Type One Diabetes Is Not Flexible....

My only daughter is the Mother of a child diagnosed with Type One Diabetes. Adalyne Erin Rose is my granddaughter. Addy is the sweetheart child with her arm wrapped around her mother. Kaelyn and Maya are her darling younger sisters. In every picture in which Addy and her Mom are standing close, you will see that Addy is clinging to her mother. For Addy knows that her Mother is her life sustaining pancreas. Wendy is not just a Mom to Addy, but also a life sustaining organ. Unfortunately, I must watch from a far as my daughter and her husband run their lives and that of their family in circles trying to keep one step ahead of this miserable disease. I admire both of them beyond comprehension.

One thing for sure, diabetes is not flexible. Although, it is rigid in it's ability to wreck havoc of the best of plans. It doesn't make any difference what plan has been developed. Something so simple as a trip to the store can put everything on hold until the monster of diabetes is taken care of. Diabetes is selfish in it's relentless desire to make life miserable for individuals and families who live with it. Diabetes demands that everything in life revolve around it's consuming appetite.

Sleep is interrupted. Parties go unattended. Grades suffer. Health insurance is vital. Sick time a necessary benefit. Budgets strain at the heavy demand of diabetes. Bodies, young and old, often give in to it's harmful and often deadly effects. Parents struggle to keep the balancing act of diabetes and life even. Siblings often have less of everything, including their parents time. Why? Because the demand of diabetes must be met first in order to sustain a healthy life. Diabetes is anything but fair.

I watch in awe at the many people whom I have come to know because of Diabetes. I watch as they struggle to care for themselves, their families and their children. I watch young mother's with years of inadequate sleep wake up everyday with a smile. I watch as they struggle to grip the fear that naturally comes with the diagnosis of diabetes. I watch as they try to figure out how to manage the cost of diabetes. There is no choice with diabetes. Diabetes always wins. Why? If diabetes does not win, the alternative means death, or terrible disability.

Even though diabetes is a deadly, catastrophic disease, often it is taken lightly. Is it because so many people are affected? If so, then it must take on a new meaning. It must be labeled for what it is, a life altering and could be deadly disease. It must be hated and despised by all. It must be as well known as Cancer. Money must be made available for research. For without proper attention, it will harm and possibly kill many children and young people more often. Schools must be educated on the need for proper monitoring. Dr.'s must pay attention to the slightest symptom which may link a person to diabetes. Families must be supportive and compassionate. We must hold up the banner to find a CURE! We must never let down or give up. We must be strong warriors in the fight against diabetes.

I HATE DIABETES. But, I love the people who carry it's diagnosis. And, I will fight for everyone of them.

BG Infant Screening...

National Headquarters:
The American Academy of Pediatrics
141 Northwest Point Boulevard
Elk Grove Village, IL 60007-1098
USA
847/434-4000
847/434-8000 (Fax)

Washington, DC Office:
The American Academy of Pediatrics
Department of Federal Affairs
601 13th Street, NW
Suite 400 North
Washington, DC 20005 USA
202/347-8600
202/393-6137 (Fax)

I am on a letter campaign to the American Academy of Pediatrics, requesting that BG testing via urinalysis be part of the 6, 12, and 18 month visit and starting at age 2, BG via venous draw annually. I feel that if BG monitoring was instituted as the Standard of Care for infant and well child visits, T1D would be diagnosed early preventing DKA.

Rationale:

To reduce overall health care costs in managing T1D
To increase public health awareness and therefore, reducing the incidence of Diabetic Ketoacidosis.

Issues addressed:

Change in USA Standard of Care, BG Monitoring starting at age 6 months.

Change in Current Policy Statements regarding Standard of Care for BG monitoring

Developing cross sectional qualitative and quantitative research studies of need

Determination of Need for Medical Insurance Reimbursement

Change is never easy.

I Just Did Not Know...

Sometimes when I tell Adalyne's story I get a response that at one time made me feel defensive. "Didn't you know? You are a nurse. You couldn't figure it out?" I must admit for a long time I went through the "I should haves and the I could haves." But in reality, the answer to all of these questions is, no. I didn't know. I didn't figure it out. Everything I know now is in HIND SITE. In looking back, all signs and symptoms that could even be attributed to a higher than normal BG were subtle. They certainly didn't stand out to ANY doctor who cared for Addy. And, they did not stand out to me. I was not and am not a fortune teller. I am a Grandma, before I am ever a nurse. Even though diabetes has been a part of my life for almost 50 years, when it came to Addy, diabetes was the last thing on my mind. In our family, we have no history of type one diabetes. And, we come from a huge family. My Dad came from a family of twelve, and my mother from a family of nine. I have no idea how many generations of cousins I have. There are just too many to count. Although, I can say with assurance, in the first generation there is not one case of T1D. Not one.

Addy was born perfect and beautiful. She met all of her milestones right on time. She sat up, crawled, walked, and talked in perfect succession. She passed every well child check with flying colors. Even with small illnesses there was no indication that something sinister was lurking. Addy always popped back without complication.

Wendy and Jason jumped into parenthood without difficulty. I remember looking at Wendy and thinking, wow, she is so good at this! She was on top of everything. She seemed to know so much more than I did as a new Mom. She was relaxed, breast feeding came easy for her. I didn't have to teach her a thing. She knew how to bathe, diaper, and burp like a pro. She was able to pick up on a moments notice, grab her sling, baby and go anywhere. Me, it seemed like I had to plan for a day before I could hit the door. For Wendy and Jason, everything was so natural. They took Addy everywhere. She was never left with a babysitter. She automatically became an "appendage" to both of them.

Diabetes came out of no where. It hit all of us squarely between the eyes. I walked around for a month in disbelief. Not Wendy and Jason. They jumped in with both feet on the ground running. Were they afraid, taken back, and shocked by Addy's diagnosis? Yes, of course they were. But, that didn't keep them from facing facts.

This is the history of how Wendy and Jason have faced every diabetic, celiac mountain. They put on their climbing gear and start for the mountain without hesitation. I am completely awed by their fortitude. I am awed by how they attack diabetes, and how they attack life in general. They are true life partners and warriors for their family.

Diabetes was a complete surprise. It was shocking. The thought that Adalyne Erin Rose could have T1D was outrageous. But, none the less, sweet Adalyne was diagnosed with diabetes at 24 months of age. Our family is prepared to battle for Addy and fight diabetes. It is true, I am just the Grandma. It is true, I live 2500 miles away. It is true that I have a busy life. It is also true, there is not one thing that I wouldn't do to help Wendy and Jason fight this disease and that of celiac.

What can I do? I can do everything I can to bring attention to T1D. I can help find a cure by supporting JDRF as an advocate, being a fund raiser, becoming a fount of information, and offering support. I can put on the Amour of Christ and jump head first into battle. Just like Wendy and Jason.

I am on a letter writing campaign to the American Academy of Pediatrics, requesting that BG testing via urinalysis be part of the 6, 12, and 18 month checkup and starting at age 2, a BG via venous draw. I feel that if BG monitoring was instituted as part of the well child visit, T1D could be caught early, before the dreaded DKA.

Just last week I was asked at a staff meeting, how did I finally come to grip with Addy's diagnosis? There was only one way. I can guarantee that I take no credit. My personality is one of over responsibility. When I felt I couldn't stand it any longer, when the "I should have" became too great, I simply laid my burden at the foot of the cross. Jesus took care of the rest. I no longer spend precious energy on the past. I focus only on the future and a CURE for Type One Diabetes.

CURE is my last prayer at night. COURAGE is in the middle. My first prayer is that of THANKFULNESS. I am so thankful that my sweet Addy has such diligent, diabetes busting parents.

Happy 233 Anniversary, USA

Our family has a long history of service to the United States, our beloved country. My Father, G.S. Dial was a Navy veteran of WWII and Korea. Wendy's Dad, is a Vietnam Era Army veteran. Jason is an Air Force veteran of Bosnia. Our family has been greatly blessed as all of our hero's did return to the loving safety of our family. May Jesus bless the hero's who died in service to this country and the families whose tears will flow for the sake of freedom.