In October I wrote about our friend's little guy's diagnosis (The Rest Is Still Unwritten). I have to share what his mom, Lisa, wrote recently - it is truly beautiful:
"It’s been three months since Griffin’s diagnosis.
It’s hard for me to believe the progress we’ve made in this relatively short period of time. In the beginning, I couldn't even think about it, much less talk about it, without fighting tears. Then as the days turned into weeks, I would surprise myself by being able to hold a conversation about it without crying or without my lip trembling. Time helped with that, but so did the realization that many people didn’t know what type 1 diabetes is. A big part of my conversations with people ended up with me educating them about what it is (an autoimmune disease) and what it’s not (the “bad” diabetes.) As opposed to the good diabetes? Having to tell his story over and over and over out loud, explaining what it meant for him and us, helped me to see it for what it is as well as what it isn’t, and get to a less emotional place.
I tried not to cry around Griffin. The two exceptions I can think of happened pretty close together. The first was just after I took him in to have his blood sugar tested for the very first time, having been suspicious for a few weeks. The phlebotomist in the lab who took Griffin’s blood was in training. When she saw the number, she looked at her trainer and then at me with that expression I have seen many times since. The number was terribly high, and I knew what it meant. I kept my tears in check as we got his sweatshirt back on, and as we walked upstairs to pediatrics where they told us the doctor would be waiting to see us. The 2 of us sat in the waiting room, waiting for the Doctor to tell us what I already knew... what I had known on some subconscious level for weeks... But watching him climb around the bench we were sitting on and look out the window with his smile and his happy attitude, even as sick as his body was (this feeling had become his normal over the past few months) it made me well up to think that the next window he’d be looking out would be from a hospital room. I knew he’d be admitted with a number that high. He noticed me crying and asked why - and out of an absolute lack of any preparation for the question, and an impulse to tell the truth, I said, “Griffin, you have diabetes. That means your body doesn’t make insulin, and you need insulin to process the food you eat. And I feel sad about that right now but we are going to learn about how to keep you healthy and happy.” And he smiled at me and gave me a hug and with that, led me toward keeping my chin up. The second time I cried in front of him was about a week after he got out of the hospital. We were in the cereal aisle and he wanted sugary cereal and fruit snacks and I told him that those weren’t good choices for us. He cried and said, “I wish I didn’t have diabetes.” And I cried, too, and I said, “Griff, I wish you didn’t have it either. But you do, and we have to make good choices to keep you healthy.” I wasn’t crying because of the fruit snacks or sugary cereal--let’s face it, he’s better off without that stuff--but crying because of the magnitude of the issue, for the rest of his life it meant much, much, more. And we gave each other a hug and moved on.
I’ve spent an enormous amount of my waking life thinking about this, thinking about the now and the later, wondering how things will be for him, and of course, practicing acceptance. I have spent an extremely small amount of time hoping for a cure. I imagine once Griffin’s blood sugar management is more in his own hands, and after some of the initial life transition wears off, I may spend a little more time in that place, wishing. Hoping. But for now, most of the energy I have for this subject is tied up in learning more about it and planning and measuring and counting and watching the clock to figure out if he should test or snack or wait to eat so we can get an accurate test, etc. etc. etc.
People have remarked that he has responded to all of this very well, and that really is an understatement. He is easygoing about the blood testing (can do it on his own now!) and even about the shots. Every day I am thankful that he doesn’t push back with the needles. Since September 7th he has been poked about 750 times, between frequent blood testing and at least 4 shots of insulin per day. Yes, the needles are smaller than they once were. Yes, it’s great that he has a disease he can “manage.” Yes, he’s very young and this will always be his version of normal. All those things are true and are, most often, spoken by people who don’t have to watch their children go through this process every day, don’t have to approach every meal as a math problem, every blood test as a barometer of his health. And it’s not as simple as just insulin and food--activity and carb ratios and insulin sensitivity and blood sugar goals all have to be factored in--and can change on a dime. Since Griffin’s diagnosis, my empathy for parents of children with severe food allergies has gone through the roof. You can’t know the stress until you are in the situation. And we’ve been in the honeymoon phase! This is a legit and fleeting stage most type 1’s go through after diagnosis where levels are closer to normal... still a few beta cells hanging around the body that haven’t been killed off yet, doing their thing to keep his blood sugar normal.
One thing that helps tremendously is Griffin’s sense of humor. One of the first days we were home I was tearing up as I was getting ready for dinner. I was dreading the shot because the backs of his arms were covered in bruises from the insulin shots. I was feeling bad about having to poke him to test his blood, and after I did he squeezed his finger to get the blood out while saying, “Milk it... “ and putting his monitor up to the drop of blood on the tip of his finger while telling the test strip on the device to “Slurp it...” I had to laugh. He makes it easy to remember that this, while overwhelming and scary, isn't all that he is about. :)
Here’s what I know - Griffin’s acceptance of his diabetes and all that comes with it helps lead me toward practicing acceptance, too. His positive attitude shows me what work I have to do. And not just with his diabetes but with myself and my own challenges."
