Sunday, August 11, 2013

All About Me

As the first full week of school came to a close, 2 kids came home with weekend assignments. Now of course it wouldn't be the Princess or the Pig Pen who have no problems discussing themselves- it had to be the high schooler and the monkey. The 2 very children I spent the better part of the week culminating and relaying medical information on. I let them take the reigns.

Phillip wrote a list of pictures he required and handed me a thumb drive. He then sat behind me and vetoed photos that I paused on for more than 2 seconds. Ultimately I am lucky that our sense of humor is the same and got some bonus mileage out of about 3 wax museum pictures and a particularly endearing shot of him playing Adele's Someone Like you on his baby cousin's Fisher Price Piano for his section about the role of music in his life...
He would periodically ask me questions- I'm pretty sure just to gauge my "adult" response.  Hey what are those finger pricker thingies called? Oh dear God please tell me you know they are called Lancets? Knowing teen smile... So you are going to talk about diabetes? The guilt still hasn't settled that I have yet to actually speak to a human at his school regarding his diabetes or it's management. I am actually relieved that he is willing to increase the awareness in his immediate setting. Well I figure maybe I can talk about all the stuff I have to do, maybe I'll get a good grade- you know maybe the teacher will have sympathy for me.  My head begins to roll- I am mid lecture about pity and responsiblity in life when I turn to glare increduously at the teen whose main threat to livelihood right now is in fact me and not a faulty pancreas. He's got that same smirk and apparently his dad's same amusement in getting me riled up. You know how I feel about that?? Smirk.

Diabetes is a main part of his life- it affects his sleep, his emotions, it hovers and follows every meal or lack there of- it needs to be considered before exercise- and after, sometimes for days- stress affects it- hormones affect it-food affects it- it is part of him. I wish it wasn't. I wish his life was easier- because I know for sure it doesn't get easier than this. But I feel better that he has come to terms with it and accepted it as part of his life. It is as much a part of him as sports and family and parkour, apparently, which gets a full bullet in the presentation, by the way.  Hey you know that massive rock I scaled at Yosemite? You mean the one that caused this gray hair or this one?  You got a picture right? No, no I did not. I have learned in my 13 years of parenting that any time you hear- hey guys watch this- photographic evidence could probably be used in court for a case of negligent parenting- so no. Aw man- do you at least have one of me ON a big rock. Yes, yes I do. I just leave out the ones of you smacking into it like Peter Parker trying to figure out the whole web slinging thing. I didn't see the final product- I was not allowed- trying to let squirt go- but I am somewhat amused and worried that his plan for a presentation opener is - This is my family and we have an important relationship with Pooh.
I swear to God I almost didn't laugh. Almost.

Lily wanted more guidance- she needed pictures. We sat down Saturday morning and got to it. 4 HOURS later- I printed the last page. So if the point of the assignment was to give parents and children quality time together reminiscing the finer and not so finer times over the past 8 years- we crushed it! If the point was to give parents an idea of how their child views their history- I got it. And the piece de resistance- writing a 100% positive letter to your child about who they are and how much you love them with the tiny requirement of letting them know they should do well in school- well that's the kicker. I can easily be positive. 100% positive. Well I am 100%positive I COULD be 100% positive.  In our uncertain world- what things could I be 100% positive about? I can be 100% positive about my love and pride in Lily- in all of my children. Of all that I've learned over these years of trials and tribulations and temporary normals and new normals- is that I 100% love my children. I am not always 100% happy about their choices or behavior or decisions- but all of those really reflect my not 100% happiness with my own parenting and my own character flaws so I tend to try and go easy on all of us there.

 So when the angelic little monkey asks if it would be Ok to put cancer pictures in her timeline, I am forced again to look at a very painful time in our lives and accept that it is a very real part of who she is. She may not remember the throwing up- she doesn't thankfully- and the hair loss and various side effects and trauma memories have started to disappear for her. I am grateful. I know they left indelible scars on her psyche, but I am somewhat relieved when I hear that she has forgotten yet another major part of that horrific journey. I remember my mom telling us story after story from when we were tiny- so much that when paired with pictures, they have become part of my memory. This is a time I do not feel compelled to remind her. So as we take a trip down that memory lane- I swear to God I almost didn't cry. Almost.

She chose a picture from a time I remember vividly. A time when the Iv's came home with us and she had yet to get a G-tube and I could just see her little body wasting away.  In her 3 year old world, she was trying to process the needles the pain and Baby Pooh- a miniature version of her beloved Pooh- got to be the guinea pig. He was poked and injected and taped up and bandaged as we all tried so hard to come to grips with all the Poo that had been dealt to her. She told me she does not remember being in the picture, but she knows how Pooh felt in the picture. She said it showed her scars and her tubes and she had no hair. That's what she remembers. I hope someday that's all she remembers or merely the memories of us telling her about it.  We finally moved on to firsts- walking- riding a bike and all the dances and sports she has done since. It still feels like cancer takes up more space than it should. Yet it takes up space and it will continue to do so- I cannot gloss over it just because I wish it were different. In the infinite wisdom of youth- my children- even though it doesn't make me 100% happy-often remind me of the important truths in life. You are who you are. Cancer is a part of us. Only some of the scars are visible. It's ok to cover them up and it's ok to let people in to know that our journey has been tough and no, we aren't remotely "in remission".  It is part of who we are. It doesn't make us who we are- we become who we are in spite of it. So I sat down, tissue at the ready to write her an age appropriate- 100% positive letter. The part I was dreading was actually the easiest. Funny how that happens.
And in the end- I realized what the Freshman said in the beginning- This is my family and we DO have an important relationship with Pooh. We just work around that.

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)