It's one year ago this month that Manny was diagnosed with juvenile diabetes. And it was tonight that I had the honor to give a speech at the Celebrity Monopoly Gala by the Juvenile Diabetes Research Foundation Northeast Wisconsin Chapter. Here are my words:
Three
years ago I sat right there, at that table. I was in attendance at this very
Gala on more of a professional level as one of my clients was a sponsor of the
event. I distinctly remember sitting there, looking around the room, watching
Donald Driver, talking to my colleagues and thinking, “I have no idea what
juvenile diabetes is …” But I continued to smile and socially interact as a
professional does.
Today,
I stand before you to tell you I now know exactly what juvenile diabetes is in
all its force. This past year has been a journey of shock, heartbreak, change
and much anger.
But
it’s also been a year that has showed me how resilient we can be when we have
to be, that hope does exist in the face of despair and blessings are very often
the small things in life that we so often take for granted.
Our
journey began one year ago this month when our son, Manny, then 9 years old
began drinking a lot of water while we were on vacation. Given that he is an
extremely active boy, given to running on beaches and carousing with his two
younger brothers non-stop, we didn’t think much of him guzzling water by the
gallons in the 90-degree heat.
Once
we returned from our vacation for the next few weeks, Manny told us he had bad
leg cramps at night. We thought it was growing pains.
He
told us he didn’t have enough energy to go down the steps at home but showed me
his new way of getting downstairs by sliding down on his butt. We thought he
had walking pneumonia.
He
was getting up in the middle of the night to go to the bathroom … we thought he
had a bladder infection.
He
couldn’t stop eating everything in sight. We thought he was really going
through some growth spurt.
His
stomach hurt, we thought it was the stomach flu.
For
a good couple of weeks this went on … with my husband, who is a physician,
checking him out every few days.
And
still it escaped us.
One
Sunday morning we woke to the wails of Manny from his room. He was violently
sick.
That’s
when my husband, who was working in the urgent care clinic that morning looked
at me and said I should take him in once the clinic opened.
At
that point, what we didn’t realize like so many others confronted with the
onset of this disease, was that Manny was slipping into a diabetic coma. He
could barely walk to the car so we could get to the clinic that morning. He sat
slumped over in the back seat, slumped over in the waiting room. Once there,
Steve’s colleague took a look at Manny sleeping on the exam table, his veins to
weak to start an IV, and she ran some tests. While my husband continued to see
other patients, she delivered the news, “I think Manny has juvenile diabetes.”
Now,
that’s not what I was expecting to hear. Time literally stopped for me. Sounds
of the clinic were muffled as I digested this information. In my head when she
opened her mouth, I expected her to say he has pneumonia, flu, appendicitis …
and then diabetes punched me in the stomach.
From
there it was a quick trip to St. Elizabeth Hospital to stabilize him and then a
road trip by ambulance to Madison.
Our
world blurred. He was admitted into the pediatric intensive care unit and
surrounded by a team of health care professionals to take care of him.
There
was heartache, shock and tears as he finally started to come around. One of the
first things we told Manny? “We are sorry.” We are sorry for not adding up all
the symptoms and getting you help sooner. Manny, being like most kids, readily
accepted our apology amidst a lot of hugging and tears.
Once
he was strong enough, we began the process of learning about juvenile diabetes
and how to manage it. It’s a disease that I’m convinced is one of the most
slippery diseases imaginable. Once you understand his carb ratios, the numbers
change. Once you assume any sort of routine, blood sugars start running high.
And
the emotions that run along side this disease will bring a parent to their
knees.
But
through it all, Manny has shown us the beauty of strength and courage. Two
weeks after his diagnosis I went in on Valentine’s Day to check in on him during
treat time at school. Because it was Valentine’s Day there were a number of
treats he had eaten so we headed down to the office so I could give him a shot.
He had a surprise for me. As we stood in the nurses office, he said “Mom, watch
this,” and proceeded to give himself his first-ever insulin shot. I would ask all of you in this room,
how many of you could give yourself a shot, 6 to 8 times a day? How many of you
could insert a needle every three days? Manny can and does.
Each
day 40 kids are diagnosed with juvenile diabetes. That adds up quickly to 3
million people nationwide each year. Believe me, Manny doesn’t want to give
himself shots or insert a needle but he needs the insulin to keep him alive.
Three
years ago, I sat there at that table and had no idea what juvenile diabetes was
and the impact that this disease would have on my family.
Hope
now plays a huge role in our lives.
When my son plays basketball and runs down the court, that gives us
hope. When I heard of JDRF
partnering with another company to research an actual artificial pancreas that
gives me hope. When Manny
skateboards without a care in the world,that brings us hope. When I see how
much his friends care about him, how other parents help, how his teacher and
school take care of him that gives us hope. And tonight when we see a room
filled like this one is … that gives us hope.
