"Suffering the Slings and Arrows of Outrageous Fortune"

A friend, whose young daughter was diagnosed with diabetes, recently gave me a book that helped her in dealing with the pain of living with your child’s chronic illness. It is called Chronic Kids, Constant Hope by Elizabeth Hoekstra and Mary Bradford. It is faith based and deals with everything from the grief of the diagnosis to the hurtful things people say to taking care of yourself to strengthening the family unit.

I found it helpful and comforting – it mostly reinforced my own beliefs and thought process, but that in itself was comforting. I really am not crazy – something I have been trying to convince my husband of for quite some time now! That I am tearful over little things, is normal. That holidays and special events are bittersweet, is normal. That I seek out every nugget of information, is normal. That I have the urge to smack people who are insensitive, is normal. That I have good days and bad days, is normal. I am not alone in these feelings and that is a comfort.

The thing I found most helpful was the section on praying for healing because it validated my own thoughts on the subject – thoughts that I have struggled  a bit with. I believe in miracles and I believe in healing. However, from the first moments of accepting the EDS diagnosis, it never occurred to me to pray for a miracle – that just does not fit in with my understanding of  God. Pray for a cure, yes. Pray for strength and wisdom and courage, absolutely. Pray for God to heal my daughter because it is convenient and would make me happy? Nope. I was pretty firm on this but struggled because of a few conversations with well meaning people where I was too newly wounded to rationally speak my mind.

I remember early on, a time when I had recently come to the conclusion that EDS was the explanation for all of our problems. Em was continuing to get worse day by day and I was dealing with the magnitude of this life changing diagnosis and was terrified. I ran into a friend and she asked how Em was. When I said something along the lines of,’ well, we finally have an appointment with an expert and that is the best thing we can do right now’, she replied, ‘no, the best thing you can do is pray. God will heal her.’ That comment bothers me even a year later. I didn’t say anything at the time because I was, frankly, a bit speechless and it was a good thing: if I had opened my mouth, it would have got very unpleasant, very quickly.  Another instance was when a well meaning acquaintance told me I needed to arrange a laying on of hands for my daughter and was surprised I hadn’t already done so. There have been other similar comments – all well meaning but totally against my beliefs.

So, thanks to this book, I know I am not the only one to believe what I believe and I am not a heretic for believing it. I now can put into words what I believe and next time someone says something like this, I can respond if I feel it is necessary or just ignore them if that is the wisest thing. I know my daughter, they don’t. She is very reserved and would die (possibly literally) before letting strangers lay hands on her. She doesn’t want anyone to know what is ‘wrong’ with her, let alone pray over her. And what about the aftermath, when she wasn’t miraculously healed? I refuse to allow her to think she was refused healing  because she didn’t have enough faith or was bad in anyway or didn’t pray hard enough or God just didn’t care.

I also refuse to allow her to believe that she is broken or defective in anyway. So she has a genetic thing. So she has to use a wheelchair at times and can’t do everything she would like. So what? It doesn’t mean she is defective. She is fearfully and wonderfully made and God had a plan for her life long before she was born. She is not wrong or a mistake. Her life is meaningful and important and precious and the world would be a sadder place without her. She doesn’t need ‘fixed’. She needs proper medical care  and support so she can live the life that is waiting for her. God works through doctors and technology to provide miracles in ways we may not be able to comprehend. In fact, I would say there are a bunch of blessings that are working in our favor right now – just because we won’t get the big, flashy healing miracle should not diminish the quiet, little miracles that we are blessed with daily.

In a nutshell, I believe that God is capable of miracles, but He doesn’t heal a chronic, genetic condition just because we want it. If that were the case, nobody on earth would be ill! While I don’t ask for a miracle, I absolutely expect good to come of this – I already see some good happening – and I believe there is a plan far beyond what we can perceive.

{Went off on a little tangent there, but I do highly recommend this book to any parent of a child living with a chronic condition.}


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