Witness acts of amazing kindness…

My son’s cub scout pack was invited to spend the night aboard a WW2 Navy ship. Reading all the ‘rules’ before going…no food/drink allowed on ship, no food/drink anywhere but designated areas, eat/drink what is served, when served, and only where you are told you can eat/drink. Yikes! T1D alarm bell sounding here! On many adventures we have been stopped for Frankie’s diabetes kit. “Can’t bring that in.” Then explaining to the staff, who call a manager, more explaining, a call to another manager, even more explaining, and  a look of “let’s just forget it” on Frankie’s face. So we ask ourselves before any adventure–do we go? Since diagnosis 3 years ago there have been countless times I needed to explain and defend the medical needs of my son at ball parks, museums, movie theaters, and such. To defend THE KIT. It has happened so often-that it is expected. A fellow diabetes parent once wrote about himself and his wife and their most important role as parents of two children with type 1 diabetes- ” to make sure we did everything we could to minimize its impact in their lives.” I try to live by this motto–and in all times of uncertainty-ask myself–would he go if he didn’t have T1D? When the answer is yes-we go–as prepared as we can be for all and everything T1D may throw our way.  So off we went…and I was prepared to defend THE KIT.  I arrived at the ship, with my kids in tow, ready to do just that–but I didn’t need to. Frankie’s Scout Master already took care of notifying the ship’s staff of his condition and the need to keep food/drink with him. No problem. Kudos to the Scout Master and awesome staff on the USS Slater!uss slater 003

Some amazing random acts of kindness…

-The BIG one-no issue with bringing his diabetes kit on board, eating/drinking anywhere if he needed to-without any need to explain T1D and why food is medicine for Frankie.

-being offered food from the staff, their OWN food, if needed

-Frankie’s friend, letting me know that he didn’t think Frankie looked right, that he might need some water or insulin. Watching out for his buddy.

-A staff member checking in with me mid-day to make sure Frankie was okay & to ask if there was anything the staff could do for him.

-Frankie’s Scout Master, as he passed him on deck, just a glance-but he noticed-Frank without his kit bag and he stopped-turned to Frank and asked “where’s your kit?” I was behind Frank, with the kit, but the Scout Master didn’t see me at first. He had diabetes on his mind, just like I did–and was on watch–just like I was! Gave each other the thumbs up and continued with our tour of the ship.

-Frankie’s friends guarding the doors when Frankie needed his evening Lantus injection. They know it get’s injected in the rear end and wanted to give Frankie some privacy.

-Male and females had separate quarters on the ship. This did not cross my mind before the trip. Again, Frankie’s Scout Master to the rescue. He placed Frankie next to him-so he could watch out for Frank & handle any issues that may arise during the night by calling my cell phone. Frankie, due to the heat, was having some high BG’s throughout the day and into the night–1/2 hour after bed time Frankie announces to the Scout Master-“I don’t feel right.” and the Scout Master brought him to me and arranged for him to bunk next to me the rest of the night-so I could give insulin and overnight BG checks.

-The staff checked in with me and offered to let us sleep on deck if needed because it was so hot in the bunks. ( What heat will do to BG’s! We sat on deck for awhile while Frankie’s body did a cool down.)

-The staff let me know where I could find them during the night-in case of emergency.

None of these acts were mandatory. This is my son’s disease, and my job to keep him as safe as I possibly can. I get that. They must let him care for himself and carry his kit-but no one-at a museum, a movie house, a ball park, at scouts, or on a WW2 ship–has to take on THE WATCH. No one-has to be aware at all times- like his parents are, like he has to be, like his sister is–every day, 24/7. We brought diabetes on this trip–not anyone else–knowing that ‘watching’ is what we would do.  To have so many, keep watch along with us, I am unable to express in words my overwhelming thanks for such support.

It is true that living with diabetes often times is a hardship, a struggle, and kick in the teeth–but it is also a blessing.  Yes, it is a blessing to witness and receive acts of amazing kindness.

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To the MOST WONDERFUL Dad…

You cried when they told us Frank had this disease,12-63DB72CD-1062691-800

A bomb dropped- that caused time to freeze.

Frank sat on your lap, through tests and blood draws,

Your love and encouragement never hit pause.

“You can do this my man, we are in this together.”

He learned on your lap-this disease is forever.

You won’t let it stop him-you do all that you can,

To make sure he grows to be a very old man.

You take on the tasks of an unrelenting condition,

You’re a doctor, a nurse, a mathematician.

You work through the day, and check your son through the night,

Always on watch- to make sure your boy is alright.

You make sure he knows that dreams still can come true.

I hope he grows up to be just like you!

You make sure your daughter does not feel she takes a back seat,family 2011 007

behind all the demands T1d makes us meet.

You take time for soccer, board games, and such,

You’re a taxi, a teacher-you do so much!

Your actions each day shout out your love,

For your boy and your girl-your gifts from above!

To the world’s greatest Dad-Happy Father’s Day!

We love you more than words can say!

2013 tour de cure 180

Now…WE RIDE!

epic 2013 June 9th is the Tour De Cure. We signed up for this so many months ago and I can’t believe the day is here already! The riders have practiced, prepared their bodies and their bikes, raised $$ and raised awareness of this monster called diabetes.

I am filled to overflowing with pride for my children, my husband, and our friends. I am overwhelmed with gratitude for the generosity of the people who donated to our rides, gave words of encouragement, and volunteered to help at the event–because they love Frankie. I am amazed at the work, the energy, the commitment from the staff at the American Diabetes Association–this is not a job for them–it is a calling.

A part of me, deep down where I try to hide it, is near tears- because I am scared of letting my 9 year old  type 1 diabetic ride 15 miles on a bike. Will his BG drop and Frankie not feel it? Will he stop if he needs to–or press on in determination? Will he be okay?  My brain knows he is with Dad, his sister, his aunt, and his friends. My brain knows that there are medical personnel ALL over this event–just in case. My brain knows he will be cared for, will be safe, but my heart worries. That is what Mom’s do.My worry will not stop him–just as diabetes has not stopped him these last three years.

When our friend Jody Bishop, also a type 1 warrior, told Frankie about this ride–I could see the light pop on in Frankie’s eyes and I knew–right there–Frankie was joining the Tour! In a blink, Rachel was riding, Dad was riding, friends were riding, and what I thought as a family we were going to ‘discuss’ became a ‘we are doing!’  no discussion necessary.

When Frankie was asked to be the Youth Ambassador for this ride by the American Diabetes Association we were so proud. Frankie was beaming when he received his ‘Red Rider’ shirt.albany 182 (Red Rider’s are people in the Tour De Cure who have diabetes) Frankie spoke at the Tour kickoff dinner and he said “I ride because I can! and I want other kids with diabetes to know they can too.”

So, I’m scared, just as I was the day of diagnosis and  have been with all the  other hurdles diabetes has thrown our way–but Fearless Frankie, our T1D warrior, will get a hug from me, a good luck kiss, and he will ride–and I will be amazed by his resilience, his bravery, his “I ride cause I can” attitude. I can’t wait to see him cross the finish line!

Thanks to all and everyone for your support, your donations, your hugs, and especially your love!

Now…WE RIDE!