Tuesday, March 29, 2011

So, I had a hard day.

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!

...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.

Friday, March 25, 2011

Guess who has glasses?

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!

Thursday, March 24, 2011

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!

Monday, March 21, 2011

Happy WDSD!!

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?

Thursday, March 17, 2011

Fun with Theo...

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.

Tuesday, March 15, 2011

PH sucks.

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.

Monday, March 14, 2011

Fun with brown paper.

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.

Monday, March 7, 2011

A different kind of crazy.

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.

Sunday, March 6, 2011

Breadballs and Birthday Cakes.

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.

Wednesday, March 2, 2011

When you say ret*rd...

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 SPARKLY? (hat tip: Carolyn of Project Hopeful)

...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.

Tuesday, March 1, 2011

Ralphie goes to the dentist!

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.