Did you ever notice how tough times show up? They are like a thief in the night, kind of like a car accident. You are just driving along, and then you hit the “black ice” and everything spins out of control. I think life is like that, more often than we would like, or are willing to share.
Recently we hit one of those unexpected icy patches. Our son, Brent, has Rubenstein Syndrome. No, we’d never heard of it either until almost 40 years ago. The Cleveland Clinic diagnosis came out of the proverbial “left field” as they had only identified 37 others with that syndrome at the time.
Most cases of Rubinstein-Taybi syndrome occur randomly, for no apparent reason (sporadic). Rubinstein-Taybi syndrome is a rare genetic multisystem disorder that affects many organ systems of the body.
That is what we knew then, and we don’t know a lot more now. A couple of things we do know: It is nothing like Downs Syndrome in that there is little hugging and a few big smiles. We know that as health care improves and those with Rubenstein Syndrome are living longer, the issues of daily living become more complex, more difficult, and much more frustrating.
Brent’s housing journey and accompanying struggles has evolved from living in an apartment with a roommate (he “frustrated them off". yes a new term), to a group home (he would not follow the rules and pushed hard against the boundaries of social behavior), to a series of “Mentor homes.” Mentor Homes are normal households that take in one or two disabled adults. Kind of like a “group home-lite.” Each transition lasted from 1 to 3 years with Judy actively involved in making sure that he had enough to do. Working in a sheltered workshop, going bowling, and believe it or not, square dancing; which is pretty amazing to watch.
We thought we finally had a home and a support system in place that could last for a long time… Little did we know that the tender for the fire was gathering and the logs to make it burn hot were just off to the side.
A month ago we got a call, about 8p.m. Brent was provoked and in response threatened the 10-year-old boy living in the house. The precocious boy was “pushing his buttons.” The result was that he was removed from the home, and put into a protective hospital. The world began to spin and we are still not sure how to make it stop.
There is a lot more pain to the story. I cannot even imagine going through this surprising trauma without the faith that even the most distressing things, can be used for good. The belief that God has a plan for Brent’s life, and for ours, and that it is designed to be good, not so painful.
Well, it is an ongoing saga and we don’t know the “rest of the story” yet. I do know that there have been a lot of tears shed, some frantic moments experienced, and a serious search for answers. When tough things happen, it seems like it often takes awhile to sort out. Brent is currently living in a home for a short time, as we sort out the longer-term options. In the middle of all of this, a very dim light has risen on the horizon. We’ll give it some time, and I’ll share the results at a later time.
Is there an unexpected challenge in your life? I can’t imagine facing the associated issues without a support system, God’s love, and a will to continue. Sometimes it feels like that is all we have. He says it is sufficient, yet it is still hard!
If you have a story of “tough times” and an encouraging word, I’d love to have you share it.
Let me know your thoughts and comments. Our dialogue continues.
Living with Trusted Advice together
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