Ever since I can remember, the day my daughter Quinn was diagnosed with a kidney disease (recessive polycystic kidney disease) friends and family surrounded us with care and concern. We were bombarded with calls, emails, cards and letters full of love expressing how sorry they were that the Quinn was diagnosed and then three short months later the same love came in when Gage was diagnosed.
Every so often I look back and read some of the notes from those early days. I found and continue to find comfort in every one of the sentiments that people have shared with us. The overriding thing I see in all of them is the love they have for our family or in some cases, for the people that didn't know us personally, I find the love they have in their faith; hoping to share some with us when we weren't sure we had enough.
After the flood of support during that time and other particularly stressful times of a new diagnosis or symptoms or treatments it's interesting to see how friends and family deal with us. You know, when the shock settles down a bit and we get into a new routine. When we're not in crisis, they don't particularly like to bring up or inquire about how things are going. So I will. I know it makes some people uncomfortable when we talk about our daily life with a progressive disease but for some of us parents, we weave it into our regular conversations because it is a significant part of who we are as a family.
But we can feel it from them when they don't want us to talk about it. We know you would rather not; maybe you're thinking if you don't talk about it that we will get a reprieve from the daily grind in the arena of raising sick kids.
But you should know. It never leaves us.
There isn't a day that goes by that we don't compare ourselves to other families that have healthy children and wonder what that is like. We long for the carefree days before we heard the words "polycystic kidney" or the various other conditions the kids happen to have. There isn't a day that goes by that we don't wonder how the kid's disease will impact their lives as they make their way into adulthood. There are very few days that we don't feel the impact financially. There is always an underlying current of worry if they will live to graduate high school and college and if we'll see them marry and have children. I don't dwell on their mortality but I do think about it; because they will have to have one or more kidney transplants to survive an average lifespan.
A few moms I've been conversing with asked me about this; if I noticed friends and family that can't deal with us and don't want to acknowledge it. Even when our life seems stable, sometimes we just need to talk about our life with special needs kids. Sometimes we don't need a long discussion, but we need for you to acknowledge it. It's okay if you don't know what to say. It is enough for you to say: "I don't know what to say, but I love you and I wish you weren't going through this."
Please don't be scared to talk to me about the kids' disease, or their other conditions that impact their dailly living. Trust me, whatever you ask or say won't make me think about their challenges more than I already do.
And by the way, if you are one of the friends or family that supports a family of kids medical or mental challenges, thank you. You have no idea how important that is to a special needs mom like me.
Julia blogs at Kidneys and Eyes, writes for Aiming Low and began a site for families impacted by speical needs called Support for Special Needs.
If it's any help, I had a kidney disease (not the same one as your daughter but not something that looked very encouraging) and I had a kidney removed twenty-five years ago. Since then, I graduated from law school, married, had a child, and am working at a challenging and satisfying career.My life is very good.ReplyDelete
Take heart; not all seemingly bleak medical stories have unhappy endings.
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