keeping it real

Heather, over at teens and a toddler, sent me a very kind message mentioning she chose me as a recipient of this:

And, while I will display the button on my sidebar and while I will kind-of-sort-of participate in reciprocating, I need to say something in a full-disclosure-in-the-interest-of-honesty kind of way. 

My blog is here, and out there, for the selfish purpose of wanting my voice to be heard.  Because I sign on to my Google Reader several times daily so I can hear the voices of people out there who inspire me, motivate me, challenge me to be a better Person/Pancreas/Christian/Mom/Wife/Daughter/Friend/Sister.  Because I want to feel like I belong.

I don't blog for gaining followers or for income or even for comments, (although I admit I do love it when someone takes the time to do so) however, I totally admire those who are dedicating their time and talents to building a better blog.

All of this to say; thank you Heather for the 'award' and please forgive me for not following the acceptance rules according to the following:

As with anything else there are rules and the rules are:

  1. Thank and link back to the person who awarded you the award. - done
  2. Share 7 things about yourself.  - will do
  3. Award 15 other bloggers.  - Anyone who has 7 things they want to say
  4. Contact these bloggers and tell them about the award.  - consider this your invitation

This dreary, snowy, cold and dark Monday Morning, These 7 things are on my mind:


Of what?  Of having to be a make-shift-pancreas.  Of having a chronically ill child.  Of having to fight the insurance company.  Of having to watch Ellie take on a disease with no cure.  Of having to count every single fricken' carbohydrate she puts in her mouth.  Of having to plan out the day and look ahead when all I want to do is be in the moment.


One of my new purposes in life is educating others on about Type 1 Diabetes.  Education is power!  And, I believe educationis the first step in finding a cure.  I am confused, however, on how to give a quick and dirty explanation of what to answer when well-meaning people ask the million dollar question:

"How are you guys doing?"

I have struggled with answering this question in 600 words or less.  I did, however, find a wonderful way of describing things while reading Sfincham's Blog post about 'the subject of sleep'.  About 2/3 down the page, she mentions trying to get an insulin dose correct and refers to it as a 'moving target'.  :: light bulb moment :: 

"Living with Type 1 Diabetes is like trying to hit a moving target.  Not just once, but over and over, 24 hours a day."


I recently learned from another T1 parent that even if Ellie is able to hit that moving target more often than not, she still has a VERY high likelihood of having c-o-m-p-l-i-c-a-t-i-o-n-s.  As a mom, this is terrifying.  No one wants this for their child.


I have become overly sensitive, and I don't like it one little bit.  Overly sensitive to the inflections in Ellie's voice.  Overly sensitive to family members' well intentions.  Overly sensitive to Dr.'s questions.  Overly sensitive to food and food choices.  Overly sensitive to people's opinions of me.  Even overly sensitive to physical touch.  I am on high alert and it is getting 'old'.


I am failing in my promise to not be an overweight mother to a T1 diabetic daughter.  Ellie will be fighting prejudices about her disease her entire life, especially about her weight.  If she is skinny, people will wonder how/why she has 'diabetes' if she isn't overweight.  If she is overweight, people will assume she is 'diabetic' because she isn't skinny.  (Using the term 'diabetes' as a catch-all for all types and assuming the current social indifference)  It is something I decided very early on that I didn't want to add to Ellie's fight.  I want to be a good example for her and for her disease.  If I can't follow a healthy lifestyle, why should anyone expect Ellie to?  I have actually gained weight since her diagnosis.  Why?  Because food is where I run to for comfort, and I have been needing LOTS of comfort lately.


I am humbled God chose me to be Ellie's mom.  I don't deserve it and I am certainly not worthy, but I will overcome the 'list' above through prayer and thankfulness.  If He believes in me, I will defeat my confusion, fears, sensitivity and failures through His never ending love and support.  I will work through my doubts and struggles because God has promised to walk beside me, in front of me, behind me and to even carry me when I don't believe I can take another step.  


Even though I don't want to be, I am officially a card-carrying member of the diabetic online community (DOC) and I am grateful.  Grateful for parents of children with diabetes and people living with diabetes themselves sharing their voices so freely and openly so I don't feel alone.  Community is a powerful force and through it a collective demand for a cure WILL be heard.  I am thankful to have the opportunity to share my voice.

I will continue to pray and continue to read and continue to fight.  I will also continue my resolution to choose JOY in 2011.  For today, however, I might just go back to bed for awhile because I do hear it calling me.


Reyna said...

WOW...very "real" post Amy. The part where you are feeling like you are failing...I never really thought of that about weight and being the parent of a type 1. I need to think on that one some more. For the record, I think you are fantastic. You have brought so much to the DOC and you are by far one of the most "colorful" commentors around.

Know we are here to hold you up when you are feeling scared, inadequate, and bummed out.

Joanne said...

I think you are one terrific pancreas and I enjoyed the honesty in this post. I feel so many of these things you wrote about.

Although I am curious about the parent who told you about the complications... I've read on several adult T1 blogs that even though they went through stages of rebellion, they're doing great and are complication free. Or am I just dreaming that I read that? These days, who can tell???

Heather said...

Amy, Amy, Amy...We aren't in high school anymore. You accepted the award and said thank you. You did just fine. How can you worry what other people will think? Please don't. I awarded you because I like that you speak your mind not because I wanted to burden you with something you would hate.

I understand everything you are going through with Ellie. I can't say that it gets easier or better but you will overcome these worries about other people.

I had CPS in my life not once but twice from my daughters school! You will drive yourself crazy with what other people think. So I hope you can overcome that one as soon as possible!

There are complications that can happen, but the ones that you can't control have nothing to do with your and Ellie's management and the ones that can hapen from poor management aren't gonna happen because you are doing what you are supposed to!

As for the weight issue, I am nowhere near perfect either. And yes people are morons and judge. But Ellie will learn that they are morons, and she will do what Macy does. Macy rolls her eyes and walks away shaking her head (while I get frustrated and try to fix their moron issue, which I can't. You can't fix stupid.)

Its not fair our babies are diabetic. Its not fair we have to fight battles with insurance and schools and such. Its not fair. But you know what? Ellie and Macy are strong and amazing children. We are strong and willful moms. It will be ok and we will survive. And maybe, just maybe, we may help someone else along the way who is going thru the same thing as we are.

Love and happiness sent to you and Ellie. You are a strong and wonderful mom.
Congrats on your award and good job on how you responded.

Lora said...

WOW! Many of those things got to me. I can almost hear my voice speaking your words. If I had to describe myself these days... I would have to say that I am like a sinking ship. Granted, I am frantically throwing the water back overboard where it belongs, but I can't seem to repair the damage enough to stay completely afloat.

I think you are an awesome Pancreas/Person/Christian/Mom/Wife. And you deserve that award. Display it proud.

Mrs. Tuna said...

Listen, all we can all do is the best we can be during that one day. That is all we can expect from each other. You're doing great.

sfincham said...

Well Hello! Thank you for the mention in your very very nice blog post and thanks for the nice nice comment on mine! I wanted to respond to you right away...however life has thrown me a damn hard curve ball and I have spent the last week with flu ran-sacking my home and loved ones as well as a couple of days in the hospital with my lovely little Ellie Lee and then to top it all off I finished a horrible long day today digging up a stool sample from my little boys butt cover to send to the lab!!! Sooo now that I have all but grossed you out I'm sure I want you to know that I think you are right on track to be a most wonderful pancreas and you are way ahead of the emotional game for the few months you've been given this little gift no one wants! Keep your chin up and learn as much as you can. I'll be bloggin about my little D trip this week and I was more than glad I have spent the last year reading, researching and blogging with everyone! ((hugs)) to you and yours and glad you found my blog and took the time to reach out!

Stephanie said...

Just found your blog...and wanted to say that I can *so* relate to so much of this post. My little guy was diagnosed 5 months ago and I have all of those same feelings. Even the weight gain. :) I beat myself up because I encourage him to make healthy choices, yet here I am, late at night stuffing my face to make myself "feel better."