I need to introduce you to one of my most favorite people in the world:
my nephew James.
Ain't
he a cutie? I have lots of pictures of James, but I think this one
captures his mischievious nature rather well. And he is mischievious.
He's also as stubborn as a rock---it comes part and parcel with the red
hair his mother gave him. And he's also funny and creative---he's quite
the talented artist, and it seems he's inherited more than just red
hair from his mom, who is a bridal gown/haute couture designer. He
loves to laugh and smile and tell jokes and play. He also gives
wonderful hugs and kisses, when he's not too busy rolling his eyes at
you to bother. One of the things I love about James is that he feels
its necessary to keep up his own relationship with his auntie and uncle
in Minnesota: he's taken that burden on for himself, rather than
shuttling it through his folks. He sends letters and drawings and calls
here on a regular basis and he's wonderfully conversant for a
five-year-old. For example this winter we were chatting about
snowstorms and as his father is a civil engineer, he's rather
well-versed in roadway snow removal and was talking excitedly about
snow plows and sand trucks. I told him that up here in Minnesota, they
not only put sand on the roads but salt as well, and he just couldn't
believe me on that one. "No," he said, his voice full of awed
disbelief. "Yep," I replied confidently, "because it's colder here than
it is in Omaha. We need it to melt the ice." "Wow," he gasped, and then
wondered aloud about the logistics of putting a really
big salt shaker on the back of the snow plows. He wanted to know how
that worked. I couldn't bring myself to tell him that they just added
the salt to the sand because I loved the visual his description
produced. About a month ago, he sent a batch of pictures he'd drawn for
us to hang on our fridge and in the envelope was this homemade card
from James, and it's the reason why I'm writing about him. 
You see, James has Type I Diabetes. When he talks about "his walk," he
means JDRF's Walk to Cure Diabetes that his family, friends, teachers
and other assorted people in his life take part in every year in an
effort to help him out. To raise money to find a cure for his disease.
I don't think I'll ever forget when my mom called me and told me about
his diagnosis. It was about a week after his third birthday, fairly
early on a Saturday morning and my mom gently told me that Christi, my
sister and James' mom, had a bit too much on her plate and asked if I
could come down to help for a time. I didn't even have to think about
it: Christi would have done the same if it had been my kid and I was on
a plane the following Tuesday.
Now, to remember the pre-diagnosis James is to remember a completely
different kid. He was crabby. And I say this knowing and loving the
boy, but he was a crabapple most of the time---there just isn't any
getting around it. He loved his family, but he was very wary of anyone
outside the immediate circle. The husband and I would come for visits
and he would circle around us, as if he was trying to decide whether we
were worth his time or not. If he didn't want to be around you, he
wasn't going to tolerate your presence and he would simply strut away.
If you tried to help Christi in the usual Auntie-like way, James, eat your sandwich,
he'd just shoot you the evil eye or he'd sigh deeply and then would
chastise you in a very adult way that stung, even though you knew to
let it roll off your shoulders because it was a child talking. You
could feel the strength of his will, it was palpable. Coming from a
extraordinarily large family and seeing he wasn't going to lighten up,
we eventually chalked this up to individuality and left it at that.
Turns out, however, he wasn't really crabby at all. He just didn't feel
well.
No one knows how James got his diabetes. His pancreas just quit on him.
That very special yet overlooked organ wasn't producing the insulin he
needed to let glucose enter into his cells to provide the energy he
needed. But none of that really mattered as there were other priorities
staring his parents down: it was time to learn how to deal with James'
diabetes. This meant that suddenly my sister was counting carbs long
before it became fashionable, and was forcing James to eat his food,
and cutting him off forcefully when he went for something he couldn't
eat or drink, like candy or regular pop---and learning how to cope with
the resultant temper tantrums. This also meant my sister and
brother-in-law practically cleaned out Walgreens' buying the necessary
supplies. They had to learn how to test James' blood sugar, which
involves a finger prick of the sort you and I have at the doctor's
office once a year when we go in for our physical. The kind of prick
that makes us smart for a minute while we hold the cotton close to our
finger to staunch the flow of blood, remembering just how much we
dislike having that done, James has done anywhere between four and six
times a day---every day.
And of course, his folks also had to learn how to give James' his
shots. There were---and still are---very short, sleepless nights for
his parents when James had to be checked in the middle of the night
because he'd had a low count at bedtime. Once at midnight and once at
three a.m. It's a difficult balancing act. James' blood sugar can
neither be too high nor too low---and with careful management his
parents have done a spectacular job of picking up where his pancreas
left off. But the minute James went on insulin, his personality did a
complete one-eighty. I remember getting off the plane and driving
directly over to their house. I was somewhat stupefied when James said,
"Hi Aunt Kathy!" and smiled at me. That hadn't ever happened before and
I was stunned. Shortly after his diagnosis, my mother remembers coming
into my brother's kitchen, where all the kids were eating lunch, and
James demanded a hello kiss and hug from Grandma. While happy to
oblige, she couldn't remember that ever happening before where James
was concerned and it almost blew her socks right off. He's been a
completely different child since. The insulin, in its perverse way,
while making his life more difficult, has also allowed for us to get to
know the real James: the James who feels well and can do all the things
a kid his age does.
James
at the playground.
James lives the normal life of a five-year-old boy. He goes to school,
he plays, he gets in trouble (he's still as stubborn as a rock), he
does all of the things that a five-year-old should do---but with
limitations. Imagine Halloween and being allowed to go trick or
treating, but having to hand over your candy when you're done because
you can't eat any of it. Sure he gets a toy out of the bargain, but it
does make Halloween a wee bit different, doesn't it? Imagine birthday
parties where you couldn't have any cake. Or having to ignore the ice
cream man when he drives by. His parents may have picked up his
pancreas' slack and while this allows for normality, it also has its
drawbacks. James' lifespan has automatically, just by using insulin,
been cut back by about fifteen years. There's a risk of blindness and
amputation if he doesn't take care of himself. And then there's the
added fun of shots and finger pricks and trips to the doctor. But even
with all of this, like I said, James is one of my most favorite people.
Because while he does complain and whine and groan about the injustice
of it all, he bears this burden much better than people who are fifty
and sixty years older than him who have been diagnosed with Type II
Diabetes. He takes it in stride and two years after the fact, he
doesn't complain about the finger pricks or shots, and for the most
part, eats what he's told to and at the time he's told to do it. He's a
trooper. It's because of James that the husband and I want to help the
Juvenile Diabetes Research Foundation find a cure for Type I Diabetes.
We will be traveling to Omaha on the weekend of August 14th to join up
with James' Jaywalkers to find a cure for Juvenile Diabetes. The theme
for this year's walk is "Magic---Making Diabetes Disappear" and I think
that sounds great: nothing would be better to wave a magic wand to make
James' diabetes diappear, like the proverbial rabbit in the hat.
Unfortunately, it's not quite that simple. My sister has set an
ambitious fundraising goal of $3000. Now, while this may not sound like
a lot of money, you should know that 85% of it will go toward research,
not to pay for some fat cat administrator's limo service. JDRF is one
of the best foundations out there and they are making great strides toward finding a cure. All we need is to make the magic happen.
I know there are a lot of charitable causes out there, but if you're inspired to help James out by sponsoring his team go here
and donate what you can. All major credit cards are accepted. If you
would rather send a check, please hit the email link over on the left
hand side and I will send you the information you need. Either way,
it's tax deductible and is much appreciated. I will be posting later
about a T-shirt purchasing opportunity (they'll be daisy yellow with a
very cool design) just as soon as I have the details figured out. The
blogosphere is frequented by very generous people, and I would love
nothing better than to help James' Jaywalkers exceed their goal of
$3000 and with your help, I'm sure we can do it.