“Believe you can and you’re halfway there.” ~Theodore Roosevelt
I’m so excited to finally get to share a few moments from Chance’s physical therapy at Arnold Palmer Hospital. He’s been going through therapy one day a week since the beginning of last December and it’s been torture for me to take him and not be permitted to take photos in his sessions due to the hospital’s photography policy. Thankfully we have a lot of admirers of our baby boy and after months of asking for permission I was finally permitted to take a few photos during his session. Though I had a few limitations, I am still incredibly happy that I finally got to capture and now share some of these memorable moments on this journey with our baby boy.
Most that follow my blog know that our son Chance was born with spina bifida a little over a year and a half ago. He was born with an opening in his back that has affected some of the nerves that control things such as his mobility. We’ve been told that his lesion level was around L4-L5 and now we support him the best that we can to get him to be as mobile as he can possibly be. I’ve spent most of the last two+ years since we learned he’d be born with spina bifida trying not to worry if he’d have mobility challenges. Yes, I’ve been scared that he may never walk…but in my mind I’ve been waiting, patiently waiting…for that day when he walks on his own. When I was pregnant and even the first few months after he was born I prayed he’d be one of the ones that would never need any assistance or support…yes, I’ve been dreaming that he’d not only walk, but run…and so well that no one would ever know he had spina bifida. We’ve prayed and prayed and prayed…and still continue to but as time passes we’ve come to realize and accept that our baby boy was born with spina bifida and he does need a little extra support. Yes, it’s going to take a little longer for him to reach some milestones and that’s really hard for me to accept still…but I tell you what…as heartbreaking as it is to know how much he’s challenged – it’s such an amazing feeling when he finally begins to reach those milestones that we once worried if his little body would be capable of meeting.
Chance learned to sit when he was around a year old. He learned to scoot or army crawl around the house over the last few months and just in the last month or two he’s begun to crawl up on all fours. All milestones we celebrated and feel blessed to see him reaching. Over the last few months as we’ve begun to see him build strength in his legs we have waited for the day that he’d be ready to stand and take steps. In the last two months he’s begun to pull up onto things and stand with support. We continue be overjoyed but realize that those little legs of his…they are just a little different because of his spina bifida. They are growing stronger, but they still buckle and give in a little too easily. His little feet turn easily so he still requires the use of AKO’s to give him stability around his ankles as he stands and over the last month or so we’ve been working with him using a walker at physical therapy. It seems like we’ve been working for quite some time on getting him to move those legs in a stepping motion. Several sessions I recall us trying so hard and it took his therapist moving his legs for him for us to get anywhere. So many times in my head I remember praying “come on legs…work”. At times during sessions my heart has stopped as I’ve seen his therapist work with him so hard…wondering if it’s my son’s stubbornness causing him not to be able to step like he needs to….or if it’s because he’s not strong enough yet…or if those little nerves that control his legs are just too damaged. I’m convinced it’s a combination of the three.
With a lot of patience, hard work, and support we finally got him to take steps on his own over the last three weeks while he’s used a walker. It’s a HUGE deal. He can move those legs just as he needs to in order to take steps. Finally last week his therapist gave me permission to bring my camera into a session and capture a few moments….yes, this has been a year of hard work in the making. Now before I had Chance I have to admit I heard people talk about physical therapy and thought…oh, no big deal…it should be fun. No, physical therapy is hard work…for Chance, for his therapist, and for parents it can be an emotional roller coaster. His sessions success are often dictated in part by his mood of the day. We always try so hard to ensure he’s napped well beforehand, and thankfully the stars must have been aligned yesterday because this kid was absolutely amazing from the moment we greeted his therapist and began working on taking more steps.
Seeing how Chance steps reminds me that I was once humored by other parents of children with spina bifida that spina bifida is God’s way of giving a person a “natural swagger”. It may not be the funniest thing to hear but most affected by spina bifida will likely smile and understand that though many with spina bifida may walk, most will walk just a little differently. Those little feet of his get twisted up often still…but I’m thrilled they are beginning to take steps like he needs them to.
It was an even more memorable day because Jason was able to join us at his session. Jason works polar opposite shifts from me most days and so I felt blessed to have him there to take part in the session and also free me up to take some pictures of our baby boy.
Physical therapy isn’t all work though, his therapist is amazing at making it fun for him. Chance really loves to play with toys during therapy and he especially loves the toys that he gets to place into things. We roamed around the room with this little container of shapes and he had a blast with them. Okay, this little square ended up his pretend phone and he said “hello” before he put it back in the container.
Though I remember the playful moments and his achievements made during sessions…one of the toughest parts of therapy that’s hard to forget are the cries and seeing how hard it is for him.
But our baby boy is determined. I’ve been told by many that he’s inherited my determination…no, I seriously think our baby boy may be more determined than anyone I’ll ever know, even more determined than me. You never really understand how meaningful those milestones are until you realize how far one must go to reach them. Baby boy I know this is hard…but I know you can do this…yes, please never forget that YOU are the one who taught ME to NEVER give up.
Yes, that’s what I seem to say often to him in sessions “don’t give up” or “you can do it”.
His sessions are often in an open room where other therapists are present and working with other kids. Sometimes extra people in the room help cheer him up a little. There was another little boy a year or two older than him learning to walk with a walker too…yes, Chance you have reason to smile – you’re not alone.
I know those on facebook may be annoyed with me posting some of the milestones…just simple things like him standing or stepping…it may seem like little things to some…but to my child it is a big deal. You have no idea how hard it has been for this little guy to get to where he is now. We will keep pushing you little man…because we know you need it.
He loves to play ball so we switched to letting him walk to the ball.
It really was a roller coaster of smiles and crying….but as time passes we are so blessed to sense that he’s beginning to get it. He recognizes that that walker and those feet will help him get to going where he wants to go.
Of course playing ball with his big brother helps in lifting his spirits. His big brother has been an amazing sport and has accompanied us to most of his sessions. Often times he sits, watches, or plays quietly as we work with Chance. Other times he gets to participate and it’s fun for them both. Yes, it makes me that much more excited to see that we’re in this together…every single one of us are doing all we can to give this little guy our support to ensure he can do what he’s capable of.
The last two weeks we’ve been a little thrilled that not only is he taking steps on his own with the walker but his therapist has been able to let go for brief periods of time and he’s been able to maneuver on his own. The moments are very brief…but still a huge accomplishment for him.
Chance should be getting his own walker very soon…so give it a little time and I have this feeling Super Chance will be flying circles around us all. We’re soooo proud of you Chance Matthew!
A big thanks to Arnold Palmer Hospital for allowing me to take a few photos. It’s been nearly a year that I’ve waited for this moment to not only watch him stake steps but to take photos of him in therapy and though I haven’t quite understood the policy completely, I have learned to respect it and I pray that sharing these moments perhaps gives the hospital the confidence to see that permitting families to take photos can be a pretty amazing thing. A bigger thanks to Chance’s therapist…she’s worked with him virtually every week for the past 11 months and now feels a lot like family. Yes, I will be praying for the day that the policy changes so that I can take a photo of these two together…she’s been a blessing to our family and our baby boy for helping him get this far and we know she’s going to continue to push him to do as much as he’s capable of.
by Amanda Kern
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