To the 'Super Parents' Who Are the Constants in Their Chronically Ill Kid's Life

To my mom, who lovingly parents two children with chronic illness (and still finds room in her heart to be a stellar step-parent). My brother has type I diabetes, and I live with hypermobile Ehlers-Danlos syndrome which comes with a constellation of other difficulties. This is addressed to my own mother, but please, if you are a “super parent” of one or more children with chronic illness, know that this applies to you, too.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Dear Mom,

This Mother’s Day, I want you to know that everything you do for us is appreciated. Here are just a few of the things I am grateful for:

Thank you first for always being the constant in our lives. You’ve been my safe space ever since I was little, the one person who I could tell everything and anything, no matter what. You’ve always treated our thoughts and feelings as important. You gave me your undivided attention at 3 when I wanted to know more about the world, and at 23 when I wanted to know why my world was different than others’. This is the reason we tell you things, because we know that whatever it is we have to say, it’s important to you.

Thank you for taking this journey with us. Chronic illness doesn’t just impact my brother and I — you live with it every day, too. I see you. I know you feel like everything is out of your control. I know you carry feelings of guilt, and wonder if this is somehow your fault. It’s not. Nothing you did made my brother or I sick. In fact, so many things you have done for us over the years have made us well and encouraged us to live better lives in spite of our obstacles. Here are just a few of those things: You were my brothers’ pancreas when he was young! A whole organ, and a person at the same time! Then, you miraculously taught him to be his own pancreas. He handles it with such grace because you taught him to (and because he is awesome). You encouraged me to do whatever I could, despite my chronic pain. You talked me through the times when I just wanted to give up. You told me I have so much to give this world, so I found new ways to give. Thank you for learning everything you could about our respective illnesses and being our champion, always.

Thank you for always being there, especially when it would be easier not to. Thank you for taking us to countless doctor’s appointments and procedures. For standing by our sides during hospital stays. For bringing us our favorite things, and making us laugh in difficult times. For making phone calls to the nurse and waiting for instructions while loving on us. It would be so easy for you to be uninvolved, to check out. We are both adults now, and you could choose to let us handle this on our own, but instead you choose to stand right beside us.

When we are apart, you answer the phone no matter what time of day or night it is. You talk us through whatever is going on, whether it’s a medical crisis or an emotional one (or both). Thank you for standing by us from afar and supporting our independence, when I know all you want is to get in the car and drive like hell until you’re with us. Thank you for always offering to come be with us, and handling it gracefully if we decide it’s better to tackle this one on our own. No matter what happens in our lives, we will know that we are never alone, because you are always there, whether in spirit, on the phone, or in person.

Thank you for always believing us. When you are in pain and it’s not visible to outsiders, sometimes people dismiss you. I think it’s because it’s more comfortable for them to believe we are not in pain. You never dismiss us. When my brother has a change in his blood sugar, you always allow him to do whatever it is he needs to recover. When my pain levels spike, you understand when I need to lay down or take a nap. I see the hurt in your eyes and I know it hurts you to know we are hurting, but you always choose to sit with that, when it would be so easy to dismiss us. To tell us that we are fine. You know we aren’t, and you live with that. I know it hurts that you can’t always make it better, but I promise you’re making it better just by allowing us to share our reality with you.

Lastly, thank you for showing us by example that we can do hard things, and even learn from them. I know it’s not easy for you to do some of the things you do for us. It’s not easy when your kid is in pain, or has needs that aren’t typical. You are so compassionate and understanding. I know sometimes your empathy makes you feel things it would be easier not to feel, but you go on feeling them anyway and you conquer the world around you.

Instead of hiding from these things, you have not only taken them on by being our champion, but you have also decided to go to school to be a champion for others with unique needs, to help them to live the best life possible. I am so proud of you for studying occupational therapy, for getting the best grades in your class time and time again, even though it’s been hard and science is out of your comfort zone. You are the best mom we ever could have asked for, and you are also going to be the best occupational therapy assistant your patients could possibly ask for, I know it.

It’s largely because of you that I am finding the strength to accept myself as I am and do whatever it is I am capable of to help others. I hope you know that.

I love you always,

Sara

Follow this journey on Zebra Writes.