in between

Somewhere in between hello and goodbye, there was love, so much love. ~ unknown

Dylan was on this earth, 21 years, 4 months and 9 days. Some of the best days of my life.  It is no wonder I am so equipped to honor him. It is something I did from day one. He was diagnosed at 6 years, 9 months.  For one year, he received injections twice daily based on a set amount of carbs per meal. This was not easy, as anyone with kids knows they do not always feel like eating "everything" or are not cooperative. In fact, I  don't always finish my salad which I myself plan. 

To say things became easy a year later when he went onto a pump is a lie; back in 1997 things were very different. The internet was just becoming useful but information was limited. There were no facebook groups, no instagram to "follow" people with similar lifestyles or interests, no apps for our phones to look up carbs and "diabetes friendly" recipes and there was no such thing as pinterest. Regardless, we were grateful to have the pump available to us and what resources we had. 

Our lives were not ideal for a very long time. However there was one thing that held our little tribe together; and that was love. Pure, patient, compassionate and loyal LOVE. 

Flash forward a lifetime; Dylan's tribe persisted. It was not always true (despite Dylan's opinion), life did not always revolve around Dylan. It revolved around a million other things like change, obstacles, a lot of moving, siblings, moving and more siblings. Dylan loved nothing more than family. If you knew him and he loved you, you were family. 

Dylan lived his life like he was unstoppable; and he was, until T1D took him. He dreamed of being a teacher and was passionate about being a good role model to children and teaching them. He dreamed of bigger places, traveling, having a family of his own, molding young minds in the classroom and on the basketball court or baseball field. Knowing what a loving, loyal, committed and influential young man he was, it does not surprise me how respected and loved he is. 

Not a second of my day goes by where he is not present, in my heart and on my mind. 

 

What would Dylan do?

As I sit and review the essays submitted for the 1st Annual Dylan Konakowitz Memorial Foundation 2018 scholarship awards, I find myself thinking about what Dylan would do. I find myself setting the three following criteria: heart, ambition and the future; three things Dylan always thought about. 

This is my first real blog, while I wanted to write,  I found I could not write about anything (although I certainly have plenty to say) until I had something of substance. Which brings me to this.... doing something in honor of Dylan. He loved life, he loved everyone and, while I certainly cannot imagine him somewhere other than here on this earthly realm, I can certainly imagine he is smiling. 

As I read the scholarship applications, I have found myself reminiscing, laughing out loud, and naturally,  crying (ok, sobbing). Dylan was many things, but two things stand out in my mind...... he was patient and he was kind. He may not have always liked it, but god damn it that kid was persistent (Channel Stewie from Family Guy)..... Ma, Mommy, Mamacita, Stacey, Momma, Ma, Ma, Ma, Mommy, Stace, Ma, Momma, Mamacita, Ma.... you get the idea! If EVER there was someone determined, it was him. And for good reason; he knew the secret. He compartmentalized, he forged ahead, he knew love and where he wanted to be. Many of us can say..... WTF? (I can hear Dylan saying that in true Connor McGregor fashion: "whoot da foock"? come on dude...... do a boy a solid  #connormcgregor, also something Dylan would say just hoping for ya know... recognition).

I had the pleasure of carrying Dylan for just about 39 weeks. He was my youngest, last born. Most say "spoiled from the beginning". Dylan was different. He was not my easiest honestly. That would be Jesse, the oldest of my twins. In fact, Jesse and Ana, who were almost 5 when Dylan was born, were by far easier than Dylan, yup......two were easier than one. Dylan was nursed from day one. Not out of choice, but  because to be honest I had too much to do and financially it was the best option (pre-WIC). But it was best for him and I did nurse him until about 8 months. At which time I was truly so worn down, formula was his best and healthiest option. 

Dylan was always full of life. He pushed me always in every aspect of my life. Mostly, I was too much or never enough. He knew without a shadow of a doubt that I was his biggest supporter and while I tried to "fit in" to his life of checking blood sugar, making good food choices (while of course bolusing for them), I certainly was not his best friend. I can say that while personally I do not believe in the role of parent as best friend, I was certainly his biggest advocate. That kid...was my end all and be all. 

 I love these kids graduating from high school. With high hopes and big dreams and I read their essays and take from them what I imagine Dylan would.

Dylan, you may have know him or you may have known of him. Regardless, he had your back. Dylan, the kid with the million dollar smile. Dylan, the kid who had the key to life; that kid, happier than anyone I have known in my life (as long as you did NOT take his clothes), his legacy is what keeps me going every "got dam" day!  (Mispronounced in true Dylan fashion)!

Sending love and strength to all!

Ma, Mommy, Mamacita, Stacey, Momma, Ma, Ma, Ma, Mommy, Stacey, Ma, Momma, Mamacita, Ma

A New Year

  • January 8, 2018- A New Year

It is with mixed emotions that I await a new year. A new year means many things to people.....time to reboot, a fresh start, new directions or goals, maybe just a reason to celebrate. But for me, it is extremely bittersweet! While beginning a new year means ending a dreadful year of sadness and heartache, I find myself not ready to begin again.

Saying goodbye to 2017 is much more than turning the page of a calendar. To me, it means beginning a new year with a huge gaping hole in my heart and soul. It means moving forward without a part of me. So, to me, it is really just a number:  2018. Just another day “after” the day that divided and changed everything.

I love you always Dylan! 

Dedication/retirement

  • December 11, 2017- the #11 dedication/retirement

First of all, thank you all for being here. There are no words to describe the appreciation we have to you all and to everyone in the community whose love, generosity and support has helped get us through this tragedy.

Second of all, no one knows better than a sports fan, or athlete, the importance of setting a record.

So, I would like to set the record straight regarding the cause of Dylan’s tragic passing.  I understand that there has been a lot of speculation, and there is no doubt that assumptions regarding Dylan possibly passing due to a self-inflicted alcohol or substance related death could be warranted; because, as we all know, Dylan loved life and he loved to be the life of the party. However, the medical report has determined that Dylan’s tragic death had nothing to do with alcohol or any substance use; in fact, the cause of his death was directly due to his type 1 diabetes, specifically failure of his insulin pump.  

I feel I need to correct this record, not only to preserve Dylan’s reputation and legacy, but to raise awareness of the seriousness of Type 1 Diabetes.  Approximately 1.2 million American children and adults have type 1 diabetes and Diabetes kills more Americans every year than both AIDS and breast cancer combined.  If you or someone you know has type 1 diabetes, learn as much as you can about it and please understand the seriousness of this often silent disease.

I am hopeful that with continued research a cure will be found for Type 1 Diabetes and tragic deaths like Dylan’s can be prevented.

Again, thank you all for the continued support.

With love and gratitude,

Stacey