Having a chronic condition really sucks. Nobody would choose to have one, and when you are having a bad day with it nothing can possibly seem worse. But if I think about it, there is one thing that I think would be worse, and that is having a child afflicted by one of the many horrible conditions.
On forums for both CIDP and cystinuria there are parents that post about the terrible ordeals of their children and my heart goes out to them. It is not fair for any one person to have to deal with things like this, let alone a child.
I have a couple of stories of my own that have just given me a glimpse as to what these parents must go through. When my daughter was just two she was complaining of a stomach ache. I suddenly must have turned as white as a sheet when I thought she might possibly be having a kidney stone. My whole world stopped. I had my first kidney stone at the age of 18 and that was bad enough, how was a 2 year old going to cope? Luckily for me, it was just a stomach ache. Some baby panadol and one ridiculously disgusting and soiled nappy later she was fine.
The second time was when I took my son who was four at the time to have a mole removed. For an adult they would normally do it in the doctors surgical suite, but for a child it was done under general anaesthesia at a hospital. He had no idea of what was going on. I'm sure that in his young inquisitive mind it was simply a fun adventure.
But when they put him to sleep and he went limp in my arms I really started to worry almost to the point of panic. At that point I wanted it to be me who was going under the knife. I wished it was me. Instead I had the luxury of going to the waiting room with nothing but rubbishy day time TV and a bunch of aged women's magazines for company.
After 20 minutes (which seemed like hours) he was in recovery, and five minutes later he was up and about wanting to explore the hospital like nothing had ever happened. It was sheer relief and I was so glad he was ok.
During these times I felt a mix of emotions, among them were worry and guilt. For a parent it is only natural to worry. But that can also be a good thing. When it comes to carers, there is nobody quite as committed or strong as a worried parent. Their resolve is unwavering, their dedication, immovable. A parent looking after their child is one of the strongest things imaginable, and that strength needs to be praised and applauded.
However, the guilt is not needed. The flight of these brave children is nothing more than a cruel twist of fate. Although you might think as a parent you might have been able to do something to avoid this, you are wrong. All you can do is do the best job you can for your child. In other words, just keep on doing what you are doing.
So this one goes out to the mums and dads of sick kids and the wonderful jobs you are doing. Remember, you are not alone and there are many people thinking of you. Until next time, stay well:)
My daughter, 13, has a rare liver disease. In her short life, she's endured 36 hospitalizations including 2 comas, no way of counting dr. visits and lab draws, a liver biopsy at 3, and, yes, being in Boston (25 hours' drive from home) for research testing when the terrorists attacked occurred. We live day to day and are estatic that we have passed 2 calendar years with no hospitalization until this past Christmas. We learned to live day to day, and we take the speed bumps when they happen, and then we pick up and move forward once the illness wears down. Your statement, "Just keep on doing what you're doing" was actually one of my top doctor's in the US advice when having no explanation for the illness episodes. He told me that he felt southern doctors gave him the short straw to give the news that our child wouldn't live long. He didn't obviously know my resolve as a mom or about my GOD who still takes care of my child every day. Thank you for this post. Sometimes having a child who deals with illness is scary, frustrating, maddening, and delivers fears others will not experience. However, I'm blessed with an incredibly talented, intelligent, beautiful, sensitive daughter who loves life, and others see it. When at 2 she fell into the first coma with no answers, I naturally questioned, "Why," but now, I say, "Thank You, Lord," for trusting me to handle one of your most valuable gifts on this earth. Through His strength, my faith, the love of my husband, family, and friends, we are very blessed.
ReplyDeleteThat must be tough for you. She is lucky to have loving parents. Is she on a transplant list? Would a transplant work?
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