Wednesday, March 2, 2011

Why I Grieve Over Diabetes

Roselady over at Diapeepees wrote an interesting post on grief.  I encourage you to read it.

I have written a post on grief before... but I have never reflected on WHY I grieved (and still do) over Diabetes.

For me, the grief didn't come until later.  When Sugar Boy was first diagnosed, I was almost robotic: 

Just LEARN. 

Just DO. 

DON'T THINK!

Sugar Boy was diagnosed in mid-November of 2008.  Two days before Christmas of that year, he woke up low.  REALLY low.  His pancreas, in one last ditch effort, had started fully producing insulin again.  He was able to eat and drink whatever he wanted and he had perfectly normal blood sugars for 7 days.  Then one night, I went in to his room to check him two hours after dinner.  We had kept up the practice of checking BG at regular intervals because our endo had warned us that it wouldn't last.  Of course, we hoped and we prayed that it would.  But our Christmas miracle was not to last.  I walked out of his room, after checking his BG and getting a 224 on the meter.  I didn't look at anyone, not even my husband.  I just handed him the meter and walked away.  I walked straight to our bedroom... selfishly leaving Sugar Daddy to deal with dosing Sugar Boy... and closed the door, fell down on the bed and just sobbed.  I cried until my sides and my throat hurt.  Until I was so exhausted I couldn't move.  At some point Sugar Daddy came in, and he cried with me.  He held me in his arms, and we sat on the bed and rocked each other while the pain ripped through us.  Later after there were no more tears to be had, we stayed there together and just GRIEVED.  It was a moment that I will never forget.  

Part of it was the loss of that perfect child.  My mother snorted when I mentioned that one day.  She just said, "Ha!  No child is perfect."
 
She completely missed the point... but, whatever. 

There was also the grief of the loss of "normal".  You know - the normal that everyone else, who doesn't deal with Diabetes, has.  The normal where you can leave the house and not carry a kit with you which contains a blood glucose testing kit, glucagon, sugar tablets, juice boxes, spare syringes and alcohol wipes… all the things that we may need in order to help keep Sugar Boy alive while we are away from home.  The normal where you can prepare a meal or a snack without measuring and weighing the food, calculating the carbs and considering the fat content and protein level of the food to determine how blood sugars will react when the food enters your child's body.  The normal where you can drop the kids off at school without worrying constantly. The normal where you can go to bed without setting your alarm clock for at least once, maybe twice, sometimes three times during the night when you get up to check and make sure that your child is still safe... that he doesn’t need sugar to bring him up from a low or more insulin to bring him down from a high. The normal where you can wake up in the morning without listening at the baby monitor to make sure that you can hear your child's steady sleep-filled breaths coming over the monitor.   The "normal" that we had been re-introduced to and had a whole new appreciation for during those 7 days of freedom from Diabetes.  The fact is that there is almost nothing that Diabetes doesn't affect in some way.

As I said, I still have days when I grieve.  I still have days, over two years later when it hits me like a ton of bricks that this is our life, and it's not going to change.  I still have days when I want to yell and scream and stomp my feet like a temperamental two-year old and shout, "IT'S NOT FAIR!!!  WHY US?  WHY HIM?"  Truthfully, most days are not that way.  Most days I am OK.  For the most part, I have accepted our new normal, and I have learned that there are indeed more horrible things in the world than Diabetes.  Of course there are.  It doesn't make us more fortunate - it just makes us different.   For that matter there are more horrible things that happen in other parts of the world that are Diabetes related.  There are children dying because they don't have access to insulin.  But just because those things are out there, it does not lessen the severity or the importance of what our family, and the families like ours deal with.  The fact of the matter is, Type 1 Diabetes IS horrible.  And it deserves our grief if we feel the need to grieve.  Everyone deals in their own way.  I think, for me, that by facing that grief, and by acknowledging it, I am better suited to handle what Diabetes throws our way.

P.S. 
My sister in law has a friend who's young son was just recently diagnosed with Lukemia.  When my sister in law was telling me about her friends' sons diagnosis I said, "I suppose I should be grateful... at least Sugar Boy doesn't have Cancer."  My sister in law laughed and said, "Its funny you should say that... because after they found out what they were dealing with, my friend said, 'At least this is a temporary fight... one that once we are through chemo we don't have to deal with on a daily basis.  Not like your brother and sister in law have to deal with their son's Diabetes.' "

Just something to think about...

23 comments:

  1. Donna, what a beautiful post. So true. I feel you were in my brain for the first couple of paragraghs. The grieving is so different for each of us. I think that is what is important to remember. I am with you, I took it hard...and...there are times I still grieve...four years into this journey with type 1 in Joe's life.

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  2. I have to say that I think I will be a little more sad when my son's pancreas is done. I want it to be done, because I find honeymooning frustrating. But, it also represents the end of an era, so to speak. It will be a kind of closing the door on that part of his old life. By the way, totally love the p.s.

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  3. Like you, I have my days. I NEED those days to help me move along. This IS a hard disease... no doubt about that!

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  4. Almost 3 years later, I STILL have days where I want to lock myself away and cry. Granted they are getting less and less frequent, but I wonder if it ever completely goes away?

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  5. You wrote so much of what I was thinking Donna! As Reyna said, grieving is so different for each of us. It's interesting to hear different perspectives on this. Thanks for your sharing your thoughts :)

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  6. I'm 13 years in, and I still have days that I grieve. Luckily they are fewer and far between than they used to be.

    The PS is so thought provoking...amazing how we would not choose eachothers battles!

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  7. I gotta stop reading this stuff at work. I'm trying hard to hold back the tears. I think I need to have the "sobbing on the bed" experience because I've been holding everything in for the past year. It's good to know someone else feels the same way.

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  8. Sometimes people go through a "shock" phase for a longer period of time, where they are still in a state of denial and do not grieve. But I do believe at some point it will hit them an they will go through a grief phase... and more than once. I have often thought the same about leukemia, that it is temporary and little treatment is needed once you go into remission. But don't want to tempt fate thinking this way, because there are still those who do not make it. And you don't know in advance if you will respond to chemo and in which category you will fall. Diabetes is a chronic illness and at this point time, length of time you have diabetes, does not heal. Things do not improve with time.

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  9. I still go thru grieving sometimes over my "perfect" grandbaby and the "why him" crying jags!! Every now and then something sparks the feeling as if he were just diagnosed...
    Someday, I hope God will answer that question for all of us!!
    Much love to all you D families :)
    NaNa Bev

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  10. I loved this Donna. It does come and go in waves. Thank you so much for sharing this. <3

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  11. I hear ya loud and clear Donna!!

    Man some days I can be so positive and ready to handle anything. Then other days I just want to stay in bed and hid.

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  12. I still grieve, too, and often wonder if I will ever completely accept this disease.

    Your P.S. was really interesting, because my friend J, whose son battled lymphoma last year, recently said a very similar thing to me.

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  13. BEAUTIFUL POST!

    Grief wasn't my first emotion. But it emerged...and remains a part of the way I respond to diabetes.

    Grief is the reason I have become so passionate about Life For A Child.

    Grief is the reason I smile and tell the world I'm okay...when I'm really not.

    Grief is very real.

    Don't confuse it with weakness, though...it's FAR from weak.

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  14. Donna! I'm sobbing. I have done that. I remember a very similar situation. It was horrible. I still grieve. I think I alway will. And that's ok.

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  15. I'm with Hallie - I am sobbing right now. I am grieving with you and your husband on that bed -- I know that grief. It still comes in like waves and I deal with the best I can but some days are just hard!

    Beautiful post, Donna. I love you and your beautiful self!!

    PS - I loved the PS.

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  16. I still grieve off and on after 2 and a half years. Some days, I feel that diabetes really is no big deal and others it is the worst monster out there.

    About your PS... when my son was diagnosed, I was thinking about our cousin whose son was born with a heart defect and has undergone a couple surgeries already and has a few more to go and how having diabetes wasn't as bad as having to deal with that. When I talked to the mom, she told me "I only have to think about it and worry when those procedures come up...you have to think about this ALL THE TIME." Perspectives are interesting.

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  17. The beginning was so hard for me. I cried SO much. Every now and then it hits me too, 3 years into it. I have my moments sometimes when I look at my sweet boy in the middle of the night and know that this way of life is not going to go away anytime soon. Beautiful post.

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  18. Hey, Donna! So glad you found me, so I could find you! Looking forward to following your family's progress :) - Mo

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  19. Great post, you're an inspiration to your community.

    Best,
    Hua
    healthcentral.com

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  20. i wish I could right more...but really I can't, it still upsets me - i'm thinking that I'm still in the thick of this whole "GRIEF" thing and hope to move past it someday, but maybe that's just part of it right...not a horrible lingering pain, but that sense of loss is always there, changing but still there.
    Thanks for sharing so intimately with us all about a topic that i think isn't discussed as honestly as you have done here.

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  21. I agree with Sarah...the sense of loss IS always there. So many times I have felt that loss, that grief and the unfairness of it all. I think it's OK to have those moments...as long as you're not living there permanently! :) I still think about the years before I was diagnosed, and sometimes I feel trapped thinking that I will always be connected to this pump, I will always need insurance, etc. and I long for the days where my life was a lot more flexible, a life where I did not worry and stress so much about my health! I'm with you on acknowledging those feelings and then moving forward--all we can do is one day at a time!

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  22. I just realized I never commented on this post! Working on the blogger basal which will post tomorrow.

    This is a GREAT post about grief. We all go through it, even if it doesn't seem like it. Different stages for different people I suppose. Still hits me more than I would like it to.

    (((HUGS))) to you!

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