That moment. I remember exactly where I was when the neurologist called. Cerebral Palsy. My daughter had a stroke in utero. Completely undetectable. No way to know when she had it or how it happened.
I frantically wrote down every word I possibly could understand. I misspelled nearly every word. I vividly remember calling my husband after I hung up with the neurologist. Processing all that he has said in such a short span of time was overwhelming. Little did we even know that this world of Cerebral Palsy we were entering into is a lifelong marathon.
First let me say, I am SO thankful that what she has is mild. She has a very long uphill battle ahead in her life, however she is very capable and is going to live a long and mostly healthy life. I know many people whose children will not have nearly as bright of a future as my daughter, but this story is about our journey and how even something “so mild” takes up so very much of my parenting.
I had NO idea the journey that phone call would set us on. As we began to wade through the world of cerebral palsy, we learned every single story is SO different. The amount of brain that had died, manifests itself in so many different ways. Trying to figure out how Abigial’s CP affects her is the only concern we have. As her mother, I think about nearly every aspect of daily activity and how it would fit into my daughter’s life.
Having so much technology at our fingertips has been truly amazing. The isolation that comes with having a child with any sort of needs can be overwhelming, but being able to reach out and find other parents in the same boat has been emotionally life saving. I have learned about so many different therapies and options to explore with our daughter that I have NO idea how I would be surviving without.
The Doctor’s office. Oh the amount of HOURS you spend seeing so many different specialists. They each have their unique expertise to give you on how to medically help your child. In one year, we will be in a doctor’s office 16 times. That is ONLY if she does not ever get sick. In a 12 month period, my daughter had 15 catheters to test her urine because of a fever. I had to help them pin my daughter down FIFTEEN times, and that was on top of all the other “routine” appointments. It is SO hard to see how scared and anxious she gets when we go to a doctor’s office, because she does not know what they will do this time. As she gets older, the fear has subsided due to us being able to communicate with her what exactly will happen.
The dreams that my husband and I had to let go of for our daughter was extremely difficult. Will she be able to walk around her elementary school and not get too tired? Will she be able to play on the playground? How “normal” will she look to her classmates in middle school? or will they realize she is “ not normal” and bully her for it? When she outgrows her stroller, are we going to have to get a wheelchair for her? Will she be able to do any sports?
These are MY own thoughts and fears about my daughter. My husband and I DO NOT put these on her! We never tell her she cannot do it. We will let her try ANYTHING she wants to. But as her mom, these thoughts are the ugly part. Acknowledging my thoughts and fears with her is the best way for me to confront them.
The BEST part
God has Abigail in His hand. We know HE has a plan for her life. Science is also advancing faster than we can even imagine. I pray everyday that they find a way to heal or nearly eliminate all of the negative side affects of her CP. My friends and family that support us is truly the best. They are there for me. They know how to encourage me, distract me, pray with and for me. I could not do this on my own, and I am so thankful that I do not have to!
This poem below is something my daughters teacher gave to us when she started in a developmental preschool. I legit ugly cry every time I read it, becuase it is EXACTLY what it feels like to have a child with extra needs.
WELCOME TO HOLLAND
by Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.