The Juice Box on the Nightstand

Juice boxOh yeah……diabetes……that?……yeah; no—-it does not go away.  Kaitlyn came to visit with us last weekend.  If you don’t know my daughter I will let you in on the fact that I have stated a million times; that she is the type of person who honestly becomes excited when opening stocking stuffer gifts at Christmas time. She just loves life and her love for life is infectious.  Always was……..and hope it always will be.

Kaitlyn was in town to shop for a wedding gown, which she did with her mom.  Her excitement was evident and off they went.  When she speaks of Andre, her fiance; what’s new at work; or her wedding plans…… feel all she feels as all of the excitement just shines out of Kaitlyn.  When you say her name to people, they usually smile.  Kaitlyn does that to people.   Just like her mom.

We have always taught our kids that wherever they go to leave te place better than when they arrived.  I dropped her off at the airport and returned home. The house surely felt a little emptier than it was just hours before.   As I ‘busied’ myself I went into Kaitlyn’s room and saw the juice box as I pictured it above,

I sat on the bed and cried.

It served as a reminder that the work we started is not done.  It cannot BE DONE until our kids are cured.  Kaitlyn has been out of the house now for years, and yet the juice box that remained, served as a stark reminder that no matter what she does; no matter the successes she has at work, in life, and reaching personal goals the fact remains that she crashes through diabetes ‘to get it all done’ and it reminds me yet, again,  she still lives with the beast that moved in when she was just 2, over 25 years ago.  I’ve not forgotten and, surely, neither has she.

So when people ask me why I’m still ‘at this’ with the same energy I’ve had since day one, my answer is simple……because I hate the juice box on the nightstand.  Always did, always will.  When the juice box goes away…….I’ll take a break………not one second before.  Because I promised her that on September 26th, 1992……and that promise is sill as strong on May 18th, 2017.  We will get there baby….daddy promises.  Still.  Kknn.

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10 replies on “The Juice Box on the Nightstand”

Oh Tom, we all get it, and after 20+ years it hurts no less, concerns us no less, and motivates us no less. We are all with you and our kids, and will fight until it’s over and the beast is cured!

Oh Tom, of course you did and we cry with you, that picture gives me goosebumps or you look in the garbage and it’s nothing but juice boxes, pump supplies or even syringes:(

I recall the look on my mom’s face when I was Dx’d. Mom had lived with diabetes for 14 years and was in awful physical shape. Her smile was pasted on but her eyes showed me that what she feared might have come true, but she also knew she had renewed purpose.

Many years ago I inherited that purpose, which is to never visit this on my grandchildren or their children’s children. Today I stand on my mom’s shouldres and I hope future generations can stand on mine.

I hear you – I get it. My son is 26, been TD1 since 13. I wish I had stock in Juicy Juice boxes – 15 carbs, right?! The other day my son was having a fantastic time with his cousins. I glanced over at him and saw his insulin pump hanging out from his shirt. For a second it took me right back to the chaos of the day he was diagnosed. I had to go in the basement to cry for what his life has been and continues to be. So I’m with you Daddy. Some day soon, the pain we feel for our babies living the TD1 life will begin to fade, because the juice boxes, pumps, and all that goes with it will go away. The cure is coming.

Thank you for the beautiful story! All my best.

Lou’s Mom

After more than a decade since my son was diagnosed T1 I am so sick of reading about how we almost have a cure, or that T1D has been cured in mice. The recent proclamation of how a woman has been insulin free as a result of a Biohub envelope loaded with beta cells derived from stem cells that was implanted in her omentum (instead of the liver) is just another example. What most articles failed to mention is the patient’s never ending reliance on immuno-suppressant drugs – which are far worse than the diabetes. Islet transplants with IM drugs is nothing new and this news is just another false hope.

I’m tired of having my hopes dashed and heart broken time and time again by the medical community. When can we see decent responsible reporting on T1D research, without the continued hype of “cures’ that are no such thing? Can we get doctors to stop making false promises? I swear I’m going to punch in the nose the next endocrinologist who smiles and assures me that we will have a cure in three years. I feel like we are getting played by a medical industry that wants to commercialize this disease instead of cure it.

Dammit, where is the cure?

I hear your frustration and I can tell you, as also being a member of the staff of the Foundation that supports the Diabetes Research Institute, that we do not hide the fact that the patients are on immunosuppression drugs… is not a cure…..but it is all a process. I have never believed the cure would be here ’round the corner’ when we started this journey 25 years ago when Kaitlyn was 2. But I have watched many abandon a good deal of resources toward that search for a cure, and it’s my sincere hope that many do not join the belief that ‘there is just no way’ this can be solved. I believe 1000% that those with T1D need the best tools available for management and it is my hope that they continue to get better, faster, smaller, more accurate, AND affordable. People do not need to agree with me and I get frustrated too but I am also under the belief that if we do not continue to work at this…….who will? I will stay at this and follow the meaning…..research—re, to do over—and search, to look for—research, keep looking, until we get there. Mine is not a pie-in-the-sky attitude it’s a feeling in my heart based on years of watching developments, successes, and failures. And although it may not be the most popular belief, it’s my sincere belief one day we will biologically have something that will reverse this. Tomorrow? No. Next year? No. But I attend the ADA conferences and some of the work that is happening around the world is extremely fascinating. That said, this is how I feel and what I write about. Each and everyone has their own opinions and I welcome them. I know people who believe that a cure will not come and have decided to spend their lives educating others how to best treat and manage their own diabetes, and others still, raise millions of dollars and help those who cannot afford supplies worldwide…..what I truly hope is that none of us just throw up our hands and just do nothing, there is much to do and as I stated—-if we don’t do for our own….who will? The diabetes state is no different than any other disease state… almost every facet. Fast enough?????…not for me. But I’m in this until it ends. Thanks for writing.

My daughter was diagnosed at age 3, she was very sick her A1C levels were at a 10. I had no idea what type 1 diabetes is, My husband and I cry so much hoping for a cure. We dont sleep a full night sleep anymore at night her level goes down to 40-50. She just turn 5 two weeks ago and as parents we have also promised to find a cure. That juice box by the night stand is also the same in my home. Not to many people understand, what a parent of a type 1 goes through everyday. I have had people tell me it will go away when she is older, or stop giving her too many sweets, which makes me so mad because even before her diagnosis we always watched what we ate. Thank you for your blog this is the first one I had read so far and as a new mom to this community it gives me hope that there is people who really want a cure and not just what works best to treat. A cure where our children no longer have to suffer with this disease.
Thank you for sharing!

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