I remember first hearing that whole story about the trip to Italy. You know it – having a child with special needs means that although you were planning a trip to Italy, the plane is taking you to Holland. It isn’t better or worse, it is just different. I’d rather go to Italy though. I hear the water is warmer there and I don’t like cold water. At all. (When I was a kid I was on a swim team with my two older brothers. Cold and wet at the same time is at the top of my despised-condition list.)
My last (final) child was SHOCK a baby girl and I wanted to enjoy all that girlie stuff! Three healthy boys have been riotous fun, but someone to do girl with??? I was looking forward to it. Discovering it might not turn out the way I imagined was like a fire hose of cold water in the face. LOTS of adjusting required.
I remember when I told a neighbor that my dreams of life for this daughter had been scrambled. Her reply, “Well, just get new dreams.” Is there a store for that? Can I get them via Fed Ex overnight? How do I even know what new dreams are right for her/us? I don’t want to choose something I’ll later have to give up.
For years I thought the next medical thing would be the last one. Nuh uh. In fact with surgical scars on both her arms, one leg, her chest, tummy, and back, plus the lack of a diagnosis, I realize I can most likely count on more medical surprises in the future. I’ve got the necessary bags packed and stashed in the closet so as to reduce the stress. However, the greatest preparation I’ve done is more ongoing, adjusting to reality. Being honest with myself about what reality seems to be, giving up control while holding on to hope, knowing there is much I do know and much more I do not know, is a full-time occupation for a while.
May I suggest you be patient with yourself? I had to be patient with myself. Adjusting takes time and gentleness. This isn’t Italy and we didn’t study the travel books for where we are now. It’s okay that we are confused and scared.
My process includes spending time in the “pool of reality”. I love being in water. The pool of reality is a bit colder than I prefer, mostly until I get used to it. I’ve quit fighting it, thrashing and trying to get out. I float in it now, knowing there may be a big wave soon, I may have to hold my breath. I may even go underwater, but I will know where I am. I’m paying attention. It is still colder than I prefer, but I can figure out ways to stay warm.
Honestly, I do not know what the future holds. How many and what size waves we’ll face. So today is a day to float in the water with her. The only way to float is by being in my pool of reality, not looking for a way out nor scanning the horizon for a different pool. So I take a deep breath and relax. I get used to the water. It is still colder than I’d prefer. It is different, scary sometimes, hard work, but worth it. In fact, after 10 years, I’ve adjusted to the present reality.
Pedaling Backwards 