I wanted to write to say thank you to all those who supported My Hero Charlie during the blabathon. What started as a 24 hr blab ended up being 223 hours. We raised almost 3000 dollars between monetary donations and supplies bought off the wish list. Although we did not meet my goal, we did leave an impression. We spread awareness and also imprinted my son's image in peoples minds. We brought to light a serious flaw in the health care system and showed raw emotion. As a group we were able to pull together and keep a blab open for almost 10 days! Thank you again to everyone who participated, including those that shared the event.Some question why I ended it if we didn't complete the goal.
I decided that a break was desperately needed because I was emotionally exhausted. There were many emotions that came into play when I was explaining my story repeatedly. I felt emotions that, typically I can keep under control, but they were activated in full force when I was talking about my son and control was lost. There was also feelings I didn't know existed within me. One of the feelings that sneakily slithered into my thoughts strangling my ability to breathe, similar to a boa constrictor on it's prey was loss. I am not sure if it is a loss of what my son's abilities "should" have been or a loss of the child that was rambunctious and energetic. The boy I taught how to ride a bike and eat with a spoon. These are things he really struggles to do now. I think it is probably a little bit of both if I am to be completely honest. Often I feel angry and I cant figure out why, I chalk it off to me being stressed and overwhelmed. I think that is because I am ignoring the strong emotions that naturally exist, such as the fear of losing my boy. If there are extreme emotions that are not being dealt with, it will show through your daily activities. You may become irritable or depressed and not understand why. I need to be aware and open to deal with the emotional tolls of parenting a chronically ill child who is on palliative care.
Palliative care is similar to hospice but geared around children with chronic life threatening illnesses. They manage pain, provide counseling and intervene with siblings to help them understand the situation. My son started on Palliative Care in July of 2015. This was a disheartening occurrence. As a mom I wanted to see the miracle of him getting better. I wanted to be able to reteach him the skills he had lost and I really wanted to believe the earlier doctors who told me he was "just autistic" and autism causes regression. Today I know they were wrong, the issue was a lot deeper and my emotions are raw and I am angry. Yet another emotion that was opened up during the online event.
I am not angry that I am in this position as a mom. I am not even really angry that I might lose him. But, I am angry that while my eyes were wide open everyone else seemed to be blind to his illness. The blame was often placed on his autism or a psychiatric problem. Sometimes that seems like such a better situation than the one I am in. Instead we deal with Mitochondrial disease which most people do not even know about. Therefore I find myself reiterating it constantly which feels like a fresh paper cut that you pour salt on. I find myself angry whenever the phone rings because I think it is going to be one more person I have to argue with. Between the schools and the insurance companies I feel as if the phone is glued to my head and for some reason no one on the other side can hear my voice. They never really understand or listen, just fumble through policies and reasons they cant help him. The school will not provide tutoring and the insurance agencies refuse to provide supplements. Both of these items could benefit Charlie. It makes me want to scream to them all that he is not a number. He is a child, MY CHILD, a part of all of our future.
Taking a break from the fundraiser is just an escape from the chaos in my head. It is meant so Team My Hero Charlie can organize, regroup and promote to ensure a positive, loving, and inspirational crowdfunding event.
You can visit the page created or Charlie at www.myherocharlie.com and please share this page. Together we will make a difference.
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