Monday, October 21, 2013

October, 2011 Down Syndrome Awareness Month... Day 4



A small victory...

I know I promised nothing heavy today... I even promised a laugh or two... but we experienced a small victory last night. It's not heavy, just absolutely thrilling!

Josh slept thru the night... in his own bed... all by himself... all night!!!!!!!!!!! 

Did everyone hear that??

Josh... he slept in his own bed, all by himself, all night!!!!

Yeah, I know... I should have posted this 8 or so years ago. The whole cry it out thing went flying out the window when my last baby was born. Plus, he had needs that were different than the others (please don't ask me what those are... just know that's one of my justifications for sleeping with him for 8 years!). I think I felt like I needed to protect him or something.

And you have never seen anyone work a bed like Josh... upside down, inside out, head on heels, sitting up, head hitting wall, feet kicking, hands flying... forget blankets. We've had blood tests, reflux tests and sleep studies. We've tried big beds, little beds and floors. We've used 1 pillow, 6 pillows and no pillows. Night time is not usually considered fabulous! For me anyway... he sleeps fine thru it all. Unless I'm not with him.

For the last week or so, we have worked hard at getting him to stay in his bed, alone. My dark circles are proof that it hasn't come easy. But last night... HE DID IT! We were all so proud of him this morning! High fives, hugs... we even swung him in the air! He was tickled.

Every small victory gets big recognition around here. Josh works hard to succeed. Maybe it's sounding out words correctly, putting on his shoes or sleeping all alone in his bed all night long... we clap and sing and dance. He works hard for things that come so naturally to the rest of us.

So this morning we celebrated (and hoped nobody was watching)! You should see us when he takes a bite of a food he's never tried before!!! :)

October, 2011 Down Syndrome Awareness Month... Day 3



The first hours...

When I first set eyes on Josh, I knew he had Down Syndrome. It's the eyes... can't mistake 'em. Everyone was quiet tho, so I certainly didn't ask quickly. Finally, I asked my nurse and she answered my question with a question... "what makes you think he has Down Syndrome?" She was very calm, but her tone gave it away. We already knew he was struggling to breath... and didn't know why... and now THIS? Soon, words like heart defect and trisomy 21 and O2 sats and ventricular septal defect and pulmonary hypertension and transfer to Boston started flying around the room.

Really God? Just yesterday I was bragging about my 3 day "vacation" when the baby was born.

I began praying.

As Jon went to the nursery to be with Josh, I was alone in my room. I'm sure I was only alone for minutes, but it certainly did seem like days. Close to an eternity...

But God was there.

God calmed my fears and gave me a song (okay, that might sound really silly but how else can you explain me singing a children's song in the midst of this crisis?). The lyrics were this...

All things bright and beautiful,
all creatures great and small,
all things wise and wonderful:
the Lord God made them all.

I knew instantly that everything was going to be okay. I knew that whether or not he lived or died... everything would be okay. I just wasn't sure which one of those I was more scared of (told you, real life feelings here)!

I knew that God created Joshua beautiful and small and wonderful... I just wasn't sure about the other words in those lyrics. What about bright and great and wise God? I didn't question God's goodness, I questioned my ability. But even in my uncertainty, God gave peace. And hope. And love.

Almost 9 years have passed the feelings are all still very real. I'd like to say I don't continue to question my ability, but I'd be lying. I'd like to say things have been really great every day, but I'd be lying. I'd like to say I haven't asked God... on more than 1 occasion... why He picked ME to be Josh's mom, but I'd be lying. I can say with certainty tho, that God CONTINUES to give peace and hope and more love than my heart can even contain. People don't understand when I say I'm thankful for Down Syndrome. But I am.