Purpose & Blessings

We’ve been at the hospital for four days now with Chance. This little man is still waking up all smiles. I know many of you out there have been feeling heartbroken over all you’ve seen my baby boy up against lately but I have to tell you that we still feel so blessed despite the circumstances. The longer we are here the more glimpses of things we see and I can tell you that circumstances could be so much worse…so I am thankful…but yes, quite ready to be home now.

Chance and I woke up early this morning. I was preparing to leave my baby boy behind for a few hours to do a photo shoot. It’s tough to leave his side but given that he’s stable I felt it was a good reason to escape and take a bit of a break from the hospital. I have no doubts that Chance supported me on this one…the photoshoot planned was to finally meet some of our new friends who also have spina bifida. We had the photoshoot scheduled last weekend but his surgery last weekend interfered with our plans. As I got my stuff gathered to head out I admired watching this little guy…and really not wanting to leave his side.

Before I left he fell asleep again. I kept hesitating on whether I should commit to this photo shoot that I had this morning but given that he was doing well I just knew it was something that would help me, him, and help us both continue to create awareness about spina bifida. The more I think about all we’ve been through and having Chance I realize he is here for a purpose…and in having him here…somehow all this is giving me that much more purpose to do the things I know may very well impact the spina bifida community in a very positive way. So I headed out while my baby boy rested peacefully.

This morning I met four families who all have a child with spina bifida. The goal was to take photos that would potentially be used for the Spina Bifida Association and for the upcoming Walk-n-roll event promotional material. These families were chosen because they have also been very proactive in helping with the fundraising efforts for the Walk-n-roll. I’m quite excited to feature the kids to help create awareness about spina bifida. Aiden who is just a few years old arrived full of energy. He uses a walker to assist him in getting around but it certainly didn’t slow him down.

In fact, he had me running around after him. He had a blast racing me…and I swear he always beat me.

Really, he was amazing to watch…there wasn’t much getting in his way of getting around.

Of course it’s tough not to also admire his adorable smile.

Meet Dominick. He’s thirteen and also has spina bifida. He was the oldest of the kids but we still managed to get him involved and I had a lot of fun getting to know him.

He’s pretty darn fast too…there wasn’t much stopping him. It was an eye opening experience for me seeing each and every kid today get around today…sure they do a lot of this stuff differently than most people but their challenges certainly didn’t prevent them from doing what they wanted to do.

Dominick told me he liked to take photos…so here he is after I trained him how to use my camera. He sure looks like a pro already, eh!?

Of course I had to steal my camera back so I could take more awesome photos of him…

Dominick lead the way today…here he is with 18 month old Patricia who also has spina bifida.

They spent some time together and I tried my best to photograph them moving around but they were just so darn fast but so much fun to watch. At one point the paused…and this was the “moment” that made all us parents say “awe…”

Patricia was pretty amazing to watch. It’s tough to believe this little girl this young has mastered maneuvering this stander device that helps her get around. But she moved around like a pro and totally impressed me.

I fell in love with Patricia’s expressions.

Four year old Jordan was the last child I met with. He also has spina bifida and was exceptionally cute today. I’ve photographed a lot of kids but I have to say that he was one of the most articulate four year olds I’ve met. He was such a high spirited, curious, and happy kid.

Yes, this kid has personality…the kind that is tough not to fall in love with. Jordan you rock my friend…thanks for making me laugh today.

I returned back to the hospital and shortly after Jason headed out to pick up the kids and take care of some things at home. It left me watching over this sweet baby boy of mine who rested more. I’m praying he’ll have recovered enough for us to go forward with the next surgery so we can go home soon. Yesterday his CSF had gotten really clear, which is a great sign. Today he had a bit of bleeding again, possibly from moving around with that wire. I’m praying it doesn’t prolong whatever comes next.

Chance had visitors today. We haven’t had many at all until today. If you’ve been following my blog you likely recall Chance’s spina bifida friend, Mason’s mother, Mary. She was sweet enough to stop in and chat for a bit and spend some time with my baby boy. Chance’s new spina bifida friend, Dominick also stopped in with his mother to say hello. It was a nice distraction and we all got to chat about spina bifida and our experiences a bit more. I am pretty sure Chance enjoyed the company.

Mary caught us in the room one of the few times of the day that all five of us were present. At most we might all be in the room together as a family an hour out of the day. It’s tough for the kids to stay for long without getting bored or worked up. Mary was courageous enough to pick up my camera to take a few photos…so we finally have one to share of all of us.

The nurses gave Chance a bath again today. His head has to stay super clean to help prevent infection. The nurse decided to give him a faux hawk. I don’t think he realizes just how cute he looked.

And then we all told him…and he must have believed us.

This evening I left Chance behind again. Yes, twice in one day. I must sound like the worst parent…but it was worth taking a walk across the street to Winnie Palmer to meet with a family who had their baby about four weeks early. Here’s Finn who’s just 2 days old. He’s got some growing to do and some things to be monitored before he goes home…but as you can see…he’s perfect…and a blessing.

Yes, it totally sucks to still be here at the hospital…but no matter how much I sit here wishing to go home…today was that reminder that despite the circumstances all this happening has a purpose…and that I have all the reason in the world to feel blessed.