I know these people very well-they’re my own mom and dad.
The Girl’s Guide to Diabetes is focused on women (although many men do read). It occurred to me a while back that diabetic women aren’t the only ones who look for helpful articles to read. Parents with diabetic children do as well.
My heart goes out to parents out there who have children with the disease and doubly so to those who, like my parents, have more than one child with the disease.
In 1984, my family moved to the United States from Venezuela to live in the land of opportunity. Everything went as planned until 1994 when my youngest sister Ana, was diagnosed with type 1 diabetes at age 3. I was hit very hard by this. I was only 10 years old at the time but, I researched all about the disease and became well acquainted with the basic information about diabetes. A few months later I was 11 years old and 2 months into 6th grade. I sat in science class and thought about how I had been feeling the past few days. Since I was well aware what the symptoms of diabetes were I thought to myself, “I have diabetes, too”. I went home and had my mother test my sugar and it was 401. This was after having ate tons of Halloween candy so it seems I caught my own diabetes very early.
My parents experienced raising one child with a peaceful, cooperative nature who only knew of life with the disease and another (myself) who everyday thought back to the days without the disease when life was good and continuously rebelled against reality.
Ana at age 6, testing her blood sugar
They also dealt with 3 other non-diabetic children, whom I fear received a little less attention because of Ana and I requiring so much. It isn’t easy for anyone, being in a diabetic family. I hope all of you dealing with a child with diabetes hang in there and work together to support each other.
I want to do more interviews with parents-specifically mothers of diabetic children so If you are interested please contact me via email or in the comments and I will definitely get back to you.
Below is an interview with my own parents German and Maria Elizabeth. M is for Mom, D is for Dad, and C is for their collective answer.
Please let us know what you think in the comments!
What was your initial reaction to the news about Ana and I?
C- Let us tell you the story of how things started. Ana was diagnosed on February 28, 1994. Her signs started two months earlier when your Dad noticed that she seemed to be losing weight. I called the pediatrician and he told us to check her weight and let him know if there were changes in the range of 1-2 lbs. We went and got a scale and weighed her every day and for two months we saw no difference. However, even though she was almost potty trained, she wet her bed sometimes at night. I (mom) thought that she was not ready yet. Still your dad was noticing that at every meal Ana would finish everyone’s cup of whatever beverage we had. When we were out she always needed to go to the bathroom, she was always drinking, and therefore, she needed to pee. I remembered at yours and your brother Alejandro’s basketball games how I would miss some of your plays because I had to take her to the bathroom. I would be upset for all these trips to pee, and it never crossed my mind of the possibility of something wrong with her, much less diabetes, after all nobody in the family had it. So on February 27, your dad decided to put a 5lb bag of sugar to check the scale and it did not move, so no wonder we could not see a couple pounds difference, he also noticed her skin between her legs was very flabby so we decided to make a sick appointment the next day. After the doctor heard our concerns he did a blood test to find her glucose was in the 400s. We then had to take her right away to the hospital.
M- So I was in shock and pain but also I felt remorse for the times I got upset because she kept wanting to go to the bathroom. I cried when Ana was diagnosed because she was only three years old and I did not know much about diabetes. With you it was more painful, I knew all the health risks and most of all the control and care you needed and I knew it was going to be very hard for an 11 year old girl.
D- For me the shock came later, the more I learned about the reality of diabetes, the damage that it would or could cause to our daughters and their dependency on man-made insulin- which is not a cure.
Were you more frightened for Ana since she was so young at diagnosis?
M- Definitely, yes! But also because all of the pricking and shots she would have to endure, since I had no idea of how Ana was going to react. It was painful. But then again, God only gives you what you can handle and Ana was so calm and sweet about all the control she needed, never to complain. Then with you it was different, because you knew more and you seemed to accept it as something that you had to take care of.
D- For both of you, it was more like to subdue to faith and to knowledge- following the doctor’s instructions (the most immediate knowledge), and learn at a faster pace.
What do you know now which you believe might have have helped you to know back then?
M- That any illness can hit your family, even if nobody had it before. That this “diet” that you girls had to follow should had been the norm for all of us. That anything you eat becomes sugar, some foods faster than others, that portions are VERY important, variety of foods are a must, most of all balance between diet, medicine and exercise is a key factor for anyone. There is no such thing as a diabetic diet, just a healthy diet.
D- That a lot of things can trigger diabetes, not only genetic makeup. That food can have an impact as well.
Did you ever think of us as a “diabetic family”?
M- No, I did not think of us as a diabetic family, you and Ana were the diabetics, the rest of us could continue the way we were; a mistake because the chance for diabetes lurks in the family still today.
D- Not then, now I do. I still think that we are a Type I diabetic family and we could even become a type II because we have not adjusted our diet as we should.
What advice would each of you give to a new parent of a diabetic child?
M- Learn as much as you can, knowledge is power. View the situation as a chance for the whole family to develop better dietetic and exercise habits that all can do. Do not panic, but neither get too complacent about your child’s diabetes care, depending on their age, you may have more or less involvement, still, be always involved, let them know that here is a person that understands and cares about them more than anyone.
D- Read as much as you can about diabetes. To accept the diabetes and not to have it as an enemy, but to accept the dependency on insulin and to make them understand how import good control is. We should give them more support by assuming their healthy diet and exercise habits, not to have separate foods.
C- Look for a physician who you really trust and that shows a deep concern for your child. Our pediatrician at that time gave us his house number and cell number and on one occasion we had a concern over the weekend and called his house; he was out on a lake with his brother, but his wife called him and he called us back from the boat! We were never calling all the time, but we knew that we could call him day or night and he was always pleasant and concerned for us.
Do you worry less now that Ana and I are adults than when we were children?
C- No and yes.
No, because as you are experiencing now, we never stop worrying about our children; also because we know we do not have the control like when you were a child and that makes us nervous, yet, we pray to God and keep checking on you girls to see how things are. Also, because we know we all can fall back on our old habits. For example, Ana is in college- in the middle of a system that does not support a healthy style: like the meal plan that she “has to” buy because she lives on campus. The eating places that have all you can eat. It does require a lot of will power to stay on track.
And yes, because we know you girls are well educated about diabetes and maintain a constant check on the things you need to do.
Who was more difficult to raise as a diabetic and why?
C- You Sysy, because you were at an age where you pretty much did all the checking and shots, you went out with friends, had more extracurricular activities, and had known how it felt living WITHOUT diabetes. We could not be with you all the time, and also because you have a more stubborn character that says “This is what I want to do”. We also found out later all the sneaky things you did (daughter, you can leave this out, if you want..haha).
Personally, looking back I feel you both worked well as a team. For example, Mom, you are very action oriented and don’t worry nearly as much as many people which enabled you to take care of us without letting stress stop you. When it came to carrying diabetes supplies and remembering insulin doses and making doctors appointments you were the one in charge. Dad, you do more deep thinking and take your time observing details and always watched us carefully. This meant you brought up concerns to mom and she moved on them. You were also the one to always acknowledge the emotional aspect of diabetes with a lot of empathy.
Do you both agree?
C- Yes, you know us well!
Do you have any thoughts on this?
M- Yes, we are a working team, me with the do it all attitude and Dad with the reflective thinking and searching looking for the underlying causes behind one of you not feeling well or not acting as you normally do.
Do you think it might help parents to use each other’s strengths for the wellbeing of their diabetic child in this way? After all, no parent is perfect, but a pair can be pretty darn great!
C- Yes! As a marriage we work together in every aspect of our relationship and that includes our children, no matter how old they are.
Anything else either of you have to add?
D- If your child has diabetes, you have diabetes as well.
C- We believe that we have a duty to let others know what we have learned all these years (and we keep learning)
And so thank you so much for reaching into some sad memories to give us your thoughts. Looking back now as a parent myself, I appreciate more than ever the way you took care of Ana and I. Truth is, under your care we never had any scary incidents or hospital visits and I believe it was mostly due to your diligence and involvement with our diabetes management.
Thank you :)