By Cathy Allen, Wife to Tim, Mom to Joshua (9), Caleb (6), & Rachel (CHARGE,31/2)
My daughter, Rachel, has CHARGE Syndrome and is only 31/2, and so I'm not sure I can qualify as a veteran "special needs parent" yet. But I guess since we've made it through the year or so of all the really life-threatening stuff (as opposed to the "normal" life threatening stuff that we have settled into), maybe it counts.
In the beginning there were several things that Tim and I had to realize about our marriage that helped us to get through this really terrible time. When the caseworker gave us the statistics about families breaking up it made us stop and consider what was really important. We decided that our family (including Rachel, our marriage, and two sons) was the most important thing to us; so we made other decisions based on that priority. I survived the guilt of leaving my possibly dying daughter with nurses for several days while my husband, other children and I took short vacations to be together and just play. We made sure that Rachel did not seem to be the most important member of our family. Her care may take more time, but everyone in the family must have their needs met.
Life had become so serious; Tim and I realized that we never laughed anymore. So, we set out to get as much laugh therapy as possible. We didn't read or watch things that were very intense or made us depressed (we lived that already). Instead we only rented light hearted movies, and we invited our friends over to play games instead of going out (which we could no longer afford anyway). By the way, I have found "I Love Lucy" and "The Dick Van Dyke" shows to be some of the best laugh therapy resources available.
There were also things we had to understand about each other. My way of coping was to get busy and get everything done. I mean, there was no time to relax because there were too many things to learn and read and do, and it completely consumed me. But it was good for me to feel like I was doing something. My husband's way of coping when he got home was to plop down in a chair and veg-out. Well, needless to say, we were really getting on each other's nerves by wanting each other to cope the same way.
Somewhere along the way I realized that I got to talk to nurses, therapists, caseworkers, and doctors almost every day. I got to cry when I was upset. I got to see Rachel and her progress (or lack of it), and deal with it by talking about it. I know that I suppressed a lot of my grief for awhile just because I didn't feel like I had time to deal with some of it, but I did get to process this new life we had been thrown into.
My husband, on the other hand, did not have the same opportunities that I did. I had to quit my full-time job when Rachel was born, and my husband had to be at work every day. Sure, it helped take his mind off of things, but he also had to push away his grief and his feelings and even much of his thoughts about Rachel. This was too much to deal with in the very short time he had to actually think about it.
At first I was offended by his stand-offishness, but then I saw that he was compensating in ways he felt he could. He didn't think he could really help with Rachel, though he did try. But he took over some of the things around the house and with the boys which left me more free to be the "doctor" of the house. Allowing each other time to grieve and deal with things in our own ways was very important. Now, we are much more balanced. Tim can easily take care of Rachel if I'm not around even though I'm still the resident "medical professional."
One thing we always said to each other when we were going through a particularly hard time was, "I don't understand you right now," or "You're really getting on my nerves right now," or "I don't want to be around you right now, but I know things will eventually get better and when it does I will still be here and we will make it." With so many uncertainties about the future, Tim wanted me to know that he had committed himself to this marriage. Whether or not he was going to stick it out with us wasn't something I had to worry about. And I want him to know the same thing.