Last year, I came across my wedding dress, which was stored in a bag and tucked way back into a dark closet. Over the years, I would occasionally come across the dress, take it out and think back on that special day. But this time, my thoughts went in a different direction.
After admiring the dress and chuckling about how "old fashioned" it looked, I thought about my Type 1 diabetes and wondered, "Where did I hide my insulin pump when I went down the isle? Where did I put my glucose tablets? Who held my blood glucose meter during the ceremony?" And then I noticed something strange. There was not even a trace of blood on my wedding dress. Now, you may find that an odd thought, but if you are a person with diabetes like I am, I'm sure you know what I'm talking about. Because we check our blood sugars daily by lancing our fingers, we often find little blood trails here and there, especially on our clothing.
I personally know at least three women with diabetes who walked down the isle with small, light pink areas on their carefully chosen wedding dresses, where blood from a lanced finger had been hastily cleaned by loving moms, sisters, and friends. And I know one father of a groom whose tux shirt bore the same distinguishing diabetes mark.
But there was no blood on my wedding dress. So why is this so significant? Because I didn't have diabetes on my wedding day, and I realized that I had forgotten that fact. This condition has so permeated my every cell, every piece and memory of my life that I have forgotten my life before diabetes. Ever since my diagnosis of Type 1, I have vehemently fought to remember my "life before" as I have always wanted and somehow needed to hold onto that memory. But the truth is, I can no longer remember what it feels like to not have diabetes. I just can't remember the feeling anymore, no matter how hard I try. Obviously, from the start, I've been aware that I have diabetes, but it took a long time for me to associate with that diagnosis as a part of who I am. I am insulin dependent for life.
"Yes Papa, he knows all the songs... he has them in his head... but not in his heart." -- The Jazz Singer 1927
In the past, I have known and worked with countless families of children with diabetes. Once the parents meet me and recognize that I am very open and willing to share my female diabetes life perspective, I will get "the call" from the moms of little girls with diabetes who want to ask me:
"Peg, were you married before or after you got diabetes?"
This question speaks volumes and addresses the love and fears a diabetes parent possesses on many instinctual levels. But to me, what they are asking me is, "Is anyone going to want to marry my child? Will my child have a good life, marriage, family, love?" Even though I always expected the call, my heart would break for these moms. And all the moms and dads of a child with diabetes, boy or girl.
In thinking about myself being diagnosed as a young adult rather than as a child, I often feel that perhaps it's psychologically easier to develop the condition earlier, before adult memories set in. Children are so resilient and able to more quickly adapt to their diabetes as the norm. But their parents on the other hand, not so easy, right mom and dad?
The parents carry all the burdens, all the fears and all the unknowns and mechanics of managing this demanding condition. But this I will tell you, the parents I've met are relentless in their love and care and hope for the future of their child with diabetes. They know and understand what's at stake for their child on a level most people cannot even comprehend. It runs deep and is multi layered. They get it. They get it because they have no choice but to get it.
I believe that most parents (diabetes or not) have had the experience of nightly checks on their sleeping child. Parents will gaze at those sweet faces and their thoughts might turn to how this child will grow up and what their lives will be like. So imagine if you will, checking on your sleeping child with diabetes, and, after lancing their finger to obtain a nighttime blood sugar reading while they sleep, wondering and worrying about what their child's life will be like. Who will love and care about them as they leave home? And who will be willing to partner with them on their diabetes journey and who will be willing take the "diabetes baton" from the loving parents?
Now take that daunting thought to yet another level. The over whelming concern that their child may not have access to health insurance in order to stay healthy, productive and vibrantly alive. When they age out of the current mandate of being able to stay on their parent's health insurance until after age 26, will they have to accept and stay at a job that they hate in order to have access to group health insurance? Parents of kids with diabetes don't look at that unknown in theory, they look at it in known reality. It is unfair, and scary beyond belief.
We are at a critical juncture (and still very vulnerable) when it comes to being able to purchase health insurance with a pre-existing condition. We are a vote away from loosing momentum, from being capped off on our coverage, and ultimately becoming a burden to our families, friends, and society. It's going to be bumpy and challenging every step of the way, no doubt. But as I always say, "I live with Type 1 diabetes, so you don't scare me. Bring it."
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