Friday, October 25, 2013

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….

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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.

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Jillyn, thank you so much for this insightful and educational spotlight.  Type 1 diabetes is one of those things I always feel like I should know more about but don't.  Your explanations were very helpful--manual vs. automatic, that's brilliant!  Also it's great for people to know some of he warning signs and symptoms to look for as it sounds like it can get pretty scary pretty fast.  I also appreciate your overall attitude--Diabetes isn't the end of the world (neither are limb differences, and many other special needs) and you will be alright and will be blessed.  So true and so relatable no matter our journey.  Thanks again Jillyn! 

As always if you or anyone you know would like to participate in the special needs spotlight please email me, or have them email directly, at thislittlemiggy @ gmail dot com.  

Have a great weekend!


3 comments:

  1. I had no idea that Type I diabetes was an autoimmune disease!! That is so interesting. And I loved your funny moments! Sounds like he is a great kid. Thanks for sharing!!

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  2. This story sounds a lot like my baby sister! It's cool to see these kids grow, and handle it with such grace. Thanks for sharing! ;)

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  3. Thanks for this article! I was diagnosed with Type 1 Diabetes just over a year ago. It's been a struggle, but reading about how well these young kids handle it is really inspiring. Thank you!

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