Most days I forget how the world sees my daughter: a cute twelve-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 much more.
While meeting with an orthopedic surgeon a few years ago, he explained to me that kids will walk when their brain is ready and that physical therapy is helpful, but you can’t teach a child to walk. He stated that 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.
At the time I just nodded because it all seemed so sure and clear coming from him and 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 truly 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 excruciating 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, nine years later she walks, runs and plays soccer in the field behind our home. Her endurance continues to surprise us all.
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?
Do doctors, insurance companies, special need product vendors, educators and 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?
And let me clarify that she is not hard. Helping a child navigate life with a disability is hard but having such a great soul as a part of our family is the wonderful and easy part.
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.
Days will go by 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. She also is a normal twelve year old, who likes to torment her siblings, but what she has accomplished is nothing short of miraculous and I will not let anyone take that away.
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. And to this doctor’s credit, maybe he was having an off day. Maybe he had been up all night with a sick kid himself. Maybe I was the 10,000th family he had this conversation with and he forgot that behind those ataxic movements, there was a kid and a mother who spends at least a third of her waking hours making life better for said kid.
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 semi-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. Not so our children will thank us one day but we do this because we can’t not help our children succeed and live the fullest life they possibly can. It’s our calling and our duty—our burden and our blessing.
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.
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.
Postscript: 99% of medical professionals that we have had contact with have been stellar and phenomenal—caring and competent. This particular doctor was the latter but not so much the former. I fully realize that he does not represent the rest of the medical community who have sacrificed years and many brain cells in order to serve my child and our family. To all of you, I give a heartfelt and eager “Thank you”.
(Photo cred: pexels.com)