Although I only have one follower at this point, my sister-in-law (thank you), I wanted to write a post today for this amazing cause. Spare a Rose Save a Child http://bit.ly/SpareRoseSaveChild
In June 2011, my sweet, little, innocent 15 month old niece was diagnosed with Type 1 Diabetes. After some time to let it sink in a little I wrote this (knowing I would one day post it on my blog).
“Reading about the new Disney Character Coco and Denise Jonas’s involvement and how young kids just want to relate and identify with someone, I start to cry. It’s been just over 1 month since my now 17 month old niece was diagnosed with T1. When I first heard the news from my brother I tried to be positive and strong, reminding him that it is not the worse thing that could happen. Our whole family had to relive this ‘nightmare’ happening to us again 28 years later. For the first time I knew what it was like to not be the one with the disease.My heart broke in so many pieces, knowing first hand the road my sweet little muffin would have to walk down. So many thoughts and feelings went through my head during those first few days – denial, shock, anger, all the typical phases of grief. A strange thing was happening to my entire belief system. Thoughts, feelings, emotions and deep-rooted beliefs began popping up that I didn’t even realize I had buried. One thought that went through my head a few times the morning after the diagnosis was that “My perfect little baby niece was no longer perfect and it wasn’t fair!” Immediately, maybe even before this thought was finished, my protective Auntie voice piped up in defence “Yes she is still perfect!! And nobody had better ever try to tell her or treat her differently!” Then it dawned on me, had I always thought of myself in this way, less than perfect, different, disabled, damaged, not good enough? A slew of emotions came up for me that day and for the first time I was able to talk to my inner 4-year-old and tell her that everything would be okay and to love herself and know that she IS perfect just the way she is, non insulin producing pancreas and all! It was at this time that my energy shifted toward my own diabetes and to my nieces. I imagined my niece 20 years from now updating Auntie Cori on the latest advancements and technologies in the Diabetes world.
Our family realized that it was good thing that we knew about Diabetes, and we also realized it was not such a good thing that we knew about Diabetes. We knew that a PWD could live a normal healthy and long and happy life and we also knew about the risks involved.
To be completely honest after I left my mom’s care and she started to let to go and let me spread my wings, I put diabetes on the back burner for a long time. I still checked my BG, and gave my insulin and saw my team, but I rebelled, diabetes was something I tried to hide as much as I could. In my early twenties I decided to start Pump Therapy after my volunteer gig at JDRF. I would go through phases of focusing on my health, but I was definitely not 100% committed to it. It took me a few more years to get back on track. From what I understand, this is typical of that age group. After I left the care of the Diabetes team at the hospital for Sick Children I was under my own team for a few years. Eventually I stopped rebelling and I started exercising, seeing a new team, and slowly started “trying” to be a better PWD. Just this past January at my bi-annual endo appt. I vowed to touch base with the Diabetes Centre on a weekly basis, sending in my bg results, recording my food and exercise etc., in an effort to lower my A1C. February and March went by finally in April I had to see the DC to have a government form filled in for my Pump coverage. We made a few changes to my rates, checked my A1C…Meh… I was still really not into recording my food and boluses on a daily or even weekly basis. My next appt with my Endo was scheduled for Friday June 10. My thinking… I still had lots of time to get it together before that appt. It just wasn’t what I wanted to spend my time on I suppose. Can you blame me?
My niece was diagnosed on Monday June 6. My thinking changed. Now I knew what it felt like to be a person who loved a person with diabetes and not just a person with diabetes. Now I wanted to be a role model for my niece and do anything I could to be the healthiest I could be. What a journey of the heart this has been for me over the past month. Although this disease is not the most fun thing to have and not the easiest to manage and although you can never take a break from it, I have found over the past month that the amount of good news out there about it is very refreshing, especially for my mom who 28 years ago was preached all the things her daughter could not do. Today there are a lot more people living healthy long lives with this disease, today complications do not have to happen, today technology is SMART! Today there is a massive online community of PWD sharing honestly about life diabetes lessening the burden and feeling of isolation more than ever, Today Disney is featuring a character with Diabetes and Pop icons like Nick Jonas and his mom are advocates for this disease! Today there is no reason feel less than or imperfect in any way! Today there is HOPE!”
And today, there is no reason why a child with Type 1 diabetes should not have Insulin!
The thought of another little princess like my niece not having access to insulin is something I can not wrap my head around. Just the other day I was stuck on a flight for an hour and my site that I had changed earlier in the day was not in right, I was not getting insulin. It is an awful awful feeling, your lungs feel heavy, it’s hard to breathe, your mouth is pasty, your whole body feels like a bag of mud, you just want to sleep. I cannot imagine not having insulin. Yes, life with diabetes is not always easy, but at the end of the day I am here, living and enjoying an amazing life because of Insulin! I am so thankful to Banting and Best for inventing this treatment!
I am going to send my family this blog post and the link to the “Spare a Rose Save a Child”. This is an amazing project that needs attention, just like many other Diabetes causes. I hope that no child with diabetes anywhere will ever have to go without Insulin.
Thank you to the founders of this project, for seeing a need and making a difference!