Wednesday, March 22, 2017

Why I Fight So Hard for My Special Needs Child

We have to start at the beginning to answer that. 

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?