I started this blog thinking I could use it to find the positives in life with a child with T1D…I thought I could use my sense of humor (twisted and off-color) to be honest about how I feel, yet somewhat entertaining and not depressing…over the last few months, that has proved to be tougher than I thought…
Matty barely feels his lows, he has started, at times, to blow off testing before he dives into eating, or to not finish what he starts eating, after he has been dosed with insulin, he has started hating his pump and the fact that it “screws up his throwing arm”…he has had to sit out, or be pulled from activities that his twin and his friends go on enjoying because he needs to recover from a low that he didn’t feel until 50 or lower…
I try so hard to find balance between letting him be a kid, and taking good care of his diabetes, and most nights I go to bed (for a short time before I am up again to test) wondering what I could have done differently…I am tired, bone tired, a tired I never knew I could somewhat function with. I had become great at putting on a smile and saying “everything is fine”…and even that is getting harder…some days, I am afraid to talk to anyone because they might find out how sad and crazy and scared I really am…
I know diabetes is hard and maybe I am too much of a thinker, I am envious of those of you who can forge through this life and not be a tiny bit angry or sad or even just plain pissed. I try to spread awareness through Facebook and even in general conversation, and I have been told that is negative? maybe…I just want people to understand how much my little man goes through, how we have to think about EVERYTHING constantly…how there is no break…maybe some type 1 mom’s get a break, they may have family who gets it or friends who can safely watch their child or a spouse who is home, who gets up at night…I wonder, what am I doing wrong that I frigging hate diabetes SOOOOOOO much. I know “it is what it is” I know “it could be worse” I know that it has brought us some amazing people and experiences, I know it has brought my family and I and my spouse and I closer, but it has also torn us apart…
Matt has been chosen as the Rhode Island delegate for JDRF’s Children’s Congress, and this July he will be there with 150 other Type 1 kids to advocate for continued funding for research..I have been wracking my brain trying to figure out how to get congress to see what life can be like at times…I almost wanted to video tape my son crying last night, saying he is sick of diabetes, that he isn’t sure he wants to pump any more. I want to tell them that after 2 days of bouncy houses and parties and trampolines, his little body was BEAT..between the constant lows and the recovery highs…and I want them to know all I can think is, “I let him be a kid this weekend, and what price will HE have to pay someday for that” ? But, will that really make them understand how bad we need a cure?
I am so proud of my son, and he is so strong and brave. He has done and faced so much in his short little life, so maybe congress should see this amazing confident little boy, who has faced more adversity in 9 years than most face in a lifetime…maybe they should remember this strong, beautiful, well spoken tiny advocate…and not this crazed, sleep deprived, overwhelmed mom who can’t save her child from this monster named Type 1 diabetes…
I need to find the hope again, I need to teach him to grasp life by the horns and hold on for a wild ride! I know we have T1D for a reason, I haven’t found it yet, but it is there…I believe we will bring about change, because we will not lie down and take it. Diabetes can be a terrible thing, it rears it’s ugly head always at the wrong times, but I cannot continue to let it beat me down, and more importantly for Matt..I need to find the light for him, to guide his way through this crazy life! I am vowing here and now to be positive, to find the funny again…
I want to sahre this very personal letter with you, I found it on-line somewhere, I think, shortly after he was diagnosed, and I tweaked it for him:
Dear Matthew,
If you think the world is collapsing because you have diabetes, I cannot answer that feeling as if I had it because I don’t. But, I can tell you that the choices you make and the daily battles you have inspire me to try to change this world, for you. You amaze me with your drive to get back to what it was like when you did not have this disease. That drive that causes you to do what you can to feel good so you can face another day. Don’t ever let anyone compare your disease to anyone else’s because everyone has to face what they have.
I don’t have it, but if giving it to me would have stopped you from getting it; I would take it in an instant, because you mean that much to me. Please do not ever give up on yourself. I have the faith that you can change the world with a loud bang or with a steady and quiet approach. The change can be as big as changing the world around you or just living a life that has you in the best control because you will feel better.
We, who do not have it, will never completely understand what it is like to have it, but because we watch you; we do know the desire to take it on ourselves. Why? Because we love you. You are everything to us as parents. You are our hero. We know we can be a pain to each other sometimes; we could do that even without diabetes! But we just want you to remember that when it just gets too much sometimes; we will always be here to hold you and encourage you and look for that one day that our work has paid off and your diabetes has been reversed.
I swear to you; we will only stop—when you can.
Love forever,
Mom and Dad
Pancreas Interrupted 