Dear Brother,

59075-Misunderstanding

Dear Brother,

It takes a big person to say they are sorry-I thank you for saying it & accept your apology. Everything you did/said—are the reasons we do what we do—work as hard as we can in support of the American Diabetes Association and their mission: “To prevent and cure diabetes and improve the lives of all people affected by diabetes.” If our efforts have given you a change of heart—you are now an example of advocacy at work.

I often say the public misunderstanding of this disease is a tribute to the 29 million Americans living with some type of diabetes. (There are many kinds—one tree named ‘diabetes’ with lots of thorny branches-the ‘types.’) These SUPERHEROS face their hurdles—ridicule, exclusion, blame, mockery, and unrelenting medical needs—with determination, resilience, tenacity and a smile on their face—never letting you see them sweat it—bravery in our midst.

Many of the 29 million American’s living with diabetes are children, and they are where my heart is. As a Safe at School Advocate for children with diabetes in NY—this year alone I have navigated the difficult terrain of school bureaucracy for children across our state who were told “do not come to school because we can’t take care of you,” “you can’t go on field trips,” “you can’t join after school clubs,” “you can’t ride the school bus,” “you can’t do THAT (perform their medical care) in the classroom!”  and the scariest “we are not going to follow your medical plan, it’s too complicated.” Children with diabetes must face the reality that this disease could kill them and insulin—is not a cure—it is a band aid, and dosed incorrectly—insulin could kill them too. They must face this reality while facing (and fighting) the constant message of CAN’T and in some cases this year—public mockery of their disease by the very people parents must entrust these children to everyday-school staff.

There currently is no cure—but research is bringing about many things that help. In the works—the artificial pancreas, smart insulin, the insulin patch, and more. All amazing- but only tools to assist in making living with diabetes easier—not a cure, just more costly tools, that many of the 29 million will never be able to afford should they come to fruition. I hold on to hope—that research will someday lead to a cure. God willing-it happens in my son’s lifetime.

You are one of many ‘misunderstandings’ I have faced in these last 6 years. One of many- my son has faced- his sister and father too—because we are all in this together. When one is diagnosed—all are diagnosed—because it absolutely changes everything in life as you know it and you must struggle to find balance in a ‘new normal.’  In the early days—a school district of our own that didn’t understand—a hurdle crossed—and now they are a school district that other districts should look to as an example of how to safely and successfully assist a student with diabetes on their school journey. Where once they told him “CAN’T” they now say “How CAN we?”

As a parent of a child diagnosed at age 6, I can tell you wholeheartedly; this disease is so much more than “a little poke to his finger.” I go in his room in the dead of night, every night, to check his levels-the first thing I check- is if he is still breathing. A disease that never sleeps, never gives up its quest to knock you down, take you out.

This disease chose the wrong Mom to mess with, for I will never give up either-in helping my son be all he can be- despite the mountains he must cross. Giving him the self confidence to face the ridicule, mockery, and unrelenting medical needs-bravely, respectfully, and valiantly. I will never give up—being a voice for children that need one- up against exclusion, misunderstanding, and bullying. I will never give up-supporting those 29 million Americans and their families-who deserve so much more than jokes at their expense, shaming because they have a disease they do not want and certainly did not cause, and stress-because they can’t afford the overwhelming cost of staying alive with this disease.

What I already knew, but has been pounded home these last 6 years, is EVERYONE has a struggle they are dealing with, be it a medical condition or a difficult life circumstance. We must look at each other in this world without judgment and instead look at each other with compassion. That smile on someone’s face may be hiding the scariest of predicaments. We need to be the light—shining brightly for each other—we are all in this together after all.

I loved you through it all, and always will.

Your Sister

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