It sounds rather interesting and exciting, does it not? I've kind of been cowering in the corner since I heard it mentioned in my son's IEP back on February 4. Not only cowering, but I actually told Mason's team that I would rather "stay in denial about that for the time being." The good part of that is, I was honest with them and with myself, since I am not ready to think about what Mas will do or where he will go when he is older. When they first brought up transition for him, I said, don't we have 10 more years before we have to worry about this? They said, yes, but we like to bring it up early so we can be on top of it, and kind of customize his education so that he could maybe get a job someday. (i.e.: crushing cans or sorting things...) It's enough to make a parent of a special needs kid want to run away.
Although I know the day is coming when he won't be able to live at home anymore, I really prefer not to see that, yet. (He's only 11 years old and 54 pounds, for goodness' sake!) I guess my husband and I both have our own ways of dealing with it, or not dealing with it. My husband is convinced that Mas will "wake up" someday and just be able to speak. This could be leftover hope from the first neurologist who saw Mas, who called us and said Mas would "be behind until he was five, and then he will catch up and be normal." (Yes, I would love to call this doc up, and have a few choice words with him.) I am still convinced he will not make it to adulthood. This is probably due to the two different docs who saw him and told us he wouldn't live to be a year old. (Couple that with being the sole caretaker on many nights when I wondered whether he would wake up the next morning.) I think we both latched on to what we heard at different times and now it's like removing staples after your skin has grown over them. Painful, and you have to remove some of the skin in order to get that staple out.
It's been a long road. I think I have hesitated to post anything about it, since it is very personal and is a tough journey in and of itself, without any outside opinions weighing in. I have always thought of myself as a realist. Some might say I'm a pessimist, but I don't think that way at all. I do tend to be realistic in most areas, with a few remnants of romance/creativity/mysticism thrown in for good measure. In my romantic mind, we would move to a lake, and I would be Mason's caretaker until I died. Our next-door neighbor would volunteer to raise him after I was gone. We would spend our days on the water; fishing, boating, swimming, etc. Mas would get to spend his days doing what he loves the most, and I would get to spend my days watching him be happy. In my realistic mind, I see us raising him as long as we are able, eventually admitting defeat and then trying to place him. I remember being angry when our pediatrician (whom we loved and adored) in Omaha said he thought he "would be able to be placed in a group home someday," and I was soooo angry that he said that. Now, I think he is wrong, because I worry Mas won't be capable of living in a group home setting. (How is that for the universe kicking you in the gut?)
It's been a long time since thinking of Mason's future involved much in the way of joy. Of course, there is joy in watching him learn, and grow, but that is always coupled with the weight of the sheer worry over what he will do, where he will go, how he will fare in a world that is not made to accomodate those who are in any way different. It's a tough world out there, folks, and that's even if you were given the ability to speak and think and use your hands and feet correctly and with a healthy, well-functioning body. Without those things, that tough world grows horns, large teeth, a mossy back, and literally eats you alive.
I have a picture in Mason's room that I used to have in my room when we were growing up. It is an iconic, classic picture, with the two children crossing the bridge and the angel watching over them. I used to stare at that picture as I fell asleep. Now, Mason can look at the same picture as he falls asleep. I used to totally buy into that guardian angel concept. The picture has even more meaning now, as the photo has a girl and a boy crossing the bridge, which reminds me of Riley and Mas.
Riley helped hold down Mason's legs as he had his blood drawn the other day. I hesitated to have her involved with that, but realized that we just plain needed another set of hands, and she qualified. When we were done, she said, "It's okay, bug." When we got home, she said, "Give sister a high-five." Mas looked at her and brought his hand up to hers. It choked me up. So much, that I didn't even want to mention it to anybody. People always ask me if having Mas for a brother has shaped Riley in a different way. I tell them, yes, it has, but being 14, that isn't always apparent to others. It was nice to see that it has made her into a nice person, (even if she is chronologically required to hide that from others.)
Today, Howard and I snuck away for the day and were able to just "be" for awhile; shopping in a trendy little store in the town we run away to. We found a container full of little buttons, and Howard pushed one to me and said, "This one is for you." It was a "mother hen" button. I kind of winced at first, and then giggled. I know that I worry, and I also know that I worry about lots of things that will never happen. I also think that we may never worry enough for what lies ahead for Mason. In my mind, worry is really preparation. I do think that people who never worry, are never prepared. I don't know why my mind is wired that way, but it is.
I picked out a card for a friend today that says, "Being 40 means choosing between the activity that is the most fun, or the activity that gets you home sooner." Something like that, anyway. I had to laugh, especially since I have been going to bed at 9:15 or 9:30 lately, but also, because I have been living as a "responsible adult" for some time now. I was choosing between those things ever since I was 30! Actually, before that! I am staring down the barrel of 40 now; in June I will hit that landmark and will have to look back on the life I've had, and also peer ahead into the life that awaits. With all of the frustration, hard work, and palpable pain that motherhood has brought me, I would not trade the experience for anything. Because it has also brought me a heart full-to-bursting with pride, fits of laughter, pure fun, and many opportunities to find new ways of doing things. It is really a job that I never could have trained for.
Life is full of choices. Choices that lead you in directions that you may not have chosen. Choices that leave you with a houseful of kids and messy windows, with dog toys strewn around and muddy pawprints on the carpet; or choices that leave you living alone with nothing but the tv for company. Even with all of the gut-wrenching decisions that lie ahead, I know that I will wear my mother hen button with pride, and I will just have to hope that there is an angel (or two or three) watching over Mas, walking a few steps behind, to catch him in case we aren't there to do it ourselves.
Meanwhile, I think I will keep that scary transition word in the closet, for now. I know it's there, waiting, but I have a feeling we will think about in anyway, even if it isn't front and center on the kitchen table in front of us.