Taking the news: The One When I Get All Pi$$ED OFF

May 30, 2012By 16 Comments

 

My family. We're absolutely fine -- but let diabetes end here.

I spent and lot of time here talking about how amazing life can be despite diabetes; how the burden of this disease – as unimaginably heavy it is – does not have to stop you from savoring life.

But sometimes, it just stops me cold. It shocks my soul. It, well, it pi$$es me off. Big time. This past weekend was one of those times. I’m still coming to terms with some news, and while I want to be all “Oh this will be fine,” I’ll be frank: I’m so very, very angry.

I won’t share names here, so bear with me as I tell the tale using some generalities (to protect the privacy of my friends, who are still dealing with all this).

First of all, I have this weird problem. I try to suppress it, but every time one of my friend’s kids has a baby (and yes, we are at that age: one by one, my good friends whom I still play tennis with, sail with, sometimes drink too much with, laugh with and generally act the same way we did when we were teenagers with, are all becoming grandparents) – anyway any time one of them welcomes a beautiful grandchild into their life, I am one of the first to celebrate. I dash to our cute downtown area and buy an adorable gift to drop off. I stare at the delicious pics on facebook. I imagine one day holding my own grandchild. That’s all normal.

Here’s what’s not normal: every single time; every single time, way down in my mind and my heart I think this:

Please, don’t ever let it be them.

 You know what I’m talking about. Don’t ever let it be them. Don’t let that mom or grandparent or child know what it’s like to take on the challenge of learning to have an amazing life despite diabetes. Don’t let that mom do that first finger prick or needle injection on her own child thinking, “I shouldn’t be hurting her.” Don’t let that grandparent have to practically earn a medical degree to watch her own grandchild. Don’t let it happen. Now, I would never, ever say those words aloud. First of all, there’s this weird superstition in me too: don’t ever say it because that might help it happen. Second, that’s just mean. Every child is born to live a perfect life. Just because my child got a shorter stick in some ways does not mean I should even hint that there would ever be that possibility with another child.

And yeah, we all know: Type 1 Diabetes is rare. Really, “Only” about 1 in every 500 or 600 kids get it (those stats are not perfect; our nation has done a lousy job of tracking T1D incidences but that’s another blog for another day). So it’s safe to think that your friends’ kids are not going to be developing T1D. (Although it does happen).

Here’s the strange part of my strange problem: the only time I don’t have that terrible fear run through my head is when a young woman with Type 1 Diabetes I know has a child. When that happens, I’m all “This is a miracle!” And “You guy are rock stars!” and “See! It’s done and done so well!” I honestly never, ever think the “please don’t let it be them” thing. Because that would just be too unfair. The universe would never allow that. Right?

So that’s the back story, and sorry for the time it took. Now to the story.

I have a D-family that is very special to me. The mom is the very first D-Mom I ever met (before anyone knew that term). When my Lauren was diagnosed, a teacher in her school got in touch with this mom and asked her to help me. And for 15 years, she has. Since her girls (she has two with T1D) are a few years older than my Lauren, they’ve been my “proof.” Worried about transitioning to middle school? Saw them do it with style. Concerned about how my girl would juggle being an active high schooler and her diabetes? Like my Lauren, this family’s girls were active, popular, funny, in the middle of everything and yes, not perfect with their diabetes care. Send a girl far away to college with diabetes? Watched them do it and master it. Burn out and then bounce back? Yep – this family is one of the only ones to admit an a1c to me that made me realize my child was not alone. And then show me that you could turn it around. What a gift to Lauren and to me.

So last year, when I bumped into this D-Mom at a local watering hole (did I mention she also happens to be fabulously good-looking, wicked funny and fun to hang out with?) she reached into her purse, pulled out a picture of an amazing baby and just held it out to me. Wordless, we both BURST into tears and hugged one another. I think we might have jumped up and down. Some guy in the bar next to use said, “Man, you two are really into babies!” He had absolutely no idea.

Our role model had just forayed well into another wonderful part of life despite diabetes.

Fast forward to last weekend. I’d chatted with the D-Mom recently (we don’t talk all the time, but never a day goes by I don’t think of her and her family), and she’d told me to ride on behalf of her two girls as well (and made a huge donation to boot). It made me smile to think of her wonderful time as a grandmother who looks like a co-ed, and it was good to think back on all she has given me in life.

Sunday morning I was in Ottawa for my husband to run a marathon. I went out on a long, long bike ride (training, always training for that 105 miles in Death Valley). When I got back to the hotel room I looked at my phone. Message.

From that D-Mom, and just a few words, but more than I could almost fathom:

“Now you’ll be riding for (BABY NAME) too.”

That was all she wrote.

My worst fear; my secret worry I’d never share, had happened in the one place I was sure it never would: in a family that already has this burden.

Now hold off your “oh but they already know how to deal with this!” and “Mom and daughter will share this!” Baloney. This is, quite simply, a tragedy.

We never lose hope in this D World. We face down demons as vague as uncontrolled blood sugars and as visual as hostile, untrained insurance reps. We juggle more than most can imagine just to make things “normal.” We tell our children, over and over and over, “It’s fine.” Until we almost really believe it.

And kids who grow up with diabetes will tell you, for the most part, it is fine. Parents suffer and worry and stress way more than kids do, kids say (although I’m pretty sure that’s just them doing a durn good job at living despite diabetes, as we’ve worked so hard to teach them. It’s a fine balance of hard work and denial.)

But to become a mother of a small child (this child is not even near two years old yet. A baby still), while adjusting to being a mother with T1D yourself?

I’m sorry. It’s unimaginably horrible.

So where will it all go from here? I know this family. They will rock it like Springsteen at an arena concern. The D-Mom will be the best D-Mom role model one could ever be for her daughter. The daughter, now a D-Mom herself, will build a life for her little princess that’s charming and fun and silly and beautiful, all despite diabetes. And I’ll watch on, as always, in awe and with great humility at their strength.

This baby, this new mommy, her daddy, her new aunties, this new grandma and grandpa will absolutely live long, amazing lives despite their multiple layers of diabetes.

But I want it done. I want it over. Imagine a world when not one more child is ever diagnosed? Even with my own child deep into life with diabetes, I’d consider that Nobel Prize worthy.

All these babies, All this future. And I just don’t ever want to think it again.

Please don’t let it be them.

 

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Comments (16)

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  1. Robin says:

    I’m so sorry. Hugs to you all and I’m sure they will rock it like Springsteen. Although they shouldn’t have to. It’s just not fair. :(

  2. Paula Fairchild says:

    you did it again, my amazing friend.. my mentor, my role model, fellow D mom.. career woman, D-world supporter… you took the very words from the depths of my being… Why? Because my D sister, mom of 3, faces this fear every day, every time a child gets sick.. please don’t let it be diabetes… and when suddenly, it was MY child with the diagnosis, that fear became even more prominent for her.. “if it can happen to my niece, whose momma does not have t1d, then oh no… could it happen to one of mine?”
    I’m so sorry to hear of yet another diagnosis, and my prayers go out to them. But I am so thankful for you…. to know that you will continue to be a voice for them, for me, for the D community, so that no one ever forgets what it’s like to live despite diabetes, and so than no one ever ever ever forgets why we need a cure. Much love my friend!

  3. Katie Clark says:

    The only words that made sense to my husband & I after our oldest daughter was diagnosed was: ‘that sucks’. I wanted to scream at all the well-meaning people who said things like “she’s lucky to have a mom who understands”, “you are so lucky to know diabetes”. SHUT UP, SHUT UP, SHUT UP. It’s not ok. She wasn’t lucky and I was mad.

    Wishing the best for your friend, her daughter(s) and her grand-daughter. We know they’ll get through it. That little girl will have the strength of wonderful women in her life when D makes it tough. But, it just sucks.

    • Moira says:

      I knew you when you were screaming that (and used you big time to make things happen in DC!) You know you guys are my heroes — even if I only usually say that about Steve!

      • Cie says:

        I joined Juvenation at the rmanmeeodction of a lady I spoke to today at JDRF. I was just wandering around and reading and came across a comment of yours and saw your picture and thought that you looked familiar. So I clicked on your blog link and SURPRISE! I was just reading your blog yesterday! My son is five and was dx’d on Dec 17. It’s all very new. I started a blog about two weeks ago for therapudic reasons and basically just journaling our life. It’s not informative and educational like yours and so many others. It too is in its baby stage. But anyway, just thought I’d connect as my surfing and looking for connections has brought me to you two days in a row. Great post today. I didn’t even know about today, but I will from here on out for the rest of Ryan’s life!

  4. Krista Middleton says:

    I have been debating sending my comment for quite a while. I read the post as soon as it was posted and finally decided to hit the “submit” button…just my personal opinion/feelings….

    Its so weird for those of us who live with diabetes. Maybe its just me, but pregnancy seemed like something that would never happen. I dreamed about being a mom mywhole life. I was told by my doctors when I was little that diabetics couldn’t have babies. I BELIEVED THEM. I thought I could never have my own. My mom got really sick after college. Doctors mis-diagnosed her with cancer and said it was bad. It WAS bad, but it wasn’t cancer. Nick and I had been engaged and living together for years at this point and said “its time to do the quickie weddiing and give her a grand-baby before she’s gone.” It took 3 days to do both. I was pregnant first time we tried. I found out while Mom was still in the hospital a few weeks later. Here’s the point of my story: being a diabetic my whole life believing we couldn’t have kids makes us a little different. When people without this disease get pregnant they say “we don’t care what is is as long as its healthy.” As a diabetic I didn’t say that. I said “it doeesn’t matter as long as its alive.” I could deal with anything in this world as long as I had the chance to be a Mom. I could deal with anything that happened. I didn’t want any suffering, don’t get me wrong. BUT for those of us who think babies aren’t possible and then find out that they are, well, we will do ANYTHING that comes with that. Mommyhood for some of us comes with the possibility of having major struggles (diabetes), but if its having a child with it, or having no child at all…well, I had 2 little boys…I risked it and so far I’ve won. But if one of them gets T1d, I will still have won because they are no less of a person, they are still my miracles…

    • Moira says:

      I think that is beautiful. and since this family is a lot like you (smart, brave, face it all and just make life work all while looking great ha ha) I’m thinking they will come to that point too. As an “outsider” I get to be MAD FOR YOU GUYS! Ha …. this baby IS a miracle and I think that every day. I just wish she didn’t have the added layer …. love you Krista!

  5. Regina says:

    Absolutely amazing! The story Moira, as well as all the comments from others. I am currently at the beginning of the marathon to start trying for that baby, the one I was told (and believed) I couldn’t have either. Like Krista said above, I don’t just wish for health, I wish to just have me and my future baby survive the process. As morbid as it all sounds, that’s how we all feel, those of us with diabetes or with childtren with diabetes. And it’s easy for anyone else to say, as you noted, ‘but it would be manageable if your baby got diabetes’. Everything is manageable, technically, but knowing what would be in store for that baby every second of every day for the rest of their lives is as you put, tragic and just sucks. We will, as we always do, in our tight diabetes community, help each other get through it with our words and actions. But at the end of the day, it’s just a crappy card to get dealt and it should be okay to feel that way about it. Thank you as always for saying what we all think but few say out loud. Xo

  6. katie p says:

    So sad..:(…my heart sank. I am not sure on type 1 being ‘rare’ like they say..with 3 in our neighborhood ..

  7. Deanna says:

    Thank you for speaking so honestly. I could totally relate to the part where you said, “oh but they already know how to deal with it” — like that makes it something anyone wants to deal with? Life is still amazing and wonderful, but like you said, it has an extra layer I’d happily give back.

    Thank you! Had me tearing up and laughing at the same time.

    D-Mom to W age 5, dx at 3.

  8. Gigi says:

    wow…there are no words..you write so beautifully…….I felt every raw emotion. Nothing to ad except, it sucks, and YOU, my friend, with all you do and now the RIDE, are going to rock this world into a CURE…I feel that, too…xxoo

  9. Jesica says:

    oh, so beautiful, yet terrible…if that makes any sense?!?! I carry that fear with me every day, every sign, and with every diagnosis near us, I cry. I cry because I know all too well the world they have just been thrown into. So beautifully written, such beautiful thoughts and words. I hate hate hate that T1D just gets to claim our children no matter what we do or how vigilant we are…one day not diagnosed, the next, your world is changed. I want a cure more than anything in the world and to never have another person diagnosed with type 1 diabetes. My heart just sank for that family and for you…and to be honest, my daughter and my 3 non-D children (as we will all carry that fear with us…unitl there is a cure). I worry about our other kids and get that ‘oh but what worse could happen?’ all of the time! You know what worse could happen?…well, T1D could happen. Yes, we live it…but no it will never ever get easier and doesn’t make the daily heart break any more managable if we already are experiencing T1D with one child. To be honest, when we get word of another community diagnosis, I just cry thinking why them? (even when I do not know them, because seriously, why!?!) Tears just streamed down my face. love your postings and the love you have for this beautiful family.

  10. Lisa says:

    This family is a huge part of my life a few years ago my cousin married this wonderful girl and we are all so lucky her and her family become a part of our lives. My daughter was diagnosed at the age of 5 and we have been living with this disease for 4 years now and yes you do say to yourself everyday why? give it to me and not an innocent child it’s a battle we face everyday but we also say we can do this, we have to for her.
    When we heard about the baby I cried and cried hysterically I was angry why another child another innocent beautful little baby and just celebrating her first birthday…I don’t get it. It’s not fair how much more can one family take.
    Together as a family we will fight this disease and we are all there for eachother. Thank you for this beautiful article and caring so much for this beautiful family. I love all of them just as much as you do.

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