A Stanley Cup for the Bruins — but we’re celebrating another victory.

Today, thousands of hockey fans are celebrating the victory of the Boston Bruins over the Vancouver Canucks to win their first Stanley Cup in nearly forty years. There will be parties and parades and champagne and beer and music and applause and speeches and smiles.  Today, Boston hockey fans celebrate a huge victory.

Here, in my world, we are also celebrating a victory.  We won’t have parades or beer or speeches, and while there is always music and a whole lot of smiling, we aren’t doing anythingspecial.  In fact, it might be that no one in my family but me is thinking about this milestone — surviving the first year of life with diabetes.

Last June, Mitzi was recovering from her week-long hospital stay,  and we were all adjusting to the news that our world had changed forever.

It’s funny.  It occurs to me that I haven’t really written anything about what it’s been like the past year.  I thought it, writing about our new normal, from time to time, but never did.  Perhaps it was because I didn’t want to be a writer who could only write about her child’s illness.  Perhaps it was because my child and her illness was pretty much all I thought about every day — whether in the front or back of my mind, it was always there.  And because of that, when I sat down at the computer, perhaps writing was my escape.

Perhaps I was just grieving.

All parents have hopes and expectations for their children — I don’t mean the dreams-of-Harvard-or-sports-star variety, necessarily.  We hope that they will be happy and healthy, and survive adolescence relatively unscathed, and become happy, healthy, honorable adults.  Stuff like that.  And when you are suddenly informed that your child has an illness or a disability, your world shifts.  Your future shifts.  And you must shift with it.  For parents — unlike kids, who adjust far more quickly — that means grieving and letting go of whatever expectations you had.

We make new ones, of course, and certainly a diagnosis of diabetes is not as severe or shocking as another diagnosis would have been.  But life has changed.  My child will face challenges every day that before simply did not exist.  And as the parent, I have to not only deal with the challenges with my child, I have to help her learn to deal with them on her own, too.

So, the first the shock, then the grief over the loss of a future you expected.  And all of Kubler-Ross’s stages of grief likely follow:  the anger, denial, depression.  I think that this is where my mind has been, even though you wouldn’t have seen it, to look at me and talk with me and watch me do my motherly thing to keep my kid healthy and be an equally good mom to the other kids as well.

But, yes, I have been angry — at God, the universe, the injustice, no one in particular.  Angry because there’s actually no one to blame, and for crying out loud, if I could find someone to blame, I could find a solution (or at least something to punch).  Angry with that feeling of helplessness, my inability to change anything, which is just about the darkest pit a parent can visit.  Angry that I had to visit that dark pit of helplessness and still find a way to smile and love and be a good mom and wife.

Angry?  Yup.  Not always, but sure, sometimes it spurted out of me at odd moments, for no obvious reason.  Denial?  Well, it’s kind of hard to deny the obvious, especially when you have to constantly watch what your kid eats and give her a bunch of shots every day.  But maybe denial in the form of not really talking about much, and by not talking about it much, maybe denying that it was basically the focus of our family.

Depression?  Sure.  Living with the diagnosis is exhausting.  Thinking about it all the time is exhausting.  Riding the roller coaster of blood sugar levels — the way they change swiftly, unpredictably, shockingly — is exhausting.  Some days I was just.  So.  Tired.  Sleep was good.  Awake was bad.  Depression?  Yes, some.  Not every day, not all the time, but it was there.

And here we are today, a year later.  Acceptance?  I suppose.  I’m not angry any more — okay, I have my moments of frustration, particularly over the last month since Mitzi started her insulin pump, which was a new learning curve, almost like starting over.  But I’ve accepted life as it is.  I’m still exhausted.  I still get sad that Mitzi has to call me from school to see if she can have a cookie for a friend’s birthday, sad that the school nurse emails me throughout the day with blood sugar numbers, sad that the diabetes adds an annoying complication to my daughter’s childhood, just as she is starting to knock on the door of puberty (behind which is a whole host of new and foreign complications, also known as The Teen Years).

Sometimes I just wish that she could be like every other kid, footloose and fancy free.

And in a way, she is.  Over the past year, Mitzi has at times been annoyed, frustrated, angry, sad, and just moody about having diabetes — but mostly she is just the same smiling, ultra-creative, independent, first-born-bossy, mega-Harry Potter-fan self.  Having diabetes is just another part of her, like her freckles and big feet and great blue eyes.

She recently told me that it was hard for her to remember what it was like Before.

That’s really what matters, of course.  The time of Before has pretty much ceased to exist for Mitzi, who is young enough, resilient enough, to only know how to live in the Now.  Her aspirations and dreams remain what they are — there is nothing she cannot do! — and will continue to grow with her.  For her, there is no grief, only hope.  And that helps me leave the grief behind and find acceptance.

So today I celebrate this milestone, quietly, to myself, because it’s a good one.  We survived.  We got to the other side where our future is spread before us.

It’s not a bad view, at all.

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7 thoughts on “A Stanley Cup for the Bruins — but we’re celebrating another victory.

  1. A major mile stone indeed. You and Ray have travelled a long , hard road this past year and should be happy that you came through this ‘bump” with flying colors.

    Acceptance is the key to happiness. Every day , in everything one does, acceptance is needed. I have found out that there is little in my world that I can control. It took a long , long time to understand this fact of life. Today I try to go with the flow and accept what comes my way. Life isn’t always fun or easy. Curve balls come at me and some I hit and some hit me. But I do the best I can to carry on.

    Mitzi is an inspiration to me. To have the courage to be a normal kid and live with her illness makes my problems small in comparision.She will be fine. She has awesome parents and sibs that love and support her.

    So Jen, celabrate with ballons, songs and wine. Enjoy each day you have and remember that there is only so much you can do to help your first born. You’ve done so much already and Mitzi is strong and independent because of it.

    Happy New Year!

  2. Jen, as a mom of a kid with Asperger’s, ADHD, and Bipolar (just to name the big ones), I can totally relate to your year. When Hugh was first diagnosed with Asperger’s at 4, we grieved for a long time. I used to watch videos of him in the Before phase (as a 20 month old) and tortured myself with that happy, smiling, kooky kid. I missed him.
    But none of his diagnoses is a death sentence, so like you we learned to deal. It’s a lot, no doubt, but we learn every day about more and more people with these diagnoses who are hugely successful and/or content (one and the same to my mind, but sadly not to today’s society).
    Mitzi makes you a better mom, not just to her but also to your other kids and to other parents’ kids to by giving you new perspective and care for the human condition.
    Love you!!!
    Barbro

  3. jen, beautiful post. yes, it has been tough but mitzi has proved even tougher. the thing that is the hardest is that you as her mother wish that you could take this on yourself…..i know because i would give anything to lift this from mitzi, from you…..i have waited days to comment and still cannot find the words to say what’s in my heart…….xo

  4. It seems insensitive to say that I “like” this post, but I love the true honesty and tangible humanity that shoots through this…..Words from the heart.

    Love you all! xoxo

  5. your post touched my heart in ways you have no idea. I don’t say much in that regard, however, I have felt your pain from the very beginning. I think about mitzi often, wondering how she is doing. I know she is going to be ok, thanks to you as a very caring and devoted mother. I have learned that what you cannot control, one has to except what life hands us. For you though, things will only get better from here on end. I admire you for your strength and courage. love to all. patricia

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