Saturday, June 1, 2013

The Importance of Anniversaries

It's June 1. The school year is finally over. The mad rush is dying down- as much as it ever does in a household with 4 kids. I was in the midst of making dinner one night this week when I hear the fedex truck pull up. At the end of last week- during Phillip's 8th grade ceremony- all of the 8th grader's bags were unceremoniously dumped in a back room. When Phillip returned home- his glucometer was missing. We went over" the last place you know you had it drill"-lunch. Being the astute mom- are you absolutely positive you took your blood sugar at lunch? Yes. I mean it- if you didn't we'll talk about that later- MOM, I DID! Ok. Back to school to check- nothing. Tore up the house. Nothing. Time to dig into the emergency kit and break out the old glucometer. This just also happens a day after I get a call from the Pump/glucometer distributor saying that they are no longer contracted with our insurance. That makes sense since we are no longer contracted with our insurance- the military switched providers. I give them the new information- nope not contracted with them either. A day spent making various calls ending in - we'll get back to you.

So our endo nurse- who is just a beautiful, wonderful angel. She is truly one of those people who you call when shit hits the fan and she throws glitter at it, sprays the air freshener and helps you get done what needs to be done, making your life easier. She finds me a number of the manufacturer and says give this a try. I try. They are nice and unconcerned with the insurance as we are allowed a one time replacement for loss or theft and we have not used it yet. She apologizes that it won't be delivered the next day- but probably in 2 days.

So when the fedex truck rolls up- I'm thinking- dang- she made it happen in a day. Lily comes to the back yard carrying a big square box. I just put the chicken on the grill, the weather has finally changed and it's too hot to cook inside.  I know it's not his glucometer- because the box is too big and the glucometer would have had to been signed for. It's a package from my mom. Lily is literally vibrating. We go inside and open the box. Inside are 2 scrapbooks- one Jen and Dad themed and one Jen and Bob themed. I have been asking for photos for years and I am excited to look.  I start to flip through Dad's album. I feel the gaping hole in my heart which always feels a little extra gapey in May, start to fill in a little. Memories of day to day fun, special trips, pieces of a happy past when I was a kid and carefree and the possibilities were endless. There are a couple goofy pictures AD- after diagnosis- and I remember the great talks dad and I had during the last few months. Smoke pulls me from my reverie and I run outside to flip the chicken. The grill marks are a little heartier than the kids like- but it will be fine.

Lily has been patiently waiting. I let her look through dad's album with the instructions that- I can't answer questions now- I'm making dinner but we will go through the album together after dinner. Being the pragmatic child she is- she waits and merely looks over my shoulder- she and I both know she will have lots and lots of questions. I want to be able to answer them. In that way, these albums are an extra special gift. It gives me jumping off points to share my past and their grandpa and uncle with them. I flip through Bob's album. Lily sneaks off as- there are already so many questions she wants to ask.  There is a copy of a "Bob's future" paragraph that he had to write for a class. It talked about lamborghinis, so I call Phillip to read it- since he shares his uncles love of the car. I told him awhile back that Bob used to have posters all over his room, I doubt he remembers. He is reading while I am flipping through pages and Lily is looking on. I get to the second to last picture. It was my birthday, 2 months before Bob died. We were in his hospital room, he is swollen severely from steroids that ironically are keeping the swelling in his brain down. I remember mom telling me the story about how adamant he was that he go get me a birthday present and how hard it was to get him down to the gift shop and how he struggled with the choices. It was a little porcelain unicorn with a gold horn. And like that my heart bursts and shatters as the memories of love and loss break through the walls I set up to get through each day. The days past causing chips and gauges every time someone asks- do you have siblings? Watching lil Phillip do so many of the same things Bob used to love, with his big dreams and big heart. The tears come with gasps and sobs. Phillip hugs me and takes out the trash. It's the only thing he knows to do that might help. Kiera peeks to see the commotion and quietly retreats- she's not comfortable with too much emotion. I distract  myself with dinner- trying to salvage what's left of burnt chicken.

I think it's important to feel the loss. It is present every day for me. It used to be that every time I went near a hospital- I felt that loss- but now it's become such our routine- I just feel the exhaustion. Such is mending. It's work. I don't watch sad movies. I can't. I've felt so much sadness- I can not elect to go back to that place for entertainment. I don't need to. The anger pops up at times, and I work hard to direct that towards making positive change. A few years ago a friend's daughter died in May. Her death sandwiched between the anniversaries of Bob and Dad's death. I talked to Phil. We were still relatively new here, I didn't have a lot of friends and this lady was someone I could relate to.  I could not possibly go to a baby's funeral in May. It would be hugely inappropriate for me to take my grief out in public at a child's memorial. It was not fair to anyone.  He would have to go and explain. Of course. My friend understood. We are better friends now. She is one of the few people here that understands what it is like to care for a sick child and she has endured a loss I hope everyday that I am spared. As a mom now, I am offered a glimpse of the torture my mother went through watching my brother get sicker and sicker. When your child is injured or diagnosed with a life threatening illness- you try to prepare yourself for the eventuality. I am convinced that there is no way to ever be prepared for that loss. So I try to go easy on my mom- when she niggles me about cancer screening on Mother's Day- as I am her baby and she is still doing everything she can to stave off that eventuality.

But the memorial anniversaries are important. It gives us a window to feel the pain and loss with a contained limit, staving off consumption. It gives us an opportunity to remember the good times, the life, the love. It also gives us a distinct time frame to feel it and the opportunity to contain it once again and put it away so that it cannot consume you. It truly is the stuff fairy tales and ghost stories are made of. Human emotion, fear, loss, love, strength. Once a year, the time when the demons are allowed to roam free until they are vanquished to the underworld so everyone can carry about normally.

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Lily Kay Monkey

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