Embracing Life & the Child with the Disease

It’s Thursday and today I am thankful for D-siblings.  

One year, five months, two weeks and two days ago (Ryan’s dx date), I was not only concerned about how I was going to manage diabetes and the daunting, 24/7 task of taking care of a diabetic child, but I was also majorly concerned about the effects the diagnosis would have on two others . . . Ryan’s older brother, Ethan and younger brother, Aaron.  That day, I became a d-mom and they became d-siblings. 

We often use the term d-mom, d-dad, d-parents and even d-wife, but I don’t know that I have ever said or written the term “d-sib” before.  But too often, they are the most overlooked kind.  And they don’t deserve that. Nope, not.at.all.

I think d-sibs are the unsung heroes of our d-families.  And I want to share a little about Ryan’s d-sibs, as I have done so many times before. 

Ryan's Little D-sib

Aaron.  He was 4-1/2 when Ryan was dx’d.  He is and has always been my sweet-tooth child.  LOVES candy.  LOVES cake.  LOVES sugar.  One of his favorite things is the little bag of powdered donuts.  He has the negotiating power of a seasoned lawyer when it come to asking for candy or that “one more piece.”  And a grin will melt your heart.  Rotten to the core, but just a big, chubby bundle of cuddle.  He possesses a crazy sense of humor with impeccable timing.  Kinda like a mini Chris Farley, sorta.  He stands looking at himself in the mirror when I’m gel-ing up his hair and makes faces at himself, like he’s practicing.  I’ve heard that’s what Jim Carrey used to do.  He’s just a big ball of fun who will do anything for a laugh.

I literally feared coming home from the hospital to Aaron.  I worried that the change in lifestyle and diet and food habits would muster up some really negative feelings with Aaron and cause him to really be angry with me, change his personality and even resent Ryan.  I wept in the hospital even thinking about it.  How do you explain to a four-year-old that things are going to have to change and it’s not Ryan’s fault.  I worried about the raw honesty that might surface.  I was just scared about how it would change him.

None of those things that I feared came true.  Not one.  I packed all the candy (we did have quite a bit lying around in plain sight, it was Christmas-time!) and put it in a white plastic 12in x 18in tub and put it on the top shelf of the pantry.  No complaints.  No begging.  Nothing.  One of the first times we went grocery shopping after Ryan went back to school, Aaron saw that bag of powdered donuts and asked, “Does Ryan have enough carbs for that?”  Biting my bottom lip, I said, “No.”  And he just said, “Ok.”  He willingly submitted to only eating at allotted snack times.  It was easy.  Whenever Ryan ate, Aaron ate and they ate the same thing.  And it was all ok.  And for a very long time, his compliance would make me cry.  But now, it makes me swell with pride.  He surprised me and makes me proud, so proud.

Facial Expression Mastered

And the humor with Aaron definitely was a difference-maker as well.  I remember vividly, just a few days, maybe a week or so after coming home from the hospital, we were all sitting at the dinner table.  Ryan was struggling because he wanted more to eat (oh the days of constant carbing!) and I was trying to get him to eat a “free”.  Meal times were so hard in those early days.  Ryan’s appetite pre-dx had gotten so out of control and he was eating so much that cutting back to a normal portion size for a 5-year-old was very hard, not to mention the psychological toll all the carb counting and food monitoring takes at the beginning.  He was getting a little hysterical.  I was trying to be calm and comfort him with other foods.  He was debating/pleading for more.  Jason tried to reason with him to no avail.  Ethan, God love him, even did his best.  Ryan was crying and I, by that time, had tears streaming down my face and was at the point of totally losing it . . .

Then, all of a sudden, Aaron jumped out of his seat and took off running, full-force, out of the kitchen, into the living room (where we could still see him) and without slowing down a bit, slammed his whole body into the wall.  He hit so hard, holding nothing back, that he catapulted backwards, flat on the floor.  I screamed & covered my eyes and the other three just froze dead in their tracks staring at Aaron, who quickly sat up and turned to the table to see our reactions with a big Joker-like grin plastered on his face.  Jason, Ethan and Ryan busted out in uncontrollable laughter.  I, on the other hand, nearly had a nervous breakdown right then and there.  And while I was trying to wrap my brain around what had just happened, Aaron was pleased he got a laugh and stood up, backed up and ran at the wall again . . . and again . . . each time getting more laughter.  Although the little episode about did me in, it was like he knew emotions were reaching a peak and he had to do something to break the tension, so at his bodily expense, he created laughter. 

Ryan's Big D-sib

Ethan.  He was 10 when Ryan was diagnosed.  From the moment we received word at the pediatricians office, he stepped up and has been amazing.  All I know about those moments from the pediatricians office to picking up Jason at work (to head to Children’s Hospital), Ethan was my rock.  He talked to Ryan when all I could do was weep.  He calmed me down and did a hard reset (pulling the battery) on my phone when it locked up when I was trying to call Jason to tell him the news.  When I hung up the phone with Jason weeping so hard that I barely see where I was driving, he reached over from the passenger seat and quietly said, “Mom, he’s going to be okay.”  A rock, I tell you, a rock. 

In those early hours, he swore he’d never celebrate another Halloween because he would NOT do it without Ryan (of course, not fully understanding that we can do all those things still).  He whipped out a syringe in those early days, pinched up his stomach and stuck himself with the needle (with plunger pulled out) when Ryan was struggling with having to take another shot and said, “See, Ryan, I took a shot with you.”  This 10-year-old volunteered to learn how to count carbs, understand ratios, take sugar, understand good ranges and use an insulin pen to take care of Ryan so they could go places together without me being there (i.e. church activities, sitters, friends house, etc).  He chose to start sleeping with Ryan again at night & abandon the privacy of his big boy room because it made us feel better, Ryan feel better and him feel better too.  He runs to get the juice from fridge outside when numbers are low, takes Ryan out for bike rides and/or kicks the soccer ball around for intense exercise when the numbers are high and celebrates when they are in range.  He is the one that just today (6/1) texted me during his lunch at school with three words, “HOWS RYS SUG” (why he always texts in all caps I have no idea!).  What makes an 11-year-old so acutely aware that his numbers have been mimicking a yo-yo the last three days, aware enough to text in the middle of his day?

Ethan running the last leg of the JDRF Walk . . . this pic says it all!

He’s protective.  He’s smart as a whip.  He’s attentive.  And you know what makes that all wonderful.  Ryan notices and appreciates Ethan.  In the relatively recent past, we had some major issues with Ryan’s care while Jason and I were away from him.  Ethan was there to oversee Ryan’s care, but he obviously was not the adult in charge.  When things went wrong, Ethan stepped in and took control as much as he was able in the presence of an adult who simply did not “get it.”  When Jason, Ethan and I were discussing the situation at home and trying to figure out what went wrong and assuring Ethan he did nothing wrong and how proud we were, Ryan came bouncing in and said, “All I know is I’m glad I have a big brother who knows what to do and how to take care of me!” 

Seriously, one of my proudest moments as a mom . . . EVER.

Now, don’t get me wrong.  Ryan is amazingly strong, courageous, brave and brilliantly smart and mature way beyond his years.  There is much to brag about regarding that amazing boy. 

So Very Thankful

But what I love about my boys is that diabetes has not hurt them.  It’s only made them stronger.  It’s made them depend on one another.  It’s made them appreciate each other and work together.  Each contributes to the brotherhood.  Each matter equally. 

My cup runneth over. 

And as for Ethan and Aaron . . . D-sibs . . .



Comments on: "Thankful Thursday . . . D-Sibs" (5)

  1. Mrs. b. said:

    one of your best blogs…I could see these moments happening as you gave the visuals in words. You rock. Love you.-Mrs. b.

  2. What an amazing bunch of boys you have there Amy. I really got a better sense of your family through this post…Thank You. Makes me wanna hang out with you even more now!

    Give all those wild, crazy, smart, caring boys a fist bump from Joe and Bridge.

  3. Denise aka Mom of Bean said:

    Oh, Amy! What amazing boys you have….and what an awesome support they are for each other!! It made me smile a huge cheesy smile while reading! 🙂

  4. Missy Slusser said:

    Amy…I’m usually at a loss for words when I read your blog and this is no exception! PROUD is all I can say! You have so much to be proud of in your precious boys!!

  5. Love this post and what amazing boys you have! I laughed outloud about Aaron running into the wall! Sounds like a typical baby of the family. I really enjoyed reading about Ethan since he is about the same age as my son Jacob (Natalie’s older brother) and how he relates to Ryan and takes such an interest in understanding about Ryan’s care..reminds me of Jacob. Yes, your cup does runneth over!

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