Kerry at Transcending CP is a beautiful young woman who someday is going to change the world one child (and parent) at a time. She writes from the heart, as a child who has CP. On how CP not only affects her but her family. The good, the bad and the memories that make me want to go back in time and punch a jerk in the nose.
Last weekend she wrote about the Pain of Disability. It brought me, and a lot of other moms, to tears. It was both beautiful and heartbreaking. Tatum responded with a wonderful letter to our children. And these two posts brought me to this moment….
I adore you. You bring me such joy and peace. The moments in life where I feel the most contentment is when you are in my arms, with your head on my shoulder and your arms around my neck.
I apologize for the pain I have caused you with the hospitalizations, the horrid EEG testing, being the person who had to hold you down for lab work, X-rays, MRIs and IVs. I am sorry for the pain you have endured in your four short years.
I worry that the hours of therapy are too much for you. I wonder if by having you in all the therapies and medical procedures I am changing the child you were supposed to be. That you are working so hard for me, rather than for yourself.
I know you do not understand why you had to work so hard. To speak, to eat, to roll over, to walk. That when the other children run around a party and you cannot keep up it makes you sad. It makes me sad, too. But for different reasons.
When you saw me cry, when you heard me say “how much more can she take”, when you saw me break…my pain was not caused by you. Rather it was caused by knowing I was not Super Mom.
You see, Boo (and Kerry, Tucker, Owen, Sami, Cooper, the Boyz and Sunny or insert your child’s name here) as your mom I am supposed to be able to take away your pain. I am supposed to make life easy for you. Well, not easy. I am supposed to be molding you into the great person you will become.
But I am not supposed to hurt you.
A mom wants to be seen as a hero. As a miracle maker. The one who makes Fairies come to life, inhabits the role of Santa and jumps buildings in a single bound.
Being your mom has enriched my life in ways you cannot imagine. I have become an advocate, I have become a writer, I have become knowledgeable in medical terms I never would have learned. I have become something more.
More than Kerri. More than a wife and truthfully more than a mom. And none of that would have happened without you.
Boo, I do not regret one single moment of being your mom. I cannot imagine my life without you. When you were in the NICU I left you one night for five hours. The nurses convinced me to go home and get clothes, see your sister. I cried the entire time I was away from you. I still cannot listen to Carrie Underwood’s This was Just a Dream.
You were only five days old. I had seen you almost die twice and I swore in that moment that I would never leave you again. I would never again leave you to the mercy of medical staff without being there to hold your little hand.
Even if that meant I was the one holding you down for the test.
Boo you are my hero. You have defied the doctors who said you would not walk, talk or grow. You have defied my limited dreams of what to expect. At four years old you continue to amaze me every day.
I am so proud of you. Most children, heck most people do not have to work as hard as you do every day. They take their health for granted. They do not see the wonder when their child who has worked for a year to jump, manages to jump with a smile on her face.
Do not for one minute think that it is you who have caused my tears. You, my Boo, have made me believe in miracles.
Thank you for choosing me to be your mom.
PS–Dearest Kerry, thank you for writing your post. It reminded me that how I respond to Boo’s life has impact on her. I will remember to focus on the miracles and not so much on the pain. I hope she never feels that she has caused me pain, because the truth is she (and YOU) have only brought me joy.