I, like many other women with children in this world, spend a majority of my time attempting to make order out of chaos. I organize spices, fold towels, stack laundry, sort and colorize closets, review homework assignments, verify and pay bills, (talk about chaos, try understanding your phone bill sometimes....). It all can leave your head spinning.
In the typical world, you regroup from time to time, look around the house, dust bunnies still in the corners, and you notice that as unordered and imperfect as life may be, things are going in the right direction, the children are healthy and are making strides toward those goals you know they will achieve one day; high school graduation, a job, maybe marriage and children of their own; the whole cycle set to repeat.
Add a disability and this chaos goes beyond this model for there is one thought that I revisit over and over again: "what is going to happen when I am gone". It is the clincher in all this.
I will be taking a workshop on special needs trusts. Sounds like a good time, right? I am hoping it will give me some peace of mind in what I need to do to make sure that Zach will be taken care of after we are gone.
Steve and I have not updated our wills. We need to. I guess I have not wanted to consider the more than difficult decisions that we need to make regarding Zach's care when we leave. Who will take him? Who will want to? Who will be able to handle this and not resent us? Not quite the straight line approximation that most others have to deal with.
Now I am completely in love with my son, and cannot imagine anyone not thinking he is anything but the fantastic kid he is. However, when I am cleaning up poop from the side of the toilet because Zach has gotten confused once again about: standing is for peeing, and we need to sit to poop, well, these are the moments that make my hands go clammy, and not from the fact that I am cleaning up fecal matter. I view, as I do for all those in my life that I love, a privilege to be able to take care of things for those who need help. Blood, bedpans, feeding tubes, sponge baths, from babies to those near death, I have done it all.
But I know that most people do not share my "no big deal" attitude and understanding at taking care of business. It's not pleasant for me either. But it is what needs to be done and I can get through it without much stress. I often wonder if I should have been a nurse? It's funny because I realized that this is one of the gifts in life I have been given. Some people get abilities that land them Nobel or Pullitzer prizes. Me? Yeah, I get personal sanitation service insensitivity. Hurray. :)
Most moms are pretty good with this stuff. There was a time when dads weren't expected to change diapers. I guess most moms don't have to worry about this past the age of 4 though. I have come across parents who have to deal with this when the child is 14. Not the same as an 18 month old, I assure you. These people are amazing. I won't lie - I am really hoping I am not going to be in that group.
I love my kids. I worry about them. I try to take care of them. And I feel like a complete failure just about everyday with Zach. I am so grateful that he smiles and hugs me so often. He is such a forgiving soul. In the words of a friend: " He is so stinkin' cute." and he is. I never want that smile to go away.
So in trying to upturn every stone and make sure I am doing all that can be done, I am planning on making a secure future for him with a special needs trust. The problem is that it's a double edged sword; I feel like I am giving up on him by doing this preparation. Am I not keeping my expectations high enough that he will one day be able to take care of himself? Because of my bad attitude, am I going to create a situation where he will not flourish and become everything he could be?
There's another double edged sword: do I work him so that he can become all he can be? Have tons of services and therapy? Will this cause him not to learn on his own? Or worse: Will he think I don't love him as he is? Will that to cause him to lose that smile?
There is no certain path. There is so much potential for damage. There is no road less taken. There is only the circuitous path you forge yourself through a densely grown field of tall grass where you cannot see your feet, there are pot holes, and hills, stones, and snakes. And I cannot afford the good hiking boots. But I will carry him on my back, nonetheless, so he doesn't have to deal as much directly with the unknown that lay beneath.
It is just so much more complicated with special needs. I don't fear death. I don't even fear pain. I fear what will happen to my boy. If I could, I would protect him from all harm and sadness for his entire life. I would teach him all he needs to know. I would feed him, clothe him, shelter him, for his lifetime. I would make sure that smile never fades. I have a feeling that his innocence will never leave him, even if he were to become totally self sufficient. That is why his smile is so special, it is because he is unaware of the pain in the world, and the fact that there will are those in the world who wish to afflict him with it.
Yeah - this is not the motherhood I signed up for. But it is where we are. There is no amount of organization or preparation for this life. It's just one step at a time, some of them smaller than others, and hopefully, more of them forward than backwards.