Welcome to our life…

Watching someone you love suffer is one of the hardest things you can ever experience. My daughter may disagree with that statement: as the one I watch suffering, she would probably say that suffering yourself is no picnic! However my mother’s heart breaks everyday as I watch my precious twelve year old daughter suffer day in and day out with Ehlers Danlos Syndrome.

Unfortunately, my son and husband also have it, so I fret over them as well, imagining the worst. My son, fifteen years old, really is not affected much by the condition – except he has this hanging over his head like a black cloud. At any point, it could become an issue in his life. My husband, approaching forty, has an abundance of aches and pains and injuries that we can now attribute to EDS but so far is not seriously debilitated by it, thank God.

My daughter, on the other hand, is affected fairly seriously – she is on crutches or in a wheelchair much of the time; she cannot cut her own food. She was a gymnast and that has been taken away from her. She dislocates  or subluxes most of her joints, many times a day, every day. Each injury adds to the cumulative damage being done to her joints and likely will result in arthritis at an early age.

Her autonomic system is also affected – her pulse runs high even at rest, then will accelerate significantly when she stands up. This causes black outs, dizziness, nausea, headache, tightness in the chest, and extreme fatigue. Some days she can’t even sit up. A host of other medical problems can be caused by EDS, so I watch her like a hawk, hoping nothing else pops up.

We try to keep a positive attitude but we do have our ‘Why Me? Why Her? Why Us?’ days – hence the title of this blog. It is a nod to my love of Shakespeare and it is a phrase that has popped into my mind  more than once while dealing with all of this.

‘Suffering the slings and arrows of outrageous fortune’ , in other words, dealing with all the rotten stuff that life can throw at us. There are days that I ask “Why us?” But the answer to that question is another question. As my husband says, “Why not us?” We aren’t special or immune to suffering. There are so many awful things that can happen to people – particularly genetic conditions – that can ruin and destroy lives; EDS is definitely on the list of rotten things, but there is much, much worse higher up on that list.

EDS will not kill my loved ones and I am forever grateful for that. Everyone has a burden to bear as they journey through life, some suffering to endure on their way. Into every life a little rain must fall. Clichés, perhaps, but the funny thing about clichés is that they are true!

This is our burden. It is a heavy one, but with the support of family and friends and the mercy of God we will not only endure this, we will thrive. There are blessings that come with suffering. It is early days yet for us, but I already see some good. One good thing is the opportunity to educate about EDS. The earlier the diagnosis, the better the outcome, so I will do my best to spread the word about EDS in the hope it could make the life of one person better.

I have thought about creating a blog for awhile, but didn’t really think I had anything to add to the conversation. Still really don’t, but I do know that I have benefited enormously from information I have found online – forums, web sites, and blogs – and want to make a small, inconsequential contribution to the search for information.  At the least, I want to keep this blog as a record of our experience – our search for answers. We have a ways to go in our journey and I want to record it for my own benefit, in the hope I can look back in better days with an appreciation of the blessings we have been given.

If it helps anyone else, in the smallest way, that would be icing on the cake.