Maddison has been quite the famous girl lately. She made front cover of a magazine for the City of Avondale simply because of her enlightning smile. She was chosen for the cover by attending a garden planting event where her Aunt Christina runs the Healthy Avondale program. For this she is so proud!
Then there is her full page photo featured in the AzSociety magazine, a follow up article from The Promise Ball when we donated our puppies. Maddison is precious in her evening attire and curly up-do, holding a puppy with pretty painted nails. She is quoted saying why she wants a cure for Diabetes "I don't want to poke my fingers anymore". This, is the photo that brings tears to my eyes. It was emotional for both Josh and I too see her pictured there. I'm not sure why exactly, we were feeling proud, and then a bit saddened. I never really thought of this her way. Maddison said to me "to bad my picture is there because I have Diabetes". And that made my heart break for the 100th time this week. I think that she is starting to feel resentment of the Diabetes, in fact, I know so after her last few days of varied emotions. I pray to God that Diabetes never "defines" her in her own mind.
Maddison mentioned the other day that she "doesn't want to have Diabetes anymore" which is something she has never said before. She has complained about things associated with care of Diabetes, but never complained of "having Diabetes". Let me explain the difference....finger pokes hurt. She has never complained that she doesn't want to poke her fingers although we do so at least 8 times a day most days. Injections hurt, she never complained about having to have an injection, but certainly that some of them have hurt. Site changes can REALLY hurt. Stopping your play to check your blood sugar hurts your free spirit. Being denied a snow cone from the ice cream man makes you feel different from all the other kids.....yep, she has never before complained about HAVING Diabetes. She used to see each of these things as other irritations, not Diabetes.
I have heard Maddison say numerous times that she "likes" having Diabetes. Why you ask? Well being the physically tough girl that she is, she doesn't even notice the pain associated with needles and pokes. She is able to leave class many times a day to check her blood sugar, (which is a relief to her short attention span) and she can "get out" of a tough spot in her day if she is high or low, or if she just wants to claim that she feels that way. Not good, I know. She likes the Skittles before breakfast because she is low. (of course she is tired of juice by now) She likes the fact that she can choose a field trip with Mom or Dad instead of attending the one at school when there is no one to go and count carbs and dose insulin. But lately she is finally realizing that Diabetes as a whole really sucks. Realizing that all of these irritations are one thing called Diabetes. She thinks that people "know her" because of it. In her mind that means they "like her" just because of Diabetes. The entire school knows Maddison since she was diagnosed. I see lately that doesn't make her feel so good anymore. At least not in her heart. She doesn't want to be known for her Diabetes or because of it..... and that is killing me inside. She has been crying alot lately about school again. She says she doesn't have any friends except for 5. She is upset because last year before repeating 1st grade everyone knew her and loved her BEFORE Diabetes was diagnosed, and this year they all know her BECAUSE of her Diabetes. Not her words, but Mommy radar. It sounds to me that she is feeling like there is no one that is her true friend. She says that they just like her because they get to walk with her to and from the nurses' office. She is seeing herself in these publications lately (including the JDRF monthly newsletter as well!) and feeling bad about the "reason" she is being recognized. I'm not sure I know what to say about that. It makes me cry. It makes her cry, and I don't think this being recognized in the spotlight has been good for her confidence as one would imagine. I hope that she can overcome these feelings and quickly see that she is also recognized for helping fight Diabetes, one day and one opportunity at a time.
Although Maddison is hurting right now because of her recognition, I am hopeful for many more opportunities to arise from this. We are scheduled to meet with a Senator (not sure who yet) for the legislation review and "Promise to Remember Me" campaign next month. Maddison does NOT want to attend. We were asked to simply answer his questions on what our lives with Diabetes is like. Simple enough, maybe not for Maddison right now though. I feel empowered to actually speak out and be the voice of families everywhere that just want the world to know that this disease IS as horrible as the many others and deserves attention. This isn't about dieting and excersize, giving an injection and you are good to go. This is about a disease that effects millions of people worldwide, Type 1 or type 2 has no signifigance. The Senator wants to focus on Health Care costs of course, so listen!! Last years health care costs in the US accounted for $132 billion dollars!!!!! Is a large part of that based on lack of education and awareness of managing the disease? Of course it is! So many people are "ashamed" to have this disease, that is what REALLY bothers me. It makes me naseauted to think that my daughter could feel this way based on comments from other people or the media and news reports. The misconceptions are amazing. How did I or my child cause her pancreas to stop working? Did other children cause their Leukemia? Are they accused of causing their disease? But people with Diabetes ARE accused of this, even by uneducated Physicians!!!!People have other organs that fail, Diabetes is in fact a FAILED ORGAN IN YOUR BODY!!! It is time that people STOP THINKING THAT WE CAUSED THIS FUCKING DISEASE. Time for people to realize the complexity, and why so many people suffer complications!!!!! It is NOT an easy disease to manage!!! ESPECIALLY IN A GROWING CHILD!!!
-Whew!- I am about to get a bit off track........
I feel empowered because our situation is partly unique. I am a person with Diabetes and also have a child with the same disease. Not really so uncommon anymore, but I see my Diabetes as a "priveldge" in caring for Maddison. I understand what it feels like. Every-single-aspect of the disease I can relate to. Phyisical, emotional and everything in between. Now I just have to find my way in making a difference. I have to help Maddison live her life as "Maddison" and not as a person with a disease. Maddison has Diabetes, Diabetes does not have Maddison. Although I think that Diabetes will play a large part in who Maddison becomes, it does not make her who she is.
Moving my blog again
8 years ago