Advice for Life, Five Years at a Time
Five years ago today we sat in a hospital room in Mexico City as a doctor told us the news that would alter our lives as we knew them. Your diagnosis would make us experts in something we knew nothing about until that day. We listened as others told us not to worry, that a cure for this disease was so close. Surely, within five years your life would be back to “normal,” and ours, too.
We decided that day we would do everything in our power to make sure you wouldn’t have to wait five long years to feel “normal.” You were only two. You didn’t deserve to have to wait for a thing. We wanted your life to be everything we’d dreamed it would be when you were born. There was no way our little girl would ever feel different or excluded because of a disease she did not choose.
But now you’re older. This past year has been one of the hardest. You’ve started school and the reality of childhood curiosity is kicking in amongst your peers. It was heartbreaking watching your eyes well up after gymnastics while you shared with us your frustration about the questions from others about your insulin pump. Feeling the grip of your hand as we walked from the school pick up line while you whispered to me that someone told you were weird was one of the hardest things I’ve had to hear as a mom.
Knowing that these won’t be the last times you encounter situations like this, is a harsh reality that both daddy and I have to face, no matter how much we’d hoped we could keep you from feeling different. But, sweet girl, I want to give you some advice as you move on in the next five years of your life with type 1 diabetes (T1D). We may not be able to shelter you from the storm, but we can certainly teach you how to dance in the rain.
When they laugh …
Remember that you are stronger and braver than most kids will ever have to be in their lives. Never let their laughter make you turn away or hang your head. Stand tall and look them in the eye. Never be ashamed to wear the devices that keep you alive. Let the beating of your heart be so much louder than the laughter in their voices.
When they stare …
Remember that people are curious. We stare at things to bring them into focus. If someone is staring at you it means that they are trying to “bring you into focus,” to see more clearly what these devices are that you’re using and how they’re helping you. Don’t be embarrassed by the curiosity of others.
When they point …
People point to direct others to what they might be looking at or focusing on themselves. This means that if someone is pointing at you, they have chosen to share your being with others. What a fantastic opportunity! So many people and things go unnoticed. What a wonderful blessing that your existence (and challenges) can be brought to the attention of others who might never even notice. Don’t hide or be ashamed. Be proud that you are helping others learn something new.
When they ask questions …
Listen, then respond. If the questions make you uncomfortable, remember that people can’t learn unless they have answers. Choose to be proactive (if you are comfortable) and tell them how your disease affects your daily life. Don’t view their questions as accusations. Use your answers as tools to dispel myths.
When they whisper …
Listen, but not too much. People often whisper because they don’t want others to hear something that they know might be hurtful or wrong. They also whisper out of fear that what they’re saying might not be true. Let them whisper as much as they’d like, and turn your attention to those who are willing to shout truths from the mountain top.
When they just don’t understand …
There will be plenty of times that you will find yourself trying to convince others that you did not do anything to cause this disease and that you won’t be cured by eating cinnamon or okra. Remember that the definition of “understand” is “to know how something works or happens.” Try your best to help others understand the pieces of your disease that can be explained in easy terms. Don’t give up no matter how frustrated you may get. Believe that your efforts are not wasted.
When they judge you …
A judgment is an opinion formed after an evaluation of some sort. Forming opinions is human nature. Remember that you are strong, you are beautiful and you are braver than most people in this world. If someone’s judgment of you makes you question any of these things about yourself, think of this quote and follow it: “Be as you wish to seem.” Our hope is that the person you wish to seem is exactly who you are because more people than you will ever love you know.
When they say you can’t do something …
Prove them wrong. Nothing can stand in your way other than you. Believe you are so much more than the highs and lows, and have the confidence to challenge yourself every day. Your will and desire to live life above the obstacles that have been placed in front of you will be the only thing you need to show others you are not defined by this disease.
Cheers to Changing the World, Isa.
Mama
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