I often think about the other parents. The ones who are in intensive care wards, or in the “bad news room” at the hospital awaiting results. The ones who are sitting next to incubators, who pray, who hope, who despair. We were them once.
I had so many questions then. Not medical questions – questions for my future self. And, I expected every answer would filled with more misery than the next.
Fast forward 2 1/2 years. How would I answer the questions of the woman I was?
Question from me 2009: Does life suck?
Answer from me 2011: No.
Question: But, surely it does and you are just covering it up to make me feel better.
Me: No, I’m not. Everything takes longer. I worry more about the future. I will never feel “grateful” for May’s brain damage. But, that doesn’t mean I hate my life. I love my life. I love my daughter.
Question: I know you are lying to me. What about her seizures? She has over 100 a day.
Me: They stopped. That was a major challenge, but we tried out various medications and got them down to almost non-existent.
Challenging, but not without its pleasures.
Question: Well, that sounds good, but she still can’t sit. Or, feed herself. Or, speak.
Me: Yes. I hate all that. But, I don’t let it eat away at me. I can’t. I focus on helping May become as independent as she can. I try to focus on what she can do rather than what she can’t.
Question: Oh, come on. Don’t you want to run-away or scream or anything but not have this be your life?
Me: My life has changed. It is definitely different than I imagined. But, the worst moments all happened when she was still at the hospital. After we left that behind, the only way was up. It never got that bad again. That’s the truth. When we were told of May’s injuries it was a blinding, desolation of my emotions I have never felt since.
Question: Are you sure you don’t wish every day that this never happened?
Me: I do. I would literally give of my body if it would cure her – anything to erase May’s injury and make her whole. It’s hard to watch her struggle to do what comes naturally to the rest of us. But, mainly I worry about her future when we aren’t around. But, here’s something to think about: almost everything I worry about, May doesn’t. She doesn’t even understand that there is anything wrong with her.
Question: But, you must look at her and know she will amount to nothing.
Me: I can’t wait for you to see everything May can do. Watch her Olympic level bouncing to see even a sliver of the joy she has brought into our lives. Society rates success on money and degrees and titles. And, okay, she won’t achieve those. But, how many of us can say that we made a member of our family smile every day? Is that nothing?
Until you live with May every day, you will not understand how proud of her we are – how her most minor achievements astound us. It is simply not possible to love her more than we do.
There is much pleasure, love and silly songs in your future.
I really wish I had known that then.
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