THE STORY OF ONE FAMILY'S JOURNEY WITH TYPE 1 DIABETES AND CELIAC DISEASE.
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Thursday, December 2, 2010

Steps.

As 2010 draws near an end, I've been reflecting quite a bit on how far we've come...and how far it feels we still have to go.  Since launching the new Candy Hearts in August 2010, I've been blessed to connect so many new and amazing people.

I wanted to share this post with you.

I wrote it in July 2010 as I was dealing with the emotions of surpassing the 5 year anniversary of Sugar's diabetes diagnosis.

I hope you will be able to identify with it -- perhaps even allow yourself to acknowledge the stairway you've been climbing.

I often slip back, stumble down, and fall backwards...but, in those dark moments, I have come to find the incredible blessings in the Diabetes Online Community (DOC).  Dearest readers and fellow bloggers, my Facebook friends and Twitter pals who put up with my Tweeting Learning Curve, other mothers and fathers who walk their halls at night, praying for a number that clears the pathway for sleep... please know that YOU lift me up.

I wouldn't have been able to make it to the platform I'm standing on if not for each of you.

Thank You.

This one is from deep inside my Candy Heart.

______________________________

STEPS
Originally posted 7/6/10

The line was silent.

At other end, I heard a sniffle.  Sensing that something was wrong, I cautiously proceeded to ask my question again:  "Ma'am, does your child have any history of medical problems?"


Still silent.  


And then a stutter.


"I....I...well...."


Silence.  Sniffling.


"Up until last week, I would have told you no.  But now I have to tell you that she has Type 1 Diabetes."

She affected me.  There was something in her silence.  Something in the way she swallowed hard and fought back tears while trying to let the words roll off her tongue.

"She has Type 1 Diabetes."

At that moment, I wanted to wrap my arms around her, and tell her that I know how hard it was for her to speak that difficult truth about her precious child.

It really got me thinking.  July 25, 2010 marks the 5th anniversary of Sugar's diabetes diagnosis.

Five years...yet...it seems like, just yesterday, I was stuttering over my own words and trying not to cry whenever someone asked about her.

Lately I've come to realize that I'm reaching a new level when it comes to our life with diabetes.  Looking back, it seems like this road has been a series of steps.  As if I've been climbing a huge set of stairs -- sometimes stumbling backwards, but constantly trying to move forward.

1)  DENIAL.  I distinctly remember standing at the kitchen sink with my mom and telling her that Sugar seemed to be drinking alot of water.  I remember my mom asking if I should have her tested for diabetes....to which, I sharply responded that there was NO WAY my baby could have diabetes.  A few weeks later, I remember being at a friend's house and asking if her daughter's diapers leaked the way Sugar's did.  My stomach turned when she told me no.

During this time, I knew what was happening in my heart, but it was too hard to face.  It was easier to deny the obvious and make up excuses.  She seemed so happy and normal most of the time, and her symptoms were very intermittent.  The week prior to her diagnosis, we were on vacation, and her symptoms worsened dramatically.  I knew at that point that I wasn't going to be able to ignore the truth much longer.

2)  SHOCK.  This lasted for about a week after we came home from the hospital.  I felt numb.  My brain was fuzzy.  I struggled with poking my child with needles multiple times a day.  I cringed every time she needed a sugar check, because the "click" sound of the lancet device scared me.  I couldn't figure out how one day turned into the next.

During this time, it felt like time in my world had stopped, but the rest of the world kept on moving.

3)  ROBOT.  Shock quickly faded into the robotic acceptance that this was our new reality.  No matter how crazy it seemed, I was convinced that we could live on adrenaline forever.  We could stick to the rigorous routine, limited carbohydrate allotments, and lack of flexibility forever.  Period.  This is the way it was.  We were in crisis mode and would stay that way.  It was during this time that Sugar's horrible lows started.  I became an automatic person on auto pilot, constantly on guard for the next time she would pass out.  Our life became absolutely crazy with a new baby and a big cross country move in order to maintain health insurance.  Everything seemed to be happening at once.  But I was a robot....no matter what got thrown in my lap, I would still check her sugars and feed her the same amounts, at the same time, every. single. day FOREVER!  The crazier life became, the more robotic I became.  I. think. I might. have. even. started. talking. like. a. robot.

This lasted for about a year and a half.  During this time, I began to feel like I was morphing into a complete stranger.  I couldn't trust my feelings, because I wasn't sure how I felt about anything...or if I was feeling anything, for that matter.  I constantly questioned my judgment - whether it be for a decision at work, how much insulin she needed, or what I was going to make for dinner.  I was constantly apologizing for everything. I felt like an inadequate mother because my brain wasn't able to connect with emotion.  I was sure that a robot could do a better job than I was doing.  I was also sure that every other mother who ever existed was a better mother than I could ever be.

I, after all, had allowed my child to come within hours of her death before shaking myself into reality and seeking help.  A robot would never have done that.  When something was wrong, a robot would have alarmed.  My children needed a robot for a mother.  Not me.  Whoever that was, anyway.

4)  GRIEF ALONE.  After leaving Maryland, we lived in an apartment in Arizona for awhile.  It was very easy to be a robot in an apartment, because I knew we weren't staying forever.  I was just going through the motions, but, once we moved into our new house, I began to realize that being a robot was robbing precious moments that I could never capture again.  Even still, I had a hard time attaching to my new home.  It took 2 years before I hung anything on the walls, and, even now, there aren't many family pictures around.  I missed Maryland.  I missed the trees.  I missed the seasons.  I missed my family - especially my mom.  I missed all the old familiar faces.  Basically, I missed our life before diabetes.

During this time, I cried.  Alot.

5)  GRIEF and ANGER.  After a few good cries, it didn't take long for anger to set in.  And, let me tell you, it set in with a vengeance.  I was mad at the world.  We were preparing for Sugar's transition from shots to the pump, and I was distinctly angry that I had to make such a ridiculous decision to keep my child alive.  The pump transition was difficult, and I was mad about that.  Sugar spilled syrup one day, and I was a lunatic.  If the house wasn't spotless all. of. the. time, I was convinced that it was because I was a failure...and it made me mad that my husband had a failure for a wife and my children a failure for a mother.  I was mad that it took so much work to prepare Sugar for preschool.  I was mad that the school made things so freaking difficult in the beginning.  I was mad, mad, mad.  I was mad that I couldn't whimsically drop her off for her class at church or line up a babysitter for a date night.  I was especially mad when I was working and listened over and over to a mother whine about her kids's snotty nose.  A SNOTTY FREAKING NOSE?  REALLY?????  I oscillated between complete despair and complete madness.  It was hard to find a middle ground and feel positive.  By this time, Sugar's numbers consumed me, and I was mad about that too.


During this time, I pushed anyone and everyone away from me.  I felt ashamed for the thoughts in my mind and the occasional slip of my tongue.  Very few people that I encountered during those days were able to recognize that I was a mother with a broken heart, and extend grace and mercy.  Most of them stood in judgment -- as if they had any idea how they would respond to the nightmare I was trying to make normal.  Oh, but the ones who hung in there...God bless the ones who hung in there and helped to lift me of the pit of anger that consumed me!!!  This seemed to go on for about 2 - 2 1/2 years.


6)  CONNECTED.  I began to seek out connections with other families in our area.  By the grace of God, I actually connected with several mothers who had been coping with their child's diagnosis for about the same amount of time as I had been coping with Sugar's.  I listened to them.  I heard their sadness.  I heard their anger.  I heard their voices tremble when they tried to recount their child's diagnosis day.  About a year after connecting with these families, I realized I wasn't angry every minute anymore.  Suddenly I was able to randomly smile again.  The pit in my stomach seemed to be getting smaller.


During this time, I started my blog.  And then there were more connections - more mothers - more reminders that I wasn't alone.  That I was okay.  Sugar was okay.  Our family was okay.  We were all okay.  And we were going to continue to be okay.  


7)  ACCEPTANCE.  In the past two years, I've come to accept that this IS our life.  I realize that might sound silly, because we've been doing it for 5 years, but it's true.  In the beginning of my blogging days, I journaled all the time.  Sometimes more than once a day.  There was just so much inside.  So many things that I needed to spill out, and - OMGsh - there were people actually willing to listen.  I've learned to prioritize.  I've learned to let go of relationships that create more chaos.  I've been able to recognize special moments with my girls, and cherish them.  I've made friends outside of diabetes too!  Many neighbors, school moms, and folks at church.  I've matured spiritually.  My house no longer needs to be perfect in order for me to find self worth.  Forgiveness comes easily...even for wounds that are layers of years deep.  I'm able to move on instead of dwelling in negativity.


During this time, both Sugar and I were diagnosed with celiac.  I'm not exactly sure how things would have played out over here if not for the supportive network I've been blessed to surround myself with.  It feels natural to reach out to people who are hurting, regardless of whether their pain involves diabetes or not.  I'm able to be irritated without losing my mind.  I'm not beating myself up all the time for things I cannot control. 


It's been very healing.
______________________________


Sometimes I wonder what the next step is.  I wonder if I've reached it yet, but just can't identify it -- or if I'm gripping it and trying to pull myself up.


Whatever it is, I'm so glad I have YOU to share the journey.



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12 comments:

  1. I loved this post the first time and I still love it.

    It think I oscillate somewhere between anger and connected. Acceptance still feels a long way off for me. I'd love to get there, but I am still far too angry.

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  2. Loved it then...love it now. I believe it is a continuum. I tend to navigate up and down the steps...Acceptance is where I reside for the most part...but, then - as of late - I slide back a bit to "anger"...at the "unfairness" of it all.

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  3. Maddison's 4 year is Saturday....WOW indeed, how far we have come! ANGER...ooohhhhhh the anger. I hear ya. Thank goodness we made it past that. Most days anyway. Spilled syrup and a CLEAN house? Sounds like you have written my mind. I realized a long time ago that my obsession with a clean house was based on wanting to be able to "control" SOMETHING in my life...and SEE the result, unlike Diabetes which is silent and "unseen" for the most part. In a weird way that is. ((HUGS)) Great post, as always.

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  4. Beautiful post, Wendy! It's a hard road we travel with a lot of bumps and slips as we're climbing those steps. But the company we have along the way with the DOC is fantastic and makes all the difference. I feel so blessed to have "met" you and connected with all the others in the DOC!

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  5. I think I am going up the stairs backwards. I seemed to accept the diagnosis and was relieved to have an answer to Ellie's various maladies. Then I connected up right away, knowing I would disappear into a bed of depression if I didn't. Besides, I just knew there woudl be a HUGE and SUPPORTIVE online community out there ..... and if not, I was prepared to start one up.

    I can just start to feel the rages of anger and the fleeing temptations of denial creeping in but I keep shoving them down.

    Robot and grieving will come. They always do.

    Thanks for sharing a post absolutely meant for revival over and over.

    What would I do without you speaking what I feel????? :)

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  6. Absolutely a beautiful post. Thanks for resharing this. Your honesty means a lot! :)

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  7. I'm hovering in the acceptance step. But I too travel up and down that staircase more often than I'd like to admit at times.

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  8. ok one more time. I adore this post. Spoke to my very core. I dont wanna write too much in case it doesnt post again lol

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  9. I love the post. It is amazing how you can write exactly what I'm thinking. I think I'm over the anger most days (except like tonight when I'm once again staying up very late chasing BS's). Oh, maybe that is exhaustion!! The emotion of it all never goes away, I've been sitting here balling reading your posts and some of the other bloggers stories! I still can't talk in front of a group of people about my daughter's life with diabetes w/o breaking down. I'm fine one to one, but a group brings me back to that horrid day almost 6 years ago.

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  10. why, why must so many of your post make me cry? I think I'm still grieving, but is it awful that I am grieving for me, too? I realized how much has changed when my best friend asked me to dinner and I had to decline because nobody that was free to babysit was trained to care for Isaac's medical needs, I got sooooo angry and sad. I mean we still have so many people willing and lovingly ready to care for the boys, but there are only four of us that know how to truly care for Isaac. It's hard.
    I appreciate your post and the hope that they help me feel a little less alone during all these long nights and tight rope days.
    Thanks again :)

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  11. I love this post it is one of my all time favorites! Thanks for re-posting it again.

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  12. Oh, mercy....This was the first time I read this post. I am glad to have connected up with you, and hope to connect up with others in the DOC. I guess I live a lot in the denial/acceptance phase. Don't ask me how it can be both at once!! But, yes, I feel all those emotions!

    One step that is coming up, sooner for me than for you: having to let go, and let her move on in her own life. THAT one scares me to death!!...She's 17, a high school junior, this year, and I homeschool my kids....

    Oh, dear, I am in tears now....

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While I'm happy to share our experiences with what works, and what doesn't work, for the management of Type 1 Diabetes and Celiac Disease in our house, please do not mistake anything you read here for medical advice. Decisions regarding your/your child's health care should be made only with the assistance of your medical care team. Use any information from this blog at your own risk.