Embracing Life & the Child with the Disease

The end of the year is full of parties, ceremonies and special days.  It’s enough to make your head spin and long to be in bed and hide for that final two weeks . . . and I only have two in school this year . . . next year, we’ll have three!!!

Daddy and Ethan at 4th Grade Promotion

But I have to first give a shout out to my oldest boy, Ethan, my 10-year-old that just completed the fourth grade.  He has made me so proud.  We have affectionately given our three boys a special nickname or identifier that fits who they are and how they contribute to our family.  We have always called Ethan “Our Joy.”  And it is most appropriate.  This last semester of fourth grade has been tough, but he has managed to succeed.  He made honor choir.  He got the lead role in the four grade musical . . . he was WILLY WONKA, and he was totally awesome!!  But he also finished his entire year on the “A” honor roll and got a 100 in citizenship all year.  And on the last day, he sang a solo in the talent show and was completely incredible.  But what makes me most proud of “our joy” is who he is ~ who he is becoming.  It gives me joy to me to hear another mom say that she is pleased her boy wants to be friends with Ethan because he is a good influence.   I delight in listening to him order his food at a restaurant or listen to him talk to the server when he says words like “please”, “thank you”, “yes ma’am” and makes eye contact and speaks loud enough to be heard . . . all without being prompted.  And he makes me weep in Mardel when he takes Ryan to the bathroom and comes out, and without me saying a word or asking him to, walks right up to me and whispers, “Mom, Ryan pooped and I checked and it was ‘hard’.”  The reason this is such tear-jerker is because Ethan has overheard Jason and I talk about symptoms of Celiac Disease, which we are acutely aware of these days with Ryan’s slightly elevated numbers.  I didn’t even know Ethan knew what we were paying attention to and why.  But that’s just Ethan, he knows Ryan’s health situation and what is important to keep him healthy and wants to be actively involved.  And with Aaron . . . he wants to teach him so he’s ready and prepared for kindergarten, just like he did for Ryan.  But what makes this momma’s heart completely melt is when Ethan is lying on the floor on his belly with elbows propped up watching television, the only seat in Aaron’s mind is lying on Ethan’s back on his belly with his chin propped on Ethan’s head and his arms dangling down over Ethan’s shoulders.  And Ethan doesn’t mind!  He is the best big brother we could ever ask for.  Things like that aren’t taught . . . they are just part of who he is!

But I guess in the madness of the last two weeks and all the rushing and running and buying and preparing, time stood completely still when Ryan was standing up in front of everyone with his little black mortar board and orange tassel holding his scrolled faux diploma smiling at me with that single dimple.  And as they describe “life flashing in front of your eyes” at the brink of death, I had a surreal moment of the last eight months or so of Ryan’s life and all got silent around me, even my tears froze for a second or two as my mind took me back. 

This was typical Ryan 4-6 weeks before dx; unhappy and sad and couldn't explain why.

I saw snapshots and mini motion pictures of prediagnosis:

  • tears in the mornings
  • drinking lots of water
  • “sleep walking”
  • irritibililty
  • looks of fear
  • disconnecting
  • sad, exhausted eyes
  • no smiles
  • losing my little boy

And then I saw dx day and forward:

  • those first days: fear, anxiety, frustration, grief
  • taking him to school 

    This is Ryan again . . . disconnected and sad while the rest of the family is having fun and goofing off

  • mail order medical supplies
  • watching the nurse give shots
  • “is it time for bedtime snack?”
  • smiles and dancing again
  • laughter again
  • bringing cupcakes home in backpacks 
  • numbers on meters
  • “do I have enough carbs for that?”
  • medical bracelet
  • diabetes bag that goes everywhere with us

And then life went back to real time.  Seeing flases of cameras and hearing the constant hum of low chatter of the relatives of over 130 kindergarteners.  And my eyes refocused and saw a little boy smiling at me, my little boy, my T1D little boy who did it.  He finished kindergarten; he didn’t quit!  He was strong and brave and determined . . . and now he was HAPPY.  

Pictures since Ryan has been diagnosed and come back to us . . .

Playing Air Guitar

Dancing on Easter Morning

Just happy

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Earlier I mentioned that we call Ethan “Our Joy.”  When Ryan was a baby, we gave Ryan a special title and identifier too . . . “Our Miracle.”

P.S.  And for those who are wondering about Aaron’s identifier . . . he was a total surprise entering the world ten months and three weeks after Ryan.  We call him “Our Bonus.”  😉

Our Bonus!

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