I was walking down to get a salad for dinner this evening. I had my iPod on, listening to music the only way I get to these days. It was mildly chilly, yet there was no rain and for that I was immensely grateful. I turned onto SE 21st, heading towards Pastini, when I looked down and saw a used syringe lying on the sidewalk. The needle was still intact.
I was appalled.
I was appalled that it was lying there, lying where any number of children could curiously pick it up. I was appalled that it was lying there where some unsuspecting person could step on it. It bothered me so immensely, so intensely that hours later, I still can not let it go.
I wanted to pick it up and dispose of it, and then I didn't. I didn't want to touch it. I didn't know where it had been. I didn't have anything to put it in. I could see myself wandering along with a used, dirty syringe in hand, tripping and sticking myself. This is something that would happen to me these days. I am not very graceful, of late.
So, I left it there and I cannot forget it.
It started me thinking about the huge sharps container filled to the brim in the closet of our guest bedroom, filled to the brim with used insulin needles... insulin needles I used to inject epogen into Max for 2.5 years. It reminded me that learning to give very tiny, infant son subcutaneous injections was just another one of a long, long line of things I have had to learn to do, things I have had to learn to overcome.
I've been in a reflective state of mind lately. Two weeks ago, I was asked to come and speak to our undergraduate nursing students in their chronic illness course. The topic: families and chronic illness... how does a family deal when a child is chronically ill?
I said yes, of course. If you know me at all, you know I am more than willing to explain what I know about chronic kidney disease. If you know me at all, you know I am happy to explain what our life is like. I look at it as raising awareness. My hope is always that it will help people in some way. Help them to understand. Provide them with an insight into illness, into dealing with health issues, with stress, with the pain of knowing your child is different, is sick...
In this instance, it provides a unique opportunity to speak with students, students of which probably at least one, could someday be providing care for Max. It has happened already. Countless former and present students of ours have been Max's nurses. From the very beginning... from the NICU days, students I saw go through our program, were responsible for Max, from his preterm, neonate beginnings to the awful peritonitis stay, from the transplant to our recent multiple BK hospital stays. The nurses our program turns out, may someday be in charge of Max.
I look at this as a gift and an enormous responsibility.
I was told not to prepare for this, that it is better if I do not.
But I ask you, how can you not?
What I have been doing is reflecting in my mind. Reflecting on the last three and a half years, from that moment when we found out all was not right in utero, to now. 3.5 years in the life of Max is an incredibly long, incredibly detailed time. It is one filled with tremendous highs and horrible lows. It is filled with elation and overwhelming fear, with strength and an incredible sense of powerlessness, with victory and devastation.
I have one hour to talk about it. And yet.... how can you reduce the last 3.5 years to one hours worth of time?
I suppose I'll let my own self guide the discussion.
But reflecting on this has caused me to, once again, resurrect the idea of writing a book about this incredible journey we are on.
And for the first time in a very long time, I feel a sense of excitement about that idea...
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