Unexpect the Expected: Diagnosis Edition Part 2
You could hear a pin drop. The silence was deafening.
After everything we’ve done, the efforts we’ve made, the obstacles Mark overcame… There it was on paper in black ink. Cerebral Palsy. We were sent on our way with no other information and a lifelong diagnosis.
I cried in the elevator. I cried when I buckled Mark into his car seat. I cried, silently on the way home. I remember the moment my logical side came to my rescue. I was looking at Mark as I was putting him to bed. He reached up and gave me a hug and a kiss, just like always. I kissed his forehead and laid him down to sleep. I sat on my couch and pulled out my journal. My mind was making circles around itself. I began to ask myself “why were you crying?”
The craziest thing is that I couldn’t really come up with an answer. I wasn’t sure why I cried as much as I did. I wasn’t sure why I cried at all. Then it hit me. It wasn’t about Mark. None of this was about Mark.
This was about me.
Mark has always been different. Then again, I have always been different. There really aren’t many of my friends that have had pregnancies as complex as mine. Their birth stories are filled with rainbows and butterflies and magical unicorns that prance across their delivery rooms. Obviously not true, but from where I was sitting, they might as well have been.
I did everything by the book. I took my prenatal vitamins. I drank my water, avoided seafood, and had the occasional salad. No drinking. No drugs. Nothing. I was so exhausted but I managed to give up caffeine. Goodbye coffee (the hardest goodbye).
When my pregnancy wasn’t as smooth as everyone else’s, I felt like the odd man out again. When my delivery was traumatic, I felt isolated. When my son’s life was hanging in the balance in the NICU, I felt remorse. When he received the Cerebral Palsy diagnosis, I felt guilt.
I felt guilt. I felt isolated. I felt confused and afraid. I didn’t really know anyone personally who had a child with CP. I didn’t know anyone with CP. I left that appointment with so many questions; How severe is it? What is his future going to look like? What can I do to help him? How did this happen? Why did it happen? Did this happen because he was early? Why did my body fail me? An even better question is, why did my body fail him?
I did everything right.. so what went wrong? Why did I fail him?
That last question knocks the wind out of me every time. Again, my logical side came to my rescue.
- I gave him life. How did I fail him?
- I was in the NICU everyday with him. How did I fail him?
- I advocated for him when doctors thought I was wasting my breath. How did I fail him?
- He is where he is because I take him to all of his appointments. How did I fail him?
- He knows he is loved, accepted, and strong. How did I fail him?
Leaving the Neurologist’s office with a new diagnosis crushed me. It crushed me because I felt like I failed as a mother. I felt like I failed my child. I questioned whether or not I did enough for my child. I didn’t stretch his legs every single day. I didn’t practice crossing midline every single chance I got. I had to cancel that one physical therapy appointment because of a family emergency, or that occupational therapy appointment because of a conflict.
On December 21st, 2020 Mark had an appointment with his Pediatric Rehabilitation team and the SMART Clinic. They were informed of his Cerebral Palsy diagnosis and after much deliberation and given his history, changed it from Spastic Diplegia to Spastic Triplegia. It was during this time that they also evaluated him to determine the severity of his condition. This involves answering a lot of questions and watching your child complete a series of tasks. I was informed that Mark was at Level 1 (out of 5 levels). This means Mark is considered to have a mild form of Cerebral Palsy.
Getting a CP diagnosis is not the end of the world. It doesn’t mean you did anything wrong. It’s not a reason to stop loving your child. It’s not this bad thing that no one has ever heard of. It isn’t a showstopper.
Cerebral Palsy is a diagnosis that does not define Mark. Instead, the side effects are what build his character and that is what makes him who he is. It speaks volumes of his strength, determination, and hard work to preserve over any obstacle in his path.
I choose to celebrate Mark’s achievements over a condition. I am in awe of his demonstration of vigor in the face of adversity. He really is perfect in every single way and I thank God every day that I get to be his mom.
4 thoughts on “Unexpect the Expected: Diagnosis Edition Part 2”
This is our story!!! Our twin boys were born at 24 weeks and were in the Wolfson Downtown NICU for five months, July 2019 – Dec 2019. We just got the official diagnosis that Asa has diplegic CP in November. He is a 1 as well and mild. I thank God for our blessings and how resilient children truly are… His PT says within the next few months he should be able to walk independently.
I felt all of those feelings as well… I still have some PTSD from the experience. However seeing these boys thrive makes life incredible.
Mark is perfect!
Thank you so much for your kind words and support. It sounds like our boys are very similar! He will be walking independently soon?! That is amazing! Gooo Asa!! Thank you for sharing your story with me. Our children truly are miraculous and resilient beyond our understanding. I hope you find comfort in that you are not alone, especially when it comes to struggling with PTSD from the entire experience. It is certainly something many may not fully understand. I am grateful that you came across this blog and were comfortable sharing your story. Again, I hope you find peace and comfort simply knowing you are not alone in this. I look forward to you embarking on this journey with Mark and me as our story continues!
Oh my goodness, this is the most beautiful and heartfelt story I have read. This child is beyond blessed for gave mommy like you. His life not only enriches you but you are his true voice. God bless you and thank you for sharing your intimate experience
Thank you so much for your kind words and support. I will absolutely continue to share more of our story. I look forward to you embarking on this journey with Mark and me!