Deuteronomy 31.6

So my heart is so swelled with pride right now I just have to share...

On Monday night we started a new community group and we were asked to share about a time in our lives where we had to wait on the Lord.  Of course Andrew shared about the months from Beau's initial diagnosis to the time he was born and within our story how the genetic counselors prompted us to abort.... of course from a medical perspective, they see a child with disabilities as one who is a burden on the healthcare system and someone who will never be "able"... able to learn, able to communicate, able to walk, able to eat by mouth, able to... you name it.

This afternoon, Andrew and I were lounging around the house and he was sharing with me his "On This Day" from 4 years ago... just two days before our precious boy would be born and it read this:

"So we went to the hospital for a growth check and Beau is under weight. He should be between 4-4.5lb and he is at 3lb12oz. So they checked the placenta and umbilical cord and found that there is restricted blood flow in the umbilical cord; Parts are flowing perfect while other are not flowing at all. Beau's body parts are forming perfectly as far as they can see but he is not gaining the body fat he should be causing Beau to be under weight.

This is also known as Intrauterine growth restriction (IUGR). It is also common for babies with Down Syndrome and heart defect (both of which Beau has). So Marisa has been admitted into labor and delivery for 48 hours to undergo evaluation and testing to make sure Beau is doing well. At the end of 48 hours the doctors will evaluate the findings and do another ultrasound. If Beau is stable and gaining weight slowly we will be sent home and have weekly check ups and to monitor the progress.This would also most likely mean Marisa will be induced early around 37 weeks possibly.

If he tends to be under stress and problems are discovered during these next 48 hours, Marisa has a good chance of being induced early next week(Sunday, Monday, Tuesday) and will have Beau at 33-34 weeks. This would mean Beau will be in the NICU for several weeks.

We are in good spirits and handling everything really well. God has given us amazing focus, strength, and patiences with all of Beau's needs and we are prepared for Gods perfect timing. Prayers for strength for Marisa and Gods perfect timing and plan and to use Beau, myself and Marisa as witness's to God's power, grace and love." 

Sometimes I'm so humbled by God's goodness to have me at that hospital at that exact day, scheduled for an ultrasound (I didn't even know I was scheduled to have!) because within days we could've lost our boy. But that's not the point of this post!  Haha... I just wanted to add that for sentimental purposes.  How is our boy 4 on Friday?!

At bedtime tonight, I had just finished brushing Beau's teeth and I pull out my phone to snap a quick selfie!  After he brushes his teeth he loves to give me a big hug and give the mirror a cheesy grin to show off his clean teeth! I usually get a sweet smile outta him so I decided tonight to turn it on video because he was being so silly!  Lately he has been signing songs to himself that I honestly don't know - they must be from church or school.  Well his selfie smiles turned into song time and before I know it, he recites his ENTIRE Bible verse by heart! <3 <3 <3 (no signing help or words from me AT ALL... completely unprompted! And for the record... we've been practicing for 2 weeks and he usually says "bless" instead of "with" but he got it right all on his own!) 

Be strong and courageous, do not be afraid, for the Lord your God will go with you. 

Deuteronomy 31.6

Ya'll I was practically in tears! I am just so blown away by how amazing he is! 

how capABLE,

how bright,

how BEAUtiful his precious life is! 

#blessedmama  <-- Jackie i'm stealing that # from you! 

(video on FB and IG) 

The Little Things / Morning storytime

I've been trying to spend more "me" time this year (yes, it was a new years resolution) - reading, doing puzzles, crafting - things that I enjoy and help me unwind and rejuvenate. So I've been finally finishing up a couple books that have been "open" for some time... like even a few years!

I've picked back up Bloom by Kelle Hampton which tells of her journey with a daughter who has Down syndrome.  As I'm reading, she mentions how she wants to remember the "little things" (which she coined as her blog title "Enjoying the small things") and that just resonated with me.  I take a lot of pictures and capture a lot of moments that way but I want to remember the sweet simple moments that bring me joy throughout our days. Kelle said, "I wrote about the moments I wanted to remember - the happy, beautiful things I knew I would otherwise forget." So I'm going to start doing just that!

You might think I'm crazy when I tell you this but I've actually kept a log since Beau was born of all his milestones, new things he does, silly habits, new skills, funny moments.  I just didn't want to forget anything because with the DS stigma of "oh he'll never do that." I wanted to make sure I remembered them ALL.  For the first three years of his life, I kept a calendar and would often write down the little things that we did and things he was accomplishing. Now, I keep a running note in my phone and add to it whenever I notice something new. However I think there's just something that words can tell that a picture just can't and I want to document that too.

I had picked back up Bloom on Monday and was reading before bed. Then the next morning, which happened to be the first day of school, we had our morning time together. Daddy is already off to work and the school bus hasn't come yet. I don't actually know when this began, sometime this summer or even at the end of last school year we began reading books for about a 1/2 hour each morning before breakfast, before the other kids got dropped off (I do childcare).  We snuggle up on the couch for story time.   I would ask him if he wanted to read which he enthusiastically nods "yes," every time!  I go sit on the couch and he picks the first book out of the bucket and brings it to me.  Then he points to the blanket ladder and says "eh, eh" to tell me he wants one.  So I pull one of them down and pull it up over my lap as I hold the other half up so he can crawl up under. He uses all 4s and his head to get up on the couch and does a couple "bops" up and down to get comfortable with his feeding pump backpack squished behind him.  Then I tuck the blanket around him and under his legs and he gives me the biggest smile to tell me he's "ready to read." And then one book at a time we read and sign our way through. After each book he returns it to the bucket and grabs another and another and another.  Its such a simple moment but it makes my heart melt.  He loves to read, just like his mama.

This is a photo Dada snapped of us reading before bed, tucked under our blanket together. <3