Special Needs Spotlight: Nick

Hey readers!  My name is Jillyn and I am excited to be a
part of the special needs spotlight.  I
am a California girl transplanted in small town Idaho!  Quite the change! Yes, I really miss the
beach and hate the cold Idaho winters!  My husband and I have been married for almost
20 years…Yikes!  I’m a full-time mom and
part-time pharmacy tech. We have three children, Mike, Nick, and Presley.  In 2002 our son Nick was born.  He was a healthy, vibrant, big boy.  We were excited to welcome him into our
family.  In 2004, two weeks after Nick’s
2nd birthday our world turned upside down….

*************** 

Miggy:  Hi Jillyn! Thanks so much for sharing your
story today. As you mentioned in your email, your son has type 1 diabetes, can you take me back
to those early warning signs when you knew something was ‘off?’  When did you
actually get a diagnosis and do you remember how you felt?  Can you compare
those first thoughts and feelings with how you feel now?

Jillyn:  First off, thank you Miggy
for letting me be a part of the Spotlight series and the opportunity to share
our son’s story. 

August
12, 2004…a day we will never forget…the day our son was diagnosed with Type 1
Diabetes.  The first time I knew
something was ‘off was the day before; this was after a long night of
continuous diaper changes.  Nick was only
two at the time.  That night I had been
up with Nick every hour changing a soaking wet diaper.  Soaking wet like he had gone
swimming…wet!  I knew this was not
normal.  We had been trying to potting
train and it was not going so well.  The
next day I watched Nick.  He was
restless, grumpy, moody, didn’t want to eat, acted like he didn’t feel well,
and took a five hour nap.  He only woke
up because I woke him up to eat dinner. 
I knew this was not normal.  I
suspected diabetes but was in denial about it. 
I didn’t want to verbalize my thoughts. 
I was not ready for the truth. I knew the signs of diabetes because my husband’s
brother has Type 1 diabetes and I was around him when he was diagnosed at the
age of 25.  By that evening I knew I
could not keep my thoughts to myself.  I
had to share them with my husband.  I
knew keeping this to myself would only hurt Nick.  I talked with my husband and he immediately
saw the same signs…lethargy, moody, potty all the time, sleepiness.  He made a call to his brother and we decided
to take Nick to the doctor the next morning. 
In the doctor appointment I shared with the doctor some of Nick’s
symptoms.  But I never told her I
suspected diabetes.  I did not want to
lead her to any conclusions.  However,
she immediately asked me if diabetes ran in the family.  I said yes. 
She determined to get a blood sugar reading to rule it out.  It took three blood sugar tests to finally
get a number.  (Three tests because blood
sugar meters only read so high.  Some
meters may read to 400, 500, or 600 etc. 
If blood sugars are above these numbers the meter will just say
“HI.”)  By the third test we finally had
a number…775!  

The doctor rushed in and
told me my son had diabetes, had been admitted to the hospital, and we needed
to rush to the fourth floor because he could go into a coma at any time!  My head was spinning as my husband and I
rushed our son to the fourth floor.  Life
quickly felt so out of control.  How
could this happen to us, why was this happening?  I did not know what life was in store for our
son or our family.  The first few days
after diagnosis, I went into a mourning phase. 
I mourned for the loss of the “normal son” I once had.  The loss of the “normal life” I thought we
would have. I struggled with the label my son now had…type 1 diabetic.  I did not want that label to determine who he
was or the type of person he could be. 
To me we are all different and that is ok.  Some of us have blue eyes, brown eyes, blond
hair, brown hair.  Not one of us is
exactly the same.  I determined while in
the hospital that my son has diabetes but diabetes does not have him.

        

Miggy:  You hear a lot about type 2 diabetes in the
news these days, perhaps it would also be helpful to explain to everyone the
difference between type 1 and type 2 diabetes.

Jillyn:  Thank
you so much for this question!  You’re
absolutely right.  Type 2 diabetes is the
one that is most often discussed.  This
is right from the JDRF website…

“Type 1 diabetes (T1D) is an
autoimmune disease in which a person’s pancreas stops producing insulin, a
hormone that enables people to get energy from food. It occurs when the body’s
immune system attacks and destroys the insulin-producing cells in the pancreas,
called beta cells.  While its causes are
not yet entirely understood, scientists believe that both genetic factors and
environmental triggers are involved.  Its
onset has nothing to do with diet or lifestyle.  There is nothing you can do to prevent T1D,
and—at present—nothing you can do to get rid of it.”

With Type 2 diabetes the body still
produces insulin, however, the body may not produce enough or the body does not
use it well.  This means insulin
resistance.  As a result, sugar stays in
the body.  This leads to serious
problems.  I would refer any readers who want to know
more about type 1 diabetes or type 2 diabetes to the American Diabetes
Association at www.diabetes.org, www.jdrf.org, or www.childrenwithdiabetes.com.

Miggy:  Explain how your son’s specific needs affects
your day-to-day life?

Jillyn:  Life
with diabetes is a numbers game.  It’s a
constant balance.  Nick tests his blood
sugars about 6-10 times a day.  He tests
when he gets up, before each meal or snack, before bed, and then any other time
he feels like he needs to test.  At every
meal we constantly count carbohydrates and try to match that to the amount of
insulin he needs.  Math is a must to
manage diabetes!  Because Nick was only 2
when he was diagnosed he did not understand how to do all of this.  My husband and I quickly became educated in
diabetes.  We became his caregivers and
managed his diabetes for him.  As he got
older, I taught him his numbers before his letters.  That way he could read the numbers on his
meter!  

Also, shots! 
There is definitely no fear of needles for anyone in our home!  Nick began doing his own shots by the time he
was 5.  Anytime we go somewhere, all the
necessary supplies must go to.  Nick
carries a little pack with him that contains his testing meter, insulin,
needles, a snack, glucose tabs, and a glucagon kit.  Illness and growth spurts also throw a wrench
in the day-to-day management of diabetes. 
Any type of stress on the body can affect blood sugars.  I’m really not looking forward to puberty!

   

 

Miggy:  What are the biggest worries you face for
your son?

Jillyn:  One
of my biggest worries for Nick is how will he manage his diabetes.  As a caregiver, I have had control of
managing his diabetes. I have had to learn that in order to help him manage his
diabetes as he gets older I must educate him. 
I must also slowly give over the control to him.  I must do this to offer him the best chance
at life.  And this is extremely hard as a
mother.  But I have learned that this is
best possible outcome for Nick.  However,
it requires a lot of patience! 

Miggy:  Now for a lighter question, I’m a big
believer in seeing the humor in life and learning to laugh, so have you ever
had any funny conversations/moments you never imagined due to your special
needs situations?

Jillyn:  I
love looking for the humor in situations as well!  Some of the ‘lingo’ for diabetes can sound
questionable.  My friends laugh at some
of the conversations we have at our home. 
Oftentimes you can hear us say things like…”high, why are you
high?”  This is referring to a high blood
sugar!  Or another one…”you better go
shoot up for that ice cream!”  This is
referring to getting insulin (shooting up) for the food your eating!

Miggy:  How can people best approach or respond to
your son? Is there something you wish other people knew so as to avoid awkward
or hurtful situations?

Jillyn:  Just
come up and ask!  I have no problems
answering any questions and neither does Nick. 
But don’t stare as you watch him shoot up or test.  And don’t feel sorry for his situation.  Yes it is tough, but we do it.  Also, diabetes is not a death sentence.  As long as Nick manages his diabetes and
lives a healthy lifestyle, like we all should, he can live a very long
life.  Also, Nick can eat sugar!  He can eat anything you and I eat.  I like to explain that Nick is a manual
transmission.  He must take his insulin
manually.  You and I are automatic
transmissions.  Our bodies automatically
spit out insulin for what we eat.  In
order to have optimum health we ALL must live healthy lifestyles, diabetes or
not!

Miggy:  If you could say something to the mom who
just starting on this journey of type 1 diabetes, what would you say? What
would you say to yourself if you could go back in time?

Jillyn:  The
piece of advice I offer to newly diagnosed Type 1 moms is education.  Educate yourself on type 1 diabetes.  Learn all you can on the disease, treatments,
and research.  Educate yourself on the
laws and rights of those with special needs. 
Learn our rights when it comes to school.  Education is the key.  Also, keep a food and blood sugar diary.  This was a huge key in helping us understand
how diabetes worked. 

If I could go back in time, I would tell myself it
will all be ok.  You will be alright,
your son will be ok, and your family will be blessed.  Take it one day at a time.  Diabetes is not the end of the world!

Miggy:  What is the biggest lesson you’ve learned
since becoming a special needs mom?

Jillyn:  Being
a special needs mom has made me realize how precious life is.  I have more compassion and understanding for
others because of the needs of my son.  I
feel it is a blessing to have Nick in our home. 
And I feel honored to be his mother.