Embracing Life & the Child with the Disease

Ryan’s dx came in December.  And it came in his kindergarten year.  Well, the last three weeks have been packed full of special activity and off-schedule plans.  And I don’t know about your T1ers, but mine doesn’t do all that great with change and being flexible with D; we are all about routine and flexibility is not one of his strong suits right now. 

His regular school schedule is 9:00am snack, 11:00am lunch, 1:00pm snack and then another snack about 3:00pm when he gets home.  These four times here are IN CONCRETE in Ryan’s head.  He is a crazy clock-watcher and knows what to do and when to do it.  And if there is a special assembly in the afternoon and he misses that snack or if Friday’s Tiger Tracks has something special and goes beyond 9:00 and he can’t have his snack, it messes him up for the rest of the day emotionally and usually we struggle until the afternoon to get his sugar back in line because he gets so upset.  He is much more flexible at home on the weekends when he’s with Jason and me, but school hours must be more regimented.

Picnics, Field Day, Water Days, Park Days, Luaus, movie afternoons and more fill kindergarten days at the end of the year AND there are always special snacks for them.  Which is wonderful.  I am so pleased at how engaged his teacher and the school is at making it fun for kindergartener and being creative to keep them engaged (or entertained) up to the very end.  But boy-oh-boy is this tough on my D-boy. 

The first park morning, they decided to take their lunch to the park and picnic there.  The teacher had already assured me that the nurse would go to the park (just a few blocks away) and give him his lunch shot.  But I went to check on him about lunch time and decided to stay and give him his shot.  When I got to the park, at about five minutes before regular lunch time, the teachers had decided it was too windy to eat outside (and they were so right, it was crazy gusty).  But this was a double whammy for Ryan.  He thought he was eating at the park and had himself adjusted to that idea to have it changed back to eating inside as usual at the last minute AND it would mean they would eat at 11:30ish instead of the regular 11:00 time.  He was so upset, I almost thew my hands in the air and brought him home.  But I stood firm trying to teach him that flexibility at school was okay for him and it was okay for D too.  (Big Sigh) We survived, but we were both miserable all afternoon. 

Another activity was Field Day.  Our PTA is awesome and works their rear ends off to raise the money to do special things on days like this.  It looked like an inflatable amusement park up there with water inflatables along with bounce houses.  There were 18 stations of activity to rotate through.  I went up there to check on him and see if he had enough carbs for the additional activity.  When I walked up, I noticed that station 18 was freezer pops!  The kind in the plastic pouch that you cut one end off to eat.  I checked on Ryan, made sure he had his pre-carb morning snack and talked to his teacher about going home (2 minutes a way in a car) and getting one of his sugar free popcicles for him.  She said she thought that they would have a small ice cream cup at one of the other stations.  I explained that I wasn’t so concerned about the ice cream because the sugars wouldn’t be as high and there was a little bit of protein in the dairy to keep the sugars from spiking then diving.  Ryan was just fine with his special freezer pop . . . he actually prefers them now.  🙂  Catastrophe averted!

But earlier this week, I missed one.  They had Wacky Water Wednesday.  Ryan was thrilled . . . I was pleased . . . he was growing some flexibility.  All went pretty well all day except that his numbers were well over 200 at lunch time, but we have been struggling with 200-250 a lot lately and endo wants us to try to work through it a bit because it could be slowing coming out of honeymooning or growth spurt or simply just the end of the year excitement and activity; he’s concerned if we change dosage before it’s really consistent, we’ll have some crashing days when his pancreas picks up.  Hm!   Anyway, then in the afternoon, after the 239 sugar, he had his outdoor splash fun. 

When the boys got home from school that afternoon, Ethan busted in the door ahead of  Ryan and militantly announced, “Ryan had a sugar freezer pop for snack today!”  He seemed irritatedly concerned.  And then continued, “Mom, you need to check his sugar.”  Ok, PARENT ETHAN, let’s check his sugar.  Ryan was jittery and hyper.  Taking his sugar was like dealing with that slime goop the boys like to play with that just slips through your fingers.  I had to raise my voice at him to get his finger still for the poke.  And I thought, “here we go!”  Then the meter . . . Beep. 1-2-3-4-5 Beep. Beep. Beep. “402.”  Ryan had a full-out, sugar-drama filled, overreaction to the number.  “WHAT?!?!  OH MY GOSH!!!”  And then there were several incomplete sentences that followed.  I assured him that he was going to be fine as he ran his fingers over and over through the front of his hair pushing those two cowlicks to make his long shaggy hair have a beautiful 80s tidal wave bangs look.  Ethan immediately said, “Let’s go play.”  And outside they went after Ryan could focus enough to walk while ranting.

We got his sugar down by bedtime, but it was an interesting evening.   I emailed his wonderful teacher.  And she is wonderful.  There are a million things going on at the end of the year and she has 21 other children to take care of as well.  So it was a friendly reminder to ask that she let me know of special things like freezer pops so I could have an alternate plan.  And it was a good teachable moment for Ryan to question what he is having.  I realize he is five and shouldn’t bear the brunt of that responsibility but it is a just that . . . a teachable moment.

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