Friday, January 6, 2012

My New Mantra

Ella has taken to crying in the morning and William has taken to being floppy/resistant. Not sure if this is normal "back to school after Christmas break" behavior but nevertheless it has caused some serious white knuckled driving. Their "twin take down momma" moments have given me a new Mantra... actually my first. Yep, if you saw me today in my green Honda CRV racing down Winton my lips were sure to be moving. Repeating to myself , " I am doing the best I can"... my new Mantra. The key is to straighten up the spine, sit a little taller, grit your teeth, think happy thoughts (two beautiful children who don't always cry whom I love) and repeat, " I am doing the BEST I can". ;-p
Early Monday Wayne, William, and I leave for Children's Hospital of Philadelphia in pursuit of second opinions on seizure control. The plans have been in the making for months; CHOP has had William's neurological records for a good length of time. This morning I ran around like a mad woman filling the holes in my personal records. An hour later I was alone parked at William's school with a THICK manila envelope containing hospital records, three radiology Cd's, a bag of seizure medications, and a grande Jamaican-me-crazy coffee. (And short three dollars; didn't beat the parking fee in the hospital garage. 0-30 minutes no fee... apparently I am not that fast)... ;-)
After picking up William; speaking with his nurse and teacher I was 20 minutes late picking up Ella! Repeat Mantra...
Once home the kids are happy; bellies full of pb&j and milk and content to play or nap. I pulled out the radiology cd's and dug in. It's a strange thing seeing your baby via CT scans and x-ray images. There he was tiny Will man; just one day old. The images show all his tiny and fragile bones; his tiny legs, arms and baby parts. I found myself upset remembering the day of the twins birth. Although I know William struggled at birth and needed oxygen it still hurts to think how they whisked him away. The birth was long. Ella came first and was lodged in such a way that she took many hours to push out. After William's birth I was hemorrhaging and required oxygen so all my memories are slightly hazy. I remember the general panic in the OR room and how I was jabbed in both legs with needles; something to stop the bleeding. Yet despite all the birth drama what upsets me the most when looking back was not being able to hold my son. I was not able to see William until the next day. Doctors preformed a CT scan and abdominal x-ray before reuniting him with me; poor baby.
Four years later pouring over his tiny bones, brain, and tummy on these x-ray images I am overwhelmed with love for my now not so tiny guy. After studying the MRI scans of his brain I am anything but at peace. Of course I have seen these particular images before but time or frequency does not ease the shock. Where brain tissue should be there is black (how fluid reflects on images). Only a thin ridge of tissue surrounds the fluid filled middle; with slight folds in the frontal lobes and smooth on the back. Why? all I can say is how? and why? I feel tremendous love but not peace. I wonder if I will ever find peace amid the anger and questioning? I do feel grateful though for his life and his tenacity. For his beautiful smiles and strength.
The cd's are now packed with all the other records and ready for travel. I am willing myself to put them from my mind and simply hold my son. My flesh and blood super amazing son that the images can not come close to representing. At four he still loves to snuggle and falls asleep in my lap. He is beautiful and for him I will keep searching for answers; to achieve seizure control and give him the best life possible. To know that my Mantra is a true one.

Happy New Year!! No really... I probably should have started off the new blogging year with something more cheerful. Our family is actually doing well... on good days and after 9 a.m ;-p Picture and more updates to follow soon.

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