Out of the silence

One of the things about living life to its fullest is that there sometimes leaves little time for reflection. Many a moment, thoughts of what is going on in our lives and what it actually means, especially for the long run, cross my mind. I have always been someone who has contemplated my life. I have also always been someone who is told that they over-think things. And I do. Analysis is just part of my normal thinking process. And I analyze just about every facet of my life, even what toilet paper is the most appropriate choice. Wish I was kidding. I am perhaps a little fastidious about the mundane. Is it surprising why I get overwhelmed with life so easily? But I'd also like to think that I concern myself with more important matters, such as my childrens' futures. Clearly not as trivial as toilet paper, this topic is much more difficult to characterize. And I can contemplate it for hours if given the opportunity. Which I am not given. Ever.

Obviously one can only predict so much about the future. But most people can ride the bell-curve. For those non-statistical types, what I mean by this, is that most people can expect some basic things about their future at age 42 in their lives: children will become independent, most likely go to college, get a job, marry themselves and reproduce, you will retire in your late 60's, die in your late 70's and fill the time in between doting on grandchildren or pursuing hobbies or traveling, in between all these events will fall life and it's continuing (sine?) curve of ups and downs. Well, that particular bell-curve isn't the future of many of us who either have special needs or love someone with special needs. First off, at least in my case (and research indicates many parents of children with autism are similarly affected) I have already retired. While some Moms are able to continue working, and find it imperative to do so, my fastidiousness with life's details made it impossible to hold down a job while navigating the autism highway. There is so much to pay attention to, that I literally am researching or probing some autism related topic at least once a day. Yes, every day. There's the medical side, the legal side, education, services, behaviors, therapies, modalities, and data taking ...a blur. Then there is the independence thing - yeah, I have no idea what is going to happen there. Let's just leave it at that for now. Go to college? What will college be like when my kids are ready to pursue higher education? Costs are sky rocketing for college (beating inflation year after year). Will it be virtual? No more campuses and expensive text books and dormitories? Every day there are more programs being developed for those with special needs. What will be around by the time Zach is of age?

Marry and reproduce. My mother asked me if I should discourage Sophia from having children of her own biology because of the purported hereditary influences of autism. Yes, that would be my mother. (ugh, *sigh*) I thought potty training was tough with a non-verbal child. Can't wait to see what sex ed is going to be like. A disturbing thought that goes through my mind is when Zach gets older, that some disreputable woman will attempt to seduce him. Holy cow. This one makes my head explode.

But nothing compares to the dread I feel of the inescapable: How will Zach live his adult life? If he lives with us - what will happen when we die? When I was little I used to fear death. As I got older and life took its pot shots at me, I became more accustomed to the inevitable, and recalled my grandmother and her seemingly peaceful willingness to move on to whatever is next, and I got it. But I have come full circle, and now fear death above everything. As long as I am alive, I know Zach will be taken care of. But there is no way to ensure his life will be safe, healthy, and fun after I am gone. Even a large sum of money cannot guarantee the care required by strangers. Do a quick Google search about abuse or negligence of those with autism and other special needs by their caretakers and you know that people who go into service professions for those with special needs who may be "qualified" in terms of credentials can also be qualified in other ways, such as certifiable predator, bully, or varmint. Vulnerability might qualify Zach as meek, thus he can more readily "inherit the Earth", but that does little to quell my fears. Does this make me a bad Christian? I barely know how to qualify myself anymore. I have friends of different faiths, and some with none at all. I don't believe that people are going to hell because they don't believe as me. If they did believe as me, they would likely be confused and scared, so I wouldn't wish that on them. I have never been an all out atheist. But I certainly understand agnosticism. I have read Scripture, I have prayed, I have accepted the fate of Jesus as saving me.

But none of this takes away the 300 pound invisible weight that  lay on my chest every day.  I am used to living with it by now - 3 nearly 4 years into this.  Some days I find it hard to breath, so I drink, a glass of red down the hatch to give my nerves a buzz so I can get on to the next task.  I know not to do this too often or too much.  There are many things I don't write about, some of them not for the sake for protecting myself, and others opinions of me, but for the idea that my son might care, if not now one day.  There are things that I do for my son, that I know no one else would do, or at least do so without some resentment.  I feel none what so ever.  I love him and just move on from the ugly tasks of taking care of him to the beautiful ones as quickly as I can.  I am a very efficient woman, I tell you.  But these are the exact things that leave me worry. 

I was once accused publicly of desiring pity.  I was told that the blog was a feeble attempt at calling to myself some since of sorrow from others.  I said little to the remark, and had those who love me respond to it instead.  For a brief moment, I wondered if the person was right.  I had never thought of myself as someone looking for others to feel sorry for them.  In fact, if anything, I had always suffered in the other direction, possibly being a little too proud to admit the failures in my life, the things I find difficult.  But perhaps this person was on to something?

And then it happened.  A chance meeting of someone who inquired as to Zach and a discussion of his progress and the amount of effort put in by me and others to help him achieve some more meager milestones than some typical peers.  And the look.  And the comments.  And the body language.  Holy crap?  Someone was feeling sorry for me to my face!  I was outraged.  It was at that moment that I realized that my accuser of my intentions of the blog was oh so wrong.  I was so angered at the incident.  How dare someone feel sorry for me that I have Zach in my life?  He is one of the very lights in my life!!  He is not something to be looked at that makes a woman consider an abortion as so many people do with disabilities.  He is a beautiful (and I do mean beautiful) and precious and I cannot imagine my life without him.  He smiles more readily that just about any child I know.  He is smart, and can learn, if given the opportunity - most critically the people with the skills to get the job done.  He is loving and gives me the most passionate kisses that only I receive - his mother, because yes, even though he doesn't say he loves me, nor does he even call me by name, he damn well knows I am his mother and knows the difference.  And I will make sure that he always does for the rest of my days.