This morning I was putting dishes away in the kitchen when I heard a little song I hadn't heard in years. Pop Goes the Weasel was very slowly playing in the family room and it brought me to tears. We have a jack-in-the-box that plays this song when you turn the handle. In the days when I was holding onto the idea that Emmy was going to be fine, I would watch her use her hands to turn the crank on the side of this toy. Her hands worked so well. She would turn it over and over with such purpose. She loved seeing the monkey pop up at the end and she loved the song.
I walked into the family room to see Emmy staring at Olivia playing with this toy and you know what...it really pissed me off. I know anger is a stage in the grieving process. This grieving process that I experience over and over and over again to varying degrees. I don't know when it will hit or what will make me feel despair but it never seems to completely go away. I prayed and prayed and prayed. I know pleading with God is another stage in the grieving process. As I watched her body fail her, my prayers turned from pleading to all out begging. And finally, they've changed to prayers for peace and happiness and strength for her to endure what she must day in and day out. People suffer. All over the world. In many different circumstances. I know this is part of life. But I can't help but feel there is something unique to Emmy's, and all Rett girls' suffering. The only time they experience relief from the constant movement, hand wringing, inability to breathe, shakiness, frustration in not being able to communicate and the other lovely things they experience daily, is when they're sleeping, and sometimes not even then. And this goes on. As a parent, you can become slightly numb to this because you must continue to care for them the best you can, but wow. Really? It's exhausting just watching her little body in action. I can not even begin to imagine what it's like to experience it every waking moment of every day.
So many, including myself, talk about all we've learned from Emmy. How her presence in this world has changed many for the better. But the question I'm left with, as her mother, is "What about her?" It's great WE are enlightened but WHAT ABOUT HER? In school, when they talk about 'community helpers', what is going through her mind? Is she thinking, yes, one day I'd like to be a teacher too? We've been trained to think that the only people useful in society are those who are able to put on their work hats and contribute to the whole. Those who pull themselves up by their boot straps and make something of themselves. It is this, the capitalistic society we live in that has the tendency to forget about those who have the most important jobs. The job of changing the human spirit.
Never in my life have I felt God's presence like I do now and yet we haven't been to church in a while. We took the girls to Catholic mass every Sunday. People gave warm smiles to the sweet little girls sitting nicely with their parents. Once Emmy started regressing, those warm smiles turned to cold hard stares. It was as if they had cartoon bubbles over their heads. Their thoughts were very transparent. It's these times when I wish I could hand them a purple card and walk away but you know what...you need two hands to dig through your purse to get the purple cards out. You also need two hands to hold your flailing child so she doesn't hurt herself or anybody around her. The fits have gotten so much better now that she's on the beta blockers so maybe one day we will have the courage to try again. One day.
I've done enough praying, reading and contemplating to know that I don't know. Nobody on Earth that I turn to for an answer will be able to give me one. What I do know is that it is in your faith that you will find comfort.
Thursday, May 23, 2013
There have been many times in the last two years that I've wished I didn't have to explain the horrifics of Rett Syndrome in front of Emmy. I try and watch what I say in front of her but it is kind of hard to explain in a sunshiney way. Let's face it. It's not a sunshiney disease. Thankfully,
Girl Power 2 Cure came up with an answer. This organization creates 'Purple Cards' families can hand out to give people info without having to launch into a big explanation. I started her bio page, sent a picture and changed up the wording on the card a bit, and they sent me these beautiful cards...