Dear Mom: I Wish I Could Shield You From My Pain


Dear Mom,

You’re my best friend. There has never been a time in my life when you haven’t been there for me when I needed you. You are my role model, my rock and my best friend. You are incredibly strong and sassy. You make me laugh so hard I cry, and you remind me I can do anything if I put my mind to it. You cry too easily, whether it’s from a sad movie or from something more serious. Your heart is so big, sometimes I worry it will break. You’ve loved me for every moment you’ve known me, and you’ve always done everything in your power to protect me.

So I can only imagine what it was like for you when I was diagnosed. “Complex regional pain syndrome,” the doctors said. They threw out phrases like “extremely rare,” “long-term chronic pain” and “progressive.” But the phrase that probably hurt most was “no cure.”

Being only 20 years old, I don’t know the first thing about being a parent. But I’ve seen the love and pride in your eyes when you look at me, and I feel like it gives me a glimpse into what it’s like to love a child. I know you love me more than anything, that you want to protect me and that you would do anything for me. A mother’s love is soft and sweet yet strong and fierce all at once. There’s nothing in the world that could compare to the love a mother has for her child.

When I was diagnosed at the age of 13, you remained positive and encouraging. You told me everything was OK, and that we were going to beat this. As hopeful and confident as you seemed, I know you spent countless nights on the internet reading about the horrible things that were happening to my young and once healthy body. I know you saw things no one wants to see, like the number of suicides that result from my condition, the poor prognosis and the painful horror stories. I know you went through every piece of literature you could find searching for answers. When you thought I was asleep, I heard you break down on the phone with your best friend, telling her how hard it was. I saw you hold the phone to your ear with one hand and furiously scribble down appointment dates and procedures. I’ve seen you cry countless tears over my illness, and Mommy, I am so sorry.

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The only thing worse than the pain I am in is to know it’s hurting you more. No parent should ever have to watch their child suffer. I wish there was something I could say or do to make it better, but we both know there isn’t. This is our life, and you embrace it with such fierce faith, hope and joy every day that you encourage me to do the same. You are so strong for me, and you try not to let it show that your heart breaks almost daily. You pick me up, physically and emotionally, and are there any time of day when I unexpectedly end up in the hospital. There have been multiple nights you have made the two-hour drive to stay with me in the hospital, only to drive back at 4:00 a.m. when I was discharged and go to work at 7:00 a.m. You make me feel so loved every day, and I just want to thank you for that. There are a lot of reasons why I continue to fight, but you are one of the most important ones.

I’ve seen you hastily wipe away tears when you think I’m asleep, and it breaks my heart. I know that I’m your baby girl, but I still want to protect you. Believe me when I say it’s for this reason that sometimes I ask for dad instead of you. We know how he is – kind but calm and tough. When he’s with me in the hospital or at my appointments, I feel safe. But when I’m with you, I just want to shield you from everything that is happening to me. This may sound absurd because I am your child. But I know how badly you want to be there with me every step of the way, and sometimes that makes it harder for me. When I see you upset, especially when I see you cry, my heart quite literally breaks in a way I didn’t even know was possible until I got sick. A broken heart along with my other symptoms can just be too overwhelming. Dad will sleep through the waits or quietly observe, and that is an alternative I will gladly accept to seeing you in pain because of me. I know it hurts him too, but we have a silent agreement to protect me by protecting you.

Despite everything we have faced together, never once have you said or done anything to make me feel like a burden. You are an unwavering pillar of love and support that holds me up each day. You make this easier for me, but also harder. Easier because of your support, but harder because I know how hard it is for you to see your baby in pain. I love you so much and I will never be able to say or show just how grateful I am to have you as a mother. You are everything to me, and one day I hope to be just like you.

Happy Mother’s Day. Thank you Mom, and thank you to all of the mothers of children with chronic illness. Mothers like you are the reason that patients like us can carry on. Your selflessness, love, and understanding make battling illness that much more bearable. I can only imagine how difficult it must be for you to watch us be in pain. You have made so many sacrifices for us, and although it might not always seem like it, I am so thankful for you. I wouldn’t be able to do it without you.

No matter what tomorrow brings, don’t worry Mama – I’m strong. I’m strong just like you taught me to be, and I’m learning to go through life with grace as I have watched you do for 20 years. No matter how much pain I’m in or no matter how bad it gets, I know I’ll have you. And somehow, that’s enough.

I love you forever and always,

Your baby

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