Day after day I sit here and wait for our day to be freed from this hospital living. However, as I sit here, I'm constantly reminded how precious life is and how my perspective has changed. Our room has a view of where the Life Flight helicopters land. It's a glaring visual on how one minute life can be about whether or not to make meatloaf for dinner, and in an instant - say some idiot is texting while driving, and the next thing you know, life is dangling on a string. Life is full of hopes and dreams, and any good parent wants the best for their children -- it's every parent's nightmare to end up here. And here we sit, working toward our fourth month of hospital living, I suppose I'm immune to what we face. However, every time that helicopter lands, I am reminded to do a gut check of what's important to me, what I exert my energy on, and what tedious crap can I let go of... live simply and live well. Make use of the time I have, and be good to myself, my family & friends and make a difference wherever I can.
A few months ago, we determined that we would work toward drawing attention to Charge Syndrome, and give back to the medical community wherever we can. I will be compiling a list of places or organizations that can benefit from what Andi's faced, or has helped us out in some way or other. If you want to donate on behalf of the Bean, great. If not, that's cool too. Like I've stated before, giving the gift of blood is a great place to start, and it doesn't cost money. Donate time. Donate books. Donate clothes. Blankets. I found in the PICU that they don't use wipe warmers, because they don't have the funding for that - as their money is better spent on things like oh, oxygen. Not that wipe warmers are really needed, they're not, but to a kid who has been through seven layers of hell, a warm wipe as opposed to a cold one, I would think that would be a little more pleasant. I am finding that living here these past several months, there are certainly places that can always use donations. I came in today, and the nurse was putting Andi in a zip-up onesie, because she was cold. I took all her clothes home, because honestly, she hasn't worn clothes since early August. So, Andi is wearing a hospital outfit. It's cute and she has one just like it at home. I'm sure they can always use more...especially with all the washings their stuff goes through. We feel it makes sense to not only share our experience, but to highlight where we can to somehow help others. Don't roll your eyes, we can seriously use some good karma 'round here at the hospital. In the meantime, another helicopter lands, another life hangs in the balance. Is it meatloaf night at your house, or are you going to call a long lost friend? Although, if you're having meatloaf, can I come over? :0)