My family and I have just come out of one of those difficult decision seasons. As many of you know, my oldest son has a condition called Fragile X Syndrome. It’s a spectrum disorder, meaning it can result in anywhere from mild to severe cognitive limitations. Unfortunately, my son’s limitations are severe if you believe the paperwork that has followed him throughout his life. Tests and evaluations, assessments and IEPs. On paper, my son’s development is in the severe to profound range, developmentally not much more than a toddler.
But in person? He’s gentle and easy going. True, he doesn’t interact much—okay, virtually not at all—but he does understand more than what any test can reveal. I always describe him as the purest form of self-centeredness without a trace of malice. Please don’t confuse his self-centeredness with selfishness. The latter can demand a certain amount of gain whether it’s necessary or not. My son’s world revolves around his needs. While it’s true he doesn’t notice the needs of others, the upside is he wouldn’t dream of taking something from someone out of jealousy or selfishness. He might, however, take the pizza off of your plate if his own pizza is gone. Not to deprive you but to satisfy his need.
Those needs are basic. Food, simple entertainment, comfortable environment. As long as these needs are fed, he doesn’t really care who is meeting them.
I always used to say I would have my son with me until I die. He’s my son, my responsibility. But a long time ago another Fragile X mom asked me if I wanted my son to lose everything all at once—his caregiver (me), his home, his lifestyle, etc. Wouldn’t it be easier on both of you, she asked, if you had a part in the decision of where he’ll live after you’re gone?
I’ve never claimed to be the sharpest pencil in the box, but I can recognize good advice when I hear it. While my son was in school they offered tours of various day programs and residential facilities for disabled adults, and I visited many over the years both with tours and on my own. Some seemed better funded or better managed than others, some wouldn’t take anyone as severely handicapped as my son; some were for medically fragile individuals, others for specific faith communities. Some were too large, others too small.
I did, however, find two places that seemed possibilities. One close to home and another about forty-five minutes away. The thought of my son living elsewhere, however, still made me more than a little uneasy. I’m really good at worrying, even though my ultimate trust is with God. But I know how hard this fallen world can be on a person, and I wanted to protect my son as long as possible.
But after talking to other parents and other people who work in the residential industry, I came to realize the older my son gets, the harder it will be for him to adjust. We were already in a period of change after school ended last year. Every summer he attended the same recreational day camp, then a week away at another camp, a few weeks home and free before school started up again. I thought it might be best, if we were serious about a residential facility, to make the change in the fall when he would have gone to school.
Ultimately we decided on the facility closest to home, but I have to admit it was still a decision I lost sleep over. This is my son, and no one will take care of him the way I do. This is true, but not very practical to continue long term. As I age, it’s not getting any easier to see to his needs; I knew I needed help. So as I continued praying about the decision, I asked God for some word of encouragement, some sort of simple sign that I’d chosen the right place, the right time, the right decision overall.
So when the Work and Activities director associated with this particular residential facility said something to me, it brought the peace I was looking for. She said: I know there is one question running through your mind right now, and I want you to change two little words. When you ask yourself, “Am I doing the right thing?” I want you to say, “I am doing the right thing.”
Sometimes the hardest decisions are made easier by an encouraging word.
It’s been a few weeks since he moved, and my son seems to be adjusting well. I can tell he’s been accepted by both the other residents and the staff. We bring him home on Wednesdays and weekends, and to be honest that’s to help me as much as to help him with the transition. So far, this newly empty nest has felt a little unreal. Free time isn’t something I’m used to, and I’m not yet sure how to fill it. By writing, I hope, that’s how God has directed my time before. But things will need to settle into a new routine before that happens, because as usual when real life takes an emotional toll, as this has, fiction writing takes a back seat.
If you’re in the midst of or will soon be facing a difficult decision, I’m sure you’ll be prompted to pray often. I know I was, at various times of the day or night. But don’t be afraid to ask God specifically for a word of encouragement, of direction. Your word may even come from an unexpected source—I’ll bet Balaam was pretty surprised when his donkey started talking. The point is, God doesn’t want His will to be a secret. He just wants us to ask.
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