Our visit with the Myelo Clinic at Akron Children’s Hospital last week felt like we were prescribed a small dose of reality. Our hearts long for the hope that Jordan’s head, bladder, bowels, and legs will do more than the diagnosis tells us.
I came prepared to ask the question about where each specialist feels Jordan’s legs are functioning. I had somewhat prepared myself from studying what the outlook may look like, but I wanted a professional to verify what they see.
The consensus referred to Jordan’s level of function to be around the L4 level. This means his legs are not doing as well as we had hoped.
When I asked Dr. Jones, the orthopedic doctor, what this means as far as walking, he said Jordan will walk with braces that are above the knee or even up to the hips.
This also introduces the fact that crutches would also be needed. Ultimately he said if Jordan wants to walk, it’s up to him. But some kids end up getting frustrated and tired of working so hard to keep up, they would rather use a wheel chair.
Our hearts sank with the news. I will forever have the image of my husband’s face drain at the news. It does not change our love for our son or the determination we have to help him in whatever means possible, but our thoughts thus far have been maybe small braces for his feet.
We asked Dr. Jones about Peanut’s left foot, and he said we could have braces created to stretch his feet while he’s sleeping. It was so nice to have Brian from Hanger Orthopedics there to meet with us afterwards to cast him to make the braces.
As each specialist left the room, Randy and I had a chance to briefly debrief what was relayed to us. Right when we were reaching our end point Dr. Hudgins and his physician assistant, Holly Zeller, came in. There is something about this duo that takes our reality and adds a dose of positive hope.
I can’t tell you what it means to have a specialist who takes your fears and anxieties and cares enough to make you feel like no matter what, we’re in this together and we’re gonna do whatever it takes to assist Jordan in being the best Jordan he can be.
Randy left for work when we got home from our 5-hour appointment. I decided to snuggle up with our little man while he took a nap. Before he fell asleep I looked at him and said “I would choose you.”
This wasn’t our view of what our child’s life would look like. These aren’t the challenges we thought we would be facing in his first months of life. Or what his future may be. But he is ours.
We were chosen by God. He said, “I chose you.” I chose you to pour love over this child. I chose you as parents/partners/friends to walk through life with a child that may view life differently than the rest of the children in the world. I loved you so much that I entrusted you with a child who spreads light to every person he looks at with those crystal blue eyes and infectious grin.
How humbling it is to think that the creator of the universe gave us such an amazing opportunity to spend each day with such an amazing sweet little boy.
Read more about Megs and Randy’s journey of raising a child with spina bifida through her blog, Labor of Love.