Where There’s a Will, There’s a Way

I believe that saying, I really do.  Once I realized that it’s OK to be a C student in something, I understood that it is better to continue, get that C, and not give up than to just throw in the towel and get the F.  That was a difficult lesson for me to learn, since I had rarely been a C student before college.  After college, marriage, and two healthy children, I found that it worked in maintaining the health and life of our third child, who contracted E Coli meningitis at three weeks and was subsequently medically fragile and multiply handicapped.  He was in a wheelchair, was deaf, was completely G-tube fed, had epilepsy, and functioned at the level of a 12 month old baby until his death, when he was almost 12.  I had been a child protective social worker for 5 years, so I knew how to get him services.  I was very organized with scheduling his appointments with his 11 specialists and with staying on top of his medical needs even though he was completely nonverbal.  It’s difficult to describe him to other people because so much of what I describe involves his health issues and limitations, which someone would have to know in order to understand him.  What really made him who he was, though, was his near-constant joy and happiness.  So many people told me that they wouldn’t want to live life in that condition, and I can understand that.  But, he really didn’t know another way of being, and he was very much a Zen master of experiencing the art and joy of simply being.  He knew he was loved, that if he cried(rarely) someone would take care of him, and he understood the world as a good place.  I really don’t believe anyone was ever mean to him.  It would have been a travesty to hurt him deliberately in any way, and even young children seemed to understand this.  I had a therapist tell me once that there is an order of monks who devote themselves to working with children like him because they believe it’s the closest they can get to Jesus in the real world.  I know that all my efforts on his behalf extended his life, as there were several emergency surgeries that saved his life based initially only on my word that something was wrong, even though he couldn’t tell anyone.  In the end, though, it came as a shock that I didn’t have final control over his life or death.  He died one night at home while we were asleep.  He had been laughing that night.  Everyone played with him while we watched a football game, and when we woke up, he was gone.  He was not quite 12 years old.  That was seven and a half years ago.  We all knew it was a possibility, and that is always how I imagined his death occurring, but it was still a shock.  They didn’t do an autopsy.  I had someone tell me that when the coroner does an autopsy, they’re looking for some catastrophic event that stands out in an otherwise normal body.  Logan’s body wasn’t normal, and it would have been difficult to sort out the one issue that was unusual enough to kill him.  His neurologist said he was a prime candidate for Sudden Unexplained Death in Epilepsy Patients(SUDEP), but it took me a long time to accept that I will never know EXACTLY why my youngest child died.

I, also, had to accept that despite my very great will and efforts, I could not make my marriage work, either.  I tried to fix all the things that my husband said contributed to his unhappiness, but in the end, I again had to admit that I just didn’t have complete control. I had to realize that I can’t make another person be who I want them to be.  If they aren’t going to be that person, then all I can do is decide if I am willing to live with the person they have decided to be.  It wasn’t an easy decision to decide that I wasn’t willing to continue to be with the person he had decided to become, especially since he had been the person I most wanted to be with for so many years  It’s humbling and galling to admit defeat, especially when it is something I want so badly.

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