A couple days after my little Parker was born early by
emergency C-section and was fighting for his life in the NICU, the doctor sat
down with us in the hospital room while we sat nearby watching the ventilator help
Parker to breathe. The doctor started to
cry as he gave us the diagnosis. You
know, the diagnosis that your child has something extremely bad that no one
else in the whole world has and we don’t know what that will mean for him but
it’s probably in no way good. Yeah, that one.
Several weeks later, Parker had made tremendous progress and was breathing on his own and learning to eat orally. He was fighting so hard and I was extremely proud of him and how far he had come. We sat down again with that same doctor and he told us if we chose to withhold treatments for Parker at any time that was understandable and OK and there was no right or wrong answer. What?!?! HELL NO! If my son was willing to fight to stay alive and do his part then I sure as heck was going to fight for him too. And I vowed to do just that and I’ve been fighting for him ever since.
It seems the fight is constant and never ending. I’ve had to fight for knowledge because no
one was able to tell me about Parker’s condition so I had to educate myself and
then in turn educate his doctors. I’ve
had to fight for the best medical care, the best doctors, the best treatments
and the best medicines. I’ve had to get
second, third and even fourth opinions on surgeries that were or weren’t
needed. I’ve had to fight to get people
to understand how important it is to use precautions to keep Parker healthy. I’ve had to fight the insurance companies and
various supply providers regularly to get necessary medical supplies and
equipment covered (this infuriates me).
I’ve had to fight to get services, supports and therapies for
Parker.
I call and write letters to government officials and
agencies when they make decisions that don’t make any logical sense and try to
explain things from our point of view. I’ve
had to fight for Parker’s education and make sure he’s getting anything and
everything that is available to help him maximize his potential and be all that
he can be. I’ve had to fight for my
marriage as this life of ours is stressful and hard and the statistics are
super crappy for couples with a high needs child. I’ve had to fight to make my healthy daughter’s
life as normal as possible. I’ve had to
fight to get access for Parker to enjoy things he should get to. I’ve had to fight to get people to understand
Parker’s worth and purpose and help them realize that he deserves this
fight! I’ve had to put my past life on hold
and realize my new objective and not give up on Parker or my family.
Parker is an amazing little guy who has come way further
than any of his doctors expected him to and I will try my very best to give him
every possibility for the best. That is
what I promised him I’d do when he was fighting for his life as a baby and I’m
not going to stop now or settle for mediocre.
It’s important to realize that my goal is not to be this
crazy, annoying, unrealistic Mom. My
goal is to provide the best possible life and opportunities for Parker and my whole
family and sometimes it requires this Mama Bear to advocate really hard for her
child. Because, if I don’t…who will?
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