Tuesday, April 15, 2008

Terrible,horrible ,no good,very bad day!

Helplessness is defined as" powerlessness revealed by an inability to act." That definition pretty much defined my day yesterday. What that word or rather that feeling did for me was to bring to the fore front of my memory some very distinct images from our life this past year. Memories that I did not necessarily want to forget, for they are important parts of the journey, but they are memories that immediately evoke such feelings of sadness and despair. For instance the memory of my 5 hour old baby being brought to me for me to see her one last time before she was airlifted to a hospital more equipped to handle her fragile state. The memory and sound of helicopter rotors and the actual smell of fuel as she was medi-vaced away as I lay in a heap on my hospital bed unable to do a thing as I had just had a c-section. The memory of knowing I was not able to hold my 10 hour old babies hand as she went through a rare procedure called a double exchange that in essence transfused her ENTIRE BODY......TWICE. The memory of seeing my child for the first time 5 days later and all I could do was actually lie across her isolette and cry. The helpless feeling of not being able to hold my baby, to comfort her, because she was hooked up to so many machines. The helplessness that occurred with each passing moment as diagnosis after diagnosis just kept being hurled at you day after day after day. Yesterday I was reduced to such a helpless state again. As I tried to no avail to comfort an innocent, 15 pound, 13 month old baby, as her body had to once again learn to adjust to yet another unnatural assault. No amount of nursing, rocking, singing, talking, playing or distracting could soothe this child. Her body was in a constant state of stress and rigidness. She was inconsolable the majority of the day and at one point as she lie flailing in my arms, her eyes wide open, looking directly at me, as if to say," please help me." And I couldn't. That is when the anger crept back to me. How much more must she endure before she is able to just get back to being a regular baby? And yes I say regular baby in spite of the Down syndrome. At this point the challenges that go with that label, cognitively and developmentally seem like a piece of cake. Can you imagine being jealous of people who "just" have a Down syndrome child with no medical issues and are busy focusing on when will they sit or when will they walk? I look forward to that day when our focus can be those things. I realize this ACTH medication is a necessary evil. I realize it is a means to an end however I am absolutely sick and tired of standing by HELPLESSLY watching my child under go one more hurdle. Come on people, enough is enough! Do I sound bitter? Must be because I am. When you have watched your child fight day after day , month after month and probably year after year, bitterness becomes your own worse enemy. The ironic thing is, amidst her horrible day she STILL managed to flash innumerable trade mark Zoey smiles. One was as I sat with my head hung, in tears ,only to look up and see her grin ear to ear at me with a look as if to say "I am alright Mom, I can do this too" I know you can Zoey my love I only wish I had the ability to ease the path a bit, to pave it with all the things you deserve , to carry the load so it no longer weighs down your little body.   Zoey's daily strength is what keeps us all going. Her strength becomes a gift to us . But also comes with a price. Why is it that life's greatest lessons are learned in this way, at the expense of the innocent. When we rattle off the litany of all that Zoey has endured and conquered it is mind boggling. It is more in one year then most people will see in an entire life time. This is where my faith has got to kick in. On these days of deep helplessness I cannot be looking for purpose, I may not ever know the "whys" of this journey, ever. Instead I must look to the sky for strength. When I ask for help from the One who can only give it to me then I will be able to better face these days. I can only hope.


jotcr2 said...

The meds are a necessary evil. Our peadiatrition gave our girl Vallergan, which would give her slight relief from the pain/discomfort. I would feel guilty, especially as she bloated up, and looked so poorly, that I was poisoning her - however we were fortunate that it worked

rae said...

Big hugs to you... and rest assure that the symptoms caused by the ACTH resolve as quickly as they appeared once you stop the injections. The puffy cheeks go down in about a month or so but her sweet personality will be back in a few days flat. Hang in there... you are in the home stretch.