Cynthia Mayeshiro
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I think we need to remember that each person is unique and every situation is unique. I have a very high pain threshold, and I find I am almost dangerous for not feeling pain. The important stuff to remember is to find a great surgeon who works with those of us with Muscular Dystrophy, and just as important to find and have an interview with the anesthesiologist. Only then can we relax and let the professionals due their jobs.
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I had a “lightning bulb” moment several years ago regarding the clothing alteration issue while watching a TV show about a family of little people. The wife/mom on the show was sharing a memory about her mom who had made it a priority to have her young daughters’ clothing altered so she would feel better about herself, using the logic that just because her young daughter was only 3’6″ she still deserved to have clothing that fit her body and clothing that fit in with the other kids at school. Yes, it does cost money. Yes, I can easily talk my way out of it. And yes, I feel better knowing my daughter feels so good in her clothing. My daughter is 4’8″ and uses a wheel chair. Hopefully another mom out there will find inspiration as I did with this little story.