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Does I love you help? I am crying with you reading this. We really need to get just Adam and Seph together...that way they can be normal and do the same things together and for that brief time they will be just like any other boy with each other.
Not that it matters, but do you know what brought this on tonight?
I think that he was playing hard today and just coudn't keep up with all the boys on our street. He was really tired, and he was in pain. His calves felt very tight, and he had a hard time walking.
This is one thought....Let Adam be in the moment, at least for awhile. Let him feel his sadness. That seems very normal to me, and healthy, that he would feel sadness. Empathize with him.... "Yes, I know you wish you could run as fast as your friends, be 'normal', ....." Later he can think about the things he can do well. Maybe you did empathize and let him feel whatever he was feeling at that time. I know you have a lot of courage dealing with DMD and I'm sure your son knows this in his heart. Thank you for sharing this painful situation. It helps me to think about this in advance.
Angela,
My heart is breaking for you and your family. I dread that moment. My son is 6 and hasn't mentioned anything about being different. He does realize that he doesn't run as fast as others, but hasn't been emotional. I don't know where your faith stands, but let him know that God made everyone special and different in their own way. Some children wear glasses, hearing aids, may have ADHD or another disorder and so on. Accentuate his positives and let him know about the things that he's good at. Is he involved in any activities. Brandon takes horse back riding lessons and he swims. I'll pray for you tonight.
Hugs,
Julie
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