The ranting of a mother and advocate for Type one diabetes. The founder of www.diabetesadvocacy.com welcomes you to journey through life with a son with Type 1
Wednesday, March 19, 2014
5 Things that I have learned about me over the past 14 years...
Diabetes has a very steep learning curve. Some of us have no medical knowledge and yet are forced to learn about giving needles and drawing blood. We must learn about nutrition and exercise instantly. We learn how to work with our children and help them to understand what is going on in their bodies.
In a moment, our world changes. As I have said before, it completely explodes your world and leaves you to work with a new landscape. It does not end your world, it just ends that naive world in which you may have existed before. It certainly did for me. As we navigate this new landscape, we learn a lot about our relationships and about our children. I thought that today I would look at things that I have learned about me over the years…
1. I became more empathetic thanks to diabetes. I like to think that I have always had empathy. I try to never judge a book by its cover and I tried to teach my children to do the same. We never know what is going on behind closed doors or what is going on inside another person’s body. Just because they look well does not mean that they are not struggling with something that we can’t see.
Kerri Sparlingbrilliantly illustrates this point in her bookBalancing Diabetes. If you haven’t read the book, you should do so. You will read about her response to a dinner conversation in which one person slams a family member with diabetes who “eats whatever they want, and they never test their blood sugars, and they never go to the doctor.” (page 161) Kerri stands up for this unknown person and asks how they know that this person really doesn’t do all of these things? She had tested and bolused at the table without anyone knowing so perhaps this person did too.
Diabetes has brought me that same sort of need to defend others. When you see my son, you think that he is perfectly healthy. You don’t see his broken pancreas unless you look at his insulin pump and then many would still assume it is his phone. I don’t want people to think that my son is broken. He isn’t but he does have to deal with things that other young men his age don’t. He looks after his diabetes privately. He does not show people how much work goes into looking and being as healthy as he is.
2. I have an even bigger mouth than people thought. I have always believed that if you don’t like something speak up. Things will not change if you mutter to yourself. If you want to see things happen differently then talk to people who can help you to make that change. Listen to their perspective and together work to create something that you can both live with.
After my son was diagnosed with Type 1 diabetes, I had a greater need to fix things. I think every parent who goes through this diagnosis of a child has this same feeling on some level. We often feel that we let our child down by allowing them to develop diabetes (boy do we have egos! Like we could have stopped this?) Our only way to “fix” things is to work to make the world better for them. We learn as much as we can, educate our schools to protect our children, and we work with our diabetes team to get the best care that works for our child.
Some people will write letters, lobby government officials, and become very active in educating the rest of the world about life with diabetes. That was me. I wrote letters. I started a website. I contacted government officials. I wanted life to be fair and just for all people living with diabetes. I wanted to protect my son and all of the other children out there living with this disease. I wanted to make things easier for them…and I still do. I stood up to administrators and Ministers of government. I learned that they were all just people who had families. They were not scary people with a lot of power but loving people who were often willing to listen to you.
I always knew that I had a mouth. As I said, I always believed in standing up for what I believed in. I didn’t know that if I stood up for something others would stand with me and that together, I could lead people to create serious changes in policies.
3. I didn’t know that I could touch people’s lives as much as they touched mine. When my son was first diagnosed, I was lost and felt terribly alone. After a number of months, I reached out to a group of parents online. They touched my life and helped me in more ways than I could imagine. The inspired me to do more. I was therefore honored when I was asked to be a part of their Canadian Children with Diabetes Friends for Lifeconferences.
I am a huge fan of these conferences and all that they give to families living with diabetes. Each time that I am at these events, I am humbled and amazed by what I see. Families become empowered and stronger before my eyes. They meet new people, hear new philosophies and get the chance to just talk to people who “get it”. When I get to speak about issues that I have dealt with and offer ways that have worked, it is wonderful to have people come up to me later and say, “Thank you! I can do this now.” It is something that I never imagined that I would be a part of 14 years ago.
4. I am not in this alone. Fourteen years ago, I knew no one with children with diabetes. I was given a phone number of a family diagnosed just before my son and we talked on the phone one day. It would take us years to meet up. In the meantime, I would find an online support group that helped me find my way. It empowered me and educated me. The members of that group became my family. They had been there, were living there, and had experienced that. They understood milestones like your child lancing their finger for the first time. They got the sick humor of watching blood gush across the lunch table.
Over the years, that support team grew. I found people in my community to meet up with. I became involved in national groups and met new parents who were also struggling. Eventually social media grew and I became involved there finding many more parents and people living with diabetes. Being able to share milestones and fears gives me the strength to move forward. I are far from alone today.
And the fifth thing that I learned? Diabetes makes us stronger than we ever knew! Life presents challenges. Life as a parent presents challenges. Life as a parent of a child with diabetes adds another level of challenge to the equation. Many people have it worse. Many people have it better. I have cried in the shower. I have sat alone in the dark and shed a number of tears. I have been grateful. I have been frustrated but most importantly, I am still here to tell the story…and so are my children.