Dear family and friends,
Brant and I have shared with you several times how we measure Grayson's progress along his journey in mere inches. We don't know when the inches will be gained, exactly where his journey is going to take him or how long it will take. We do know that our ultimate goal is to insure that he knows that we love him and through our love and support he knows that God loves him.
Our intermediate goal is to help him improve his skills of daily living (personal hygiene, dressing, eating, safety, and communication) to the point where he may be able to function at a level high enough to qualify him to live in a group home. Should he outlive our ability to care for him, the cost of one-on-one care for the remainder of his life is prohibitive.
Each one of his daily living skills I mentioned above is significantly compromised hence every waking hour provides an opportunity to practice and encourage progress.
One of the challenges we have mentioned from time to time is his incontinence. It is hard to know if he is unaware of the need to eliminate or simply does not have the ability to choose to disengage from whatever activity he is engaged in. We work consistently on this most basic skill by taking him to the restroom every hour he is awake. Every hour, every day, every week, every month. That's a lot of repetitions.
Twice yesterday and three times today, Grayson stood up from his activity (eating, reading, or watching TV) and pointed out of the room. When I asked where he was going, three of these times he responded "to restroom". What a dramatic and welcomed milestone! Because his short-term memory is so compromised there is no guarantee that this will be the same tomorrow. We can't trust that it is a sustainable pattern yet, but a pattern begins – and that's progress. That's hope.
Those of you who have had small children know how rewarding this hint of improvement is. Imagine a 6 foot 2 inch toddler; imagine two years (so far) of potty training. Imagine mom's delight at progress.
Celebrate the small steps in life, they are all important in the long journey – we can't get from here to there without them.
In thanksgiving and in hope, I wish you each peace this night.
Regina
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