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Honestly every day I
am proud of her. [My child] is brave, strong, caring and wonderful.
Though this disease has been a difficult journey it has made me see
how truly wonderful she is! She swims, runs and plays with more
heart than any kid I have ever seen. She knows she has to work that
much harder and somehow she finds it within herself to be the best
she possibly can. I am proud of her and she amazes me constantly.
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I remember back when he had just turned 5 years old recently diagnosed and we had started to do his weekly blood draw. We were applying EMLA prior to the blood draw. Then one week he suddenly told us that he could do it without the EMLA cream that he was not afraid of the needle. He told he was brave and that he wanted to get better. When the moment came, [my son] just held his arm out, looked straight down where she was drawing out the blood. He was really so brave no whimper nothing. He made me so proud and at the same time I felt so sad to know that my son had to deal with this at such a young tender age. To this present date, we are going on 3 years of weekly or sometimes biweekly blood draw and he still handles it with such ease as if it was just part of his every day routine. Honestly I could not do it but when I have to have any test done, I muster up the courage just thinking that [my child] does this all the time, I can handle this one time. It's quite interesting how we sometimes learn from our children valuable lessons.
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I find pride in just the everyday journeys these children must take. How many of us adults would be so strong with regular blood draws, daily medications and injections. I feel pride everyday when [my daughter] can take her medications and as she becomes more and more aware of the disease.
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In the beginning when she suddenly became aware that JDM wasn't just going to go
away, she went through a very difficult time of coming to grips with it all. One day, after a very grueling time at the infusion center she was quiet in the car on the drive back and I was getting worried about her. Finally she said,
“Grandma, I'm not going to worry about it any more, I'm just going to go with the flow.” Those words
“Go with the flow” are always with me now and have been so helpful during times when there was nothing I could do to change the situation. Which is often!
We are here to support her, but she has actually supported us through all of this. She is our hero!
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The one thing that sticks out in my mind about [my child]... the fact that no matter what she has been through she always puts others feelings before hers.
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It is very difficult for me to understand how, at only 3 1/2, [my child] understands that, although she is sick, there are kids that are much sicker. In the beginning, after 3 days in short-stay for pulse treatment, she decided that she wanted for the kids who have to be in the hospital overnight to have teddy bears. So we went to Target and bought 8 teddy bears and clothes for them. It was all her. It is times like these that I get a glimpse of her future -- as a caring, loving, and sharing adult
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I recall one time when [my son and I] were staying at the hospital for a few days because they thought he had an infection in the PICC line he had at the time. The nurses could not get blood from his veins in his arms, so they tried to take it from his heel (at 2:00 in the morning). It was a rude awakening for both of us, as much pain as he was in, looked over at me, and said, "it's okay Mom, I'll be okay, just go back to sleep". I was blown away at the maturity of [my son], who was only 5 at the time.
[My child] amazes me every day. He gives our family the courage and strength to carry on.
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