The Moments You Remember When Your Baby Gets a Cerebral Palsy Diagnosis
The moment you give birth to a beautiful healthy baby girl after seven months of bed rest, and your fears of your past deliveries are replaced with unexplainable happiness.
She’s my third baby and the only one who got to leave the hospital at the same time I did, without an extended hospital stay. My first baby was born premature and could only stay on earth for a short while. My second born was swept away from me at birth as he had turned blue and was struggling to breathe from the fluid remaining on his lungs. A week later, scared to death, he left the NICU and came home. So when my daughter was born and the doctor said she was leaving with me, I felt pure joy!
The moment you’re in love with new life and you have the best behaved baby on the planet… but you’re worried. Your motherly instinct is on overload, and you have no words to explain yourself that make sense to anyone else. “Just be happy,” you say. “Everything’s fine this time, you’ll see.”
The moment you find out your baby has cerebral palsy and you hear the words “stroke” and “child” together for the first time.
The moment you take your child shoe shopping to find a pair that will fit over the new leg braces the orthopedic ordered. You find yourself on the floor with 10 open boxes of shoes that will not fit. You fight back tears when the shoe clerk gives you dirty looks for making such a mess, and you glare back hoping she gives you a reason to bite her head off… try me, lady!
The moment your child turns 2 and isn’t talking and you think, “Most 2-year-olds talk, right?” Everyone says she’ll talk when she’s ready.
The moment you start speech therapy.
The moment you realize your child’s occupational therapist is the most expensive but most helpful friend you’ve ever had.
The moment your speech-impaired daughter sings her heart out to the song on the radio from the back seat of your car on the the way to therapy. She might not be able to speak all the words, but her rhythm is remarkable. “Shake It Off” by Taylor Swift just happens to be her favorite jam, and if you ask me, the title fits her like a glove!
The moment you hear your daughter say the word “mama” for the first time. No sound in the world has ever sounded as sweet. I made her say it over and over for days, watching her smile. I think she was as happy to say it as I to hear it.
The moment you think your child is having seizures in her sleep and you stay up for nights to catch it on video for her doctor. I did catch it, and it landed her in the epilepsy unit for a 24-hour test. I stayed up all night, ready to push the red button… if you’ve been unlucky enough to stay in the epilepsy unit, you’re familiar with that button.
The moment you realize your child has an inner strength you can only pray she never loses. I wish I had half her courage. She’s now almost 5 years old and tougher than nails, wise beyond her years.
The moment you have to remind yourself to breathe, that everything’s going to be all right. There’s been many moments like this.
The moment you leave your child in a surgeon’s arms, knowing deep down it’s do or, well… some sentences just don’t need to be finished. My daughter needed the bottom of her spine fixed or it would paralyze her. Every day a small part of her spine was quickly cutting off the function of her nerves, leaving her with daily pain. Surgery was a must. Without hesitation, I laid her in a surgeon’s arms and walked away. It was one of the hardest and easiest thing I’ve ever had to do.
The moment you realize being a parent is not for the weak, although many days you will feel weak. You will feel like giving up those therapy sessions and letting your kid just be a kid, and that thought will keep you up at night. You will question yourself time and time again. You will overthink everything and often feel alone.
The moment you realize you are your biggest critic but most reliable ally. That some days will be hard, but then you will have a moment where you stop being afraid and realize to fall down means you’re standing on solid ground. It’s at that moment you realize it’s possible to pick yourself up and lunge forward even faster and further than you thought you could.
The moment you sit back and watch your child dance to the rhythm of her own beat and think to yourself: If this is what cerebral palsy looks like, then I’m the luckiest mom ever! She’s amazing, and I wouldn’t change her. I know her challenges are what help make her the coolest kid ever.
And she’s one pretty cool kid.