Connecting with Others

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Finding a support system makes all the difference.

By Karen Hargrave-Nykaza

My family has just returned from the Friends for Life Conference for families with children with diabetes. This is a National Conference sponsored by the Children with Diabetes organization. There were 3,000 people in attendance, including so many children and families who live with diabetes every day. In many ways, it was wonderful to be a part of such a large and supportive group, all of us being there to learn more about caring for our children physically and emotionally. There was another part of me that couldn’t help but be saddened by the fact that there were 3,000 people there, all of whom are children, parents, or siblings who live with diabetes every day. It put things in perspective for me. It is one thing to read statistics about how many children have diabetes. It is quite different to see so many of them gathered together and see them in a much more personal way. It made me want to get as much out of the conference as possible, and made me want to work even harder to find a cure for this terrible disease that impacts the lives of so many children and their families.

This conference had a lot to offer including emotional support, education on new advances in the treatment of diabetes, connecting with other parents, and ways to keep your child safe while still allowing for their growing independence. What I think I gained most from the conference was a renewed confidence in the job my husband and I have done so far in dealing with our son’s diabetes. There are so many families who have had far more traumatic experiences than ours. We heard terrible stories of when their children were diagnosed and how seriously their health and even survival were threatened. Many of their children have been in very serious life-threatening situations because of severe low blood sugars, most of which were unpredictable. Many of the parents (especially the single parents) have little or no support network. There were also many families who are just completely overwhelmed (and understandably so) by the incredible burden of this complex disease. The added challenges presented by a growing child or teenager as they either rebel against the many tasks involved in caring for the disease or even lie about having completed those tasks only make it harder.

Part of what I realized after the conference was that I need to give myself a pat on the back a lot more often. I feel like once we got a handle on the basics of this disease, which certainly took a long time, we have gone on to live quite a “normal” life. When you aren’t around other families dealing with the disease and have no other family living with diabetes to compare yourself to, it is easy to live in your own little world, failing to acknowledge to yourself just how hard it is to manage this disease, and recognizing what an amazing job you are doing. It isn’t about telling yourself that you are doing something better than someone else. For me it is about being able to acknowledge that it is a very difficult disease to live with and manage, and that we are each doing the best that we can. That isn’t to say that our son Joel has the best A1C around; he does not. But it is to say that we are giving him the best life with diabetes that we know how. That includes all aspects of the disease; physical, emotional, and everything in between. We are doing pretty well, but we are always open to learning more and always trying to do better. We also do our best to make sure his life is fun, and that diabetes doesn’t define who he is, or who we are.

Read more of Karen Hargrave's columns here.

Disclaimer
dLife's Daily Living columnists are not all medical experts, but everyday people living with diabetes and sharing their personal experiences. While their method of diabetes management may work for them, everyone is different. Please consult with your diabetes care team to find out what will work best for you.