Saturday, March 17, 2007

Painful St. Patty's Memory

Many thanks to Barb Marche of Diabetes Advocacy for this poignant St. Patty's story. Barb does a tremendous of work in the juvenile diabetes community in her native country of Canada. She helps people fight for their children's rights in schools, helps them find information about the disease, and lobbies with politicians. Please stop by her site for more information. Barb also has a store on her site that you can visit.

Barb's son was diagnosed exactly seven years ago. I am pleased to welcome her as my guest today. Her story hits me at the core. Our son, too, was very very ill when he was diagnosed. I truly remember the terror of which Barb speaks. Take it away, Barb.


March 17th , St. Patrick’s Day. A day of green beer and pots of gold. March 17th --the day my son barely clung to life. The day prayers were said from one end of this continent to the other for my baby. He was a baby. He was 2 years old and weighed 11 kg. He was dying and all we could do was watch and will him back to life.

My son hadn’t been hit by a car. He hadn’t fallen in the house. He was hit by something far more fatal. My son had Type 1 diabetes and no one realized it. At that time, his symptoms were attributed to an ear infection, cutting teeth, the flu. I was his mother but they were the doctors. They were the professionals. They knew best.

There are moments in everyone’s lives that you remember every single detail. March 17, 2000 is one of those days. Liam still wasn’t feeling well. He was soaking his diapers as fast as I could put them on him. He was strong enough to open the fridge and drink a litre of apple juice but he couldn’t even talk. All he could do was lay in my arms and sleep. We had an appointment to see our family doctor. We had already been to the ER and were sent home with antibiotics.

Our appointment was in the afternoon. I went and got my hair cut. I stopped by the drug store and bought baby food hoping that he would keep that down. Finally we headed to the doctor’s office. Liam was still asleep. His breathing was raspy. His body was cold. I was getting scared. As we waited in the reception, a woman told the staff to take Liam before anyone. His body was so lifeless. The staff was scared. We were scared.

The doctor came in the room and only looked at Liam. He said words like diabetes, ketoacidosis, chest x-ray and get to the hospital now. They were waiting for us at the hospital. They drew blood from his lifeless form. I held him up as they did a chest x-ray. We went back to our doctor to wait for the results. It didn’t take long.

I was brought into his office and he looked as scared as I felt. He told me to take my son and to get to the hospital in the next town as fast as I could. He told me that they would be waiting for me but there was no time to waste. We wasted no time. There was a snow storm but we were an ad for Jeep. I willed Liam to live the entire one hour trip there. I was dropped at the front door and ran for the reception area. The woman couldn’t do his paperwork fast enough for me. I was terrified.

She finally brought us up to the Peds floor and they looked at him. No one looked positive. They took his little body and put in on a baby scale to weigh him. The doctor arrived and quickly moved him into ICU. We were terrified. We were asked to leave the room as they put a heart line in our baby. Words flew around us but some reverberated-- 12 hours. That was our time frame. If he could make it the next 12 hours without having a heart attack or a brain hemmorage he would live. After 12 hours the doctor would look for brain damage and kidney damage.

I stayed by his side, praying, willing him to live. Liam’s father stayed with our other son on the couch outside. Everyone knew how serious this was. I called one person—my mom. I told her to call anyone else. My sister inlaw called the hospital and found out how serious things were. Our doctor called too--every day we later learnt. The lab people called. Everyone was pulling for my baby.

It took two weeks for him to return to himself. He couldn’t walk. If he fell over, he was too weak to get back up. He was the picture of skin literally hauled over bones. He was my baby but it was the ugliest thing I had ever seen.

To look at him now, you would never know that this had happened. For me it was yesterday. For Liam? It was a lifetime ago. In 7 years he has lanced his finger and tested his blood over 25,550 times. He received over 6180 injections of insulin over a 3 year period and for the past four years has changed his infusion set over 400 times. He has elevated cholesterol at the ripe old age of 9. He has known the word carbohydrate since he was 3. He knows how his body reacts to exercise. He can make his insulin pump sing. He calls it “his life”.

His pump allows him to go to birthday parties on his own and give his own insulin. His pump allows him to graze at events without having a needle every time he opens his mouth.

We have come a long way. When Liam was first diagnosed we used Humalog and HumalinN. We were cutting edge. His meter took 30 seconds to count down and the drop of blood had to be the size of his finger. Seven years later we are blessed to have an insulin pump that offers him his freedom. We have meters that give him a reading in 5 seconds and take a pin drop of blood.

All this has cost us. In dollars and cents…We have spent over $26,000 in test strips, close to $4000 in insulin, $6000 for an insulin pump, $7000 in infusion sets for his pump, $500 in insulin cartridges, and more for things like numbing cream, foods, bandages, tape and glucose tablets. For seven years, we have spent over $44,000 to keep our son alive. In January I will need to purchase a new insulin pump for him. There is no insurance coverage and no provincial help for me. I will look to pay for this myself. His father will help but burdened with such a high cost has asked if it's worth it?

It is worth it--to see my son run and play with others; to see him not have to stop and eat at specific times; to see him not need Mom around for every injection; to see him lead as normal a life as a child with diabetes can is definitely worth it. It's worth not sleeping at night because I have to test his blood glucose levels. It's worth the financial strain. It's worth the emotional turmoil. It's worth the fights to protect his rights. It's worth the time spent educating and advocating. It's worth it all because he is alive today!

Thank you so much, Barb, for your candid story. Comments welcome!