Our Story
On 9/29/2000 our beautiful innocent little daughter Sarah was diagnosed with Juvenile Diabetes at 3 years old. She and we had no idea the road that was ahead of all of us. I had only known 2 people in my whole life that had diabetes when I was growing up. Never in a million years would I ever think my child would have diabetes -especially since it did not run in either of our families. The doctors and nurses at the hospital were surprised when we told them no one on either side of our families had diabetes.
I remember like it was yesterday... It was a Friday afternoon. I had taken the afternoon off from work because I could not find a sitter. Earlier in the week our sitter had mentioned to us that Sarah had been drinking a lot. We did not seem all that concerned, I was actually trying to decide whether to take her to the Doctor's office or go shopping. We had called and the Doctor's office and they said we could come in and they would see her. The deciding factor was that it was a Friday and we knew the office would be closed for the weekend so we decided to just go and check it out. We had no idea what it might be.
On the way to the Doctor's office Sarah and I stopped at Dairy Queen for ice cream. While we were at the Dairy Queen counter, right in front of the cash register were 2 bottles of water. Sarah asked me if I would buy one for her. I told her "no -we were having ice cream". I thought she just wanted the water because she saw the bottles - they were right at her eye level. Looking back I felt awful as she really wanted and needed the water.
At the Doctor's office they asked me to have her give a urine sample. She did not comply so they sent us home and told me to just bring a sample back later that afternoon.
On the way back home from the Doctor's office, which is only about 10 minutes or less, Sarah was complaining about how thirsty she was. I kind of yelled at her and said "how can you be thirsty -we just had ice cream?" She started to cry and said "Mommy I am really thirsty". I told her I would get he a drink as soon as we got home.
When we got home I gave her a big glass of water and she drank it right down and then said she was still thirsty. I did not understand but I knew this was not like her because first of all she never drank water and she wanted more. Immediately she had to go to the bathroom so I struggled to make sure we got the sample so we could take it back to the Doctor's office.
Back to the Doctor's office we went. After a few minutes the Doctor came out to the waiting room to speak to me, she said "Mrs. Johnson we think Sarah has Diabetes". I was shocked. I did not even know that is what they were testing for. I cried right in the middle of the waiting room. Sarah was looking up at me saying, "Mommy, don't cry". The Doctor said, "We would like to have it confirmed with a blood test".
Before going over to get the blood test. The nurse at the Doctor's office weighed Sarah. She said Sarah was 36 lbs. I said, "What ?, -that can't be, - We were here 10 days ago and she weighed 43 lbs, -- Weigh her again"- I demanded. So the nurse did. It was true she was 36 lbs. Sarah had lost 7 lbs in 10days. How can that be?
So Sarah and I went over to the Westerly Hospital next door. On the way over I called Chris who was at work and between sobs I told him what the Doctor had just told me. I told him we were going over to have the blood test done and that I wanted him to come meet us back at the Doctor's office. Sarah cried -she did not want to be poked. So I told her I would get her a toy if she was a good girl.
Chris met us in the parking lot of the Doctor's office and we went in together. The Dr. confirmed the diagnosis. Sarah had Diabetes. She gave us a choice. She said they would take her in an ambulance up to the Children's Hospital in Providence right away - but that might scare her, or if we went right home and packed a bag she said that they would be waiting for her at the hospital.
We went home packed a bag, I called my Mom and Dad to tell them the news, and then we went up to the hospital. We listened to Billy Gilman's "One Voice" CD all the way up- about an hour away -it was Sarahs favorite CD. We stopped and let her have McDonalds (-the Dr. Said it would be OK). We also stopped and got her that toy. Which worked out well as we spent a long time in the ER. When we got to the hospital -They were waiting for us just as the Doctor had said- The waiting room was full but as soon as we told them who Sarah was they took us right in.
The first thing they did was put IV's in both arms - the poor thing -both hands were bandaged up and she could not use either one. Not to mention it was an ordeal getting them in -Sarah screamed and we had to help hold her down. Chris and I cried. We finally got in a room about 1AM. There were all kinds of monitors attached to her and they kept going off all night. Chris and I cried all night. We both were thinking not our daughter. How? Why? Is this really happening? What does this mean? Now she will be different. What kind of a life will she have? She is so beautiful! Why? Why us? - This is not fair! (We had just lost Chris's son Michael 3 years earlier to a drug overdose. To read Michael's story visit my Our Favorite Charities link which can be found on the home page and have a Kleenex box ready if you don't have one already...)
The next morning when the Dr. came in, - the first thing he said to us was that he was very sorry that our daughter had diabetes- that has always stayed with me, as he was truly sorry. Well we spent 5 days in the hospital learning all about Diabetes, carbohydrates and how to draw up and give shots and getting Sarah used to the idea of being poked. The staff was excellent!
When we got home I thought there was no way I could ever work and manage this disease for my daughter. But thanks to the best caregivers and friends who were very supportive I did go back to work. Everyday we would chase Sarah around the house to give her shots. She had to have 2 shots every day along with multiple finger sticks. We did this for 2 years. (1,460+shots). Then we switched to YALE Pediatric Diabetes Group in 2002, as Hasbro Children's Hospital would NOT put children under 12 on the pump. (that is another story- I'll tell you about that another time) Sarah got on the Pump at 5 years old- right before kindergarten started.
Thank God for YALE and the Minimed Pump. This was the first sign of a rainbow in our journey. Finally we had some normalcy in our lives. Sarah could be a kid again... no more shots, no more time clock, no more "NO"'s. The pump has really been the best thing that has happened to us in our journey. I feel sorry for people I meet that have diabetes and they are not on the pump. Don't get me wrong we still have to manage Sarah's Diabetes EVERYDAY - ALL DAY but now she is as free as a diabetic can be.
Sarah is now 19 years old, doing very well on the Pump, now we are waiting for the cure...