On September 2nd, 2010 our four-year-old daughter, Sophie, was diagnosed with juvenile dermatomyositis (JDM), an auto-immune disease that attacks her muscles and skin. I have decided to write about it. Here is why:
1. It is a practical way to update concerned friends and family on Sophie's health and treatment.
2. It is therapeutic.
3. It is not secret or shameful to have a disease.
4. Although it is rare, we are not the only family to have a child diagnosed with JDM and there is a chance that we can provide information, solace or "connection" for others by sharing our story.
5. I have found that when you share your thoughts, feelings, fears and dreams, AMAZING things unfold--and you discover that you are not alone.
You are four!!!
Make a wish.
Wednesday, January 5, 2011
Happy Thanksiving! (a bit tardy..I know)
Please excuse the delay. I was forcefully and violently sucked into the vortex of holiday upheaval and have finally been spit out on the other end. After taking the first few days of this week to dust myself off, I have decided to resume writing and get to the thanksgiving post I have been thinking about since November. While I agree that it is rather odd to be sending out thanksgiving wishes on January 5th, for those of you who know me well.....6 weeks late is really not so bad. I have been feeling intensely that there is something not right about missing thanksgiving on my blog and I have known that when I have the chance to return to writing, thanksgiving would be the first order of business. You see, over the past months, I have felt many feelings surrounding Sophie's journey with JDM. As one might expect, I have experienced feelings of fear, sadness, loss, loneliness, guilt, overwhelm and pity. However, the one feeling that I have been fortunate enough to be experiencing as of late is that of thankfulness.
I have so very much to be thankful for. I have access to experienced doctors who were able to diagnose Sophie quickly and, in turn, treat her effectively. I have good health coverage and, as a result, have been able to afford critical evaluations, treatments and medications in a timely manner. I have a father and a father-in-law (both doctors) who have been there to help with medical questions. I have a tremendous support group among my friends, family and community who are there for me. I have a husband who is truly a partner in parenting our children...in sickness and in health. I have a handsome, healthy, smart, sensitive and caring son who has gracefully risen to the challenges of having a sibling who has required a bit of extra attention. And, I have a beautiful, strong, funny, courageous, bright daughter who is responding well to her treatment and growing stronger everyday.
There is something about coping with illness in a family that suddenly puts everything into perspective. In an odd way, that is something to be thankful for.
So what if the post is 6 weeks late?! We are here, we are healing and we are hoping. We are hoping that 2011 will be a year of health and happiness FOR ALL.
So with thanksgiving behind me, I can NOW wish you a VERY HAPPY NEW YEAR!!!!
I have so very much to be thankful for. I have access to experienced doctors who were able to diagnose Sophie quickly and, in turn, treat her effectively. I have good health coverage and, as a result, have been able to afford critical evaluations, treatments and medications in a timely manner. I have a father and a father-in-law (both doctors) who have been there to help with medical questions. I have a tremendous support group among my friends, family and community who are there for me. I have a husband who is truly a partner in parenting our children...in sickness and in health. I have a handsome, healthy, smart, sensitive and caring son who has gracefully risen to the challenges of having a sibling who has required a bit of extra attention. And, I have a beautiful, strong, funny, courageous, bright daughter who is responding well to her treatment and growing stronger everyday.
There is something about coping with illness in a family that suddenly puts everything into perspective. In an odd way, that is something to be thankful for.
So what if the post is 6 weeks late?! We are here, we are healing and we are hoping. We are hoping that 2011 will be a year of health and happiness FOR ALL.
So with thanksgiving behind me, I can NOW wish you a VERY HAPPY NEW YEAR!!!!
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