To Myself Before My Daughter Was Diagnosed With Cerebral Palsy
I think everyone would agree that the worst thing about waiting is the not knowing. It can be torturous holding your breath until that moment comes, but ultimately you’d have a better sense of peace if you knew how long you had to wait, right? So if I knew that I just had to wait until Friday, I’ll be OK.
Well, I’ve learned with cerebral palsy, there is no Friday. There’s no date of cure or resolution. There’s just the day you realize you have to become content with uncertainty.
This day hit me when I was about to check out of one of my daughter’s specialist appointments. I used to drag on each appointment as long as possible, asking tons of questions and relying on the answers to bring me comfort. I felt if I could just make it to the next appointment, I would be OK. I could survive in between. But something was different after this appointment. I was smiling and not crying. I had no questions.
When your child doesn’t have a diagnosis, this can be a cause for high emotions and can cause any parent to be extremely tense or fragile. I was scared but thought to myself, “If we only had a diagnosis, then it would be OK because then we could have a plan of attack.” Attack. That’s how I felt about it, as though it was something I could fight off completely. Then the diagnosis of cerebral palsy came. Don’t get me wrong, it brought a huge sigh of relief, but I found myself looking forward to each appointment thinking somewhere it would somehow change. The pressure I put on each one led to increased pressure on the next. I realize now that I was sprinting — ignorantly. And this is a cross-country run. Oh, foolish me.
I met some really inspiring parents who gave me unsolicited tips or advice. I knew they could see the fresh dose of “new diagnosis” fear written on my face. At therapy one time, a mom told me, “It ain’t easy, but my motto is, ‘If your kid is smiling, then you should be, too.’” Looking back, I can’t even bear the thought of my baby smiling at me knowing I was fighting back tears of “what could be.” I wish I could have a chat with myself from 15 months ago, pre-diagnosis.
Life is going to get hard, but it’s going to be OK. Parenthood is going to look different for you than you might have imagined. Be grateful in each moment, even during the ones where you feel 100 percent helpless. There’s no one to blame, and no one is blaming you. She will get a diagnosis, as well as other titles, labels and terms used to describe her medically. Get comfortable with them, but don’t let them dim your light.
Watch your baby girl grow and don’t worry about everyone else. You’re on a unique road, so don’t expect others to understand it. Some days you’ll want to be treated the same, and some days you’ll want them to know that life is different for you.
The words “special needs” don’t need to scare you, either. I know you never thought they would be used to describe you. While they don’t define you, you will find comfort in them.
You’ll learn to live in the now, and in time you will discover the beauty that was created amidst this pain. You will adjust to the ups and downs and the possibility that today might be worse than yesterday, but tomorrow will be better. You won’t let this rollercoaster determine how you treat others, and you will certainly teach your daughter the same.
You won’t merely “survive” each moment, you’ll make the most of them. You’ll celebrate every tiny miracle that each day brings. On the days you feel defeated, you’ll find a moment of joy and forget the whole day was challenging. You don’t need to feel guilty for not always being supermom — you’re human. Her progress doesn’t solely rely on you; she will go at her own pace. Follow her lead and be strong for her.
Don’t compare her life to other people; this calls for a completely different set of rules. You can do this. You can be her strength when she feels weak. While you can control many avenues in your life, this one isn’t meant to be controlled.
Her life is beautiful. You will never “fix” cerebral palsy, but you can teach her to adapt to the best of her capabilities. While you try to teach your daughter the smallest of tasks, she will be teaching you about the big picture. So hold on tight and be prepared for the most amazing chapter of your life.
Follow this journey on The Waiting Room.
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