Alyssa's Journey with Type 1 Diabetes

An outlet, a diary of sorts, a place for thoughts, a place to connect,
an expression of feelings about Juvenile Diabetes......

Tuesday, August 30, 2011

English Writing Paper: Juvenile Diabetes Journey

As you know, in addition to being a full time mother, I am also a full time student.  I wanted to share a paper I am working on for my English Writing class.  Most of the details you already know, but this paper goes a little more in depth.  Alyssa's first few days of school have gone off with out a hitch!  I'm looking forward to us both having a great school year!

Juvenile Diabetes Journey
My daughter came into this world fighting on June 15, 2003.  She was born five weeks early and because of that, her lungs were not fully developed.  She spent the first two weeks of her life in the NICU connected to tubes and wires that supplied her with oxygen and nutrition.  My heart was breaking as I watched her lay in a dome covered bassinet, knowing I couldn’t hold or touch her.  When I asked if she was going to make it, I was told by the doctors that it was in God’s hands.  So I prayed!  And fortunately, my prayers were answered.  She was born a fighter and to the amazement of all the NICU doctors and nurses, was soon able to come home.
As soon as Alyssa could move, she followed her two older brothers around.  She wanted to be with them, do what they did, and be just like them.  One time, at the age of two, she pulled off her shirt wanting to join in with their basketball game.  I had to remind her that she was a little girl.  Although she had a bumpy start to her life, she was a healthy, beautiful, rough, and tough little girl. 
A few months before she was to start kindergarten, she was jumping on a trampoline with her brothers and broke her leg.  She didn’t break it by falling off of the trampoline, but by landing on her own leg.  When she was in the first grade, she slammed her fingers in a cabinet and broke two of her fingers.  Most recently, this summer she fell off of her bike and broke both bones in her arm.  There has not been a cast that has been able to her down.  She always has somehow overcome what life has thrown at her.
In late October of 2010, Alyssa started wetting the bed. I honestly thought it was just a stage she was going through, even though she had never had a problem since potty training.   In all reality, this girl always played hard and crashed with exhaustion at the end of the day, so I assumed she was just tired and sleeping through it. She also seemed to be getting taller and with that, she seemed to be thinning. She was already petite, but seemed to be losing her full, baby cheeks.  In early December I started to notice Alyssa's appetite had decreased, but she always seemed to be thirsty.   By Christmas, Alyssa was drinking anything she could get her hands on.
Two days after Christmas, I took her to her pediatrician. They checked her glucose levels and her urine for ketones and immediately directed us to the emergency room. It all happened so fast and that was the first time I heard the words Juvenile Diabetes.
In the emergency room, Alyssa’s eyes filled with tears as she asked me, “Mommy, do I have to sleep here?”  It was a painful question to answer.  She was terrified and confused and I felt helpless.  I would’ve taken it from her if I could.
Alyssa was admitted into UNC Children’s Hospital and honestly the next four days are all a blur.  Her father and I were bombarded with information on diet and nutrition, blood glucose levels, meters, insulin injections.  We spoke to countless doctors, nurses, nutritionists, and diabetes counselors.  We were given stacks of pamphlets, brochures, and diabetes cookbooks.  I felt as if I was in a whirlwind.  I wasn’t sure if I could handle this.
Juvenile Diabetes, also known as Type 1 Diabetes, affects children and is normally onset at a very young age.  It’s a condition where your pancreas no longer produces any or very little insulin, a hormone that allows glucose to enter the cells and produce energy that you need to survive.
As parents, it’s our instinct from the moment our kids are born to protect them from any harm.  How could I do this when she was going to have to take four injections of insulin a day and have her fingers pricked six or more times a day?  Everything she consumes will have to be measured and calculated.  She would have the potential of heart and kidney disease, amputations, blindness, and early death.
I do remember the first night that we spent in the hospital.  My sons are both teenagers, so they were old enough to stay at home overnight alone.  Both I and my husband chose to stay in the hospital with Alyssa.  On our way up to her room, we passed other children’s rooms that were all decorated for Christmas.  On one of the doors was a sign that read, All I want for Christmas is to go home.  I couldn’t help but look into the room and it was apparent, at two days after Christmas, that this poor little boy’s Christmas wish didn’t come true. 
After Alyssa drifted off to sleep that night, my husband and I sat on the cot processing the day’s events.  It was as if we were reading the other’s minds.  We had both seen the same little boy, both had seen the sign on his door, and both said at the same time, “This could be worse.”  Our child had a disease that was manageable, although it wasn’t going to be easy, she could live with it.  And she was going to come home.  There were so many children in that hospital that would never see their homes again.
While we were in the hospital, Alyssa was given a little blue back pack that had a few things to help her adjust to her new life with Juvenile Diabetes.  It was called the Bag of Hope and inside was a children’s book with stories about a bear that had diabetes.  It included educational materials and DVD’s that we could read and watch at home. Also inside was Rufus the bear, a cuddly brown, stuffed animal that also had diabetes and was the main character in the book.  He was wearing a medical alert bracelet, a JDRF (Juvenile Diabetes Research Foundation) t-shirt, and he had patches on the back of his arms, his thighs, and his stomach; which are some of the locations that insulin injections are given.  Rufus the bear was a huge comfort to Alyssa.  She carried him with us around the hospital and he slept with her every night. 
When we came home from the hospital, I contacted Alyssa’s school because I was not sure what the protocol was for students that had diabetes.  The principal was very helpful and we set up an appointment to meet with her, the school nurse, and Alyssa’s teacher.  The process of her returning to school moved smoothly, as there were two other students in her school that also had diabetes.  Her teacher was trained and jumped right into monitoring Alyssa’s care. 
One afternoon Alyssa came home from school and said that lots of her friends were asking about why she was having snacks and why she had to go to the office every day before lunch, so she asked her teacher if she could read her class the book about her bear Rufus.  Alyssa read the book to her class that day and the next day she took Rufus to school.  She had accepted her disease; she wasn’t trying to hide it, and even at the young age of seven, thought it was important to educate her classmates.  I told her that I was very proud of her.  She looked up at me and said, “Mommy, I’m still the same girl.  I just have diabetes.”  After she told me about her experience at school, I began doing research about JDRF. I truly believe that the care package that she received in the hospital that included Rufus influenced her immediate adjustment 
The JDRF organization has been such a huge help to me.  They have tons of resources for parents of diabetics, information about advances, and they are the largest contributor to diabetes research.  Through my investigation, I found that a cure for this disease is within reach, I believe we will see it in Alyssa’s lifetime.  I decided that I had to be proactive in a search for that cure and joined JDRF as an advocate.  We, as a family team, “Alyssa’s Angels”, will also be taking part in our first “Walk to a Cure” in October.
Alyssa rarely complains.  She continually amazes me and is a blessing to have in my life as a daily reminder of life, humility, and a positive attitude.  My life has changed tremendously since her diagnosis.  There is nothing more important to me than my family and this has brought us all closer.  And, hopefully one day there will be a cure for my baby as well as all the others that face this disease every day.  I feel confident that one day I will be able to say, “My daughter used to have diabetes.”      

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