Hi! It’s been over a year since I’ve written here. Most of my writing has been going to ksl.com but I really needed to write this essay knowing only close friends and those who know our lives would read it.
I find great comfort and relief in writing and I really, really needed to get this out about a recent doctor’s visit/expedition. Talking about it just wasn’t bringing the closure I needed and I knew instinctively that I needed to write. It’s not the best piece with grammar, tense, etc. but this was more for content and reflection.
I don’t expect to have this amount of time for therapy writing soon but every now and again I might.
Thanks for reading anyway.
Most days I forget how the world sees my daughter: a cute eight-year-old who walks with a strange gait, who most-often is drooling and who uses a communication device to speak. I forget that she resembles a broken marionette that has snipped her strings and says so much with a smile. Yes, she is beautiful but she’s is more, so so much more.
While meeting with an orthopedic surgeon recently he explains to me that kids will walk when their brain is ready. Physical Therapy is helpful but you can’t teach a child to walk. All kids with Cerebral Palsy have delays and what we parents think is a miraculous cure because of all the hours of PT and home therapy is really just a brain that will tell the child to walk when it’s good a ready—and not a year earlier. He also, in his opinion, says if a child hasn’t walked by the time they are eight, they won’t.
At the time I just nodded because it all seemed so sure and clear coming from him. It wasn’t until later on the long ride home that it hit me. As the tears began to drip off my chin I kept picturing all those hours, days, months, years of working with her. On everything. Everything! About the only thing that came easy to her was smiling. Nursing was a nightmare, eating included aspirating; even holding her head up was exhausting for her.
You can’t teach a child to walk? Really? Because it really felt like we did.
I remember with her first walker all she could do was move both feet, barely pick them up and push her toes back to move a few inches. It was horrible to watch and I remember with great clarity surveying her arduous progress down the sidewalk thinking, “This will never happen. She will never walk. Why are we doing this to her?”
And yet, five years later she walks, runs and can kick a ball. Her endurance continues to surprise us all. She is miracle.
Can it really be her brain was just on slow-mo and would have eventually gotten there all on its own? Could I truly have just sat back and watched her struggle waiting for her brain to eventually get there? Was it all a waste, those (not kidding) thousands of hours I spent helping hold her head up, to sit, then transition to side-sitting, then to holding up on hands and knees, to crawling a centimeter at a time, to pulling-to stand one rung of a chair at a time, to learning to stand up without falling, bribing her with snacks to cruise down the couch, having three different walkers until finally at the age of four she left it behind to walk on her own? I mention this grueling list because it was. It was a sacrifice—a great one. Over many years and it’s not over.
This doctor with his off-the-cuff diatribe about brain and motor development honestly made me feel like a fool. I kept repeating in my head, “All that time! All that time!”
Was it all a waste? And even if I could go back in time, would I change anything? If a doctor had told me that back then would I have been content to sit on the couch and keep telling the therapists that if she was going to walk, she would? And if she was going to crawl, she could?
I just wonder why it has to be so hard! Do doctors, insurance companies, special need product vendors, and even therapists really get how hard it is? It’s not like we are all standing in line jumping up and shouting “Oooh, oooh, pick me, pick me!” Yes we love our kids, yes we fight and advocate for them but would it be too hard, take too much thought and time to make it a little easier?
To clarify that you don’t have a wheelchair purchasing program BEFORE someone drives 300 odd miles with four small children to only leave with no promise of help and even worse, a little bit less hope then she came in with?
Perhaps I’m being dramatic. I may even be over-reacting. It wasn’t a heartbreaking appointment. We weren’t told our child is dying, or sicker than we thought. She left the same as she came in and though her mother was fighting back tears we were intact. But it was definitely heart pausing.
Driving the seven hours home I was grateful for the darkness and the music on the CD player to distract the children from the fact that I was grieving. Grieving all over again for her. For us. For me.
How can I forget that she has a disability? But I honestly do. It’s just the way it is. The way she is. The way our family is—we don’t know any different.
Sure, we have three other “typical” kids but having a wheelchair van, therapy appointments and lots of weird eating utensils lying around is our normal.
Months will go by (and sometimes years) when I forget how others see her. Because what I see is a strong, capable, intelligent, goofy and amazing child who inspires everyone around her. She has a special spark—a bit of God’s love in her that lightens up hearts and communities that are blessed to know her. She IS a miracle. What she has accomplished is nothing short of miraculous and I will not let a well-meaning and well-educated doctor take that away.
He may have 20 years of clinical experience dealing with children like Katie but he has no more than 20 minutes of experience with Katie. I wish I could show him a DVD of her life so he could see the marvelous progression she has made and how many people have been awed by her smile and determination.
I wish all health care professionals would pause and remember that you are not only to “do no harm” but also to not take away hope and faith in the future.
If that is how they see her past (a hodge-podge at best attempt to cure something un-curable) then how do they see her future? Do they see my hopes and dreams of her living independently and attending college as a sweet rose-tinted wish that will never happen?
What is their idea of her future? And why do I care?
And that’s where I pause once again.
I do this all because I care.
I care so much that I would drive 5,000 miles if needed, if that’s what she needed. And most mothers would do the same.
Not because we get awards for it. (We don’t). Not even for our children to thank us one day. (The never do). But because we can’t not help our children succeed and live the fullest life they possibly can. It’s our calling, our duty and our burden.
God called me to teach, protect and raise this child and if it takes wasted miles, time and money every once in a while then I guess that’s got to be expected.
And if it requires me to sob and turn to God often, then it might not be so bad.
Some may see her as “broken” but to me and all those lucky enough to earn her trust and love, she is the expert and I am in the front row with pencil ready for all she has to teach me.