Monday, January 23, 2012

In the Beginning

Nikki the year of her T1 diagnosis: Age 5

Nikki approximately 9 years later: Still Smiling

I've been going back over some old blogs and, because Nikki's 9 year 'Live-a-betes' anniversary is just around the corner, I thought it would be a good idea to share the beginning of our journey with friends and family who may not be aware of the events that took place in the early weeks of our life with diabetes.

This blog is a reposting. It describes the first part of our life with T1.....the diagnosis.

Diabetes Journey: Part 1

It was a busy afternoon in April 2003. I had both my girls: Amber age 9 and Nikki who had just turned 5, in the back seat of the car. We were on our way home from a trip to the mall when Nikki announced “mommy that pointy thing is hurting my stomach”. I literally felt exasperated; Nikki complained constantly about her tummy hurting, we had done everything we could to figure out why and it always made me feel helpless when she fussed about it. I said “Nikki your tummy always hurts honey; I don’t know what else I can do”. My sweet little girl accepted that answer and complained no further.

About an hour after we got home, I had fed the girls lunch and was busy with this and that around the house. The girls were playing downstairs. I went to check on them and found my baby Nikki on the floor, sitting up, leaning against the couch with her hand on her chin, sound asleep. I remember thinking “isn’t she so beautiful and sweet”; and I went and got my camera to take a picture.

A day or so later, April 5 to be exact, I had just finished placing dinner on the table and my Nikki immediately reached for her drink first. I said “Nikki Marie you have to stop drinking all your meals, you can’t have another drink until you eat something”. Her little face fell; Nikki doesn’t like to be scolded and is very compliant, so she complied. She ate but continued to ask for drinks throughout the night, her favorite Gatorade. That morning I bought a new gallon of Gatorade thinking it would last quite a while. By the next morning, April 6, 2003, I realized it was all but gone, that’s when I instinctively knew something was very wrong.

I called one of our closest friends, who also happened to be our family doctor, and told him what had been going on. He told me to bring her in right away. I loaded up Nikki and Amber and off we went. On the way, I phoned Bryan who was traveling for work about 4 hours away and told him I was taking her to the doctor. He said “just call me and let me know what Troy says”. The three of us sat in the examination room, unknowingly waiting for our lives to change forever. Troy came in listened to me explain what her symptoms were and told me we would have to check her blood sugar via a finger stick. My niece Brittany, who was an intricate part of our lives, had Type 1 Diabetes so we were all very familiar with “finger pokes”. Nikki protested but managed to make it through what would be the first of a million finger pokes.

Troy left the room and returned a few minutes later with tears in his eyes. He looked at me, put his hand on my shoulder and said the words I dreaded “Sheri her blood sugar is 545, Nikki has diabetes”.

There is no way to describe shock, so I won’t try. A million things went through my mind and then my mind went blank. I didn’t have time to indulge, I needed to fix this and I needed to know what the next step was. Troy said to me “get your running shoes on, I want you to go home, pack her a suitcase and head directly to Cincinnati Children’s Hospital”. I shook my head yes, gathered my precious girls and began this new journey.

The first stop on the journey was to call my husband. “Nikki has diabetes”. I don’t remember much more of the conversation except him turning the car around as we spoke saying that he was on his way home, he would come directly to the hospital; he was still about 4 hours away. In the meantime I have 2 very quiet, very young little girls trying to figure out what was happening. I tried my best to briefly explain what was happening and told Nikki that she was like Brittany, she had diabetes and now we were going to the hospital to get her medicine and learn all we can about how to take care of her. At that point, she simply didn’t understand. Like many children with diabetes, Brittany never really complained about her diabetes, so the girls really didn’t get how big this disease is. I called my mother to tell her that another one of her grandchildren had diabetes. She was very quiet and I really only remember telling her I would call her later once I knew more. She lives about 1-1/2 away from me. The next 5 days were a blur and full of more doctors, dieticians and diabetes social workers than I can remember. Instead I will touch on few events that are very clear to me during that time.

The first would be Nikki’s slow realization that her life now consisted of daily interactions with needles; I remember the way her cry sounded. I remember how helpless I suddenly realized I was and how useless to her I thought I was going to be. More on this later.

The second thing I remember is my mother walking into the emergency room. I didn’t know she was coming. As I said, we live an hour and a half away and by the time she was able to arrive it was dark and the hospital is located in a rather scary part of downtown Cincinnati. But there she was, as brokenhearted as I was.

The third thing I remember is my husband walking into the room and the overwhelming relief I felt that we were all together, the 4 of us. The following days consisted of IV’s, shots, learning to eat and when to eat, silent grief and Nikki’s anger. Nikki was mad at me, her mommy, because I was letting this happen and I wasn’t fixing it. I agreed with her. Finally, we were released to go home. Now the journey really begins. Diabetes affected not only Nikki, but our other child waiting at home. She was trying to figure out where she fit in the family dynamics now that this new, unwelcome ‘thing’ had arrived to plant itself firmly in the middle of our lives, forever.

To be continued…….