“Don’t run through life so fast that you forget not only where you’ve been, but also where you’re going.” ~Nancye Sims
Hopefully those of you reading my blog often aren’t in withdrawals. It’s been just over a week and we’ve managed to stay out of the hospital. Yes, it’s reason to celebrate that a lack of updates is a sign that Chance is doing well. We’ve been spending time at home together. It’s kind of funny how being stuck in a hospital for so long can cause you to celebrate some of the simplest of moments.
This past week marked the trifecta of moments for our family as our 14th anniversary, Jaylen’s 4th birthday, and my birthday passed three days in a row. It was tough for us to hold any big celebrations between just rebounding from the hospital and juggling our crazy work schedules. We’ll likely have a party for Hope & Jaylen together soon seeing how their birthdays fall so close together. Thankfully this sweet little boy of mine isn’t so obsessed with the thoughts of his birthday or parties so instead his special day we spent with just him and helping remind him just how loved he is. This was taken the night before his birthday when we talked about his birthday and asking him how old he’d be. It seems like I’ve blinked and my baby boy is now four. I’m still not so sure how that happened so fast.
The kid’s birthdays are always that milestone that make me pause and reflect on how much they’ve grown. I suppose I’ve been pausing all week knowing I’d write on my blog this week with sweet thoughts about my baby boy, like how:
- He’s the best big brother ever. No, really, he is. He runs to help Chance anytime he cries. He’ll lay next to him trying to “shhhh” him to sleep. He’ll pat his back. He’ll sit and sing patty cake or show off his toys to make his little brother smile.
- He’s the best little brother too. He adores his big sister. When she’s at school or playing with friends he tells us how much he misses her.
- I am totally in love with every time he tells us all that he “lubs” us.
- He’s still reserved in how much he cares to talk, but he’s begun to say much more of what is on his mind these days. I use to be worried about how little he talked…now I’m convinced that he’s just smart enough not to share all this thoughts out loud.
- He still loves to talk in color. You know…saying he wants to go to “red” is target. “red & yellow” is McDonald’s. “red & white” is chick-fil-a. “green” is publix. “green & yellow” is Olive garden. In the last month or so he’s finally started to say some of the names of these places but I’m still fascinated by how he identifies places by color.
- His smile makes my heart melt.
- He would eat ego cinnamon toast waffles every day for every single meal if I let him. And he’d have chocolate milk just as often.
- He’s my gadget kid. He can work my iphone and ipad better than I probably can.
- He’s convinced he’s a superhero. Batman and spiderman are his favorite these days. But really every single superhero he loves. Of course he’s my kid…so being a superhero kind of goes along with being in our family.
- His favorite toy these days are squinkies. He’s obsessed with them, especially the superhero ones. They’re the type of toys that are so small that they get lost easily. I’ve lost track of how many times he’s been devastated after he’s lost his spiderman squinky.
On his birthday I elected not to obsessively take photos of him. Yes, I know…sounds odd, right. By the end of the day I realized I had yet to take his photo and asked him if I could take just one photo and he said yes. He sure knows how to make my day!
Happy 4th birthday baby boy…
A lot of you have been asking me how Chance has been doing since we got home. Thus far he seems to be doing well with his new shunt. It’s inevitable though…I am paranoid. Watching him go through 6 of his 11 surgeries in just over 2 months time leaves me quite nervous. He’s been far more clingy this past week and preferring to be held or cuddling most times. So any time I am able to sit him down and he’s content I am appreciative of.
Being out of the hospital for a week has left me admiring some of the simplest of moments. Like the boys playing superheroes on the iPad.
Aside from facebook going off a couple hundred times with so many sweet birthday wishes the day was rather uneventful. The best sentiment received was given by my baby girl in this little card she had made for me before she left for school. Little does she know it’s the most perfect and special gift I received.
At times this week I began to feel like being home was almost more challenging than being in the hospital. Chance was super fussy and clingy at times and here I began to wonder if he was on the verge of shunt problems, teething, or perhaps…maybe, just maybe…this kid was just too couped up and anxious to get out of the house. Of course…that was it. The few times we went out for brief moments he cheered right up. Saturday we elected to take him to our niece Raven’s special day at the Down Synrome walk in Orlando. He was quite excited to venture out.
We spent a little time yesterday morning spending time with Raven at the walk. We hesitated in the decision to go because Chance has only been out of the hospital a week and his head still has a ways to go before it heals more so we know he’s at a higher risk for infection. I’m sure we’ll have his doctors shaking their heads at us for taking him out but given how well he’s been doing we decided to take a “chance” and support our sweet niece for a brief period of time. When his doctor sees this photo of him and his Uncle Erik hopefully she knows that Chance must have been trying to tell us that he was worried she might not approve of him being out.
Raven turned two this summer and now has such a sweet personality. Here she was in one of my new favorite photos of her as she celebrated at the walk while riding on her daddy’s shoulders. I sure love that smile!
Now I promise, I’ve been trying to take more photos of Hope & Jaylen but they really prefer to have little to do with my camera lately. After the walk yesterday I made an attempt to photograph Hope and it totally captured her mood lately. My baby girl has been so worried about Chance this year. She’s also at the age where she wants to spend every moment with her friends and having fun so she’s sure to be opinionated when she doesn’t get her way. I’m not so sure how much telling her I love her or thanking her for being such a great big sister & daughter will mean in the years ahead but I’ll keep telling her…and pray she never forgets just how incredibly special she is.
The past week Jason and I have resumed our schedules and things certainly so no signs of slowing down. But that’s okay…any and every day that we’re out of the hospital with our baby boy is a reason to celebrate.
I promise there have been many more busy moments beyond what you’ve read & seen in this post. I can’t wait to share all the walk-n-roll stuff I’ve been working on…I promise you’ll hear more about all that soon enough.
We’re just a few hours away from Chance’s 11th surgery. This past week I’ve had so many of you reach out to me and our family and ask “What can I do to help?” Aside from prayers you all do have a big way you can help me out, especially if you live in the Orlando area. As many of you may have heard, I’ve been very involved this year in raising awareness about spina bifida and helping raise funds for our local Spina Bifida Associaton Chapter here in central Florida. Thanks to my colleague, Josh Murdock, he’s helped coordinate a great fundraising event tonight. If you haven’t heard about the food trucks roaming around the Orlando area you might want to take a bit of time to head out to this event tonight as they 
by Amanda Kern
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