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Sunday, October 16, 2011

Living on the Edge

Today a mom is acting as nurse and doctor to try and keep her child out of the hospital.

Today a mom is sitting at her child's bedside in the hospital longing to take her home.

Today a mom is burying her 5 year old daughter.

These scenarios are common on any given day when you are living "this life". My news feed on Facebook provides stories like these far too often reminding us all that we are never too far from the edge ourselves.

There was news this week of yet another one of our special little friends passing on. I can easily count at least six children since this summer. Tomorrow isn't guaranteed for anyone, but when you have a medically fragile child you are always aware of how things can go downhill in the blink of an eye.

How do you cope? Everyone is different, but here are some of the ways I know of:

Some take medication - you know, "better living through chemistry"? I'm not ashamed to admit that I NEED it to get by, although I wish I didn't.

Some have vices like alcohol, food or cigarettes. It's not anything anyone wants to admit, but these are often the easiest things to access that might relieve some of the stress instantly. Most of us are not very good at taking good care of ourselves. By the time we make sure our children have what they need, there is nothing left most days.

Some rely heavily on their faith, though some wrestle with it. There is nothing worse than seeing your own child struggle so it's no wonder that even those with very strong faith sometimes question why such things can happen to their children.

Mostly, we spend a lot of time venting to and leaning on each other in the virtual world. Chances are if you have a MF child you don't have many friends in real life in the same situation. I believe that the internet has saved many of us from ourselves by allowing us to connect with each other so easily and honestly. I'm really not sure how moms like us made it before things like listservs, discussion boards and Facebook came along.

Thankfully we have each other to lean on when our children are sick or leave us, and to pull each other back when we get too close to going over the edge ourselves.

1 comment:

  1. Hi, I found your blog as I am writing an article for Complex Child magazine about CdLS. My brother Adam was born with this in the late 70's and lived for six years. So much more is known today about it, and the kids have the opportunity to live rich, full lives. Being Adam's sister led me to eventually become a PICU nurse. I work with special needs kids every day and it's extremely fulfilling. Just wanted to say hi and thank you for sharing Ella's story.

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