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What person do you rely upon the most for support when the going gets rough with your JM child? You need not mention names specifically, but relationships (i.e. husband, wife, friend, other family member, church group, etc.) and why are they special to you in this way? |
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My mom, she is always with me for all of [Q’s] appointments and admissions. Besides her the other person that has been my source of support is [D], [my daughter’s] Child Life Specialist. I would never want to do this again without her - she is our rock.
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Leanna's Initial treatment: Prednisone, oral Plaquenil, Multi-vitamin, Major decrease in sun exposure and change to zinc oxide/more coverage sunblock
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I would say other than my Hubby; the most supportive person would be [T – from the JDM bulletin board]. She has been there for me through it all. We cry together, laugh, love, and support each other. It is odd, I have never met her face to face but through it all she is my rock. Who better to be there for one another than two moms experiencing the same things through their daughters with JDM.The most supportive group that I rely on is right here on this message board. I cannot express enough how this site has uplifted my spirits when they have been rock bottom. I don't know how I managed without it when [my daughter] was first diagnosed. I felt like I was all alone; now I know that I am not alone. It is almost like a family reunion, we all laugh, cry, anger, and rejoice with each and every post we read. The support system here is greater than any other I have experienced. So with this I say thank you to each and every one.
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I rely on my whole family, anybody who is available at that moment to lend me an ear, advice, or shoulder. That could be my husband to my sister in law. They are all there for us and I am very thankful for that. I am also very thankful for [M]. She has given me so much positive advice and help not only as a "friend" but through Cure JM. Thank you [M] for giving my family Cure JM. [My daughter] is a better child because of it. You have lifted her up many times. My whole heart is grateful.
I am also very happy to hear from all you parents. What would I have done for the last 4 years without you. THANK YOU! You are all very special families and we WILL find a cure for these children.
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My husband and my mother are my number one supporters. I don't know what I would do without them! After them there is still a very long list of people in my support system--my two sisters, my three daughters, [my son’s] doctors and nurses, friends and extended family, my co-workers and especially the whole myositis support group! I guess I'd have to also mention God, my faith has been a big support to me-especially at difficult times.
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My husband is great for the hugs and understanding. However he isn't very good at sharing his feelings. [L] and him are very close and he has never really come to terms with her having a disease. He has been very soft on her since the dreaded disease entered our lives. I guess I am to blame for that at times as well. I remember when he first heard she had a disease he fell to his knees, put his face in his hands and sobbed.
…My best support is from my wonderful, loving, and caring friend [K]. I met her through this site.
…[My daughter] also gives me support even though she doesn't know she does. She gives me so much strength. Every day is a gift with her.
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My family is great but sometimes I get angry with them and can't express what I'm going through. Recently they felt a need to remind me that I should be happy with what we have and how well [my daughter] is doing. This didn't help because I find that I feel so much for all these kids and it hurts me so much to see any of these children go through the pain this disease has caused.
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Mine would have to be my pen pal [L] because she is the most understanding of my friends!
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