Diaversary……#20…….Really?

  

It’s today. 

 Twenty years ago.

 Today.

 Sigh.

 It’s not ‘Happy’ Diaversary….it’s just there; a milestone. Twenty years today.

 As I think back to that September 26th 1992, when at the age of 2 Kaitlyn was whisked to Stony Brook Hospital; medical staff ran around tending to her; tubes were attached; pain was administered; tears were shed; more tears were shed; I raced from New York City; I entered her room; she looked at everything attached to her; I pushed the hair out of her eyes, and I spoke:

 “Hi Honey.”

 Looking at all the wires and the tubes, “Daddy?”

 “Yes honey.”

 Looking straight into my eyes: “Fix.”

 More tears were shed. 

 Our lives would change……..forever.

I promised her that I would not stop until a cure was found.  I told her, as the song from Broadway’s Shenandoah states, “Pappa would make it all right.”

And we have tried.  We are more determined now than ever before.  We’re more convinced than ever that my promise to Kaitlyn will be fulfilled.  I have met the most incredible people on this journey.  Too many to start to thank, or even name.  I thank you all. 

But on this, the 20th Diaversary of Kaitlyn’s diagnosis, I need to thank someone.  I promised her once that I would leave her out of my writings because she hates reading about herself.  But on this date I need to be a bit off the norm, as they say.

I will keep it real simple but it is the most powerful statement I have ever issued.  In as much as I (and yes with a biased) think Kaitlyn and Rob are truly so remarkable, I am one thousand percent convinced that my daughter is alive today with no complications, and Rob is doing as well as he is, because of my wife, their mom; Jill.  She did it right and continues to get it right 24/7/365.   She will tell you otherwise, but that is how she operates.

The gift of a child’s well being is probably the most precious gift any parent could ever have and the reason in our house is Jill, and I thank her from the bottom of my heart. Period.

I know because, you see, I’m the Diabetesdad.

 

 

A Sibling Making a Difference…..Today’s Sunday Hero

No one knows how hard it is to be a sibling of a child with diabetes.  No matter how hard we, as parents, try to balance the playing field our child(ren) with diabetes demand so much more attention.

But we certainly try, don’t we parents.  My Sunday Hero is Jonathan.  Jonathan is a Senior at his high school in Florida and he created a program where siblings can make a difference too.

Jonathan’s “End Zone” is for siblings to run an event and ‘not just do nothing”.  Jonathan and his family are very active in diabetes causes and Jonathan spent his summer volunteering in the local office of the diabetes organization they support. 

It takes a lot for a teenager to give up their time.  It is crystal clear that Jonathan is not only dedicated to curing diabetes but it is quite clear of the love he has for his sister.  That is not only commendable; it is downright inspiring.  Taka  a bow Jonathan, you are Diabetesdad’s Sunday Hero.

Do you know  a Hero?  A child with or without diabetes who is trying to make a difference?  Reply to this post and I would love to feature them here…..in my Sunday Hero.  Kids are amazing and kids with diabetes…..are still just kids. 

Happy Sunday…..I am a Diabetesdad.

 

 

 

 

Is your Child a Daily dHero?


Our Kids.

Wow the things they do.  The things they put up with every day.  Whether they have diabetes or they do not have diabetes; the fact that diabetes is in our households makes them live each and every day in a way that no one will understand but us; their parents.  The new norm as they say.

One of my Diabetesdad articles I wrote a while back was called “life with an asterisk”.  It is exactly the phrase that our children live with every day.  They are more resilient than we, they are more afraid than we, but still they go on.  And some go on VERY STRONGLY!

So I have decided that my Sunday blogs will be dedicated to highlighting a child up to grade 12 that has diabetes in their household (siblings also; absolutely).  Sunday should be a family day and my Daily dHero will start next week.  I will only mention the first name of the child and the state they live in just to keep it very safe. And I will highlight why they are a Daily dHero.

Our kids are special.  Tell me why your child should be considered by replying to this post; none of the replies will be made public.  Highlight what they do that is special at home, at school, or in their community.  Anything that they do despite/in spite/with their diabetes.   Make sure you include what state you live in, and when diabetes entered your household.  Remember–siblings will be highlighted also. If I chose your child to be highlighted, I will email you for a picture or I will take it from your FB page.

As we say at Children with Diabetes; kids with diabetes are still just kids.  But they are special, so let me know.  I am a Diabetesdad.

Please God, with Everything that is Holy !!!!

We are the diabetes community. We are. We are not short for words. When we have an opinion, we speak. Today, I am asking you to have an opinion. In fact today I am asking you to scream. I am asking you to rally around one family.

Why this family? We all have problems; we all have to deal with what life throws at us; why this family? The answer is this: sometimes no matter what we go through, when you see someone going through absolute hell, you can step up to the plate in some way.  A way that will help no matter how small.  A way to show you care.

This is what Meri Schuhmacher wrote on her blog today. Meri has 4 boys (ages 16-14-10-8) and 3 of them—3 OF THEM–have type one diabetes. Her husband, a young man, passed away last weekend. Six months ago he was strong, vibrant and active; he was diagnosed with brain cancer; and his battle was lost last weekend.

Here is what Meri wrote today on her blog:
Aching
I wasn’t expecting it.
Looking back it should have been more clear to me what was happening, but in the moment…I was just coping with him. Loving him.

How everything happened last Sunday is so personal I can’t write it down here, but I can tell you that without a doubt…we received our miracle.

I sit here completely humbled, and shocked. How God got away with this without me cursing him is the monumental miracle itself. Each detail of the last week was carefully seeded so that on the other side I could not deny this timeline was always set. It just wasn’t for me to foresee.

My body is barely hanging on. I am so weak, and tired, and aching. I ache everywhere. But my brain is working overtime…leaning on the muscle mass it has gained the last few months.

I wish I could turn it off. I wish I could flip a switch and give my body a break from feeling it all.

I wish I could know exactly what to do for the boys, and what to say. I hate guessing my way through something so important. They are my number one priority right now.

He fought the fight so valiantly. Last night as I was staring at the wall trying to convince my brain to sleep, I realized that not once did Ryan ever complain. He never questioned why this was happening to him. He was only always positive. Hope was the only option in this house…it was how he lived. Finding the joy in the little things was his legacy, and looking back I do not regret one minute of our journey.

I hope one day to be able to follow his lead and live with the assurance that all will be well. Today that seems impossible. Nothing is well. Saying I miss him is not even close to the pain that I feel. He was my everything. My favorite. The love of my life. My best friend. He got my sense of humor. He never judged me. For the past 20 years we did everything together…our hobby was each other.

Writing things out is my best therapy. Letting it out and knowing my feelings are there to look back on help me get through. I don’t know how long it will take me to navigate this road I’m on…maybe forever…but I will continue to come here and lay it all out.

It is my way.

I hope that it will help me get through this day. And then tomorrow I’ll figure out a way to get through that one too.

Thank you for raining down love and support to me and my beautiful boys. Thank you for your tears, and for being my friend.

I don’t know that I can do this. I’m completely scared out of my mind. But I know that Ryan knows I can do this, and that gives me the hopeful inkling that maybe, just maybe…I will.

—MERI

Imagine the size of Meri’s ‘blue candle’; imagine her heart, imagine her life.

Is it enough to only hurt for her or can we do something?

What Meri does not do on her blog is ask for help.  It is why I copied what she wrote instead of just sending you to her site to read it.  With everything that the God of this earth may find holy I’m asking you to do one of two things (or both if you are so inclined)…….today!
This link:
http://www.giveforward.com/schuhmacherfamilymiracle2
1. Go to it and donate.
2. Go on Facebook and share this link with everyone including your own words how important it is to make a difference for this one family. Have your kids go on Facebook and share with everyone and anyone asking to help.

Really? 3 kids with T1 and now no husband, father, and/or best friend to help get through every day. How bad do we actually have it that we cannot, on this day, help a family from our very own community?

All of our collective causes will all be there tomorrow, I promise. Today, to actually have the power to touch a life; is the power to change a world. Let’s do it together…….thank you.  I’m a diabetesdad.