Normal

I have had an incredibly difficult day. A very dear friend wrote the following on her blog and it resonated with me. I will allow her words to speak for me today.

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As a mother of a child with a degenerative disease, you are always striving for "normal." You go on with your routine. You do the shopping and laundry. You talk to your girlfriends about the latest gossip. You make plans and try to keep them. The problem is that you can so easily be jarred from your relaxed, normal state into a spiral of panic and worry. The underlying baseline of stress is never that far from the surface.

Watching for the smallest decline. Looking for a sign of regression. Vigilant to catch an emerging symptom. Scouring for a possible treatment or cure. Your "normal" world can be turned on its head in an instant.

You become an expert at looking normal on the outside, all the while wrestling with the stress that is just below the surface. When people see you in the grocery store and ask how things are going, you put on a smile and tell them how good things are today. You don't mention that you have been worried about your child's possible seizure activity or that there may be a promising treatment on the horizon that is being held up by politics, red tape and a lack of funding. You try to get excited when friends are raising money for cancer research, when really you wonder when someone might choose to raise money for your child's disease.

I don't want to sound so glum. I do have a lot for which to be thankful. I just wish things were as "normal" as they seem.