When Your Child is Diagnosed with a Disease

I had been having one of those months. School had just started and we were struggling with the new routine. Adam had started to walk and explore the house by leaving a trail of destruction wherever he went. Audrey wasn’t acting like herself and I knew something was wrong but I just couldn’t figure out what. We put our house on the market and I was stressed about keeping the house perfectly clean and having people look at the house every few days. I would tell myself everyday, “I don’t think I can handle anymore. This is all too much…I’m barely hanging on.” I know that isn’t the best attitude to have…but I was having a hard time. Then everything came crashing down around me. I thought I couldn’t  handle anymore…well I was about to learn how much I can actually manage.

Audrey was diagnosed with Type 1 Diabetes on September 26th, 2010. My husband, Audrey’s father, has had Type 1 Diabetes since he was three years old. It was always in the back of our minds that one of our kids could end up with the disease…but I truly believed we would escape it. The diagnosis was a huge shock. Type 1 Diabetes (also called Insulin-Dependent Diabetes or Juvenile Diabetes) is when the body attacks and destroys the insulin-producing beta cells of the pancreas. Insulin is the hormone that acts like the key that unlocks the cells so glucose can get inside the cells and be used for energy. Without insulin, glucose builds up in the blood and causes serious damage to the organ systems in the body. People with Type 1 Diabetes must take insulin through injections or an insulin pump to stay alive.

The number one question I am asked is, “What happened to make you take her to the doctor?” Like I said…we knew something was “off” with Audrey for a few months before she was diagnosed. I think it began when she started being extremely mean to her little sister. Then the outrageous tantrums started. Then she began to wet her pants. It was just tiny little leaks. Only enough to get her panties damp. All summer long she was hungry all the time. She wanted to eat constantly and it was getting on my nerves. She wasn’t gaining any weight so I assumed she was growing like crazy. Once she started second grade in August, she was extremely unfocused and distracted. It was like a veil was over her eyes…she was never really there. Then she started to come out of her bedroom every night to tell us her stomach hurt. We assumed she had come up with an excuse to not go to sleep. Our family doctor attributed the urine leaking as a growth spurt…her bladder muscles had to catch up. Also, she could have been waiting too long to go to the bathroom or not emptying her bladder enough because she was in a hurry.

I was worried sick all the time because I knew something was wrong and I didn’t know how to fix it. I constantly had a feeling that something horrible was about to happen. Everything began to fall into place starting on September 25th, the day before Audrey was diagnosed. I took Audrey to a birthday party at a park. It was a hot day and she was playing outside with her friends. Audrey was extremely thirsty but she was running around on a hot day so I didn’t think anything of it. Then I watched her walk across the lawn to go to the bathroom several times. I thought that was really strange. Then she wasn’t hungry and didn’t want to have any birthday cake at the party. Again, it was a hot day and that didn’t seem too weird. I took her to my parents’ house the next day to ride horses. That is her most favorite thing to do. The whole time we were with the horses she looked like a zombie. No expression or emotion. I would talk to her and she wouldn’t make eye contact or respond. Her behavior was so strange that I asked her to get off the horse. She started to cry and didn’t stop crying for an hour. She was just weeping quietly. After she took a shower that night she had one of the most intense temper tantrums I have ever seen. My husband, Blake, and I were dumbfounded. We couldn’t tell what set her off and we couldn’t reason with her. I told him about her strange behavior earlier that day with the horses and we just stared at each other for a long time. What the heck was going on?! I felt like I was going to burst from all the worry. Audrey cried herself to sleep that night. An hour after she went to sleep we heard her start sobbing again. Blake went into her room to check on her and she had wet the bed. I got off the couch and met him at her door. He told me he wanted to test her blood sugar. I backed up to the couch and sat down.

Oh my God. She has diabetes.

Of course! It made so much sense…it explained so much. She didn’t even fight the finger poke. It’s like she knew something was wrong and we were finally going to fix her. I will never forget sitting on her bed holding her while we waited for the blood glucose meter. The meter beeped and her blood glucose was 415. A normal range for a 7 year old is 80-180. She was definitely way too high.

Oh my God. She has diabetes.

I walked out of her room and Blake met me in the hall. We hugged and started to cry. “No…it’s a mistake. Sometimes kids can be high. No….it’s not true.” I said that over and over into Blake’s chest. He didn’t say anything…he just hugged me very tight and cried.

I called my mom so she could come stay at my house because our other kids were sleeping. I helped Audrey get dressed in comfy clothes and packed enough to keep her entertained for a few days and then we called the on call doctor before heading to the emergency room. We told Audrey that we were taking her to the hospital because she was sick and they were going to make her feel better. She looked so relieved…as if she had been trying to tell us something was wrong for a long time.

That is when I started shaking. My whole body was shaking as if I was freezing cold. My teeth were chattering. Blake told me it was the adrenaline and shock. I didn’t like the way it felt at all. I needed to be in control of my emotions…I was a mom on a mission and I didn’t need my body getting in my way. Shortly after we admitted her to the hospital, the shaking stopped…thank goodness. Then they confirmed our fears…Audrey did indeed have Type 1 Diabetes. They started her on IV fluids to flush the sugar out of her blood. Then they added insulin into the IV a little bit at a time. They didn’t want to bring her blood sugar level down too fast. It was a long night of no sleep and around 4am we got to ride in an ambulance for the one hour drive down to UC Davis Children’s Hospital. The next few days were spent teaching Audrey about diabetes and learning what her insulin needs are. Since my husband is a Type 1 Diabetic, the disease isn’t a stranger to us and we already know everything about it. Unfortunately, being a mother of a diabetic is a lot different that being the wife of one. I wasn’t prepared for how difficult it would be.

Not only did I have to hold my baby while they put her IV in…I had to hold her down while she had to get her finger poked and squeezed every hour. She would scream, cry and fight us. It would take a nurse, me and my husband to hold Audrey down to give her the insulin shots. I was running on 48 hours of no sleep and the idea of having to wrestle a screaming child every few hours every day was scaring me to death. She did get a lot better about her injections before we left the hospital. After a few days, we were released from the hospital and Audrey was to stay home from school until we finished fine tuning her insulin amounts.

The next few weeks were spent having to measure and weigh all of Audrey’s food (I became a carbohydrate counting expert), then we had to report to her doctors every evening and they would change her insulin amounts. Then I would start all over the next day relearning what to do because the insulin amounts changed. My days were very full. Besides having a 4-year-old and a 13-month-old…I was helping Audrey with her schoolwork and had to meet with the school to do diabetes training with the staff and fill out legal forms. I had meetings with the principal and Audrey’s teacher. I spent most of my energy transitioning Audrey into her new life. She would tell me daily that she didn’t want to have diabetes anymore. That broke my heart…I didn’t want her to have diabetes anymore either. She amazed me when a couple days after we got home from the hospital, she started doing her own blood tests. She gets her meter all set up, pokes her finger and tests like a pro! I am so proud of her and how responsible she has been about the disease from the start. It is amazing how receptive kids can be. Since Audrey can do her own blood tests, I only have to go to the school at lunch to administer her insulin. I have to drive to the school at least three times every day….I’ll admit…it is getting tiresome.

It has now been two months since Audrey was diagnosed and she has been doing fantastic. At first, I actually felt better because I got my answer. I was so worried about all the changes I had seen in her, so when I finally got to be proactive about it, I felt better. In the past month, we sold out house and we managed to make it through Halloween, school parties, several birthday parties and Thanksgiving with a diabetic child! Audrey is learning what her body feels like when her blood sugar is too low or high. She is learning what her blood glucose readings mean and how to count carbohydrates. I’m so lucky that she is handling it so well.

Audrey is doing amazing…I’m not doing as good. Now that the house is sold, we don’t know when we are moving…or where we are moving to…so that has been a huge stress. There are nights when I’m trying to go to sleep and I realize that this isn’t a round of antibiotics and Audrey isn’t going to be cured. This is Audrey’s disease and she will always have it. I’m angry at diabetes for making my little girl have to grow up too fast.  A mother needs to mourn the loss of the child she thought she had. As my mother-in-law so perfectly explained, this process is like mourning the loss of your healthy child and giving birth to a child with a disease. That notion has helped me tremendously. I think the hardest part for me right now is the lack of support from my family. After Audrey was diagnosed, I needed my family more than I ever have before and it seemed like they were all so far away.  I feel like my family doesn’t realize how life changing and hard this has been for me. If I’m having a hard day…they think I’m in a bad mood. I wish my parents would give me a hug and tell me that it’s ok to feel overwhelmed and sad. My in-laws have been extremely helpful and supportive. My friends have been amazing…they let me talk about the disease and check on me to make sure I’m doing alright. Most importantly, my husband has been so wonderful and our marriage  has gotten even better during this sad time.

I play the optimistic mom and put on a happy face for Audrey’s sake. I never want her to see me scared or sad. I want her to know everything about diabetes and learn the responsibilities that come with it, but I don’t want her to worry more than a 7 year old should. I also have to make sure Audrey’s little sister and brother are getting everything the need from me. So every night after the kids go to bed, I fall apart because I don’t know where else to put my pain and heartbreak. I can hardly eat and I have a hard time falling asleep at night. When I send Audrey to school I have to live with the fact that she can have extreme hypoglycemia or hyperglycemia, go into a coma or die. I have to somehow treat her like a normal child but never forget the reality of her disease.

I know that two months is a short amount of time and the shock and sadness is still fresh. I also know that from this point on I will begin to feel better about everything. We are planning to go to family diabetes camp this summer where I can connect with other moms and Audrey can meet other kids that understand what it’s like to live with diabetes too.

I think it is OK to feel awful after your child has been diagnosed with a disease. I don’t know if I am necessarily going through specific stages of the grieving process…but I feel like I am on some kind of journey. It might have been a difficult couple of months but I know that when we hit the one year mark I will have found peace and acceptance with this diagnosis and disease.

I hope my story and struggles can help another mother who may be facing the shock of a life changing diagnosis. I continue to remind myself that it can always be worse. Even though it can always be worse…I think it is good to let yourself feel the emotions of  the situation at hand. Seek help if it becomes too much for you…but remember you are not alone.

When it gets tough…turn up the music and dance! Elizabeth Amatangelo

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