— First, while I posted on D-Tales yesterday, it probably seems as though I’ve been MIA lately. There’s been so much going on.
My kids were home on fall break last week, and rather than spend time on the computer, I spent time with them. It was wonderful to have full days to do as we pleased and enjoy each other’s company. I recognize that the days with my kids, while they are young, are fleeting, and the days on which we have nothing scheduled are rare. So I really savored fall break.
I have carpal tunnel syndrome, and it’s been bothering me. So I have limited my computer time.
We’re walking in our local JDRF Walk to Cure Diabetes on October 30th, and we’re working our tails off to make the Walk as successful as possible.
Over the past few weeks, we’ve had several friends visit from out of town.
And then, of course, we’ve been dealing with diabetes. Jack has been battling a string of lows. We’ve seen too many numbers in the 30s, 40s and 50s lately.
So if I haven’t commented on your blog or returned your email, please don’t take it personally and please accept my apologies. I’m sorry! I haven’t been able to keep up!
— Thank you for all of your amazing support after I wrote about our troubles with Jack’s teacher. I can’t begin to tell you how much your comments and ideas helped. We met with his teacher this morning. We discussed the emotional aspects of diabetes. She was surprised to hear how Jack has reacted to what’s happened at school. She had no idea how embarrassed he’s felt or how much he’s internalized. She clarified a few things for us, and we made it clear to her that Jack is not to be responsible for his diabetes management or ever reprimanded for something diabetes-related that he neglects to do, like carry his diabetes kit from the library to the classroom. Gregg and I left feeling optimistic.
— Thanks also for the kind words you posted regarding the anniversary of Jack’s diabetes diagnosis. In some ways, it’s hard to believe that three years have passed already. In other ways, it feels as though we’ve been battling this beast for an eternity already.
— After receiving the news of Eilish’s death, putting Jack to bed last night was tough. I didn’t want to stop hugging him. I cried walking out of his room. I checked on him more often during the night to make sure he was still breathing, and I was so happy to see his handsome little face this morning. I’m sure my fellow D mamas were feeling and doing the same.
From what I understand, Eilish was diagnosed at the age of three. Her parents managed her diabetes for 10 years. That's 10 years of finger pokes, insulin administration, highs, lows, ketones, carb counting, endo appointments, middle-of-the-night checks, sleep deprivation, number analysis, dosage and ratio adjustments, fears about complications...and then their worst fear came true. Gregg and I are doing all we possibly can to maintain Jack's health and to enable him to live life to its fullest. We strive to get him the best medical care available. We’re teaching him how to best care for his body. We’re constant in the level of care we provide. Sure we make mistakes, but overall, we take damn good care of our son. It frightens me to think that we can fight long and hard only to have our worst fear realized. It terrifies me to think that no matter what we do, it might not be enough.
It is presumed that Eilish passed away as the result of dead-in-bed syndrome. I’m trying to maintain perspective. I’m reminding myself that while this is fresh right now, it’s also rare. Yet, one life lost is too many! And there have been a number of kids this year, who’ve lost their lives to dead in bed syndrome. Those kids should still be with us today!
And while it’s rare, I’d be lying if I said dead-in-bed syndrome doesn’t worry me. I try not to let it get the best of me. I'm generally a happy, positive person, who’s filled with hope and optimism. But I fear dead-in-bed syndrome as I fear nothing else. It’s the kind of fear that lurks deep within me and about which I don't talk much. It's always present. No matter how much I try to forget it, it's always there. I hate that I live with a fear like that. I hate that that fear revolves around my son.
Eilish’s death came ten days before our local JDRF Walk to Cure Diabetes. I keep thinking THIS is WHY we walk! THIS is WHY we fundraise! THIS is WHY we need a cure!
This is also why I blog. I must raise awareness and let other parents raising children with diabetes know that they're not alone.
This is why we check Jack every single night.
This is why I fight for his safety at school. Diabetes can be deadly. It’s not just dead in bed syndrome that can claim my son’s life, and it’s not just in the middle of the night that it can happen.
This is why I count my blessings and savor the time I have with all three of my little loves.
In addition to grief, Eilish’s death has brought to the surface feelings of guilt. I do not worry about Madeline and Max the way I worry about Jack. They do not have diabetes, and I have the luxury of kissing them good night or good bye and not worrying that I won't see them wake up in the morning or walk home from school in the afternoon. (Of course, anything could happen, but the chances are slim with them.) I have such intense emotions regarding Jack's well-being, and his diabetes requires such vigilance, that I feel guilty for not thinking as much about my other children. It's not that I love them less. It's that I love them differently, because I can. I'm deeply grateful for their good health, but at the same time, I fear that I do not give as much of myself to them as I do to Jack and therein lies the guilt.
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