Wednesday, July 14, 2010

Feeling Different

We went to the beach the other day.  It was a beautiful, sun-drenched day of beachy fun, sand castles, splashing in the surf, running on the sand and hunting for the elusive (and hideous) geoduck, (pronounced “gooey duck”).

I packed a cooler with fresh summer fruits, individual serving sized packs of crackers, cheese, raw veggies and cold water.  No sandwiches, no salads, just grab-and-go type snacks.  Jenna enjoyed spot-on blood sugars in spite of being disconnected for a good portion of the time.  I would just connect her long enough to give her a bolus for whatever carbs she consumed then promptly disconnect her, slip her pump back into the cooler (to keep the insulin happy and hidden from the hot sun) and send her off to run and play once more.

Watching Jenna play in the sand and surf with no pump strapped around her waist put a smile on my face.  I know she enjoys being free of it, if just for a little while.  Only the presence of her infusion site over her right deltoid told the tale of a child with more going on than the average 4 year old.

We had a blast.  But during the drive home,  Jenna shared an experience she had while she and her sister were off playing with several other beach-going kids.  She became mildly upset as she explained to me that other kids were asking her what “that thing” was, referring to her infusion site.  I asked her if she taught them something about diabetes and she said she didn’t tell them anything because she didn’t like having something different than everyone else.  She punctuated our conversation by saying “I wish I didn’t have diabetes”.

You can imagine what this did to my heart.  I couldn’t help wondering if this was but a taste of what the next 15 years holds.

I told her that if she wants we could be sure her site is hidden the next time we go to the beach.  She shook her head, then turned her scowling face toward the window, quivering chin and all.  I knew that, for now at least, she didn’t want to discuss this any further.

It made me think of how wonderful it will be for her when she attends any event where type 1 diabetics of all ages convene.  She needs to feel like she’s not alone.  She needs to meet people in real life that have diabetes like she does.  I fully intend to sign us up for a family diabetes camp next year.  This year I tried but the camp filled quickly and we were unable to secure a spot.  But next year I’m all over it, come hell or high water.   If I’m not the first one reserving a spot I’ll be surprised.  That’s how badly I want this for her - for us.

But this summer will end with a fabulous bang when we attend the CWD - FFL Conference in Vancouver!  As a family we are excited about this event.  But individually, our reasons for being excited are varied.

Jenna asked me if they’ll have a bouncy castle there like at the JDRF Walk To Cure Diabetes.  I told her I’m not sure but I bet the hotel will have a pool.  Her eyes widened to saucer proportions and her hands clapped together excitedly.

That’s all she needed to hear.  She’s in.


Mike Hoskins said...

Oh, Sherry... this is heartbreaking. I think we all go through those same emotions and feelings in our lives no matter what the age - I did as a kid, as a teen, and now into my adulthood at various times. But it helps having those camp and D-conference events to help reassure that we're not alone, and there's nothing to feel ashamed about. Same for the DOC, which is amazingly supportive in every aspect of the word. Glad to hear she had fun at the beach, though, aside from that, and that there's MUCH excitement ahead!

SarahK said...

Being a T1 myself and knowing what we go through, I can only imagine the heartbreak of a mother to see your child struggle with it. They always say that the person with T1 is strong, but I think it's the parents who are strong.
D camp is fun. I had the BEST time of my life when I went to one for 3 summers. It has got to be the best thing for any diabetic child - it makes them feel normal. Go for it! Beat the doors down to get a spot. You won't regret it.

Alexis Nicole said...

I cried reading this cause we both share that pain. Seeing our children suffer and not being able to take it away. Justice says this to me atleast 2x a week "I hate having diabetes!"..All we can do is let them vent, and support them. I do agree being around other D kids is amazing. When we attend the JDRF Youth Ambassador activities its like we are home! If Jenna isnt already signed up as a youth ambassador I strongly suggest it. It has made such a difference...((((((HUGS))))) for both you..

Karen said...

I know it must be so hard to hear her say something like that. But please don't dwell on it for to long. Because I can tell you from experience that she isn't. Honestly, after over 30 years I still sometimes tell my husband that I don't want to have diabetes anymore and I'm tired of being different. It comes in flashes. But it passes a few minutes later, and I go on with my life. It will be okay - and she will too. {{{HUGS}}}

happysquead said...

I know how it feels to be different from everyone else. I have a rare, rare, rare form of Hereditary Paraganglioma Pheochromocytoma Syndrome (its a form of cancer). I have 11 doctors and I have friends in the hospital who are dying and I have had many surguries and have about five 6-8 inch long scars running horizontally across my tummy and on my sides. Up until 8th grade, I tried to keep my hospital life hidden, but it was hard because when I wasn't in school, I was at the hospital undergoing tests and painful experiments. In 8th grade, I was pretty much a friendless loser because I never had time to hang out with anyone and people would get mad at me because they thought I was ignoring them. I finally came out of the closet and told people, but I had thought a lot about telling and I was running a risk of everyone treating me different and just being nice because I'm not living for a long time. I was treating different by some people, but I was okay with that because then i made some real friends who wouldn't try to make me feel bad that I couldn't hang out a lot. There's my story of coming out and telling people who you are, and it's not such a bad thing.

Anonymous said...

"Chin quiver". That's what got me.

Oh I do so hope that FFL is everything you hope for and MORE! I agree that that will go a long, long way. I tell Caleb about T1D people and kids, and it helps, a little. But I remember him meeting the other two winners of the Simple Wins contest. The winners - not Nick. He was SO FREAKIN' excited about them. He loved meeting Nick too, but it was almost tangible the impact meeting the other kids was to him.

You have some other good comments here. They comfort me - I hope they comfort you.