Life with type 1 diabetes. For Noah, our eight year-old diabetic, it means frustration, loneliness and often, pain. For us, his parents, it also means unpredictability, hearts that break for our baby on a regular basis, and abject fear.
Just a couple of examples....
We've struggled this year to control his blood sugars at school. We won't bore you with the details, but given his schedule of activities -- recess and gym being the primary culprits -- the amount of sugar and insulin he needs on any given day is ever-changing. In mere hours, he has pingponged between blood sugars that are absurdly high and frighteningly low.
On one particular afternoon, after he had rocked out to Just Dance 3 with his buddies in gym class, he went to the nurse "feeling low." (For Noah, this means he is tired, his head feels foggy, and his legs feel heavy.) He quickly pricked his finger and drew blood -- for the approximately 7,212th time in his young life. (And no, this is not an exaggeration; we just did the math.) His blood sugar was 41. A non-diabetic's blood sugar ranges from 80-100. So, a 41? That is a scary low. A watch-him-like-a-hawk-because-he-may-lose-consciousness-at-any-moment kinda low.
With me on speed dial, the school nurses proceeded to ply him with a 15g serving of juice, waited a few minutes, then tested him again. And then gave him more juice. And tested him again. And gave him more juice. And so it went... Noah had never experienced an episode this severe before. A "low" in the 40s will usually require around 25-30 grams of sugar and about 15-20 minutes to return his blood sugar to normal. Well, on that awful afternoon, it took more than 90 grams of sugar and two hours. Every time we thought his number had risen enough, he'd crash again. It was an incredibly frightening day for Noah's caregivers at school and for us. And for Noah, it was irritating and annoying that he had to be gone from his classroom for such a long time, that he kept getting his finger pricked and that it took him so long to feel normal again. He wasn't sad, and he didn't complain. He was just annoyed that, once again, diabetes had messed up his day.
Recently, though, he did get sad. Very sad.
Back in December, we had some friends over to celebrate Hanukkah. The grown-ups were busy frying potatoes and the kids were running around, having a great time. Sometime in the middle of the festivities, Noah came to me: "Mom, we have a problem. My pump says I'm out of insulin."
Sure enough, in the craziness of getting ready for the party, we had missed his pump's warning that his reservoir of insulin was low. We needed to change his site immediately. (Again, we won't bore you with the details, but just last year, Noah was able to transition from receiving multiple injections of insulin daily to wearing a pump that administers the insulin at the push of a button. It's a far cry from "perfect," but it has allowed for greater control of his blood sugar and eased some of the daily annoyances of the disease.)
"Site changes" are, without question, Noah's most-hated part of his disease. Every two and a half to three days, we have to shove an inch-long needle into his little butt cheek, inserting a tube that delivers the insulin from the pump he wears on his waist into his body. Site changes hurt on a good day, but if we accidentally hit a nerve -- which inevitably happens from time to time -- his immediate screams are heart-breaking.
So that night, when he realized that he would have to quit playing with all of his friends and retreat to my bedroom to have a needle shoved into his ass, he was decidedly pissed off. As he sit on my bed, watching me prepare the reservoir and fill the cannula, tears started to well in his eyes. "Mom, why can't I be a normal kid?"
The tears turned into sobs (his aloud, mine silent). He rarely feels sorry for himself about his diabetes, but every once in a while, the pain and frustration and pressure become too much. Our eight year-old baby has had to grow up much faster than he should have. He's had to be more reliable and trustworthy than most other kids his age. He's had to sacrifice a lot of time with friends and other normal activities because of his disease. Usually, he takes that in stride. But that night was one of the rare occasions when it all just overwhelmed him. For ten minutes, we just held him as he cried and told us how lonely he felt -- "lonely" was his word. No one else in his school has diabetes; no one in his family has diabetes; none of his friends have diabetes. But he ended that talk the way he always does, "but maybe someday the scientists will find a cure."
And that's why we're writing. Once again, our family is participating in JDRF's Walk to Cure Diabetes and we're asking for your support. Without the research that JDRF's work has helped fund, Noah's life would be immeasurably harder. The technology that allows us to get quicker, more accurate readings of his blood sugar might not be available. The pump that he wears -- that little device that has returned some sense of normalcy and spontaneity to his life -- might not have been an option. And that cure that we're praying for and that Noah is counting on, might not come.
In addition to funding research to find a cure -- which several sources indicate is a very real possibility in the not too distant future -- JDRF sponsors several outreach programs that help to educate T1D families on how to successfully manage the disease and to help them feel less isolated. I have had the privilege of serving as a mentor to newly-diagnosed families, and I have recently agreed to volunteer as Chair of our local chapter's Family Network Groups. Our family is honored to advocate on behalf of the organization that has done so much to advocate for our child and for the millions of other people with T1D.
So, how can you help?
We will never be able to prevent completely those occasional moments of pain, frustration or loneliness, but the support that Noah receives around this Walk is a source of tremendous pride for him. We thank you, from the bottom of our hearts, for whatever support you could provide to Noah and all of the other people who are living their lives, waiting for a CURE.
All our best,
Mary, Matt, Luke & Grace, and most especially, Noah Mason
|Noah's Needle Ninjas - Join Team||Raised|
|Matthew and Mary Tomback||$500.00|
|Mike and annie Listiak||$100.00|
|Denotes a Team Captain|
Andrew and Kara Aplin
Brian & Nilda
Grammie & Grandpa
Jackson, Kaia and Auden Pelz
Jennifer Duda & Jeff Butwinick
John and Sue Bahr
Mema and Bobo
Mr. Aaron Otto
Mr. and Mrs. Eric R Weinberg
Mr. and Mrs. Mike and Annie Listiak
Mr. Jeff Shalom
Mrs. Laura Praeger
Ms. Heidi Jo Galbraith
The Abena Family
the davis family
The Dummer Family
The Durham Family
The George Family
The Ryan Family
The Tomback Family
The Weig Family
Two and a half Kings