Two years ago, September 18, 2012, I was 35 weeks pregnant, laying on an ultrasound table, hearing a doctor tell me words I didn’t understand. Words that scared us… spina bifida, myelomeningocele, neural tube defect, hydrocephalus, disabled, clubbed feet, lemon sign, neural tube surgery, brain surgery, shunt, Chiari Malformation, urology issues, bowel issues, development issues, NICU, too much fluid, unable to move legs…
Up to that point, we had planned on an out-of-hospital birth, just like our first two children, Parker and Maxson. But this baby was breech and after 32 weeks, still had not turned. We were instructed to get an ultrasound just to make sure everything was okay, and hopefully with some help, we would get the baby to turn. The ultrasound showed very different results than “everything was okay” and so we entered a new phase in the pregnancy that was completely different than anything we had experienced before. We now had tons of appointments over the next few weeks before Colten was delivered at the hospital via c-section. We now would have a baby in the NICU, instead of one that came home with us hours after his birth. We would have a child that would undergo more tests and surgeries in his first two months than anyone of us in our family had gone through in our own lifetimes.
But those three weeks between DIAGNOSIS and DELIVERY were absolutely the worst three weeks. Worse than watching our child go back for his back closure surgery. Worse than watching his head swell from hydrocephalus. Worse than watching him get rolled back for his shunt insertion surgery. Worse than watching his head swell again, as the first shunt failed within two weeks of insertion. Worse than watching him get rolled back for a shunt revision.
When the child is still in you, there’s the one side that feels you want to keep them safe inside and never let them out – it’s too scary to think of a baby undergoing all those procedures, pricks, prods, tests and therapies. Then there’s the side that cannot tell if he’s alright or if this is as horrible as the perinatologist described it. You cannot see your baby so you worry. I am pretty sure I cried just about every day of those three weeks, waiting for our little man to arrive. How would we do this? How could we raise a child with these medical needs and disabilities?
Now, two years later, looking back, I can tell you we raised a child with those medical needs and disabilities just like we raised his brothers. Sure, there are tons of extra appointments.Sure, we drive all over to appointments. Sure, we eat more fast food on the road going to those appointments than we ever did before in our lives. Sure, my work schedule fluctuates way more than it ever did before due to three therapy appointments a week and other doctor appointments worked in there. Sure, we buy this kid more socks than our others ever had because he’s ripping through them crawling all over the cement. Sure, we buy this kid more shoes than our others ever had because he’s ripping through THOSE crawling all over the cement. Sure, we’ve made and purchased some specialty items for the house that are fun by design and therapeutic in nature. Sure, we carry this child way more than our other kids at this age. Sure, we use strollers now way more than we used to.
But we also expect Colten to help the same way our other boys helped at that age. Take your dirty socks to your dirty clothes bin. Take “Foo-Foo” and put him in your crib. Take your plate to the table (yes, he can do this – he puts the empty plate on the floor, hand on top of the plate, and scoots to the table, pushing his plate along). Put the books back in the bin. Bring me a book to read you. Put your food back on your plate or in your mouth. Wipe your hands. Take your socks off. Go to the table. Brush your teeth. Fix your feet. Okay, that last one the other boys never needed to do 😉
Just shy of two years old (October 3rd is his birthday), Colten has continued to amaze us with what he figures out how to do. For the doctor that said he will never walk or have much use of his legs, this kid has something to say. Or rather, show… (links in the next few sections are all to YouTube videos)
He ROLLED by 8 months of age (typical for children is 3-6 months; I do not say this to compare him in a negative light – rather we are incredibly proud of how he has progressed not too far off the “typical” timeline; we are also not naive – he would not be in therapy 3x a week if he was meeting typical milestones. We also realize that our definition of standing and walking are not going to look the same for Colten as they do for another child. I would say, “he will never walk without any support – bracing or upper body support like a walker/crutches” – but really, with this kid’s determination, truly anything he wants to do I believe he will figure out a way; and he may never want to walk without any other support – that’s his decision, not ours).
He started SCOOTING / army crawling around 11/11.5 months (6-9 months is typical).
He PULLED TO STAND at 15 months of age (typical is 6-9 months, holding onto something).
He TOOK HIS FIRST STEPS WITH ASSISTANCE at 18 months (typical is by 12 months).
He started CRUISING ALONG FURNITURE by 19 months (typical is by 12 months).
He WALKED (with braces and a walker) starting around 20 months (typical is 9-15 months).
He started to STAND WITHOUT HOLDING ON (with braces on) by 21 months (typical is by 12 months).
And now, just shy of 24 months / 2 years, look at what he taught himself to do… Using his walker, he is stepping UP and BACKWARDS, and JUMPING! And that’s what I’m leaving you with today. From one of the worst days of our lives two years ago, to what this boy can do today, we are in awe. And we know we have provided him an environment that is supportive but more so, we have an amazing community of support around us that we could not have made it this far without. So thank you – thank you to our amazingly supportive family, both mine and RIchard’s, that help, support, inquire, and love us; thank you to our friends that have stayed our friends through all our chaos; thank you to the new friends we have met along the way and those we rekindled friendships with through similar struggles; thank you to the Oakland University basketball staff and community; thank you to the Sparrow Hospital staff that told us what we really needed to know and to the Mott Hospital staff for being truly incredible; thank you to all the out-of-hospital doctors that have worked with Colten; thank you to the many therapists – PT, OT, Anat Baniel Method, cranial-sacral, homeopathic; thank you to the many orthotics/equipment/rehab people that have helped us along the way; thank you to the U of M Treadmill Study crew for letting us be a part of it; thank you to the local communities we are lucky to have been a part of. And to anyone that still reads the blog 😉