Recovered

“Is Paige better?” has become a question that gets harder and harder for me to answer – we spent 3 months in a hospital, our daughter was on deaths door – and there we received her diagnosis. Yet, when you’re on the outside of a situation like this, when you hear of someone leaving the hospital, you think “Oh good, she’s recovered!”

I’m sitting here, in my rocker – with my blanket – and my coffee. I hear the ventilator in the background, and oxygen is running. I have the monitor set up beside me to keep on eye on her oxygen and heart rate while she sleeps and recovers from her severe episode – it happened from 10:45 – 3, and her heart is still beating fast from it. She received two sedatives that will change her for the next few days – she’ll sleep all day and all night most likely, and when she does wake up she won’t be the girl that I rocked to sleep yesterday. And honestly, we have no clue if she ever will again. It is a flip of a coin.

There are differences in illnesses – if you go to the hospital for an accident or a stroke, normally you receive treatment, make sure you have therapies lined up, and are sent home to recover. The hospital stay becomes a memory – the injury is long gone. You can now recover from the trauma by psychological help, support, and your faith.

With a terminal injury, or a genetic condition, the goal of a hospital stay changes from getting you recovered, to making sure you have what you need to have a life at home. Paige has what’s called a “life limiting condition” She is in hospice because she fits the criteria of possible death in 6 months or less. Recovering from the trauma is non existsent, since the trauma happens over and over again. We merely learn to live with it, to cope in our own way, and ultimately to realize what God is teaching us throughout the whole process. He is the one that helps us to recover.

How confusing it is though when people see pictures of a happy child! That’s the cruelty and beauty of this disorder – Alternating Hemiplegia of Childhood (which btw has way more symptoms than Hemiplegia). Sometimes it’s hard for me to post milestones, like how she ate her first teething cracker on Thursday – simply because some people don’t understand this may be the only cracker she eats. She may never eat by mouth. She may go downhill, like she did, a few days later and take a month to get back to that point. Her eating today means nothing for tomorrow – it is simply a joy, we take a picture so that we don’t forget. We praise her for every milestone, no matter how long they last.

And yet its beautiful too. Some patients never get a chance to eat a cracker. Some are paralyzed permanently. Some are not even living. So, if my girl is paralyzed one day out of 6 weeks – that’s a huge blessing. If she loses her breath for 8 hours out of 6 weeks, she’s breathing the rest of the 6 weeks! Praise the Lord!

This disorder is hard to live with – its hard to deal with. I went to sleep last night knowing her daddy was taking care of her, and also knowing the reality that something could happen and the next time I see her, she’ll be gone. And yet, I still go to sleep, and I wake up to face another day.

Our life is beautiful. It is chaotic, it is intense – but we have so many good moments. Paige is a joy – she is a strength. She teaches me more and more every day. She just will never be, recovered.