Health care is a basic human right, not a privilege. For some reason, we’ve allowed ourselves as Americans to be fooled into accepting that one must be blessed with “means” to actuate appropriate health care. As a nation we have failed to realize that our health care system is a barometer of our society’s value for human life.

-Me

Monday, November 06, 2006

A Call To Action (Insulin is NOT a Cure!)

Scott and Penny have lit the fire in me to write about how diabetes affects my life.

A month ago this post would have been a whole lot different. A month ago I would have focussed a lot on hypoglycemic events I can't feel and the constant variables and guessing that goes into diabetes. I would have focussed on the lifetime I've spent immersed in my disease and all for what? To maybe avoid some complications? To live in a life of highs and lows that constantly affect my emotional state and all of the dealings I have with anything and everyone?

But, in light of all that, I would have said having diabetes sucks but it isn't that bad. I can live with this treatment, for now......I can live with it for ME.

Everything changes.....

This is my daughter, and she is three and a half. She is the newest face to diabetes. She is 31 lbs, 33 inches tall. Her name is Gracie Ardith-Ellen. She has two awesome pinpoint dimples, and the darkest brownest eyes. She even has spiral curls that I think instill the very devil into her temperment. She is the newest face, delving slowly from prediabetes into diabetes. She is an example of a beautiful little girl with a very wrong and unmerciful auto-immune disorder. Take a good look.


My daughter had her first shot of insulin tonight, Lantus, 1/2 unit. I have been a type 1 diabetic for 15 years, and I have managed okay. But do you think that insulin was "good enough" when I gave her her first shot, and comforted her afterwards? Insulin is far from good enough. Insulin is NOT enough. Insulin does NOT solve her problems. Insulin will keep her from dying. That is all. And that same treatment that could keep her from dying could also aid her in dying. This is on my shoulders.

I have never been an advocate for a diabetes cure. I honestly don't believe I will ever see a cure. So why do I bother with this? Because insulin is not good enough. It is good enough for me, I can struggle with it, but it is not good enough for my daughter. That should tell you something about insulin treatment. Fifteen years I have used insulin treatment, and I feel nothing but despair when faced with my daughter also needing it. I have fifteen years experience of poking my fingers and taking those shots, and I am DEVASTATED by the understanding, the TRUE understanding, of what is to come for my daughter and how much her life will change.

My daughter can be anything she wants, even with diabetes, but the pain of knowing her struggles before she has them, is much for my heart to bear.

My daughter does not yet meet clinical diagnostic standards for diabetes. Her highest recorded blood sugar thus far is 177. Her 2 hr PP tonight was 174. Her AM fastings are typically 100-150. Her a1c is currently 5.5%. Her blood sugars are not getting better, they are only getting higher. I am a mother watching helplessly as her daughter falls prey to diabetes. There is nothing I can do to stop it. Nothing I can do to reverse this process.

All I can do is give her the tools she needs to manage this condition as she gets older. I know she is truly blessed to have a mother who is as active in her own personal care as I am. I know Gracie has a phenomenal role model in me, as I had in my mother. I know Gracie will take charge of her diabetes as she gets older. I know this, and I have faith that Gracie will be such a wonderful peanut as she ages that her diabetes will not be a factor. But I know, just as well as you know, that it will always be there, in the background. She will always have to work that much harder. And she is only three. She is only thirty pounds. She is not even three feet tall. She is not who you see when you see diabetes on TV, But she is our newest addition.

This month, I am going to get out of myself, and I am going to tell people about my daughter. Anyone who will listen. Because she is three, and she could be your daughter; she could be their daughter. This is what I am doing to spread awareness about diabetes this month, I am telling Gracie's story. I know it will touch people's hearts.

Perhaps you can tell her story too? Or maybe you have your own story to tell? The point is, get out and educate. There is NOTHING we can do to stop Gracie's diabetes, and there was NOTHING I could have done to stop my own diabetes. This is not a disease of bad habits, this is a disorder that deserves attention and research. Please, get out of yourself this month, and tell a story about diabetes. Get out and educate, because really, if you don't, Who will?

21 comments:

art-sweet said...

This breaks my heart.

Lyrehca said...

Your post reminds me of the new book out, Cheating Destiny, about the politics and history of diabetes in America. The author is type 1, and his three year old son is diagnosed with type 1 while he is working on the book. He says similar things about not thinking about a cure for himself, but for his young son. (They were also profiled last week in Parade magazine: http://www.parade.com/articles/editions/2006/edition_11-05-2006/Diabetes

Penny said...

Oh, Sarah, I'm so sorry about Gracie. I can honestly say that I understand where you are coming from.

The pain you feel when you're child is diagnosed with this disease is undescribable. Only someone else who has been there would understand.

And, I think it's even worse for you, because it's happening slowly and you are powerless to stop it. Also, you know what her future holds because you have lived it yourself.

Thank you so much for sharing this with everyone. This is just the type of thing people need to hear to understand why finding a cure is so important.

julia said...

This made me cry. I'm going to link to your story and write about it tomorrow.

Vivian said...

Sarah,
I too am sorry about Gracie. She is beautiful. Thanks for sharing your story.
Viv

Minnesota Nice said...

Damn. Yes, it certainly does put a whole new spin on things. At times like this, a magic wand would certainly come in handy..........

Scott K. Johnson said...

What a thing.

Man. It's just so not fair. And I think it to be just so very hard to watch it happening, and feeling so helpless.

We parents are "fixers". We want to fix whatever trouble is bothering our little ones. And there is nothing we can do.

I think that Gracie has a very unique situation though, and one that will do nothing but empower her as she grows up. She will not remember much before diabetes, and she will remember all of the struggles and challenges that she and her mom work through. A strong bond between the two of you.

It still sucks though. Bah.

Megan said...

Oh my gosh Sarah, I'm so sorry. :hugs:

Kevin said...

I have so much admiration for your strength and determination to turn such a difficult event into a proactive mission to educate and raise awareness.

I am so sorry that Gracie will have to deal with what we go through on a daily / hourly basis.

Bernard said...

Thanks for difficult post, I'm sure it wasn't easy to write. Your honesty about your feelings is palpable.

I'm going to steal the title line for a future post.

Maybe if each of the OC bloggers posted an entry with the same title, something might happen? It's certainly worth trying.

Sandra Miller said...

Oh Sarah, I just saw your comment on Penny's site and hoped you weren't talking about your little one.

And then I came here, and
broke down as I read about your beautiful little girl.

I'm so sorry.

type1emt said...

Sarah, I am sorry to hear about your daughter. Have they done any antibody testing, etc. to find out what type she may be getting?(I realize, probably type 1 but kids get type 2 nowadays too)
If there were a cure,I say, give to the kids first, its just so NOT RIGHT that they get this.
Take care.

Kassie said...

I know a handful of moms with type 1 who have gone through this, if you want me to try to make a connection for you let me know.

Thank you so much for putting this out there.

Shannon said...

Sarah, I can't express enough how sad I am for your daughter and you.

Kerri said...

Oh my goodness, Sarah. I am so sorry that Gracie has been diagnosed. I can't pretend to know what it feels like to be a mother, nevermind a mother to a child with diabetes, but you and your family are in my thoughts and prayers, now and always.

Lean on us for support. We are always here for you.

Jamie said...

What a touching post. My daughter was diagnosed at 18 months of age. I know what you mean about telling her story. That is exactly what I try to do as often as I possibly can. She's too little to do it herself.

I am so sorry she was diagnosed as well.

Andrea said...

I'm sorry too. I know what you mean. I can deal with it for me but if it ever happened to Frances ...

George said...

Sarah, I will definately get out and educate.

I am so sorry.

LauraJ said...

I'm over here through Julia. I think you've heard enough I'm sorry's so I won't bother you with another one. I will say thank you for sharing your story. Thank you for inspiring courage in others.
Big hugs to you and Gracie.

Kelsey said...

Sarah,

I'm so sorry. You're right about being a great role model. Gracie is much better off than all the children with diabetes who don't have a parent you truly understands the disease and what they're going through. For whatever comfort that brings.

I've never really considered the possibility of passing on diabetes to my children. As my husband and I prepare to start our family, it's something that I must think about. Thank you for reminding me.

Take care, you're in our thoughts and prayers.

Jenny said...

Julia sent me and I'm so glad she did. Such an important topic deserves more attention.

Thank you for reminding me about it.