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I think I've made my way through the normal mourning stages and entered acceptance. I do have to admit, though, that with the end of summer and the beginning of everything that was going on when she was diagnosed (preschool, Sunday School, etc.) I feel nervous. I seem to have an irrational fear that each year about the time school starts we'll have a child that can't walk...I'm kind of holding my breath until October.
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When [my son] was diagnosed with JDM, My husband and I were so upset and scared. We weren't sure how to deal with it but we told ourselves that we would get through it.
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Some days I am so discouraged, I try to always be positive and trust in that God will see us through this. This is very hard to deal with sometimes, but I am reminded that my child is still alive and I am grateful.
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It’s been over five years for [my daughter]. … The tears have stopped but the heart ache is still there a little, it comes in waves and hits you sometimes when you don’t expect it. Also the fear of flares is there niggling. [My daughter] is so close to normal now she plays sport and swims etc after all this time I really can’t bare the thought of starting over again.
Most of the time we are just a normal family the two girls fight or play like any other sisters… It’s not so much the fact [my daughter] has JM that I struggle with it’s that she hates to be different and I feel for her so much. She’s the best kid you could ever ask for so I still think “why her”. Five years is such a very long time, there have been so many ups and downs.
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[K] was diagnosed on 7/5/05. I have felt so many emotions since then. One of my first emotions was fear- fear for my daughter- was I going to be able to fix this and make it better?
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Another emotion I had felt was anger- angry that I hadn't taken her to a specialist sooner. She has had symptoms for at least three years (rash and muscle weakness).
Then I wanted to find out everything about JDMS in an instant. When I started reading information from the websites- I felt overwhelmed. I had to slow down and let the information process. My brain couldn't accept all the information. I was trying to make mental notes as I was reading and I couldn't keep up.
Then I felt like I was gaining control of this situation and that we would conquer JDMS. But now I know that our lives will change daily. I need to be flexible and ready to react to whatever happens.
I try to make time to cry. Having 3 children, running a household and working full time outside of the house -unfortunately means I need to schedule my crying time (I'm little anal).
I am afraid because we don't know what the future holds for our children. When our children are healthy there is so much to worry about-adding JDMS seems like our worries have increased to a huge magnitude.
My husband is not where I am with [K’s] illness and sometimes that can be a strain as well. My other children have had mixed emotions. My oldest daughter has been more helpful than I expected. My son is 5 and is not dealing with the fact [K] is spending more 1 on 1 time with us (doctor visits/treatments/tests). We've been trying to do little things with him- so he feels we love him too.
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When our perfect and plump baby was diagnosed at 7 months old, I was in denial. Especially since [my daughter] didn't exactly fit the diagnosis. She had no rash and she had other symptoms not associated with JDM. It's been a roller coaster since. But no matter how bad things get, we still have her and I am so grateful for the past year and a half where we have gotten to know and see [my daughter] develop into a toddler.
Sometimes it seems as if just when I've adjusted and feel comfortable with the way things are, 'new' problems pop up. Those are the times when it can get so frustrating I almost feel like I can't handle it. But believing that this is all happening for a purpose helps me to continue. The most therapeutic thing for me has been this discussion board.
Having a positive attitude helps, too. If I felt sorry for myself or my daughter too much, that would only hurt us. It's very tough, but we are not given more than we can bear. That says a lot about how much strength we have!
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I feel like I have been on autopilot for two and a half years. Everyone tells me how well I handle his disease and treatment, It is really because I have emotionally shut down. I feel disconnected from my feelings. I don't think I have allowed myself to see [my son] as really sick, I always feel that other kids are more "sick" or "terminal" and therefore have not really mourned for [my son's] health.
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I think I have to sort through it all and learn to deal. I think my experiences with this disease has crossed over into every aspect of our lives. When my youngest [child, not my child with JM], got sick I just was sure it was very major and that something would happen to her. It was a blood infection, that was serious, but she survived. I almost went crazy. I have a hard time now not expecting the worst. You know, maybe therapy would help...it took posting this to make me realize that, wow, I have issues that I need to get passed. I think I have been trying to make a conscious effort to choose not to think about it but I don't know that really works.
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It's still an emotional roller coaster, but generally there are many more good days than bad. I find that I am still almost hyper-vigilant in watching for any changes, but then I guess that's not such a bad thing, as things do change & flares have & are happening!
I agree about the anxiety about the "anniversary" of onset.
My husband & I are pretty much on the same page, but it falls to me to be the MD & school contact. We are grateful [our daughter] has done so well, but it is always on our minds (like vacation activities - will she be too tired? too much sun? etc). It has been an adjustment in our thinking the past four years, and will be for the future.
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I have been with this for 11.5 yrs and still coping, but I do find myself a little depressed sometimes because I cant even walk, why did it have to be me?
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Most of the time we carry on with our lives and try not to let the JDM stop us doing things.
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I think we all go through stages the first stage is morning the life that your child would have had and should have had. The second stage is the knowledge and anger stage. The third is accepting and putting the disease in a place in your life where it doesn't take over.
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[My] initial shock turned to anger and that motivated me to fight back. It lit a fire under me to do something and it is still burning. I guess I haven't gotten to the acceptance stage. I'm still angry about it all. Whenever I hear that a child went for months and years without a diagnosis or treatment it is infuriating and unacceptable to me.
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I went through depression and treatment.
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If we take one day at a time we seem to handle things much better then if we look too far ahead.