It has not been normal December weather. Last night, coming out of church, Eleanor and I spotted the full moon, and as we looked up waiting for my wife Katie to join us, it felt like a comfortable September evening. For a brief moment it WAS a September evening. This feeling, only a flash, was fleeting as September quickly became a time in the long distant past–a month before my daughter’s Type One Diabetes diagnosis.
I am thankful for many things. After a Fall full of challenges, my list of appreciation has gotten longer. It is a list that now includes LeBonheur Children’s Hospital, The Juvenile Diabetes Research Foundation, and most poignantly, all the people who have raised their hands and opened their arms to be helpful to us and to our daughter as we adjust to a world of checking blood glucose, delivering insulin shots, recording numbers in an ever-thickening notebook, counting carbs and dividing them by forty. Eleanor has been in what is called the Honeymoon Period–worst kind of honeymoon ever–when her pancreas tries to do its old job and is only capable of inconsistency in insulin creation. As a result, she has been on a roller-coaster of blood glucose lows and a few highs. She has eaten a life-time supply of Skittles, fifteen at a time.
Another part of our new ritual as parents is getting up at 2:00 a.m., strapping on a small headlamp, and going into Eleanor’s room to do an overnight blood glucose check. Katie has taken the lion’s share of these checks, while I have done the weekends when I can sleep in the next morning a bit beyond my normal workday alarm time. 2:00 a.m. is a weird time when I don’t want to wake up enough to be too alert to go back to sleep and I don’t want to be too asleep on my feet as I need my wits about me so I can prick her finger and get a reading. The 2:00 a.m. check brings me back to the weather. A wicked storm arrived, pulling Katie and me half awake by 1:30. The sound led me to snippet dreams of Atlantic surf–the constant rumble, punctuated by waves crashing and driving to shore. The ebbing and flowing thunder, the growl of the rain were strange visitors for December and certainly for Christmas morning. I felt as if we had mysteriously landed in the other hemisphere where such weather might make some sense.
When I went into Eleanor’s room, she only awakened enough to give me her hand (such a thin thing her hand, warm from having been wing-tucked under her side). You might be tempted to think her hand, soft and livid, was a metaphor for her own delicacy. Not so. Not a bit. She didn’t even flinch at the prick–in the daytime she can be laughing and talking at the same time she does the does the check herself. I was never as tough as my daughter. 106–a good number.The storm held on for hours. I fell into and out of sleep and thus into and out of this storm. I was comfortable and warm, reconciled to a spotty night’s rest.
Rotten and loud as it was, this unusual weather was not all curse. Neither, I think, is my daughter’s diagnosis. Trust me, we are not thankful that Type One has come into our child’s life and made clear it is here to stay. I hate it for her. Everyday I hate it for her. I hate it when she has to sit out of swim practice, or covertly check her blood while sitting in a classroom or church pew, or shed angry tears when her long acting insulin dose burns and burns.
There is, I think, a blessing here, however: nothing has made it more clear to me that we are, the three of us, all part of each other, stronger because of each other. Her diabetes makes the connection between us physical, tied together through blood and daily, increasingly mundane, rites. Her diabetes is hers, but it is also ours. Eleanor gets four shots a day–one with each meal, another long acting insulin shot at bed-time. Eleanor gives the lunch and dinner shot to herself in her legs. Katie gives her the morning shot in her left arm, and I give her the night-time shot in her right.
Katie and I each have an arm of our daughter, but make no mistake, she is walking on her own two legs. The weather looks dicey for a few more days. Who knows if real Winter weather will ever reunite with its appropriate season around here. Eleanor is across the street at a friend’s house, playing with make-up and dreaming of putting her new wakeboard into heavy use next summer. She just texted that she is low–65. In another 15 minutes, she’ll check again.
Robert Ryshke says
Ross, Katie and Eleanor:Wishing you all well from Atlanta! While your lives have been transformed I am delighted to see that you have bonded together to tackle the challenges ahead. I love you winter story!Merry Christmas and Happy New Year!
J Ross Peters says
Thanks for this, Bob. Good to hear from you! Merry Christmas!
wmmcc@me.com says
Ross,What a beautifully written piece, and one that brought forth many memories and experiences from so many directions.As you may recall, I am one of eight children, all very close, still together after so many decades.My youngest brother and his wife Anne have three sons and a daughter.All three boys developed type one in early childhood. As a practicing internist for almost 40 years, caring for many type 1 diabetics, I have never known of another sib-ship with three cases, but there it is.A house with a dedicated room for glucometers, needles, lancets, a special refrigerator for insulin supplies, and a Mother and a Dad who have spent anguished and joyful times raising these three rascally boys. The oldest (Westminster alum) is at the University of Colorado in the last phase of his PhD in diabetes and muscle physiology, preparing for a research career in diabetes. The second (Westminster alum) is finishing as an art major at Hillsdale College in southern Michigan, and the third is a sophomore at Belmont University in Nashville studying videography.Their lives continue to blossom, they continue to measure and inject on a daily basis, and each pursues his own muse.JDF is a wonderful organization, and one with which we are all familiar here in the Atlanta.I wish the best for you, Katie, and Eleanor in this new adventure. Eleanor will blossom and welcome the life before her, with a little more attention to how she eats, and to the medicine she must take. But she is likely to see tremendous advances in her lifetime that were never there for your and my friends who had to travel this road when we were youngsters.We miss you in the Great Books Club, which continues to grow with engaging conversation every six weeks.Merry Christmas and God speed on your new journey….Bill McClatchey, Atlanta, GA >
J Ross Peters says
Bill,It is great to hear from you! Merry Christmas from all of us. I appreciate every story I hear about people living successfully and fully with diabetes. I miss the Great Books Club and am comforted to hear it is growing. I’d love to know what you all are reading. All best…here’s to a wonderful 2016! Please say hello from all of us to Carolyn. R
Jennifer Dooley says
Thanks for sharing our 7 year old son will be 4 years dxd next month it has been a roller coaster of everything he is getting at the do i really need to get a shot stage we really want him to give the pump another try but he’s wanting no part of it at least he is liking his Dexcom. I am starting to forget what life was like before type 1 diabetes 😿 It does get easier hang in there
J Ross Peters says
Thanks so much for reading and commenting. I appreciate every time someone tells us it gets better.
admiral17(RB) says
Ross,Sorry it took me so long to read this post. It is powerful and beautiful in the same way the storm was. I trust Eleanor is progressing toward some stability. I cannot speak to the specific disease or the pain of being a parent in such a situation, but I do not that you, Katie, and Eleanor will find the rhythm to deal with her condition.Thoughts and Prayers for all three of you.
J Ross Peters says
Thanks for this, Rick. Eleanor is doing wonderfully well sorting it all out. Taking charge and maintaining her good humor. We are lucky she is ours.