. If you prefer, you may comment anonymously or you may request that I not publish your name.

At the risk of disclosing my questionable taste in music, in the words of Semisonic's Closing Time, "every new beginning comes from some other beginning's end."

Almost done...

2011-08-29T22:00:00.004-05:00

Sorry, I felt the need to wait a few days for this.

Mildred adopted from Simferopol last year. She was finished in record time and other than her facilitator trying unsuccessfully to frighten her and her husband away from riding the bus, things were smooth.

(Families may pay anywhere from $20-70 per day for a private driver to take them to their child's orphanage or institution for visits. Outrageous. Some families have felt the need to cut back on visits, as these daily charges add up quickly. Why not take the marshrutka bus for less than 50 cents per person? I'll talk about that sometime if anyone is interested.)

Mildred and her husband decided to do a quick turn around and adopt another child right away. They were already USCIS approved and would be able to travel very soon this time. Though their first adoption process went smoothly with their original facilitator, they knew of the threats and intimidation that other families had experienced with him. This time they wanted used their own facilitator.

When they contacted RR to formally commit to the child they were pursuing, they found out that RR would not assist them in obtaining the information that is required to submit a petition for this specific child. The child's full name and location are required information to ask the adoption authority for the child's referral. So, they were forced to hire a facilitator to track down the child's information. Let's call the child Little J.

Around this time Clarice, who was also in the process of adopting from Ukraine, found out that the child her and her husband were pursuing was not available. The circumstances were beyond any one's control and they would need to choose another child. I assured Clarice that the director of RR would probably be able to make helpful suggestions for her as she had done for me in the past.

I was chatting with another adoption world friend that next week when the subject of Clarice came up. She told me that Clarice was considering whether to pursue the adoption of Little J. My heart sank. My sweet friend Mildred would be crushed if that happened.

I took a big chance and sent an email to Clarice, asking her to please call me. We talked about her situation a bit. Clarice told me that she was feeling pressured to commit to Little J quickly. It was then that I told Clarice about Mildred and her husband. Both of these families are so gentle and kind. It was my pleasure to put them in touch with one another. In an email shortly after, Clarice wrote, in part:

"I had been feeling guilty about not committing to [Little J], especially because I didn't feel as led to him as to some other children. I just didn't know what to do. Getting that call from Stephanie was a miracle, I was so happy to hear that [Little J] had a family nearly ready to travel to get him."

I thank God that I was in the right place at the right time to intervene in this situation. It turned out happily, for both families are home now with a beautiful new child each. Mildred with Little J and Clarice with her sweet new daughter.

I'm telling this true story to illustrate the difficulty and possible dangers involved in choosing to use your own facilitator when dealing with RR. As things stand right now, RR will not assist you in obtaining the information required to adopt a child if you choose to use your own facilitator. It is my sincere hope that this changes in the near future.

Riding the Rainbow Part - whatever number we're on now...

2011-08-24T23:04:00.003-05:00

The events of February 2011 were shared privately among a the subscribers to the blog I set up to help families adopting from Yolochka. Over the past year, the blog had turned into a collaborative effort with each family added as authors once they were in Ukraine. I would add new families as they made commitments to children at Yolochka.

Since there were a few families in process, no one was willing to talk publicly about what happened at that time. There are so many things that could go wrong. The time was not right.

It's important to understand that one facilitation team is responsible for providing the majority of photos and basic information about available children to Reece's Rainbow. They break the laws of their country to do it. (I'm not going to debate the merits of photo listings here. Just important to know that it's unlawful according to Ukrainian law.) According to the director of RR, the organization receives no referral fees from this team.

The notably threatening and intimidating facilitator belongs to this particular team. Or the team belongs to him. I don't know. I do know that his behavior has put Reece's Rainbow into a huge bind. If RR were to stop referring families to this team, they may lose access to additional information on available children. Their Ukrainian photo listings may cease. So far, to my knowledge, Reece's Rainbow has yet to apologize to any family abused by this team. In fact, they continue to refer families to this team.

Based on the multiple reports of threats and intimidation by the notable facilitator, one family decided in the midst of their process to make the switch to a new facilitator. Another family, prior to making a commitment to a child, also made the decision to use their own facilitator.

Their stories next time...

OK then...

2011-08-22T20:58:00.000-05:00

OK then...this gives me no pleasure, but I will continue.

Mere minutes after I learned about the threats made toward Mattie, I sent an email to the Reece's Rainbow director explaining the situation. After a few emails back and forth, I was reassured that she would have a "stern discussion" with the facilitators in question and that they do not speak for her or RR.

During the following weeks I also learned that a personal Ukrainian friend received a threatening phone call. He was warned not to help any adopting families, or else. I hesitate to even mention this because I cannot prove it, but this person was a good friend to me and several other adopting families. I believe that his phone number was harvested from the cell phone I used in country.

Things were fine for several months. I was able to help several families find inexpensive accommodations in Simferopol and navigate the public transportation system there.

Then on February 11, 2011, at 3am the phone rang. It was Allie! From Ukraine!

Allie didn't have my phone number. We normally emailed each other. Amazingly, she had looked our phone number up on the internet. Thank goodness we were the 2nd listing. I feel sorta bad for the guy who was number one and was called at 3am by mistake! It took me a moment to focus and understand what she was saying. She told me that an adopting family had been verbally abused by their facilitator. Apparently, he threatened to stop their adoption and told them to go home. They needed to speak to me immediately.

Oh dear.

This family had been under fire from their facilitator almost from day one. The facilitator thought it was inappropriate for them to go sightseeing. The facilitator didn't want them to fly to their region instead of taking the train. The situation came to a head on the day the family visited their older daughter and took a friend to help them translate.

(A side note: when you adopt from Ukraine, depending on the facilitator you use, you will not have an interpreter with you all the time. In the case of my team, I had an interpreter on the day we met our children, the day we had court, the day we traveled for new birth certificates, and passport day. Four or five days total. Ideally your facilitator is available to interpret for you by phone when you need them, but they are often very busy and it can be fun to figure things out on your own. Brush up on your charades!)

The family was adopting an older child who was quite a talker! They simply wanted to be able to communicate with her during at least one visit. Their facilitator had left town and would likely not have been available to interpret over the phone for a whole hour or two. Before the family even got into the door that morning their facilitator was calling and yelling and threatening to stop their adoption.

I called the family immediately and attempted to calm them. I won't go further into details here or this would be a book. The adoption did proceed, with the same abusive facilitator, at great personal emotional cost to the family. For instance, they were warned by their facilitator not to go anywhere, not to church, not to the valentine banquet for which they had already purchased tickets. Of course they would do anything they were told at that point, because the lives of their children depended on it. Is that a happy ending? Two children were given the gift of a family, of life. I don't know what to think sometimes.

There is more...

There are those...

2011-08-21T01:02:00.003-05:00

There are those who would rather that I not finish my story.

There are those who claim that I would be harming an organization that is doing good work.

There are those who feel I'm obsessed and self-centered.

There are those would prefer to let bygones be bygones.

What do you say?

Riding the Rainbow Part 6

2011-08-10T22:51:00.002-05:00

Part 6 - Where the ride starts to make me dizzy.

On February 18, 2011 I receive this comment on my comment moderated blog:

"I am curious (After seeing your comment on another blog) if you had a less than stellar RR expierence? I think if you did (or didn't even) you should share that so other future adoptive parents have resources.
By Anonymous on Wordless Wednesday? on 2/18/11"

I couldn't discuss this at the time and didn't publish the comment until many months later. But I promised myself to discuss it publicly when the time was right.

My Reece's Rainbow adoption experience was not a bad experience, if you don't count getting royally ripped off for passports. I made my own lodging arrangements, made some incredible friends, and fell in love with Ukraine. My post-adoption experience is a different story. Though I do have permission to share these stories in which I was involved, I have changed some names for privacy and security purposes.

As I mentioned, I kept my eyes open for other Reece's Rainbow children every day at the orphanage. Sometimes I would saunter over to a group of children that I wasn't really supposed be visiting if I spotted a vaguely familiar face. I might guess the child's name and if I was wrong the ladies would correct me.

I saw Sugar every day since she often shared an empty playpen with Zhen. Her parents were to travel shortly after us. Unfortunately, between paperwork problems and poor communication with their facilitators, many of their documents expired and had to be completely redone. They didn't end up traveling until February of 2011.

I spotted Janie one day playing under the shelter next to the one used by Zhen's grouppa. I was able to successfully try out my zoom lens and snag some photos for her family. Poor Janie had her head shaved and I wasn't sure it was her at first. I wasn't sure if it was a boy or a girl! But, yes, it was her. My husband fell in love with another little girl in her group, Marianna, so we made excuses to go over and chat with their caregivers. James said we would have come back to adopt her, but sadly, the orphanage attorney told me that she had "parents."

Janie's family, the Doe's, were the next family to travel. I put them in touch with my friend, Allie, who helped them find an inexpensive apartment for only $20 per night. This apartment was owned by Mattie, a dear friend of Allie. Allie was even kind enough to personally pay a cleaning person to get the apartment freshened up for their arrival.

On the morning of November 3, 2010, I received this message from Allie that read in part,

“The Doe family's interpreter just called Mattie (btw - She is a Christian friend that I have known for 15 years here) and said they needed the key right now. Mattie told them that they would have to wait a bit until she got there (she teaches at the university). The interpreter got on the phone and blasted Mattie -- even threatening to kill her and cussed her out profusely.

Then another man - who said he was the director of your organization (RR?) got on the phone and also threatened her. Mattie hung up on them. I don't blame her. HOWEVER, they got off the phone and told the Doe family that Mattie had threatened and cursed them. I say all that to say, I don't think I am willing to help others from your organization at this point."

The Doe family was then taken to an apartment arranged by their facilitator. In an email, Mrs. Doe told me,

"It was twice the amount of the other apt and did not have internet access. The owners, who lived upstairs, let us use their computer a couple of times but they worked until 8 and we didn't want to inconvenience them so we found an internet cafe on our own. We were set up with a driver who cost us $30 per day. When I asked about using the bus I was told how very unsafe it was and discouraged to try it."

To be continued.

Riding the Rainbow Part 5

2011-08-05T23:25:00.004-05:00

Coming home from Ukraine was HARD. Jet lag was ten times worse coming home than going, and I had to hit the ground running. After being gone for 40 days and depending on the kindness of friends and strangers, I found that I wasn't done needing help. I was just done feeling like I had a right to ask for it.

Theodore was hospitalized in Kansas City less than a week after we got home. I had taken him to the Down Syndrome clinic at the recommendation of my poor primary care doc. I felt kinda bad bringing a half dead/dying child into his family practice, but we had to start somewhere. The doc at the DS clinic took one look at Theo, called the nurse to bring oxygen and had him immediately admitted.

I had three other children with me that day, at a hospital three hours from home, with my husband out of town. I was forced to make a very tough decision that day and break a promise. After visiting with Theo twice a day, everyday for weeks and then handing him back over to the people who failed to care for him properly for four long years, my solemn vow to Theo was for me to never leave him ever again. I left him in Kansas City. Three hours away from home. Alone.

The next day, back in Wichita, I called the Kansas City Down Syndrome Guild to see if anyone could visit him in my absence. I don't know who visited and cuddled with him until I could return a few days later. If it was you, and you know who you are, I thank you!

For ten long days Theo was in the hospital in Kansas City. Initially suffering from refeeding syndrome, he continued to lose weight even after his feeds were reintroduced. Finally after some not-so-fun day-long blood tests we had our answer...growth hormone deficiency, likely brought on by severe neglect. I spent the next month attempting to get him started on hormone shots, and finding a way to pay for it!

As we settled in with our new sons and adjusted to the new normal, I found a new passion...I turned my attention toward assisting the other families who would soon be adopting from Yolochka.

Riding the Rainbow Part 4

2011-08-01T22:31:00.003-05:00

Ready for some weirdness?

Meeting our boys for the first time was an experience I'll never forget. Zhen clung to my husband like he knew...this was his daddy. The workers in Theo's room were clearly unprepared for any child under their care to receive a visitor, much less a set of prospective adoptive parents. He was a unresponsive stick figure baby in tie up jammies and a huge ball of a diaper. When we arrived for our first official visit the next day, one of the workers asked us, through charades, if we were really going to take him home. She was moved to tears that we came back. She obviously expected us to reject his referral after that first meeting. Perhaps that is more sad than weird.

Like any good Reece's Rainbow mom, I kept my eyes open the other listed children in the facility. I found it difficult to reconcile the photos to the actual faces at first, but soon I had found several of the children I was looking for. Aloysha, for one, was in Zhen's grouppa. I was so happy to learn that he had a newly committed family and one day I was asked by the orphanage attorney and our facilitator to get an updated photo of him. To my surprise, I was directed to take a photo of a completely different boy. Over the next few days I uncovered the fact that Alyosha's family had committed to him on the basis of the photo of a completely different boy! I was in a very difficult and heartbreaking situation. What should I tell the family who asked me to be on the lookout for their prospective son? They ended up prayerfully choosing to pursue the real Aloysha, but what about Oleg, the boy in the photo who almost got a family? I was able to get new photos of him and he got his very own listing on the RR site shortly thereafter. (This story has a happy ending as Oleg was adopted and brought home to the USA just last week.)

On another weird note, I was contacted by a family that hoped to adopt a little 4 year old boy in Theo's grouppa. I blogged about meeting him one day and they emailed me with lots of questions. This part of my trip was so very weird that I'm not even sure I can relate it without totally confusing you. Apparently this family had asked some missionaries to go to the orphanage and make some monetary donations for him. They wanted the missionaries to beg the director to keep him in the baby house and not transfer him to the mental institution. (All the children in this facility are transferred at the ripe old age of 4.) Knowing that the director was bound by law and concerned for the good reputation of the missionaries, whom I consider to be dear friends, I asked them not to do this. Later, on September 28, when I inquired with the adopting family about their timeline, I received this message, " we believe that you are the person that put many of the children at Yolochka at risk. Many of them will be transferred, now, due to your intervention." Crazy! How could I be personally responsible for the transfers? They've been happening for ages. (This family did end up adopting, in the spring of 2011. No one could have kept that child from being transferred for so long. I know I did the right thing.)

A word of caution here for adopting families...keep the safety and good name of your missionary contacts in mind. The adoption world can be ugly. That is all I'm going to say about that for the time being.

I found the passport application process to be quite unnerving. It was like going to see the wizard where you wait at the door forever waiting to be admitted. We waited for a very, VERY long time in the hot, hot sun. My facilitator even asked me to find some shade for the children. When we were finally admitted there was a huge, empty, AIR CONDITIONED waiting room. What was the purpose of making us wait out in the hot sun? I had paid my facilitator in the car prior to ringing the bell. She insisted on $300 in US Dollars for each child. "The families who were here just a couple of weeks ago only paid $200," I protested. I had only budgeted $200 each. I took the extra money out of my food envelope and gave it to her. What was I supposed to do? No real choice here. And why couldn't I just pay the passport lady myself? Weird. (I recently learned that passports only cost 550 Grivna, or $68.75. What happened to the extra $462.25?)

Wow, this is getting long. Are you still with me? Did I tell you about the day we sat at the bank, trying to close our boys' pension accounts? It was a long and tiresome afternoon. The bank wanted one more document...that our facilitator apparently didn't have. There was yelling. There were phone calls. There was a dog wandering in and out of the bank. The security guard yelled at my son, Wesley, when he closed his eyes for a moment. Apparently the guard, who was smoking and constantly rearranging chairs and telling people where to sit, thought he was going to take a nap!

Eventually the teller counted out a HUGE stack of bills. Our facilitator asked me to go out in front of the bank and yell for Dima. What? Who is Dima? (He was the orphanage bookkeeper, how was I to know?) Why is he hanging around out front of the bank? Dima arrived and stuck the HUGE stack of cash into a folded up newspaper and walked out of the bank. We were done. Weird.

Our understanding was always that we would donate the money back to the orphanage. I have since learned that this is not an expectation on the part of the orphanage director. The money belongs to the children and can be used for their therapy or medical bills or whatever the parents decide. I do not believe that it is wise to present cash to the orphanage director. Our boys had many, MANY thousands of US dollars in their accounts. That is an incredible temptation in a land where salaries are low and corruption is prevalent.

My advice to future adopting parents is to find out ahead of time how much money is in the child's account. The director should have the child's bank book. Don't wait until the last minute or you will run out of time. If you wish to donate this back to the orphanage, ask the director what would be most helpful for the children and then plan a shopping trip to purchase the items yourself. Be certain that your facilitator understands your plans well in advance.

OK, is that enough weirdness for one day?

***UPDATE*** Added August 2
The issue of passport prices is a fuzzy one. We received the blue passports and waited almost a week for them to be available. My understanding is that you can request expedited service for an extra fee. How that works is unclear to me. In regions where red (and ready on the same day!) passports can cost quite a bit more. Up to $1000 US.

I'm very interested in YOUR passport experience. How much did you pay? In which region? Who did you give the money to? Post anonymously if you wish, but be honest.

Intermission

2011-07-30T17:16:00.002-05:00

For your entertainment, we present the Brother/Sister Dance off.

Riding the Rainbow Part 3

2011-07-29T20:37:00.005-05:00

Our adoption paperwork process was quite an experience. I'll never forget the day we received our dossier packet by email shortly after our commitment was made. Contained in this collection of documents was our child specific petitions. These petitions contained our prospective sons' real life names and birthdays!

Gora Oleksiy & Dozhikhov Evgeniy Andriyovych

The very information that was needed to request to adopt them! I treasured these names and used them to pray for my future sons.

I had never seen names like these before. Last name comes first, first name in the middle, and middle name last! Very strange and new to me. Of course I did a little research and found that it was due to the patronymic naming system used in much of Eastern Europe. A child's middle name is a version of his father's first name. Zhen had three names, one was a patronym. Theo only had two names listed, no patronym, which caused me to wonder and speculate. Did his mother not know who his father was? Was she raped? Later I learned that the facilitators who obtained this information just didn't think it was important to include. No big deal.

Looking back, I can say that our paperwork went quickly and smoothly. At the time, though, it seemed to be one time-wasting drama after another. Getting the required information about our home from the county appraiser was like pulling teeth. I was convinced at one point that our adoption was over because of the resistance I encountered there.

Among my other possibly adoption-ending dramas was the day I was compelled to track our doctor down AT HOME to get a paper signed before an important deadline. As I stood on his doorstep, dying of embarrassment on the inside, I kept reminding myself that my boys lives were at stake. The very same day I caught my social worker at the salon and then later at hardware store after my notary stamped over her signature!

(It's pretty ironic that we have to prove we are not insane in order to adopt. The process is more than enough to take some of us over the edge!)

One other item of interest in the dossier packet was a blank power of attorney. Looking back, a bit wiser, something in my gut says it is not a good idea to sign and notarize and apostille a blank power of attorney and send it over to an Eastern European country.

It took us from the beginning of February until the end of May to complete our dossier and mail it to Ukraine. Not bad, huh? Our translated paperwork was submitted to the SDA, the Ukrainian adoption authority at that time, on June 3rd. We were invited for an appointment on July 14.

Our process in Ukraine was fairly predictable but periodically punctuated with weirdness. Next time...

Riding the Rainbow Part 2

2011-07-28T00:38:00.011-05:00

It might be helpful to back up a bit. I've been riding the rainbow for nearly four years now. Would it be helpful to know how I got here?

I became an Internet research bloodhound after Ralph was born, sniffing out anything related to Down Syndrome and pulmonary hypertension. I also turned into an accidental blogger, to more efficiently communicate with friends and family about Ralph's serious medical condition.

When I stumbled across an organization called Reece's Rainbow, I found to my horror that children with Down Syndrome were treated like garbage in many other countries, hidden away in remote institutions, deprived of loving human contact and necessary medical attention.

My God!! What if Ralph had been born in Eastern Europe?

That thought alone drove me to advocate for children listed on the RR site. I used my blog and my credibility to raise funds for specific children and families. I even got my quilting group to donate a beautiful hand-made quilt to give away. I stayed up late at night to pray for the children one by one and read adoption blogs.

I was sure we would adopt a child with Down Syndrome when Ralph's health stabilized. And as soon as I convinced my husband that it was a great idea! We couldn't get enough of Ralphie! The convincing wasn't that difficult to do.

Two years passed. Ralph grew. He became healthier and more awesome, if that was even possible. Then darling little Ruby came along and delayed my adoption plans by another year. Finally, in January of 2010 at dinner with my husband, on my 40th birthday, the decision was made.

We would adopt a child through Reece's Rainbow.

Riding the Rainbow Part One

2011-07-26T13:58:00.008-05:00

When I travelled to Ukraine last summer to adopt Theo and Zhen, I had a really unforgettable experience. The trip was hard, physically and emotionally, but I had friends to smooth the way and give pointers. Thank you Toby and Suzanne, and Ken and Nance. I was also warned about problems with our facilitation team, but I put this information out of my mind. After all, based on the dozens upon dozens of adoption blogs I had read over the years, I could completely trust Reece's Rainbow and their Ukrainian facilitation team. Besides, it was too late to find another facilitator.

Boy did I feel like an idiot when nobody was waiting to meet us at the airport in Kyiv! My husband trusted me to make these arrangements. In my sleep deprived and weary state, having let him down, I had my first nervous breakdown of the trip. Thanks to a friendly taxi driver who showed us where to change money and find internet, we were able to contact friends in the US and get help.

In our region, Crimea, we had the good fortune of renting an apartment by the month. This way we paid a little over $17 per night. Not bad, huh? I'm so glad we made our own lodging arrangements. We enjoyed Christian fellowship as well, making friends with local missionaries and Ukrainian Christians. We opted for public transportation and walking in lieu of a daily driver. This alone easily saved us many hundreds of dollars.

Never once, did I feel unsafe or threatened. Perhaps it was all the prayers being said on my behalf. Even walking through wooded areas where homeless men were camped, or footpaths between ugly, hulking concrete apartment blocks, or stepping over passed out drunk people, I felt confident and safe.

Out of deep appreciation for the people who helped us along in Ukraine and a desire to share my unforgettable in-country experience, I set up a private blog for the families who would be heading to Simferopol. Here I shared tips on riding the bus, where to eat, what apartments were available, site seeing and so on. Why shouldn't everyone have a great time in Crimea while adopting? It is a tourist destination, after all.

To be continued...

Theo's wheels.

2011-07-22T01:12:00.002-05:00

Look what Theo brought home from physical therapy today! WOW!

You don't even know what a difficult time I had getting these boys to stand next to each other. Isn't it amazing to compare the size of these children, Zhen, (age 4), Theo (age 5), and Ruby (age 2!)? Do you want to be blown away? Keep reading...

Here are Zhen and Theo together almost a year ago:

Theo was TINY! Even Zhen was much smaller. The changes in these two are so dramatic, but I don't see it happening. I have to look back to fully appreciate the way these two have grown and changed. It makes all the tough times worth the while.

Adoption = Redemption

Hanging around the house.

2011-07-21T22:37:00.003-05:00

Ralph is four years old now. He's really blossoming!

Each week his speech therapist tells me what a hard worker he is. He sits still and pays attention like a big boy. He has great receptive language, that is he understands nearly everything I say to him.

But, he's so typical in so many ways. His favorite new word, and he really on has a few real words, is "No!" Ralph's word for no sounds like the "n" sound and is usually accompanied by folded arms and a toss of the head. He's a little stinker, I'm telling you! And when he says "no" he means "heck no and you can't make me!"

Any ideas?

Poor little Ruby is still recovering from her ear infection. Little darling is having a rough summer. Thank goodness she has a big sister! When the little boys get too rough she can slip away with Rose and play dress up.

It's been so hot here that the little kids go around in diapers unless we are going somewhere. And we don't go anywhere but therapy on Wednesday and Thursday mornings. We are so bored that we have resorted to games like this:

Perhaps the extra money I'm spending on air conditioning is balanced out by all the laundry I'm not doing? Wouldn't that be nice?

Resilient

2011-07-17T20:09:00.002-05:00

Resilient:

1. (of a substance or object) Able to recoil or spring back into shape after bending, stretching, or being compressed.
2. (of a person or animal) Able to withstand or recover quickly from difficult conditions
3. Theo

I cried myself to sleep the evening after I met Theo for the first time. The last time I cried out to God like that was when we didn't think Ralphie would survive shortly after he was born. I don't have the words to describe my rage and heartbreak.

One year after we found Theo in such awful condition that we were reluctant to even share about it on this blog, he is gaining the confidence and strength he needs to walk independently. Just look!! He just started doing this today!!

Yesterday, Theo was playing around in the living room doing his little planks and pike positions. He really wants to be a big boy, walking and running like everyone else. Suddenly I noticed that he was slowly raising his upper body...he was going to stand up! Stand up without anything to pull up on!

I began to involuntarily squeal! Actually, it was more of a scream. Theo did indeed stand up but I screamed so loud I scared him and he fell back on his butt!! I'm continually blessed to call myself his mother. My boy keeps smashing low expectations. He's tough. He's a survivor. He IS resilient.

Rushing to the pool party.

2011-07-16T23:35:00.002-05:00

Just got home from our annual baseball swimming party. We finally got wise and arranged for a babysitter for the little ones. I had a much more relaxing time without chasing children and counting heads and being nervous in general.

I wasn't about to sit by the side of the pool today. Who wants to sit in 100+ degree heat and watch others enjoy splashing in the water? Not me.
One problem, I didn't have a suit and we were running late. Rose said, "Mommy, how about Target?" Sweet, bright girl! We stopped there on the way to the party and I found a suit on sale for $10!

Too bad the pool water wasn't cold and refreshing. It's just been so hot here for so long that the pool felt like a bathtub. Yuk. After dinner as the grownups sat around chatting I felt really uncomfortable. I kept shifting around in my chair. It felt like I was sitting on something, but there was nothing in the chair.

By the time I figured out what it was, it was 10pm and we were on our way home. I couldn't wait to the suit off and remove the plastic hygienic shield. That's what I get for being in a hurry!

I'm looking forward to 106+ degree heat all of next week. NOT!! Fall cannot come soon enough.

More real life...

2011-07-14T21:01:00.006-05:00

I debated whether to publish this or not. The last thing I want is for people to think I hate my life! But, I'm committed to keeping it real. You can find beauty and love in a harsh environment. See?
I noticed that Ruby's right ear was red and swollen yesterday. I suspected an outer ear infection. This morning she woke me up crying and I saw that the redness had spilled out onto her face. Time to see the doctor.

But, Thomas had to be at church at 9am for his Thursday summer youth activity. And Theo had therapy at 10:30. And Zhen had therapy at 11:30. I didn't want to wait until after lunch for Ruby to get seen.

I had to make a decision, and quick.

I grabbed the little kids out of bed and...oh goodness. Poop. I quickly threw Zhen into the tub. Did you know that anti-bac hand soap is pretty decent shampoo? There was not time to get little kids dressed so I stuffed their clothes and shoes in a bag and we loaded up the van.

Thomas was on time, but I was stressing out about taking 7 children to the minor emergency office. I was fortunate to run into a friend who took four of them into her home and fed them some breakfast while I took Ruby, Zhen and Theo to the doc. Half a circus instead of the whole crazy one!

I dressed Zhen and Theo in the waiting room and put their shoes on while we waited in the exam room. Ruby received quick and efficient service today and we were out of there with a prescription in no time. On the way out to the van I happened to look down and noticed something on my shirt. Guess what?

I thought I was so careful picking Zhen up out of bed! The half dried out baby wipes in the van just couldn't cut the poop. Oh well, nothing to do but put one foot in front of the other. I had just enough time to pick up the other kids and head across town to therapy.

I treated the kids to McD's while Theo has his PT, and then let them play in the playroom while Zhen had his speech therapy. Poor Ruby. I had to keep her strapped into the stroller while the other kids played. I wouldn't risk her exposing any other potentially fragile kids to her brand of ear and skin germs.

I couldn't stomach dragging all the kids into the grocery store pharmacy that we use so I dropped all the kids off at home. (And I changed my shirt!) Big brother Chipper was home from weight training so he had the privilege of feeding them lunch while I took a time out at the grocery store to get Ruby's medicine! ha!

Did I mention that all morning long certain children kept reminding me that I promised to take them to the pool today? Oh yeah. I took them. For 30 minutes. It was the very best I could do with dad out of town and my only teenager in football camp every evening. There was more drama involving paperwork, signatures, and a whacked out printer/scanner that I'd like to punish severely.

I lived through all this. I tried to love through it, too.

Tonight my husband is home again. My children are sweetly sleeping. All is well.

Therefore, I urge you, brothers, in view of God's mercy, to offer your bodies as living sacrifices, holy and pleasing to God--this is your spiritual act of worship. Romans 12:1

Or else.

2011-07-13T14:41:00.005-05:00

Every afternoon until bedtime Zhen's good eye gets patched. We cover up his good eye to force his brain to use and improve vision in his bad eye. It's a mind trick.

Can you imagine any self respecting 4 year old allowing this monkey business? Nope? Neither can I.

But it is what it is. And I'm his mother. And I will not put his eye doc's children through college for nothing. He will wear the eye patch. And he will wear his glasses. Or else.

Each day I put on the patch. I give him an opportunity to wear it like a big boy. I put his glasses on over the patch. I give him an opportunity to wear them like a big boy.

No? No big boy today?

Ok, then we get the no-nos out. Having his arms straight makes it much harder to get the patch and the glasses off. Well, at least it slows him down a bit.

The stinker has learned to use his feet to take off his glasses and eye patch. He can also wiggle out of the no-nos like Houdini. This is when I pull out my big guns...the footie pajamas!

Too bad it's 100 degrees outside today. I don't think this is a good way for Zhen to live everyday, but it's what are dealing with right now. And right now is all I've got. He's actually pretty happy once I get him suited up and he can't mess with the glasses and all.

I just realized how much he needs a haircut! That will be an adventure for another day.

Eyes of a Child

2011-07-12T18:01:00.010-05:00

In the eyes of a child there is joy, there is laughter
There is hope, there is trust, a chance to shape the future
For the lessons of life there is no better teacher
Than the look in the eyes of a child

On occasion you will hear me complaining about Zhen's eyes. Seriously, why couldn't the orphanage arrange to have his cataract removed when he was a baby? Then his vision could have developed normally as he grew. The sad truth is that in Eastern Europe, babies with disabilities just don't get the medical care that they need.

Then I stop whining. And I'm thankful. For I remember a bright and beautiful boy that I met at church in Ukraine last summer. Meet Andrei...

About two years ago, Andrei was having some problems with his eyes. His parents took him to an eye specialist in Kiev who recommended laser surgery! Cool huh?

After the laser surgery was performed, the doctor came out to talk to the family and said... "Oops, we made a mistake and your son is now blind in that eye". (Can you even imagine?! The word "malpractice" comes to my mind.) The doctors did not operate on the other eye at the time, (thank God!) but said that it would need surgery in the future.

Over the course of the next two years, Dema and Marina, Andrei's father and mother, home schooled Andrei because the doctor said that a blow to the head or a fall could make him permanently blind. Now, I ask you, is that any way for a young boy to live, in fear of getting bonked on the head or falling down? No rough housing with his little brother? No running?

Now Andrei is now down to 50% vision in his one good eye.

What a nice looking family! Andrei's father leads the singing at church and teaches young adults. His mother is the church pianist. This photo is a couple of years old.

Last Friday, Andrei was having some problems with his eye and so the doctor wanted to take his eye out (!!!) and coat with silicone to help preserve the eye. Well, instead of that (sheesh!) we would like to get Andrei to the United States as quick as possible so that the doctors here can work on him. Marina had an appointment today at the US embassy in Kiev and thankfully, she was able to get the visas they need to leave Ukraine right away.

In a couple of weeks Andrei and his mother will travel to Chicago. A doctor there believes that he can help save his one good eye. A nearby church has agreed to host mother and son for one month while Andrei receives treatment. The good doctor cannot treat Andrei for free, but he will reduce his fee. What a great opportunity!

In keeping with our mission to improve the lives of children in Crimea, Project TLC would like to assist this family with their expenses. We will dedicate contributions received over the next two weeks in order to preserve what is left of Andrei's limited eyesight.

The total projected need is at least $2000, so please share this far and wide, and donate as you are led. You may use the Paypal button here:

Or you may send your gifts to:

His Kids Too!
219 – B Delta Ct.
Tallahassee, FL 32303

*note Project TLC on check memo

God bless you!

At the ballpark with the littles.

2011-07-07T22:16:00.004-05:00

The summer rec league baseball season is quickly coming to a close. I don't always get to see my children's games because I'm home with the littles, Ralph, Zhen, Theo and Ruby. It has been quite hot lately and I don't like to take them out in it.

It was a little cooler tonight and I wanted to catch Thomas' game so we loaded everyone up. The ballpark was practically dead with only two games going on. It was nice to let the littles have a little room to run.

Grandma came along, too. I'm glad because I wanted to try out my zoom lens tonight. I got some good action shots of the team.
Ralph had fun pushing his brothers and sisters around.
He had to really put his back into it!
Theo loved being outside in the fresh air. He's always happier when we are outside. The weather will be heating up again tomorrow. I'm so glad we got out of the house tonight.

Resourceful or redneck? You decide.

2011-07-06T22:52:00.002-05:00

We had a lot of fun on the 4th of July. Thomas and Chipper have been working a big tomato patch in exchange for fireworks. Together they earned about $200 worth of fireworks, so we had to get started while it was still light!

We had a ton of rain the night before, but we still enjoyed snuggling on a damp blanket in the grass.

Oooh! Aaaahhh!

Last night Chipper came home from football camp and told me that he didn't get to participate because we had not turned in a physical form for him yet. *Sigh. So early this morning I took him to the chiropractor to get his stuff signed. I needed to get home by 9:30 to get Ralph and Theo to therapy on time.

While I was gone with Chipper, my awesome babysitter, Thomas, fed Theo breakfast and got him dressed and ready to go. I got home just in time to throw Ralph and Theo in the van and take off for the east side of town.

Ralph's speech therapy was first, thank goodness. I found Theo's hair smashed full of dried on breakfast...and...he needed a fresh diaper. What to do? I took him to the bathroom and gave him a bath in the sink! He loved it! The hand soap smelled really good, too. I'm still trying to decide if I'm resourceful or just redneck.

No matter, he was clean and fresh for his physical therapy a half hour later.

New specs!

2011-07-01T13:47:00.002-05:00

At long last! Zhenya's new glasses have arrived!

What do you think?

He doesn't seem to mind wearing them...until he's done wearing them. Plus, I have to patch his good eye every afternoon. Sooooooo, he's got his no-no's on under his long sleeved shirt. LOL!

Those arm restraints make him look like a little tough man!

So far we are loving those unbreakable Miraflex frames! I can't wait to get a pair for Theo who, if possible, is even more destructive than Zhen!

Meet Jordan.

2011-06-23T21:42:00.002-05:00

I know I'm not supposed to have favorites. But I'm not perfect. And he is so sweet.

Those eyes. They get me every time.

He was the man of the house this week with Thomas away at camp and Chipper helping with tornado clean up in Joplin. He taught Zhen to play ring around the rosy and more! He's a great kid.

The Hunt

2011-06-19T22:28:00.005-05:00

Mr. Blue Eyes survived his cataract surgery and the awful recovery. Weeks of restraint and tape and tears are over. Well, sort of.

We've entered a new phase of cataract recovery. His brain must learn how to use his new bionic eye. This involves years of restraint and tape and tears. *sigh* Six hours of patching daily. It's really going well. Not as many tears as I expected.

At 1pm daily the patch goes on. So do the no-no's and pajamas. Footie pajamas donned in reverse keep arm restraints from slipping off.

Next we start using bifocal glasses. From experience I knew that Specs4Us would not work for Zhen. The one pair we have for Theo have been a disaster. Theo bends them into a pretzel at every opportunity. I can only imagine what sort of damage Zhen could do.

I started hunting for Miraflex retailers in my area. Then I had to find a retailer that was a provider for our particular brand of vision insurance. Our eye doc's office didn't have any of these frames and didn't know how to find any.

Zhen's eye doc belongs to a large group practice with many locations. I did find one location that was listed on the Miraflex website. I threw Zhen into the car and headed out to find this location so we could get the frames ordered ASAP.

We ended up at a warehouse. The sign on the door said that if the door was locked to ring the bell at the shipping and receiving entrance on the west side of the building. Crap. Why is it so hard to find glasses for my guys with DS? Huh?

I drove immediately back to the doc's office and insisted that they order some frames for Zhen to try on. It worked! The frames arrived last week and they are so stinking cute! And Zhen loved them! We'll see how long that lasts. The lenses will arrive in 2 weeks and then I'll get some photos to share.

Phew! I'm glad the hunt for indestructible glasses is over!

Theo started physical therapy at Heartspring last week. He's getting so heavy. He almost looks a little pudgy in this photo. :) Trust me, he's still tiny. He's just getting buffed out.

Ralph and I have so much fun together. I say "ring! ring! hello?" Then Ralph punches some imaginary buttons on the bottom of his feet...and then...

He answers me on his foot phone!
So...do you have a bionic eye? Can you put your toes in your ears?

I didn't think so.

Theo's Clues

2011-06-15T21:16:00.002-05:00

Thomas made up a Blue's Clues game for Theo tonight. He's so cool sometimes I can hardly stand it. The clues are:

Tired eyes
Pajamas
Dark outside

The answer is: Time for bed!! Yay!!

Photo fest!

2011-06-14T22:10:00.008-05:00

So look who is causing trouble now! That would be Theo, up and cruising. Can you even believe it?

The camera loves Ruby.

Zhen really wanted to smile here. I almost caught one.

We had a photo-fest in the bounce house last Saturday.

No one had more fun than Ralph.

First time on the big-kid swings. Still working on that smile!

Pure love. :)

2011-06-11T21:57:00.004-05:00

Well, I had some great photos, but they don't want to load. OK, I got one! More later. Today was a fantastic day once we got it kick started.

We woke up to double poop nightmares. God bless my husband for tackling the worst of it. He knew that I needed to get started on the salad for the picnic later on. I suppose I will insist on PCD's (poop containment devices - footie PJ's worn backward) from now on, no matter how warm it is.

The weather was perfect for our Down Syndrome Society picnic today. We all had a great time. The four littles, Ralph, Zhen, Theo and Ruby, spent lots of time in the bounce house. They jumped, which is a huge deal for a child with DS, they rolled around, they lounged and jiggled. No big bad kids to run them over. No timekeeper making telling them their time was up.

We did make a short stop on the way to the picnic, but I can't really tell you about that today. :) Well, I could. But I'm not going to. Soon!

Hope you are having a fun weekend, too.

Can you tell?

2011-06-08T08:08:00.002-05:00

Since Zhen had a cataract removed and an artificial lens implanted, we say that he has a bionic eye! (Are any of you old enough to remember the 6 Million Dollar Man?)

Can you tell which eye is "bionic?"

Zhen had a eye appointment yesterday and he is healing beautifully!

But when we walked in the front door and down the stairs to the office, he tried to bury his eye under my arm. He's delayed, but he is no fool.

In the waiting room there was a little girl who wanted to play with him. He promptly walked over to her and threw a toy truck at her head. :(

As I was apologizing to the girl's mother he was called back to the exam room. The nurse dilated his eyes with a ka-jillion eye drops while I wrested him. Then we were sent back to the waiting room for another half hour. :(

The little girl was still there. She still wanted to play with Zhen. Not too bright. He took the same truck, walked over to her and dropped it on her head. *sigh*

Next up...the desperate search for indestructible glasses. Stay tuned.

The open door.

2011-06-05T23:20:00.003-05:00

Today, between worship services and Sunday school, I stopped by the nursery to check on my little children. Like I always do. Theo doesn't care if he sees me. He's just happy and playing with interesting new toys. Same with Zhen. I have to be sneaky when I check on Ruby. If she sees me she will have a major meltdown.

I noticed something interesting when I checked on Ralph. The door to his classroom was open. He was sitting with the group and participating in class and the door was open. Wide open. And he had not escaped. He wasn't trying to escape. WOW! My little curious boy is growing up! Here's Ralph and Ruby, trying to tie Theo's shoe.
Guess who lost his snaggletooth! Finally! He actually pulled it out himself and then cried for a half hour because it tasted funny.

God gave this boy amazingly beautiful eyes. It's a good thing he's so cute.

Theo had a blast playing on the floor with daddy today. He was really connecting with his brothers today too. He is always progressing in one way or another. Every day it's something new.

I'm so happy to have a new camera! I may soon need some additional digital storage if I don't slow down. Is two hundred photos a day too much?

Grandma's post.

2011-06-04T16:59:00.002-05:00

We made our first trip to the YMCA pool today. I brought Zhen, Ralph, Leroy, Thomas and Chipper. Rose busted open her big toe, so she gets to wait for that thing to heal before she can hit the pool :(

I was hoping that the little boys would keep their swimsuits on. They get to swim in their birthday suits in the back yard so I was afraid they would assume that was ok at the Y, too. They were good boys did not disrobe!

Ralph was in heaven in the crowded pool area. He had a great time waving and making friends with the other visitors! A few lucky individuals got a pat on the butt from him! ack!! Walking without braces is difficult for him and the moving water makes it worse. Occasionally he put a hand on a conveniently located adult butt to keep his balance! Oh boy!!

Here are some photos for you grandma...

Like that shiner?

So grown up!

Mr. Photogenic!

Mr. Congeniality!

Front Row Seats at The Installation Show

2011-06-03T23:15:00.002-05:00

Yesterday I personally moved all the furniture out of our family room. Side tables, lamps, chairs, TV and stand, and yes, PIANO! I still have it. :)

Today our new carpet was installed!!

My choice this morning was 1) take the children to the zoo and leave the installers alone in my home OR 2) stay home and keep the children downstairs and out of the way. I chose #2.

Did you know that carpet installation is more interesting than Sesame Street? Several children took turns sitting in the recliners that I had moved into the dining room, the front row seats at the installation show. I had to periodically run after Ralph. He really wanted to make friends with the installers!

When the guys removed the floor vent covers, they found a boat load of toys stuffed down in the vent. When they pulled up the old carpet, all my doubts about spending money on carpet were erased. Blech!

We finally decided on commercial grade carpet, due to the ummm....stuff that our children can dish out! They are at greater risk of carpet burn now, but at least the floor will look nice and hide a multitude of sins.

I also moved Ralph's mirror from the hallway were he likes to play. He didn't seem to miss it all day long. Then grandma stopped by this evening. Ralph likes to swipe her shoes. He puts them on his feet and then heads over to his mirror to see what they look like on his feet. Or he might steal her cell phone and go sit in front of the mirror to watch himself talk. My little narcissist!

Tonight he slipped her shoes on and turned toward the hall...and stopped...and looked. Grandma asked him if he was looking for his mirror and he shook his head "yes." :) How cute!

It's good to know that he can shake his head "yes" because all day long he shook his head "NO" at me. Uggh! He's rebelling at an early age I think.

Once upon a time, in a faraway land...

2011-06-01T23:05:00.005-05:00

Once upon a time, in the faraway land of our cold war enemies, a baby boy was born on the second day of June. In a city by the sea, this baby boy entered a mean world. A society which would make no accommodation for him. A society which would not accept him.

His young mother, a full twenty years younger than her husband, in her distress, fled. She ran away from the maternity hospital, as if she could escape from the reality of her son's apparent imperfections.

You see, the little baby boy was born with 47 chromosomes instead of the typical 46. This little microscopic addition to every cell in his body sealed his fate. No mommy. No daddy. He would serve time in a lonely crib, to pay for the crime of being born with Down Syndrome.

I cannot tell you about his so-called life for the next four years. Those years remain a mystery except for one thing. A woman, an angel to me, visited this little boy's orphanage grouppa in 2008. The little boy caught her eye with his big beautiful melancholy eyes. She took his picture. She made a little video. She left.

By and by, I saw this photo.
His sad eyes spoke to my soul. I recognized him as my son. Today that little boy is officially my son. He is officially a U.S. citizen. He is writing a new life story. Ten months after arriving home...
barely escaping the faraway land with his precious life...

...my son, the little boy with the sad eyes, is five years old. Happy Birthday dear Theodore. And many, many more.

Many more trips to the zoo.

Many more swings.

I'm so glad you are mine.

Theo today.

2011-05-22T21:41:00.002-05:00

This is hard to watch because Theo is crying. I can hardly stand it! Ruby can't stand it either and ruined an earlier take by handing him the bottle. She loves him so!

But, it's just a temper tantrum...

He can pull to stand! Isn't that fantastic?! He has gotten so strong and looks like a little muscle man. I even think he might learn to crawl before his 5th birthday, which is coming soon.

Goodie Two Shoes

2011-05-17T13:39:00.003-05:00

My handsome boy got new shoes. Doesn't he look great in red, white and blue?

Ralph's got a great life. I wish I could share him with every woman who is frightened because her doctor informed her that her unborn baby might have Down Syndrome. I wish those women could come play with us some afternoon.

He's not perfect. He's no angel. But he knows when I need a hug. That's priceless.

Be it ever so humble...

2011-05-16T00:03:00.003-05:00

I am so happy to be home. Colorado is always beautiful, but there is no place like home. I spent the last five days at the Colorado Christian Writer's Conference at Estes Park.

If this sounds like a retreat to you, then you ought to think again. The conference was not a relaxing get away in the mountains. It was an non-stop, action packed week of learning, growing and worshiping God. The conference rocked me. I needed to get home to find a little rest!

The whole event surprised me. I didn't find much of what I expected in the way of writing instruction. I found something far better and more useful. I found God speaking to me.

My Father spoke to me through the dear people that I encountered. He spoke to me through the fire and fervor they displayed. Their passions and testimonies grabbed my heart.

I trekked over 500 miles not knowing what I would find, not knowing if I could even consider myself a writer. This is what I found: God has given me a message. Therefor, I am a writer. Ideas for compositions are raining down on me. I cannot keep up.

Our opening and closing sessions took place here each day.

Scads of elk and mule deer inhabit the area around Estes Park.
On an interesting and slightly weird (ok, very weird) side-note, my oldest son attended the conference as he has done for the past four years. Though Wes appears to be a little older than he is, I must look a bit younger. The two of us were mistaken for a married couple or brother and sister more than once. I took too much pleasure in the flabbergasted faces of the people who couldn't believe that I was his mother.

The altitude affected me more than I expected. My head ached from the time I arrived until I got down out of the mountains today. I tossed and turned each night that I was away.Now that I am home my head is clear and I can't wait to crawl into bed. I look forward to sharing some exciting things that happened while I was gone and displaying some improved writing skills.

Wes at breakfast today.
I can tell I'm close to my hometown of Hays, Kansas when I see these clean, white, chalk rock country roads. I know, they're limestone. I just feel like a kid again when I say chalk rock.
What do you think of these windmills? I find them beautiful in a way.

Going to be a great week!

2011-05-09T07:37:00.002-05:00

Here's Ralph on his new trike for those of you who need a little Ralphie fix today.

He's almost big enough to reach the pedals. He's so pleased and keeps rolling the trike over to his mirror so he can look at himself sitting on it! My little rock star is a narcissist.

Today my husband of many years is having shoulder surgery. He's had trouble with his shoulders off and on for years, but he hurt it good last December while dragging a deer out of a field.

I dropped him off early this morning and I'll be loading up all the kids to go pick him up in a few hours. Poor guy. His pre-op nurse had zero personality and James was rolling his eyes at me when I left him there. Alone and scared. Poor HOMY.

Bright and early on Wednesday morning I'll be leaving for Colorado. I'm attending a Christian Writer's Conference and won't be home until late Sunday night. Today and tomorrow I'll be ziplock bagging outfits for Theo, Zhen and Ralph so he knows who wears what. I'll be writing out medication schedules and potty instructions. He will be stocked up on easy to make meals for children.

But, I'm worried. I don't know how he is going to get the kids dressed for school. It's a physical job. I offered to stay home and skip the conference, but he insisted that I go. So I'm going to try to find him some childcare assistance for Wednesday, Thursday and Friday mornings as well.

It's going to be an awesome week!!

Ralph's party

2011-05-08T23:12:00.005-05:00

Occasionally my husband's birthday falls on Mother's Day. Then I whine and complain about having to "share" the day with him. Today was not one of those days, but I still had to share.

Ralph's birthday was a week ago, but due to track meets, business trips and other activities, we were not all around to help him celebrate. Today we celebrated Ralph. Me? Not so much. But I didn't do a lot of whining today. I find it telling that I'm more willing to share the day with my son than with my husband. Hmmm. :)

I used to spend much time and energy crafting fabulous birthday cakes for my children. It was a labor of love. The past few years have been laborious enough and so my cake adventures took a vacation. I really wanted to make something special for Ralphie this year so I dusted off my mad cake skilz and had a blast! I enjoyed modeling with fondant for the first time ever. And, even though I ran out of time and didn't finish the cake to my satisfaction, Ralph LOVED it. That is the only thing that counts.

Right?

I was wondering if Ralph would be able to blow out his candles this year. It's a pretty big deal for a child with Down Syndrome to learn how to blow, whether whistles, recorders or candles. Check this out and see how he did...

On tap for next week, more drama. As always, right? My HOMY has shoulder surgery scheduled for tomorrow morning. I'll be traveling next week. Not great timing, huh?

Zoo today!! yay!!

2011-05-06T22:48:00.004-05:00

No school today. What do I do with nine children at home?

Here is what I did...I gave them some chores with the promise of a fun, secret, surprise trip after lunch, provided the jobs got done. Most of the jobs were actually completed so...

I sent the teenager to his track meet...

and then I took eight children to the zoo! For Zhen and Theo, this was a first

For the past few months we haven't done anything fun like that. It felt good to get out of the house. Naturally I messed up and loaded my photos backward. But, it's late so...here they are in reverse order.

Ralph really enjoyed the zoo. He "got it" today. It was so cool to watch him doing the animal signs and anticipate what we would be seeing next. Here is pointing to the lion that we just got done watching.

Jordan and Leroy got lucky today and saw the red panda up close. Jordan's favorite animal. :)

The penguins put on a nice show for us, zipping back and forth. Theo tried to catch them!

Zhen got a break from wearing his arm restraints today. They were so dirty I didn't want them to be seen in public!

My very best attempt at a group photo. Ruby was mad and would not turn around and smile. Actually, no one is looking at the camera! haha!

We had a great time at the zoo today. However, before we arrived a child was grabbed by a leopard when he crawled over a barrier and got too close to the cage. A friend of mine witnessed this awful scene. She and another man ran over and started punching and kicking the animal.

They were able to get the child away and he's doing OK tonight. However, she is quite shaken. Could you say a prayer for my dear friend tonight?

Got snuggle-puss?

2011-05-03T08:43:00.003-05:00

Speaking of some of the unique characteristics of babies with Down Syndrome reminded me of a great article written by Kimberlee Kadar-Kallen.

Here are a few snips:

Hypotonia - Sometimes referred to as poor muscle tone, what this really means is that all of Baby is super soft and cuddly. Synonyms for this condition are smoosh-ball, teddy-bear, snuggle-puss, honey-love, and so forth. Squeezing and hugging Baby is a frequent and irresistible temptation.

Congenital heart defect - This is really one of several code phrases for an intensive training course in learning the true meaning of Jesus, I trust in you. This training involves great spiritual growth and opportunity for deepening and greatly magnifying one's prayer life. There may even be a special retreat involved where one can really progress in prayer. The special code term 'open-heart surgery' is often used for this unique retreat that takes place in a hospital.

Go read the whole thing! I love the way she takes many "normally-negative" characteristics and shows them in a positive light. It's not spin. It's perspective. It's a privilege to be graced with a child with Down Syndrome.

Got snuggle-puss? I do. :)

Thinking back...

2011-05-02T21:51:00.003-05:00

Tonight I was a guest on a Mother The World podcast, discussing parenting children with Down Syndrome. The hosts, Deanna and Carolyn, were great about asking the right questions. But, how do you cover a subject like that? It's HUGE!

Then Carolyn brought out her new daughter who is sporting designer genes, and it took me back to when Ralphie was a baby. Ahhh. Memories.

Let me just say that I love babies, and children and grown ups with Down Syndrome. I think they are a great gift to the world. That said, Ralph's first year was downright frightening. Even so, I never considered that we would have been better off without him. Never once. I loved him with ferocity from day one.

In order to communicate with a large number of people who were praying for Ralph's health, I started experimenting with websites and blogging. I had never heard of a blog until 4 years ago! I'm not sure I would had anything interesting to share until he came along anyway, right?

Ralph at three months.

The original website is gone, but our second attempt is still live on the internet. If you want to go back in time, check it out HERE. I started Ralphcrew a little bit later.

1st birthday party - a little late because he had been in the hospital. :(

I feel like I came out of the fog when Ralph was born. I started to see things more clearly. He's the reason I started a blog. He's the reason we adopted two additional boys with Down Syndrome. He's brought some folks back to the Lord. He was, and is not, a mistake or a burden in any way.

I'm pleased to answer any specific questions that you might have about parenting a child with Down Syndrome. I sometimes forget what life was like before Ralph, so I don't remember what I would have wanted to know, ya know?

I haven't begged for comments in a long time, but here goes: Leave me some love and questions in the comment section. Please?

Happy Birthday Ralphie!

2011-04-29T06:11:00.000-05:00

Ralph likes the letter 'H'. :)

My little rock star is four years old today. WOW!

I can't believe that he is so old and so big. He really is mommy's big boy these days. When Zhen starts playing with the TV cabinet, Ralph grabs him and drags him away so he doesn't get into trouble. He is working so hard to learn how to speak properly. He knows his alphabet and how to sign each letter quite well. He can sign his name. He's learning to use the potty!!

In a way though, it seems as if he has always been with us. I can't remember, and I don't want to remember, what life was like before Ralphie. He has inspired me from the moment he was born on that beautiful, chilly night.

If not for Ralph, we would not have a Theo or Zhen in our family. We would likely not know much about the desperate situation of children with Down Syndrome in Eastern Europe or the genocide of babies with Down Syndrome in the United States and other developed countries.

I'm just so happy to be Ralph's mom. I'm so proud of my little rock star. He's come a long, long way!

Today is the day.

2011-04-26T13:40:00.002-05:00

God willing, today is the day Theo will come home from the hospital.

We both had a rough night. My problem was simply a 2nd night of recliner sleeping. Pretty sure I'm too old for that. Theo's problem was that he napped yesterday afternoon and didn't want to go to sleep.

Theo did his rocking the squeeky metal crib trick for a long, long time. I held him in my lap for a while, but I was afraid I'd go to sleep and he would take a dive. Then he cried, and rocked...rinse...repeat.

Somewhere along the line I fell asleep. When I woke up, Theo was wearing an oxygen cannula, had IV fluids going and, GASP! TAPE ON HIS FACE!!

I go a little nuts when I have a child in the hospital. I've written about it before, a long time ago. First of all it was silly to put oxygen on him. He has airway issues and sometimes needs to be repositioned. In fact when I woke, the cannula was sitting on top of his nose and his oxygen sats were just fine. I made certain to point this out to the nurse.

Second, Theo can't have tape on his face, his skin breaks down so easily. He's a delicate little Ukrainian prince, ya know? I asked for some adhesive remover pads to get those damned oxygen stickers off his face. It's 5:30am. Are any of you overly friendly at 5:30am? I didn't think so.

About an hour later his IV fell out of his arm! Weird. Who would believe me that it fell out? haha!! Figures. We left it out. Baby steps closer to escape.

So, today should be the day that Theo comes home. We waiting on one more lab test to come in and then we are outta here!! I NEED to be home. The place falls apart without me. And everyone misses Theo. Ruby was so glad to see him this afternoon. Those two are best friends!

My Easter horror story.

2011-04-25T14:47:00.001-05:00

Here is the view from where I'm sitting right right now.

Crazy huh? Theo became very sick yesterday. Scary sick.

He had been running fevers off and on for a couple of days. A dose of ibuprofen and he would be good to go for the rest of the day...sometimes well into the night! Yesterday was different.

James and I were at church for all three services so grandma sat at home with Theo for us. When we got home, she told us that he had slept until 11am and then didn't want to eat when he got up. She was rocking him when I walked in. He looked odd, but I couldn't put my finger on what was different.

There was no time to get an Easter dinner on the table in time for our hungry crew, so we went ahead and took Theo and the rest of the kids out for Chinese! Nice Easter dinner, huh?

I held Theo for a while and he was heavy and floppy in my arms. But, when he saw my plate of food he sprang to life just long enough to grab some mushroom beef and stuff it in his mouth! I decided to put him into a highchair so that I could sit less than three feet away from the table to eat.

Theo kept slumping over sideways in the highchair. I would straighten him out and he's start crumpling over again. Occasionally his eyes would roll back. He didn't look good at all. Not only did he not look good, he looked different in a way that I couldn't quite figure out. His face. Hmmm.

He was so limp in my arms when I lifted him out of the highchair to go home that I asked James if we should take him to the doctor. He was breathing strange, too...a couple of regular breaths and then he would stop...and then come up for air a few seconds later. Why does stuff like this always happen on a weekend?

As soon as we got the crew back home, I put a call into our doctor's nurse line. She recommended that I take him to be seen. So I put Theo into a nicer, cleaner pair of jammies and headed out to the minor emergency office, all the while wondering what they would think of this 24 pound almost-five year old child with Down Syndrome.

Can you guess? Yep, the minor emergency office was closed for Easter. Dang. I would have to go to the hospital ER and pay a $200 co-pay. Ouch, right? But, for Theo it's nothing. :) The cool thing was that the ER was dead and we got right in. I was acquainted with the ER physician, that was also nice.

Looking at Theo lying on the big white cot I suddenly noticed the delicate line of his jawbone. He looked different.

He was hooked up to an O2 sat monitor and I was shocked to see him in the upper 80's. Not cool. I asked the nurse to start him on oxygen right away. She agreed with me. I went to the waiting area while they started an IV, drew blood and did a chest x-ray. I've seen enough medical procedures and I don't have anything left to prove. I can't stand to see him hurting. As it turned out, one of the blood samples clotted too quickly and had to be redrawn. I stayed in the room this time and he only grunted a bit while the vampire rooted around for a vein. Poor sweetie.

This is getting long, but I don't want to forget these things. After Theo's IV was started and he had a couple bags of fluid pumped into him he started to perk up. Then it dawned on me...his face. It was pink and plump again. I could no longer see the obvious line of his jawbone. That bony jaw was looked like it did when we brought him home in emaciated condition.

Theo weighed 22 pounds yesterday at the ER. He was 25 pounds in Kansas City two weeks ago. That just goes to show how fast a little guy like Theo can go downhill. He was in shock when we arrived at the ER. I'm more frightened now than I was at that moment, now that I understand what I was seeing and couldn't process.

Here's the best news of the day, and I firmly believe it is because of all the prayers on his behalf: Theo is doing great!!

He's been moved out of ICU to the pediatric floor. He's not hooked up to a bazillion monitors and oxygen anymore. He's just been snoozing hard. God willing, his bloodwork improves some more tomorrow and we can go home in the afternoon. Please let it be so!!

Look at my peaceful little angel.

Thanks for your prayers and encouragement. I love you. Yeah, you.

Caught looking.

2011-04-20T22:18:00.003-05:00

Tonight I took Ralph to an event at a church that we do not attend. Lots of families with children were in attendance. Ralph was very well behaved at first. He sat on the floor next to his brothers and paid attention to the speaker. Such a big boy!

Then I noticed it.

Next to Ralph and his brothers sat another little boy, probably 6 or 7 years old, who was staring at Ralph. This boy looked puzzled. I could almost see the gears turning in his mind.

I found myself staring at the boy who was staring at my son.

Intrigued, I imagined what he might be puzzling over. I wondered if he had ever seen a person with Down Syndrome. My guess is no. I'll bet that Ralph's appearance was just barely different enough to make him wonder, "what is wrong with him?"

I watched him watching Ralph for quite a while. Then it happened.

He got caught looking!

Ralph caught him. They locked eyes. After a pregnant pause Ralph busted out his best and biggest smile, the one where his eyes turn into little crescent moons, and he waved "hello!" to the other little boy.

This dark, mean old world needs Ralph and more people like him. He's not an angel. Close, but not quite. Still, he's breathtakingly open and friendly.

I'm going out on a limb and proposing that people with Down Syndrome make the world a better and more loving place. More fun for sure! That's my experience anyway. Check out Ruby and Theo and let me know what you think:

One more trip done.

2011-04-13T21:37:00.004-05:00

Let me tell you, Facebook has turned me into a lazy blogger. L-A-Z-Y. Good thing I don't tweet! haha!

Theo, Ruby and I are home from Kansas City. We had a pretty smooth trip if you don't count two babies not sleeping on Sunday night.

Monday morning was tough. More waiting around than anything else. When Theo was taken back for his procedures, Ruby and I hightailed it to the snack shop. We were starved after three hours of waiting. Before we were even done eating, the doc was back with his report. Yeah, we waited around for three hours for 20 minutes of procedures!

OK, to be fair he did have some other things done after the doc was finished. And then another hour in the recovery room. I got a phone call from the recovery nurses. They couldn't figure out why Theo was so upset. I should have insisted on being with him immediately when he woke up. Why didn't I think of that? So, I told them to give him something to eat. That one surefire way to calm him down. He ate two pudding cups and drank a cup of juice before I got to see him. His little tummy was all big and hard. I thought for sure he was going to throw up. But no. So we left.

We drove back toward the hotel, but I needed to find a pharmacy to get some Ibuprofen and melatonin. No way was going to handle another sleepless night. We played around the hotel room for a few hours. Theo and Ruby were playing peek-a-boo with a baby blanket and I was making videos with the webcam on the computer when Theo finally threw up...on my bed. haha!! It figures, doesn't it?! Yeah, I caught him with the camera.

Theo had a quick appointment on Tuesday morning and then we headed straight for home. Our babysitting situation worked out. It wasn't ideal, but we all survived, right?

I wish we could just move to Kansas City so my boys would have everything we need at hand. These trips are getting old.

Sunday night in the city.

2011-04-10T21:17:00.003-05:00

Against my better judgement, I took Ruby and Theo to McD*nald's tonight. You see, we are on the road. Theo's having some medical procedures done early in the morning at the big city children's hospital.

So, after 3 1/2 hours in the car, I wanted to make sure that Ruby would go to sleep at a decent hour. Hence the playplace! And yes, it was a disgusting as I imagined that it would be.

Blech.

I did have an interesting conversation there, though. I sat down next to a grandma with three of her grandsons. The grandma left the room to buy them some H*ppy Meal toys. One of the boys asked me why Theo was making funny noises. I explained that he spent 4 years in a lonely crib and made up funny noises to keep himself busy. The boy then told me about the baby in his mommy's tummy. :) How sweet!

He told me it was a boy and that would make four boys in his family. I told him I have 9 boys and two girls and his eyes about popped out of his head.

I nearly fell off my chair when he immediately asked me if I was a Christian. How about that? What a cool kid. I had fun chatting with them and grandma until they left. I'm glad I went to that nasty place after all. :)

I'm trying to get the Ruby and Theo to sleep now. We start early in the morning. Theo also has an appointment at the big city children's hospital clinic on Tuesday morning. But I'm having a babysitting emergency at home.

If I cannot secure a sitter for Tuesday morning I'll have to cancel the Tuesday appointment and head for home. Not looking good so far. If you are in my area and have suggestions, let me know.

Glad that's over!

2011-04-09T08:45:00.005-05:00

I was so focused on cleaning up my kitchen yesterday morning, but I kept getting interrupted...in the good way!! I had some interesting and eye opening phone calls and chats with some very good friends. I didn't get many dishes done, but oh well! They'll keep, right?

I didn't have to worry about getting the kids ready for school so I talked and I chatted away. Ralph and Zhen only have school a few Fridays each month. And since Ralph's IEP was scheduled for 3pm I figured there was no school.

Closer to lunch time the phone rang. It was the elementary school nurse. By the tone of her voice I could tell something was wrong. There was an accident in PE class and Thomas had his teeth banged on a classmate's head. She had looked at him initially and sent him back to class, but he was back in her office complaining. I told her I'd be up to get him in a few minutes.

Then the phone rang again. It was the transportation department. Ralph and Zhen's school bus was out front waiting for them. WHAT! Oh dear! I had assumed there was no school today, but I didn't actually check the calendar.

Well there was no way I would get their shoes and braces on in less than 20 minutes so I sent the bus away with profuse apologies. I sat down and worked on shoes and loaded them all up in the van to go to school. They were only a minute or two late and the director even walked them into the building for me. Ralph wouldn't go in, though! He needed to see me drive away first I guess, so the director stood outside with him waving at me until the van was out of sight. Cute!

Then we drove over to the dentist's office, which is closed on Friday by the way. We called the emergency phone number and the dentist and his wife were there within 20 minutes. How nice! Thomas got an x-ray, which revealed no cracks thank goodness! But, one tooth was hanging very low and had been pushed in so that he could not bite down.

I watched while Dr. Coad glued Thomas' front teeth together with a big strip of enamel colored goop. It's kind of like buddy taping a broken toe. haha! We'll go back in about 10 days to have those teeth looked at again.

I was out of groceries, so we took a little trip to the store before taking Thomas back to school. I end up getting home with twenty minutes to shower and dress for Ralph's IEP meeting. No way! So I throw on a little extra deodorant and some damp jeans and head out the door again.

I'm thankful that Ralph is a good student and is making great progress. I feel like I'm on the same page with everyone on the team so his IEP's have gone smoothly so far.

After the IEP I have to go to the home improvement store to return some extra materials from our fence project. My HOMY had them all loaded up in the van for me. Wasn't that nice? So I returned the stuff and then went looking for some items that he needed.

This is where it gets funny. He could have just gone to the store himself, but no. So I called him no less than three times to make sure I was picking out the right things! There are 7 different kinds of concrete? Which one do I choose? How long does the drill bit need to be? Will 9/64" be ok because the 1/8" comes in a 2 pack and costs twice as much? And so on...

Anyway, it was a busy day. I put out a few fires, screwed a few things up, inconvenienced a few people, made some people mad, and helped some others. Pretty much like every other day of my life. I'm glad it's over!

A change of heart

2011-04-06T20:10:00.006-05:00

After watching Theo take steps yesterday I had a change of heart. He is a big boy now and he doesn't need to have babyish long hair anymore. So I set him in the highchair on the back porch and started cutting. First with scissors and then finishing up with the clippers. This is how he ended up:

He looks so different, doesn't he? More grown up perhaps?

After watching me cut Theo's hair, and trim Zhen a little bit, Ralphie asked me to cut his hair. Really! He asked me!

We got about halfway done and he changed his mind!!

You can see Zhen in the background. Haircuts bend him out of shape a bit, but he didn't freak out quite as bad as last time.

What to do? Ralph is done...but his hair is not!

We pushed through and finished up.

Hair was everywhere.

Even in his mouth!

Phhttt! Yuk!

He looks so handsome too! What a beautiful day for haircuts on the back porch. We left lots of clumps of hair in the trees for the birdies to line their nests.

Fix you? Fix me.

2011-04-05T10:00:00.004-05:00

I just scratched the back of my hand on a sheet metal screw.

This is the thing that drives me the most nuts...Zhenya is attracted to our air vents. He gets in trouble every single time and he goes back for more. Like a moth to a flame.

What is the payoff for him? He's got to be getting something out of it or he wouldn't go back to them time and time again.

I have to keep furniture on top of them so he can't get the covers off. The leg of his crib normally sits on top of the vent in his room. I didn't like the crib there so I moved it the other day thinking perhaps he had forgotten his naughty obsession.
Nope.

I just got done pulling a boatload of toys out of the duct. Why would he stuff all those toys in there? I'm just irritated. And bleeding.

I have a choice to let petty things like this drag me down. It's not the only petty thing on my mind. They distract me from my true purpose. Perhaps I'm more like Zhenya than I would like to admit.

I know that I should not dwell on minor irritations. I can not control the actions of other people whether they are 4 years old or 44. But I can't seem to help myself. I gotta fix things. I never learn.

So I'm going to attempt to treat Zhenya and others the way my undoubtedly irritated loving Father treats me...with large doses of grace and unconditional love. That's probably the only way to fix things.

DONE! Sorta...

2011-04-04T10:22:00.003-05:00

Thanks to my hard working HOMY (husband of many years) this fence project is DONE! Phew! Now my children and dog can safely play outside without getting "lost" or "visiting" the neighbors.

Outside.

Inside.

It is difficult to see but the back is chain link. Even from the house it is barely visible. I can't wait to train some roses or vines to climb that fence.

There is just one problem...the wind. Yesterday and today have been extremely windy, even for our area which is a very windy area. Last night a storm rolled through and within hours of being finished, one of the new gates was destroyed. Isn't that disappointing? So next weekend will be all about shoring up the new gates and spreading some fill dirt in some low lying areas around the security perimeter. (I didn't want to type the word fence one more time.)

Some other things got done last weekend as well. We finally have our water well hooked up to power. Now I can water the lawn and fill baby swimming pools without inflating our monthly water bill. Just in time for watering and splashing season!

We also tested our A/C yesterday. Yes, I was ashamed to admit it, but the house was hot and we were all working hard so we turned it on. Cra-zay!! Today it's not even 50F outside. Gotta love springtime in Kansas.

2011-04-01T17:51:00.003-05:00

Daddy said she could not have a pony. Just kidding! If Ruby ever asks her daddy for a pony she will most likely get one! SHHHH!!!! My three afternoon schoolboys, waiting for the bus. After many wet, gloomy days this week we finally got a taste of Spring. I didn't plan to dress them all in blue and red. It just sort of worked out that way!

Something BIG is going on here this weekend. Actually for the past few weeks...it's going slow but finally picking up steam.

Can you guess?

I picked up this nifty staple gun from the rental place this afternoon. I like the feel of power tools in my mitts! There would be 10,000 staples in that little box. Wow!

This pallet of stuff has been sitting for a month! Our order was shipped incomplete. :( This caused a HUGE problem between us and the home improvement store. HUGE. Trust me.

Hey look! Isn't that purty?

Jordan told me last night that our new fence looked good but that Ralph would just climb right through it! haha!

It's not done yet, but almost!! I'm so excited! Ralph ran away three times a few weeks back when the weather was very nice. He's just very independent and likes to "visit" the neighbors. Our neighbors don't appreciate this as much as he thinks, so this layer of backyard security is way overdue.

I'm still looking at options for front yard security. I'd like to have several layers if you know what I mean!

So, I had a hard day.

2011-03-29T22:38:00.005-05:00

I knew that today would be difficult. I was prepared for it. I had shoes, socks, braces and clothes laid out the night before. All my paperwork was ready to go. I was well rested.

Even with careful preparation, though, some days are just really hard.

Taking five children to an appointment is never easy. Today it involved two strollers, one pushed by me and one pushed by a barely-6-year old boy who can't really drive a stroller. It involved height and weight checks which necessitated removing shoes and braces in a hurried fashion and then scrambling after them when naughty little boys threw them across the room. It involved a boy who messed up (reflux anyone?) two shirts and ended up leaving in his sister's fluffy pink coat because it was chilly outside and he was nekkid from the waist up. It involved a screaming two year old girl, freaking out because her little brother was wearing her coat.

When we got home I had a quick little pity-party, 30 second cry in my room. Then the phone rang.

I missed Ralph's speech therapy last week in the rush and chaos of Spring Break. I missed the week before because I didn't even know they had put me on the schedule yet. So today they called me to let me know they were dropping us. Ack!

Umm...did I mention my headache yet. Yes, I had a good one and it came on early.

I couldn't focus on my lameness and fix lunch at the same time. So I hung up the phone and fed the kids. Then I put them on the bus and called the SLP back, groveling and begging for another chance.

I had the privilege of making and taking dinner to a fantastic family tonight. After assembling their enchiladas, I made one for myself and then took a little nap. The world looked a little brighter after an enchilada and a nap! Really, you should try it.

So, Ralph has speech therapy tomorrow. Phew! He is SO ready for this and I nearly messed it all up. I guess I could take all the other children with me again tomorrow, but I have an awesome friend who is coming to sit with them here at the house. I feel my sanity slowly returning.

Guess who has glasses?

2011-03-25T22:06:00.003-05:00

Look who has glasses! And look who loves them, NOT!

Poor Theo, just can't understand why I continue to torture him this way. Grandma is trying to keep his hands down so I can quick snap a picture.

Whoa! Wait! Maybe I CAN see a little bit better with these things on my face.

I have no idea how long it will take to get him used to wearing glasses. Next month we get Zhen's glasses. And soon Ralph will get his. Life is about to get very interesting around here!

2011-03-24T12:59:00.002-05:00

I'm hangin' with some friends today while daddy is playing Mr. Mom! The kids are playing in the pool, but we'll be starting the 4 1/2 hour drive for home pretty soon.

Here are Thomas and Jordan with their favorite friends:

We need to get back in time for the party at home. Today is Miss Rose's birthday! She is now eight years old! Here she is with one of her favorite friends!

Everyone always says "where did the time go?" That's so true. I remember the day she was born like it was yesterday. I was so happy to finally, after 5 boys, have a daughter! But, I was too tired to cry.

Thank you Rose, for initiating me into the world of hair bows, nail polish and drama. I hope that the next eight years are just as fun!

Happy WDSD!!

2011-03-21T10:16:00.003-05:00

Happy World Down Syndrome Day!!

Maybe you are thinking, "why on earth would anyone celebrate Down Syndrome?"

Down Syndrome, or Trisomy 21, occurs when there is an extra copy of the 21st chromosome. Only very rare types of Trisomy 21 are inherited. The extra genetic material affects each individual with DS. Heart defects are common, but not universal. Muscle tone is often affected. Distinctive, and beautiful if I may say so, facial features are often present.

Even though people with Down Syndrome have extra genetic material on the 21st chromosome, they have all the other chromosomes that people without DS have. They are as unique and different from each other as any other two typical individuals.

If a few key moments of my life were erased I might not be celebrating 321 today. I would never have given it a second thought. I might have thought it was strange or odd to celebrate a "disability."

You may not believe me but my life is infinitely richer today because of Down Syndrome. And while DS can have disabling effects, I don't consider it a disability.

I'm thankful for my son Ralph who introduced me to the blessings of parenting a child with Down Syndrome. Because of him I take a little more time. I'm in less of a hurry.

Because of him I love a little bit better, even those people who require extra grace.

Because of him I care less about appearances and more about substance.

Because of him I fight harder for what is right and I let go of the petty things.

Because of him I fear less and hope more.

Because of him my eyes were opened to the genocide of babies with Down Syndrome in the western world and the warehousing and neglect of individuals with special needs in Eastern Europe and elsewhere.

Because of him our family took the opportunity to bring two more children with Down Syndrome into our tribe.

Here are my three boys with DS and their brother and sister without. We are sitting on the front porch waiting for the school bus. All five children are as unique and as special as can be. Each has a hope and a future. Each one is something to celebrate.

Will you celebrate with us?

Fun with Theo...

2011-03-17T17:40:00.004-05:00

This is what happens when you give Theo mini-wheats for breakfast!

There was no way to get all that stuff out of his hair short of a full-on tub bath. But he was soooooo happy! He is always happy when he is eating. :)

This little sweetie cleans up pretty nice!

Just look at that shiny clean hair! All ready for school.

And it was oh-so-nice outside today so I thought he would look nice in some shorts! Nice legs, huh?

I can't wait to see Carrington with food smashed in her hair. And Andrey all ready to go to school. That would be nice. It would do my heart some good today.

PH sucks.

2011-03-15T21:52:00.003-05:00

For the past month we've been living the dream here. The dream where pulmonary hypertension is ancient history and where bedtimes are not worked around medication schedules.

Today was a really big day and it totally snuck up on me. I wasn't really ready to take Ralph back to the cardiologist. Good thing he didn't particularly care.

He had a great time playing in the waiting room.

Then my camera ran out of batteries. :)

Then my heart got broken. Again.

Weaning Ralphie off his medication was a trial. I had a feeling that it was too good to be true. And though I have no expertise, and though I was very busy trying to keep Ralphie still, I know what to look for on the echo cardiogram screen. The trial is over. Ralph's pressures are up. The dream is deferred...for awhile anyway.

PH sucks.

Fun with brown paper.

2011-03-14T22:40:00.002-05:00

Ruby has a tea set. She only plays with it when Ralph, Theo and Zhen are at school. Since Theo was at home sick last week, I let Ruby teach him how to play tea party!

The thing is, Theo doesn't yet understand how to play pretend. He just likes to throw things...backward. Ruby didn't think that was very much fun so she chewed him out. Here she is picking up all the toys he threw back in the hallway! haha!

By the way, I caught Theo on his hands and knees today. 1st time ever!

I got my Amazon.com diaper order this week and they were kind enough to put a long strip of packing paper in the box. The little ones had so much fun with this crunchy paper. Amazon has incredible deals on diapers. I don't even mess with coupons anymore.

Total fun! I wrapped the paper up and stuck it on the toy shelf for a rainy day.

Ralph is too mature to play with them like that. He mainly just loves watching Shaun the Sheep. Well, truthfully, I love the show, too. It's the best ever! Shaun is so cool...he even pulled a needle out of a haystack! I'd like to get him a stuffed Shaun toy for his birthday, but they are way too pricey with shipping from the U.K.

As I observe Ralph watching his favorite show and acting out every scene as it takes place, I'm really struck by his intelligence. The kid has 40 episodes memorized! This is how he learns...visually. Imagine what he could learn if I could get him to watch it over and over again!

It's time to dust off the Your Baby Can Read disks. I hope he finds them as exciting as that cool little sheep.

A different kind of crazy.

2011-03-07T19:48:00.003-06:00

Check out this cute little dude! He is a completely new boy compared to the emaciated little waif I found in an Eastern European orphanage last year.

One problem...

...now he is a chick magnet. Girls these days are pretty aggressive!! haha!

I got a phone call today that I should have been dreading, but it wasn't even on my radar. Now it's got me in a funk. It was the school psychologist. She wanted to remind me that Theo will be eligible for kindergarten in the fall.

She says they like to keep children together with their age-mates, that there will be a very large age gap with the new three year olds coming into the preschool program, and that Theo could benefit from the all day program and the many therapies offered at the elementary school.

The school is in a different town. gulp.

Let's just say that I have some big decisions to make in a short period of time. I need to sort out my feelings on inclusion and academics. I want to keep the desired outcome in mind and base my decisions on that. But, I'm feeling a little lost.

Let's switch gears and have a little fun! I never thought I would have virtual quads, but that's what this feels like! haha!

How's the weather where you are? We had some crazy ups and downs here. One day last month was -17F and a few days later it was 78F! Then just last week we had this fantastic hail storm:

It hailed tiny pea size ice pellets for a very long time. You can see a pile of ice at the bottom of the downspout in the photo. It took a few days for this to melt away. Thank God it wasn't softball size hail like some of our friends a couple of miles to the south had last year.

Do your kids like ketchup? Do they eat it with a spoon? ewww.

My insane busy week has changed. It's less busy all of a sudden but still every bit insane! I originally had two appointments tomorrow...at the same time. My plan was to reschedule one of them, but I ended up cancelling both because I have five sick children. Five. Sick. Feverish. Coughing. Snotty. A different kind of crazy now.

I'm so disappointed that Ralph won't get his heart echo this week. I've been anxious to do this since he went off his pulmonary hypertension medication a few weeks ago. I want to KNOW that he is alright without medication.

I'm also disappointed that Zhen will not have his eye surgery this week either. Having his cataract removed is a two-part process. With part one pushed back, part two will be delayed as well.

Poor little Theo is the sickest of all. He gets so stuffed up and breathes through his mouth as a result. he wakes up with snot dried on his lips and tongue. Can you imagine how awful a tongue with a leathery coating of dried snot must feel?

Good news, however! Through an adoption email group, I found out about doing a nasal wash on children. So I buzzed out to the drug store this evening and picked a nasal cleaning system. I used it on Theo and on Zhen and they are breathing so much better! They even look better! No, they did not enjoy the process. Yes, boogers were flying. But I think they will sleep better tonight with cleaned out noses. And perhaps we can get and keep these children healthy and snot free.

Breadballs and Birthday Cakes.

2011-03-06T20:48:00.005-06:00

After months of fumbling, I finally have a pretty good morning routine in the works. I get Zhen out of bed first and set him on the potty. Then I get Ralph and set him on the toilet. I have to get them up before they've been awake for very long, ya know? They boys give each other high fives as they sit on their respective potties...it's way too cute!

I get Ruby changed and then get the boys fresh pants on. Zhen sits in his high chair while I fix his smashed banana and baby cereal breakfast. I fix Theo's bottle and set it to the side while I get him up and changed and into his high chair. He gets a can of vienna sausages and Cheerios first and then a bottle of Elecare to wash it all down. He'll be transisioning to Pediasure over the next few weeks because he is growing so well!

Ruby gets a bowl of cereal and sits at the table like a big girl. While all this baby care is going on, I'm directing traffic with the big kids getting ready to leave for school. They are great about getting ready to go without much help from me at all.

So who is last? Ralph.

When Ralph is done with the potty and dressed he goes straight to the TV and puts on his favorite show, Shaun the Sheep, while I take care of everyone else. He's pretty laid back and will normally wait his turn with out a problem.

But, the other day,

as I was taking care of everyone else,

Ralph decided to take care of himself!

When I went to get him for breakfast this is what I found:

I had to go get the camera. He's got probably four pieces of bread balled up in his pudgy little hands!!

I guess Ralph made his own breakfast. He ate the whole thing, too! What a nut!

Guess who turned six last week? The Hamster!! I would say I can't believe he is six, but he is so wicked smart that I'm surprised he's not sixteen. I'll have to save some Hamster conversations to share with you some other time.

Here he is with Jordy licking the beaters. Hammy asked for seven minute frosting on his birthday cake. I've NEVER made it before. I only remember my aunt making it like 30+ years ago.

Crazy little guy blew out the candles before we even had a chance to sing for him. So we relit all six of them and made him do it all over! Wow! That shiny, marshmallowy frosting really glows!

We've got another insane week in the works. I'm going to need my beauty sleep and a whole lotta grace.

When you say ret*rd...

2011-03-02T08:11:00.010-06:00

I heard what you said.

Yeah, you.

I just want to know what you meant by it.

I heard you say ret*rd. Yes, I did.

I was just wondering...

When you said ret*rd...

...did you mean ultra cute?

...or extra snuggly?

...or incredibly resilient?

...or super charming?

...or beautiful beyond comprehension?

...or did you just mean rock star?

Or maybe, (picture these in your head) when you said ret*rd...

...did you mean dumb?
Like the time you locked your keys in your car with the engine running?

Then just say dumb.

...or did you mean useless?
Like your designer handbags and eye wear? Your dust collecting home accessories? All the crap in your garage that you never use?

Then just say useless.

...or did you mean bad?
Like your unashamed addiction to nicotine, caffeine, booze, or (gasp!) pornography? Or FaceBook? ha! gotcha!

Then just say bad.

...or did you mean lame brained?

Like the time you had a few beers at a restaurant and decided it was OK for you to go ahead and drive yourself home?

Then just say lame brained.

...or did you mean dopey? dimwitted? moronic? dull?

Just say dopey, dimwitted, moronic or dull.

My children are none of those things

I know. I've heard it before.

You weren't talking about my children.

So, whose beloved child, brother, sister, aunt, uncle, friend, co-worker were you referring to?

Say what you mean.

Mean what you say.

Find a new word.

It's End the R-word Day.

Ralphie goes to the dentist!

2011-03-01T20:43:00.004-06:00

I'm really out of the habit of sharing our day to day happenings. The little things and daily struggles seem so boring and unimportant. I think that sometimes the days are so hard that when I finally get the kids to bed, the last thing I want is to relive them! I need to share anyway though, if only for future reference.

Today I took Ralph to the dentist for the very first time. I wanted to take him to a pediatric dentist but the one I had in mind no longer accepts our insurance. So we went to our family dentist and he did great!

Of course he did. He IS a rock star after all!

He was a very big boy and let the hygienist polish his teeth. He loved the little suction probe that sucks the rinse water of your mouth.

Rose and Leroy had appointments at the same time though. And I had to bring Zhen, Theo and Ruby. So basically, I brought the circus to the dentists office today!

Theo was perfect, as always. He sat nicely in his seat and played with his blanket and made goo-goo eyes at all the girls. Zhen was a nice boy, too. He just wanted to play with a little wind up music toy that I found in the toy box there.

And then there was Ruby...

...who turns two years old this month. Wow, I can't believe she's going to be two. I still feel a little traumatized by her birth. I should get over that, huh?

Ruby was naughty. And mean. And foul tempered. Did you know that she is the only child who is allowed to play with a toy? She made the visit so difficult.

I had to roll the double stroller and carry Theo back in his seat so that I could sit with Ralph while he had his teeth cleaned. Rose and Leroy sat in the waiting room alone. I'm so glad that they are well behaved enough to do that.

Then Rose came back to Ralph's chair when his turn was over and Leroy was alone in the waiting room. Shortly after that Leroy was called back to his own chair on the other side of the office. He ended up doing the entire visit on his own. A kindergartner! Such a big boy!

We got home just 20 minutes before the little boys' school bus came. I had just enough time to throw some quesadillas in the microwave for everyone and get Theo dressed with shoes. Then the bus came and I did my sprints getting the three boys on the bus.

After that Ruby and I took Rose back to school. We walked Rose back to her class, in part so I could wear Ruby out. Little miss crabby pants needed a nap big time!

Mornings like that with lots of running to and from the van, climbing in and out of the van, bucking and unbuckling of car seats, and packing and unpacking the strollers wear me out completely. I wasn't much use for the rest of the day.

It's OK though, because I love my life. I love that I have such awesome children. Check out those brothers Zhen and Ralph above! They are starting to bond as brothers. It's beautiful to witness.

And Rose and Leroy acting so grown up at the dentist! I'm doing at least something right. And Ruby? Well, give her some time. She'll get with the program, too.

The boy from baby house 14

2011-02-26T09:41:00.001-06:00

Just to be crystal clear...

I'm giving away my nearly-new, hard-cover copy of The Boy from Baby House 10 to help this little boy from baby house 14*:

*FYI - Baby house 14 is a random, made up number used by Reece's Rainbow

Check out those baby blues! And that sweet little pouty mouth! I'm in love. *sigh*

See? He can smile and laugh!! This little boy is going to be a HUGE blessing to his family. Could that be your family?

Someone you know?

Someone you don't know, but knows someone that you know?

Do you see where I'm going with that? Thanks for sharing this!

Gifts of ANY size to Andrey's grant fund are appreciated. Your name goes in the virtual hat for each $5 gifted.

Underdog

2011-02-24T21:07:00.007-06:00

Are you old enough to remember the not so kind and gentle days when the P.E. teacher would choose two team captains, two handsome and physically gifted young people no doubt, and those two team captains would build their teams by alternately choosing classmates to play on their team?

Well, I am. And I do.

Because I was always picked last. Or second to last.

Maybe that's why I'm compelled to root for the underdog.

Andrey is a classic example of an underdog. He is at a huge disadvantage in his country in Eastern Europe. He is considered inferior. He's weak and expected to be a loser.

Andrey has seen parents come, choose other children and leave. He's still waiting to be picked. He's an underdog and he's going down.

Andrey is already four years old. But, he can't sit up for long by himself anymore. He cannot stand anymore, even with help. He used to be able to do these things. He is regressing. His caregivers don't have time to work with him. They think he is a worthless imbecile.

This from Andrea, who spent several months volunteering at Andrey's orphanage:

"...Andrey is quite neglected at the orphanage. Because he doesn't really sit by himself, he spends pretty much all of his time alone in a big crib-like playpen. The workers compare him to the other children with DS and often say things like, "[Johnny] has down syndrome but he is smart, not like Andrey..." I have been
told that I was wasting my time with him and one day when Andrey & I were in the visiting room with [Johnny] & his parents the head secretary came by and told [Johnny's] parents that they had made the right choice..."

Andrey's caregivers are wrong. He is priceless. As the least of the very least, he is royalty in God's kingdom. The Underdog Prince Andrey! How we treat him and think of him is how we treat and think of our Lord.

Again, from Andrea:

"He is such a sweetheart, so cuddly and generally a content little guy...even just spending a couple hours a week with him, I saw a big change in him during the few months I had with him. He learned to pull himself up while holding my hands and started pulling himself up on the side of the crib whenever he saw me coming. He also became much more playful and interactive with me. He has a real sense of humour and would love to drop toys on the ground and make me pick them up again. He also thought it was very funny to take his booties off. He would wait 'till I turned my head, pull one off and then when I caught him he would laugh and laugh."

So why is this beautiful child sitting in an orphanage? I can't pretend to grasp the magnitude of pain and suffering in this world. It weighs me down at times. It crushes me at other times. However big the problem is, there is just no way that I can do nothing. How could I live with myself?

As bad as things are for Andrey, things may get worse when he is transferred to a mental asylum. By law, that is where he will go to live at a certain age, sometimes 4 or 5 years. This tiny boy who is losing his ability to even sit up will most certainly be assigned permanently to a crib. A tiny little jail cell for a tiny little inmate. Game over for my little underdog.

If he loses his ability to feed himself or hold a bottle he may be in real danger. Some children are tube fed at the baby houses, but I don't know about the institution. I feel that this precious boy is losing his will to live. He needs a family...like yesterday!

I've tried, and miserably failed, to adequately convey the hopelessness and boredom the children with Down Syndrome and other disabilities suffer in the baby houses and asylums in Eastern Europe. Some things are not easy to put into words. Not simply because they are awful, but because I don't have the frame of reference to fully understand the things I witnessed.

The hopelessness is crushing and the boredom is not leisurely, it's brutal. I was reminded of this after finally reading The Boy from Baby House 10 this week. The book is an amazing true story. The first four chapters left me with my mouth hanging wide open. I could have sworn that the authors had been with me visiting Theo in the room for the "incurables."

Please, won't you help me help Andrey? Before he regresses any further? Before he is transferred to an institution? He absolutely must have a family if he is to survive and reach his potential.

The only thing standing in the way of Andrey finding a family is money. Of course. Children with large adoption grant funds get families sooner. It's just a fact.

In honor of the Underdog Prince Andrey, I'm going to give away my copy of The Boy from Baby House 10. I'll draw names from the chip-in on World Down Syndrome Day, March 21st. Names go in the hat once for every $5 gifted. Please consider a tax deductible gift of any size to Andrey's grant fund through the chip-in posted here:

Sorry anon...

2011-02-23T09:16:00.001-06:00

Sorry anonymous...I can't do that right now. That should give you a clue. Leave me your email ( I won't publish it ) and I'd be glad to talk to you further.

Zhen

2011-02-22T23:23:00.005-06:00

I don't talk much about Zhen. Why? Truthfully, his physical transformation isn't nearly as dramatic as Theo. I love this kid like crazy.

And I'm not the only one.

Zhen is all boy. He likes to play rough. He likes to swing high. And as soon as everyone is having a great time and laughing and smiling...

...he will bonk heads with you, or bite. Arrgh. Teaching him how to play and how to give appropriate affection is an ongoing process.

But check out this innocent face! How angelic!

And check out that hair! Fluffy!

I tried to give him a haircut at Christmas. I got out the clippers and Zhen immediately got nervous. When I plugged them in, he started looking for escape routes! But seriously...

Zhen is either so bothered by the sensation and sound of the clippers that he cannot keep from panicking OR he was so traumatized by his regular head shavings in the orphanage that he cannot keep from panicking.

He panicked.

It made me want to cry.

I've seen a lot of things but I've never seen a child so frightened. All I could think of at the time was three or four ladies holding him down to shave his head. Maybe the clippers were dull and pulled hair. Maybe they cut his ears. I don't know.

I put the clippers away that night without trimming a single hair. I tried scissors, but Zhen was done. We both were.

A few weeks later I sat him in his high chair to watch me trim his big brother Richard's hair. Zhen howled and fussed. Then I put the clippers away.

The next day I decided that I was going to take the bull by the horns and trim his hair. ha! He sat on the bathroom floor and tried to hide his head between my ankles. That was OK. I let him hide while I did the back of his head. Then I turned him around and did the front.

I was quick. I didn't do a great job. But it got done. And we both lived.

Zhen came to us as a frightened little lamb. He is slowly gaining confidence. He's facing his fears, with a lot of help from others. I think that the internal transformations can be just as dramatic as the external ones, if you take the time to look.

Wordless Wednesday?

2011-02-16T18:27:00.001-06:00

The last dose.

2011-02-15T22:58:00.004-06:00

Tonight is a very special night. It doesn't feel special. It's not like I picked up the house or anything. Perhaps I should have!

Three times a day, every eight hours, every day, for the last (almost) four years I've given Ralph his pulmonary hypertension medication. For the first three years that included some other medications as well. Those were discontinued about a year ago.

With Ralph's school schedule I've been staying up until midnight each night to give his last dose of the day. That's late. To do that every night is tough.

Well, tonight is the last dose.

After tonight Ralph will be on ZERO medications. That's so huge.

There were days when I wondered if he would ever be healthy. It's hard to remember, but during some of those dark days I wondered how long he would survive. I never would have believed how strong and healthy he would become.

Ralph is a rock star!

Here is Ralph two years ago, still on oxygen. Here's my blog post that day. haha!

The diapers keep me sane.

2011-02-10T20:45:00.004-06:00

Actual life has been happening at our house even though it has been very quiet here for a bit. There has been drama and heartbreak but we plow through it. What else is there to do? I sometimes feel like my heart will implode but then...there are diapers to change. ha!

My son Richard had knee surgery last week. Poor boy has had nothing but trouble with his legs since he started running. If only his legs could match the literal and figurative strength and endurance of his heart. It was pretty fun, though, chatting with him as he came out of the anesthesia. I got to hear all about what a great girl Heather is. Over and over again. Don't get me wrong, I love Heather, but he was so dopey and dreamy that I had a good giggle!

Parent teacher conferences were fun. All my children are gifted geniuses, don't you know? I'm a recovering homeschooler, so having them in public schools is sometimes difficult for me to handle. I'm thankful that we have a great district and the teachers are all on the same page as me. They are doing a better job than I could do at this point in time. Someday, maybe...

My computer is broken. I kill them (computers) you know. Thankfully, it is under warranty so the repair will be covered, but I'm preparing to speak at the local Down Syndrome Society on Saturday and now I have no way to do my presentation. I'll scheme and scrape something together. It's not like I haven't known about this meeting for the past four months. I just work my best under intense pressure, I guess.

I'll let you know how it turns out. :)

Masha.

She still doesn't have a family. How can this be happening? I'm not the only one who is desperate for her. The speech therapist at the orphanage has twice dropped her off to play with two different American families this week. She wants them to help find her a family quickly.

This just NEVER happens. The staff would actually prefer if you don't even LOOK at another child. But, even last summer the therapist would often "show up" with Masha when I was playing outside with my boys. Now I'm beginning to understand...

She loves her, too.

And she knows where Masha is headed. Not a good place.

Pray!!

Well, since my regular computer is being shipped to the repair shop for the next week or so, I'm working on "old reliable." My 1999 model desktop. She still runs pretty good considering her advanced age.

Just for reading this far, I thought I would reward you with a random photo off of "old reliable." Since she doesn't show me thumbnails and I didn't rename my photos back then, it really is random. Here is what I picked today...a classic "tub shot" of Hammy and Fred!

Look at those baby faces!! Those are two of the sweetest boys on the earth. Hammy always reminds me to pray for Masha. When I told him that she would be moved to a new orphanage and not be able to go to school like him, the first thing he asked me was, "Can she still be adopted from that place?"

At the age of 5 (going on 6!), Hammy "gets it."