Another Milestone

FYI, Em survived her turn with HFMD. Her fingertips are in the peeling, tender new skin stage and the spots on her legs are starting to heal up, but in general, she is back to normal. (Her brother, who generously shared this lovely virus that he picked up from an outbreak at church camp with the family, has peeling hands as well. Neither of them will let me take and share a picture here. I tried to convince them it was for science but neither would bite. 😦 ) It is a huge relief that Em came through the virus with so little difficulty.

In fact, she was well enough to do something this weekend that she has not been able to do for 4 years.

 

She went to The Great Darke County Fair, for the first time since she got sick. That is a big, big deal. Long time readers might remember me talking about how important the Fair is around here. I know it is a big deal in every rural county but here, it has a life of its own: ‘The Great Darke County Fair’ is the official, longstanding name. People live for the fair here.  I was not raised here, so I could honestly not care less about the fair. The only redeeming quality is the food, in my view, which I would put up with going to the fair to get. When Emily joined a 4-H club a couple years before she got sick, I, frankly, hated it, not least of all because it meant we had to be at the fair multiple times and not just our usual token single visit. Not that I would have *wanted* Em to get sick and have to drop out, but, let’s just say not having to do 4-H was a tiny positive in a time of affliction. The saying “It’s an ill wind that blows no good.” comes to mind here.

So, I personally have never been a fair aficionado and the fact that Em has wanted to go desperately for 4 years and not been able to has only deepened my loathing of Fair Week.

But, as Fair Week approached, she was making plans to go with friends at some point and I was getting myself psyched up for that (I kept  telling myself that she is almost 16, she would be fine, the friends are trustworthy, isn’t is great that she thinks she can go, isn’t it such a blessing that she is well enough to go, etc). So, when her brother invited her to go with him and his friends spur-of-the-moment on Saturday, I was anxious but already prepared to let her go. It was probably a good thing he only gave us a 10 minute heads up to decide and get her ready.

I didn’t try to  talk her out of it and just let her make the decision. She packed a little backpack – made sure she had a midodrine and Benedryl (just in case) and pain meds (just in case) and a water bottle and a working phone and her med alert bracelet on her her wrist and I  let her go – with what I would call a few reminders but Luke would probably call a lecture. Luke said he would bring her home around 10 but she didn’t think she could go for  that long, so we made arrangements to pick her up around 8. I was proud of the fact that she tried to be realistic about how much she could handle and when we picked her up she said she might have been able to stay a bit longer.

A couple days later: She is predictably sore – her legs are hurting and her feet are really painful, but she is basically fine after walking so far. It was an uncharacteristically cool and overcast evening and I think that made it possible for her to go and have fun: there is still no way she could do 90 and sunny.

Em has lost so much over the past 5 years (it will be 5 years on September 8 that she dislocated her knee badly at gymnastics and started the downward spiral that she is still recovering from)… so many things she could no longer do and had to let go. When she first got sick, letting go wasn’t a decision or a choice that was debated and logically reached. Instead, the loss was foisted upon her – a harsh ripping away of all of the things that she enjoyed. Gymnastics, 4-H, theatre, friends, even music for a while. While we are settling in to this life and have found some level of acceptance , I can tell you that  the pain of loss is always fresh and the wound is still tender. As she gets ‘better’, regaining some of those lost activities is healing.

4 years ago, at this time, she had slipped into a flair and everything went bad very quickly – in addition to the constant dislocations, increasing pain and horrible fatigue, it was about this time that the autonomic symptoms started up and hit with a vengeance. She could barely stay upright long enough to walk to the bathroom or from her bed to the couch. And, while it seemed bad at the time, looking back, I know it was just the beginning of a long journey to come. A lot has happened since then.

And now, she is better. We don’t look too far into the future and we really don’t know what is to come. For now, we will just take this small victory and enjoy her being better.