Monday, September 12, 2016

The Dreaded Milestone

I have been dreading this post for a long time.

This post is the post where I get to tell you that we have hit a new milestone, a milestone that I prayed would never come.

January 11, 2013 at the age of 3 years, 7 months and 22 days old my son was diagnosed with Type 1 Diabetes.

September 12, 2016 my son has been living with Type 1 Diabetes for 3 years, 7 months and 23 days.

My son has now officially been living, battling and thriving with Type 1 Diabetes LONGER than he got to live without it.

Joseph can't remember a life without T1D and that breaks my heart. The vast majority of the people in our lives now, don't even know a Joseph without T1D and the family/parents that we were before January 11, 2013. It is now a part of all of our identities.

To be quite honest, the memories of what life was like for our family before T1D are fading and almost feel as if they never existed at all, even to me. I can no longer tell you what it felt like to go to bed at night and not have a fear of losing my child. I can no longer tell you what it is like to have a sound peaceful sleep. I can no longer tell you what it felt like to not worry about blood sugar numbers. I can no longer tell you what it felt like to feed my child food without having to think about what he was eating, how much he was eating and how much insulin was needed to cover that food. I can no longer tell you what it felt like to live worry and stress free.

People always tell us that we make life with T1D look easy. We allow Joseph to eat, play sports, go to school, travel and do every thing possible to let him experience life as if he never had diabetes at all, and continue to maintain amazing A1C's while doing it. What people don't know or understand is the amount work that goes into allowing that life to take place. There are plans, preparations, extreme stress, worry, heartbreak, constant phone calls and text messages, alarms going off, monitoring, things going wrong, site changes, pumps failing, CGMs failing, high blood sugars, low blood sugars, analyzing data, doctors appointments, pharmacy pick ups, and constantly trying to stay one step ahead of a disease that doesn't play by the rules. 24 hours a day. 7 days a week.

This life that we have created for him allows T1D to just be a background noise in his life. It is NOT who he is, but it is a piece of what makes him who he is and who he will be in life but it has not been easy to achieve.

Every single day for the past 3 years, 7 months and 23 days I have prayed, cried, pleaded, advocated, donated, and raised money for a CURE. All I want is to see is my son able to live free from Type 1 Diabetes once again. I want to have a new date to look at and celebrate, because if that cure doesn't come, then one day all of the work that we put into allowing Joseph to live life as normal as possible will become his responsibility........and that is a day that I dread even more than today.

-until next time