I was thinking back to when we first learned Mason would be born with Spina bifida, clubfeet, and other issues. I had so many worries and fears, there were so many unknowns. I share Mason’s journey with spina bifida because I want others who face that diagnosis to have hope. If you are here because you’ve heard the same diagnosis please keep reading – I have more things to tell you at the end of this post.
We are still in that phase where Mason wears his foot brace for his clubfeet 23 hours a day. It means we pack as many fun things into his one hour free as we can. He was playing with Daddy here between getting clothes changed. He really wanted to be on his back and got as far as he could:Remember, Mason is a parapalegic, he has no real use of his legs. That leg is just hanging there holding him from rolling the rest of the way to his back, he’s not yet strong enough to swing/drag it over using his upper body strength, but he’s trying. This is the point where we grab his hip and support the weight of the leg so he can finish rolling to his back.
Today I finally remembered to take updated pictures of his scars as well. Here you see Mason’s belly scar, or more likely you don’t see it. This one healed really well and is one of the incisions from getting the shunt in his brain to relieve fluid buildup. It’s the lower end of the drainage tube and they cut his belly open to get it into the right spot after threading it down his neck and chest on the inside of his body.Here is the scar on his head where the shunt was placed. It is a relatively crescent shaped scar and will be well hidden by his hair when it finally thickens up.Last is the scar on Mason’s back. This one has done remarkably well and we hope that it continues to smooth out those flaps on either end as he grows, while stretching in the middle as needed. It has come a long way from the open back with spinal cord showing: and the angry newly closed skin: God’s creations are truly amazing. Healing and growth come with time. I remember crying over how awful those first pictures were, that reality of a body created with incomplete vertebrae where you could literally see his insides from the outside. I remember seeing his poor sewed up back and feeling sad that he had been through surgery before he was even a day old. I was grateful it could be done, but it was still hard to see. Five months have come and gone since that first day. Five glorious, stressful, inspiring, exhausting months full of ups, downs, and unexpected paths. Mason is a joy and delight. I love seeing his inquisitive little face as he explores the world! He came to earth in a body with physical challenges but look in those eyes and you can feel his strong spirit. He radiates love and happiness.
To those who stumble across this blog having learned their child is coming to earth with spina bifida – look long and hard at my son. He has a severe case of spina bifida. Many children with spina bifida have more use of their legs and more sensation in their lower body. Please do not listen to a medical establishment if they say a child with spina bifida automatically has mental disabilities and will be, in essence, a vegetable whose life is not worth living. They are wrong.
They will offer to murder your child for you. Oh, they don’t call it that. They sanitize it and call it abortion, and the baby who can already suck it’s thumb and listen to your voice while in your womb they de-humanize by calling a ‘fetus’. Unthinkably, more than 60 percent of you will blindly accept murder. You will not look past the diagnosis of Spina Bifida long enough to see the son or daughter in your womb. You will lose the precious gift of a child whose life is worth living.
Life with spina bifida will still be a life of joy. Please trust me. I would do this again in a heartbeat.