In His Hands

Sunday, October 1, 2017

George Goes for a Wash

So I intended this blog to be the mostly good, but sometimes bad and ugly of our everyday and today was some ugly. Quite honesty, the last 5 days have been ugly. Beau picked up a stomach bug on Wednesday and has spent the last 5 days vomiting up all his milk feeds and having diarrhea. Wonderful right?

So I knew we'd have to skip church this morning but I still wanted to get a few things done around the house as much of the last three days has been spent lounging around. I open the wash machine to find this....

PAPER! All over our entire load of laundry! So I try to push the clothes around and discover that Beau had put his new birthday book "Curious George Goes Bowling" into the wash machine yesterday without me noticing. See, I typically leave the washer open and throw the clothes in throughout the day and start it when it's full. Well, somehow during my "collection hours" Beau dropped a few of his things into the wash without my noticing. I even recall scooping up one final arm full yesterday evening and dropped it right in and started it up. The funny thing is, the washer was making an awful noice, I even messaged Andrew to tell him that it might be broken but didn't think it would be anything IN the wash. Well boy was I wrong!

After taking out all the clothes one item at a time and shaking them outside to free up the paper particles, I discover that not only did he put in a book but also his new Leapfrog letter game that we got him for his birthday. ugh... well we are 0/2.

I have to tell you, I've never taken a vacuum to my wash machine until now! Though this was "icing on the cake" after our long sick weekend, I have to smile because Beau is picking up on everything we do, including the laundry. He helps me push the wet clothes into the dryer, fold the dry clothes, put his shirts and jammies on the hangers and match the socks. So why would I be surprised that he would put things in the wash machine the way I do too? He is even known to put things in the sink now and again as well.

So there ya have it! Our first day celebrating National Down Syndrome Awareness Month and here's a fact for you, kids with Down syndrome get it as much trouble as those who are typical!

Wednesday, September 13, 2017

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)

Wednesday, September 6, 2017

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

Tuesday, December 27, 2016

Welcome Home Dada!

Homecoming day!!!

Andrew was originally supposed to arrive ON our anniversary (July 5th) but his flights got delayed a day *sigh* so I had an extra day to make all our preparations before his arrival! I got his welcome home sign hung in the front yard, nails ready, decorations up, and we headed to the airport mid-afternoon with the photographer and my good friend Jess to videotape!

Our posters for Dada!

"With every step I try to hard to walk in your shoes, My HERO, My DADA! I've 'moosed' you!"

"Love endures all things - 1 cor. 13.7 Welcome Home AE2! Your MRS. wants her 8th Anniversary KISSES!"

We got to the airport to find out that his flight (of which Andrew was 1 of 2 passengers) was delayed an hour so we had to wait around and do lots of signing and watch an episode of Baby Signing Time (beaus' fav).

Andrew had known that Beau was taking steps but he wasn't aware that Beau was walking all over the house and fairly steady on his feet by now! We were ready to surprise him! I got CHOKED up when Andrew headed our way and it brings tears to my eye thinking of the moment now!

WE SEE HIM! Beau outstretches his arms "AAAh!" (in his sweet lil grunt)

Dada! (signing)

The embrace!

Smiles all around :)

Family

Kisses <3

Our first selfie back together! (We sent this one to family right away)

Hand in hand

I had lined up a babysitter ahead of time so we could go out to celebrate our anniversary that evening! Dinner at Gordon Biersch and gelato at Strawberry Fields - our favorite!

We are all so happy to have him home! <3

Deployment debrief

It's already DECEMBER and I haven't blogged about life in well... a YEAR. I feel like I don't even know where to start quite honestly because we've just been trying to keep busy. But for the sake of using this blog as a life journal as well, I'll pick up where I left off in November. Andrew left for deployment to Bahrain on November 19th (2015). Prior to leaving we got a 4 day weekend away to DC at the end of October while his mom watched Beau. We also pre-celebrated Thanksgiving and Christmas! And now gone and home from deployment! Time went by more quickly than I had originally imagined it would. It has been a blessing to be able to Facetime almost everyday and I have several beautiful friends who have helped me pass the time.

To keep busy... I had my discipleship group every Tuesday night, Refuel mid-week service at church on Wednesday and then one Monday a month I go to a Special Needs Moms group. Then of course we tried to stay busy with events around town which was easy to do especially during the holiday season. In January, I started watching a friend's lil girl which has been a nice way to bring in a lil extra money while I stay home with Beau. It still allows me almost 2 hours of me time between when M goes to school and Beau gets home. I also try to utilize respite care as much as I can to do social stuff. We have had lots of play dates, lunch dates, and more sickness than one would like so we've spent a fair share of days visiting the hospital. I've re-learned to jump-start a car and even changed both car batteries (with my own two hands) this winter too! If you keep up with my instagram you have seen my photo a day since Andrew left which has been a fun way for me to find joy each day while he is away. If you haven't, here are some picture highlights of those 7 months aaprt.

November 2015:

Deployment Day - I could hardly open my eyes this early, and I wasn't even crying yet!

Botanical Gardens Holiday Lights with Ashley

Thanksgiving fun - pudding paint turkeys with T, hand turkeys with P, Thanksgiving dinner with the M family, and Friends-giving

Beau's first movie in the theater - The Good Dinosaur; he stayed awake about 45 minutes

Holiday Photos to surprise Daddy

December 2015:
Busch Gardens "Twinkle Town" with Ash and the M family - Beau's first amusement park ride!

Three unsuccessful visits to Santa - USO holiday party, Down Syndrome Christmas Party and Santa's Village

Holiday Program at Preschool - Jingle Bell Rock, Beau with his preschool teachers

Santa's seaside village with the Barrie Family

Christmas - we went to church and then Ashley's for dinner. Christmas day we opened presents on Facetime and Beau took 5 minutes per package! He wasn't so sure about his dinosaur slippers! We got Andrew a Teddy Bridgewater jersey!

Dec 29th - Cardiology appointment went well. There were no significant changes to Beau's heart since his appointment in September. The doctor is closely watching his aorta as it has a mild leak and the pressure in his ventricles. So at this point no medication or surgery is needed at this time.

January 2016:

Giving Dada kisses <3

Playing at the library with new friends.

I started watching Macie; the kids love to play together! And Beau is finally taking some independent steps!

Getting to smart and trying to attach his g-tube extension to his milk line.

Attended Music Together classes at the beginning of January for 9 weeks.

January 17th SNOW

Making Dada's valentine

Enjoying a walk on a gorgeous day after some professional photos for daddy!

Jesus loves me this I know, for the Bible tell me so. Little ones to him belong, they are weak but He is STRONG!

Love these photos of Luna and Ty in the snow!

Andrew's Birthday gifts

February 2016: I currently can't find my whole digital photo album for the month of February?!
5/6 IF gathering
6th - Prestons birthday party
14th Valentine's Day with the girls
25th rehome dogs (see previous blog)

March 2016:
8th - Beau ate a whole fruit pouch!

12th - easter Egg hunt #1

15th - I go to a discipleship group once a week and Katie leads me and 3 other beautiful women of God to go deeper and grow stronger in the Lord.

March 15th - Beau had professional pictures taken for his 2.5 years!

Happy St. Patrick's Day!

19th - Beau had his first day of swim lessons

Lauren and I went to the homefront celebration to honor military spouses

21st - World Down Syndrome Day!

23th-29th Jilayna came to visit! Here are just a few photos! We did some serious mermaid hunting, went to the Botanical Gardens, the zoo and an Easter Egg hunt #2

Easter morning at church

Dying Easter Eggs

31st Zoo trip with both kids and got to see the baby tigers!

April 2016:
8th - Botanical Gardens with Carrie and kids

13th - 19th Mom came to town! Beau was sick part of the time (go figure) but we still had fun and she helped me fix up the backyard for Andrew's return! We took her to the botanical gardens, Hermitage gardens,

Beau in his hip-helpers! This one makes me laugh :) And a bi-annual dental visit - never fun!

19th - Norfolk International Tattoo

29-30 Went to Beth Moore's Living Proof Live with Jess, Ashley and Katie (Can't find pic)

30 - NICU reunion with Nurse Leah and his first successful time in a bounce house!