Here’s What You Can’t Take From My Son, Cerebral Palsy


To Cerebral Palsy,

I had heard your name in passing but never blinked an eye. You were not important to me then, because you were not in my life and I didn’t expect you ever would be. But then you viciously barged into our lives 21 months ago and left an everlasting impression. I would rather not know you and I don’t like you one bit.

You turned our world upside down. Everything I thought I knew and planned for, everything I understood and trusted went out the door on the day my sons were born.

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My son has a name, and it does not include cerebral palsy as a prefix or suffix. But my son also has an identical twin, though they have been polar opposites since birth.

I have not reached the forgiveness stage just yet, or the time where I am ready to thank you, CP, for what you have taught me. I wonder what we are being taught by this hard, long lesson.

My boy had a catheter, a ventilator, a CPAP, multiple X-rays, multiple blood draws, a phenobarbital and antibiotic cocktail, an EKG, 2 EEGs with 24 electrodes glues to his tiny head, 2 blood transfusions, forced nutrition instead of breast milk, an MRI of his brain and constant monitoring of his heart, temperature and oxygen in his first week of life. He was in the NICU of a hospital with a different stranger every day for 25 days and his twin spent the first 25 days of his life visiting his brother in the hospital every day.

My boy cried 18 hours a day for the first 6 months of his life. He was diagnosed with colic, reflux and pain; we just tried to survive every day. It takes 1 to 4 hours a night to put him to bed because he can’t be left alone unless he is in a deep sleep. He has such spasticity that he arches so hard he bruises my arms, and carrying and caring for him causes physical pain many days.

He’s been to a dozen different specialists and continues to get three to five therapy sessions every week, from PT, OT, speech, swimming, Anat Baniel, chiropractic, craniosacral, cranial osteopathy, Musgatova and more. Because of you my boy still can’t ride in the car without screaming the entire ride. Because of you, it is easier to stay at home then to try to do anything that involving being out in public. My 21-month-old looks and acts like a 4-month-old, and is unable to hold his head up completely, roll over (unless accidentally), sit, stand, walk or talk.

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However, you have not taken Berkley’s spirit or spunk. He is by far the strongest person I have ever met. He is brave, resilient, courageous, smart, handsome, amazing and he has an awesome sense of humor.

You may have taken away the ability for his body to cooperate with his brain, but he works harder at everything then any person I know.

Ultimately, he just wants to be held, protected, loved and doted on. That has become my job for now and I wake up each day with hope that today will be better in all ways.

 

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