mom – DiabetesDad

Make No Mistake Moms and Dads, It’s Your Graduation and/or Awards Day Too!

Posted on May 23, 2019 | by tomkarlya | 2 Comments

Congratulations, milestone reached.
I always love this time of year as people post all of the great accomplishments that their child achieved. Graduating High School, Graduating College, and whatever they call, these days, cap and gowns for kindergarten and/or middle school. Step up–graduation?…..whatever…..your child is moving on in life.

Wonderful news.

Silently, I have always found myself to be prouder in my mind when I know someone with diabetes has reached one of these milestones. Any child that has an obstacle in life, and overcomes it to move forward, is worth mentioning. We see so many stories of kids who have major disabilities receiving degrees and it just warms our heart, doesn’t it?

But our kids who battle T1D, they don’t look any different from their peers, do they? When you meet them or first see them, there is no appearance of the challenges they face. But make no mistake, they are there. I remember the story of a parent who during their child’s graduation ceremony, noticed their young son wavering back and forth as he stood at the end of the ceremony.
“Oh, oh!”
And just in the nick of time the parents were waiting for him when he left the ceremony to give what was needed to tend to the glycemic reaction.

The photos don’t show that.

The photos show arms around family members and friends celebrating graduation from high school. The photos show smiles and good times. No one would look and say look what the young man achieved, even with the illness dealt with 24/7/365. No one would say, what a heart warming story that despite; sleepless nights due to diabetes, adjustments made to play sports due to diabetes, rearranged schedules all through middle school and high school so lunch was at reasonably time adjusting to diabetes, countless trips to the school and school nurse due to diabetes, fighting to make sure they are not left behind in school trips and countess activities due to their diabetes no one would, really, even know.

But you know, don’t you mom and dad?

So when YOUR child who battles T1D; graduates, ‘steps up’, receives an award, attends sports night, gains entry to an honor society, is named to the homecoming court, named to the prom court, wins a race, aces a test, achieves success in the robotics club or whatever club they participate, are pinned, white coated, named valedictorian an/or just live life to the fullest—-well you just enjoy that huge smile on your face a little bit more than so many others who DO NOT understand the lives we lead.

And should it be forgotten for the moment, or not even known by outsiders, that your child has T1D at these ceremonies………we, as parents WILL ALWAYS KNOW, won’t we? Because the fact that we will NEVER forget drives us with everything we have to make sure our kids never forget what they really are……..kids like everyone else.

So let me say to all of you parents, congratulations on another wonderful year of your child’s achievements. Because unlike many others, your child achieved everything they did this year despite, and in spite, of their type 1 diabetes.

I know that smile, and those tears of joy, you will have on your face….and you enjoy EVERY second of it! Congratulations.
I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Moms

Posted on May 10, 2019 | by tomkarlya | Leave a Comment

Mom.
Is there really a more soothing one-syllable word in our language? Not really sure what the ‘role’ of a mom is, by design, anyway. Who could ever write ‘the manual’ describing what a mom should be, or what is required? And yet, so many are so good at it. I’ve known many ‘moms’ in my life and two will stand out above the rest in my eyes, for as long as I live.

The first, is my own children’s mom. If you are not new to reading this column, you have heard me say before how lucky my kids are to have such a mom as Jill has been, and continues to be. Life comes to everyone and we have seen much and also been vocal on some things like our kids living with diabetes, and many other things we have kept to ourselves. Continuing through what life throws at you is not easy and Jill has made it as much an art form as a survival technique. And all the while, our kids knew nothing more than a wonderful and nurturing environment.

Not easy. From school involvement, to caring for them, to being their best diabetes educator, to being their confidante, to being strong, to being soft, to hugging, to wiping tears, our kids had it as good as it gets when it comes to mom.

This is my first Mother’s Day without my mom. And, truthfully, it hurts. Mom demanded the best out of each of us and also taught us to fight for ourselves when needed. Her three daughters as well as her three sons. Equality was not a word in our house, it was a way of life of which we knew no other.

My mom was strong, funny, smart, up-do-date, and wise. She was so wise. Her advice was not always what we wanted to hear, but it was usually pretty spot-on. She, too, had seen her days of pain and hurt, and she too stayed strong knowing that life always moves on.

The scales of mom’s life had everything on one side of the scale in living to be over 90, having six kids, 23 grand children, 18 great-grandchildren, traveling the world, had a successful career, she died very quickly and not a long illness, and yet, the scales are outweighed and tipped by the one fact; she is gone.

When mom left, I was comforted by the fact that nothing was left unsaid between us. We always ended our calls, which were many, the same way; “I love you son.” “I love you too Moo-Moo”. I was lucky to have such a mom as the one I had.

I miss her.

Make sure you do something special for your mom this Mother’s Day (and every day for that matter). I can tell you from experience, the hole left behind is great heading into mother’s day without someone you loved for 60 years, and who loved you back unconditionally, just because she’s your mom.

Happy Mother’s Day Moo-moo.

I’m a DiabetesDad
Please visit my Diabetes Dad FB Page and hit ‘like’.

Diaversary……#20…….Really?

Posted on September 26, 2012 | by tomkarlya | 8 Comments

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 26^th 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 20^th 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

Posted on September 16, 2012 | by tomkarlya | Leave a Comment

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?

Posted on September 9, 2012 | by tomkarlya | Leave a Comment

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 !!!!

Posted on September 6, 2012 | by tomkarlya | Leave a Comment

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.