Before I get back to the subject of vacations, I did want to answer a question that I seem to have gotten a lot lately. People want to know "so what are things like for the rest of you now?". Its taken me a while to let some of those emotions settle in but I think I can now speak to that a little more than I could have a few months ago.
It was very interesting to watch our daughter adjust to the change. For many years she spent a lot of time paying attention to our instructions on how to stay out of harms way. To make it easier for her she would retreat to her playroom which is just off the kitchen. Tyler never entered that room so she new it was a safe zone. After he moved away, Sam would still spend quite a bit of time back there. But within a week or two, we noticed she played in the living room or at the kitchen table a lot more. Her toys began to pop up in more areas of the house. Now we can tell she feels free to move about the house in any way she wishes, and she spends a fraction of her time in the playroom than before. In other words we have now discovered the ability to trip over toys in every room of the house and not just one.
When Tyler lived at home, if we wanted restaurant food we picked it up and brought it home to eat. It was something we did because it was just easier and less stressful. Once Tyler moved away Sam still wanted to pick food up as opposed to eating in a restaurant. This made us realize how conditioned she was too (I suppose that makes a lot of sense since she was born into the situation). Fortunately she has since changed her mind and decided that food coming hot from the kitchen sure beats driving home with it any day.
For Robin I have to say I believe that her biggest fear was that she would be paralyzed by guilt. I think this probably would have been the case if not for Tyler showing us that he really is enjoying his new life. If he were struggling, she would certainly be struggling as well. She can also now work more and she doesn't have to stress nearly as much when I travel. Overall, I think she is doing pretty ok.
For me its a mixed bag of emotions. I miss him and think about him about 10 times a day. I miss how much he liked to interact together...it was almost constant. He had such a large presence in the house that without him its almost like someone turned off all of the sound and you suddenly realize just how quiet it is. I don't enjoy my walks the same way I used to. In a way its like missing a limb might be, I was so accustomed to him that I don't quite know how to do certain things without him. I have also struggled to live without the high octane stress (that's hard to believe but true) and that is where anxiety medications and therapy have played a huge role in keeping things smooth for me. On the flipside I am enjoying the added time and attention I can devote to the girls and to myself.
The most compelling thing for me is that I could not have predicted how slowly we have had to take this transition. When you are used to a certain routine, and pace, and stress level, you can't be expected to turn that off and suddenly switch gears. It really has been a process of decompression. Our strategy has been to make very small changes that are comfortable. We are keeping in mind that for nearly 25 years we had Tyler's continual care as the overwhelming top priority above all other things. It was literally the single factor that determined everything else that happened. With him thriving in his new home, that priority has shifted dramatically and left a void that we are figuring out how to fill.
I want to be careful with this comparison but if you saw the movie "Sniper" there is a scene where Chris comes home from such a high octane environment and while you would think he would be excited to get back to normal and relax, it isn't that easy. His mind was conditioned to work at one level and he learned that reversing that conditioning was a slow and difficult process. I'm certainly not saying the situation is the same but I do believe that the effects of the conditioning can be.
Let me just finish by saying that if you are in the midst of making a transition for a loved one, or if you are even in the stages of considering it, do NOT underestimate the effects it will have on you as a caregiver even if it goes smoothly. Be prepared for your own aftercare and make sure you have support for the long term. Plan to keep your routine manageable and introduce changes slowly. And most of all, if you feel like you need help, get help.
Be well and good luck. Tom
Praying for your family.
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