To My 'Rare' Daughter on Her Birthday


My Dear Monica,

Today you turn 2 years old. For most children, it isn’t very hard to get to this birthday, nor has the journey to this milestone been intensely stressful for them (although their parents may not have slept much). But you are different.

We knew you would be different before you were born, when the doctors told us you probably wouldn’t be able to walk well on your own and that you would have cognitive disabilities. Obviously, they didn’t realize who they were talking about, because you, my dear, are a fierce little fighter, and while it took you longer to learn than most, you now walk quite well.

When we learned you have rhombencephalosynapsis (or “That R-word”– as I called it before I could finally pronounce it), we were sad. We were sad because we thought life would be so much harder for you, because we were worried you wouldn’t have very many birthdays, because we loved you to the moon and back already and didn’t want you to suffer.

But while you are different, and you have an extremely rare disease, you have the same quiet strength and endurance other kids with your disease also have. You are brave, even though you are small.

During your first year of life, eating was very hard. Sucking and swallowing are difficult tasks, and your brain couldn’t figure out how to do them in an organized, systematic way. But you made it. You ate enough–sometimes just enough–to live. I am proud of you. For most babies, eating is a great pleasure. For you, it was pain and hard work.

Since you were 9 months old, you have been in therapy. At first, you hated therapy and cried through every session. But then you made friends with your therapists, and even though they made you do uncomfortable things (like bending your knees), you stuck with it. Learning to walk and learning to eat were like battling uphill. You have climbed mountains to be able to function as well as you do.

Sometimes, in the midst of all your struggles, I wondered about our role in your life. There is only so much we, your parents, can do. And there is so much that you–and only you–must fight through.

Early on in your life, I began to carry you up to the top of Mount Lycabettus several times a week. There is a church at the top of the mountain, dedicated to Saint George and the Prophet Elijah. We often go inside the church to pray, and during your first year of life I prayed over and over again that you would be able to eat and sleep enough (because sleeping enough is a battle for you too). On one of these trips up the mountain, it occurred to me you would never be able to go up the mountain if I didn’t carry you. And then I realized the best way to think about being your mama.

In J. R. R. Tolkien’s book, “The Return of the King,” there’s a beautiful scene where Frodo can’t go any further because he’s too exhausted from carrying the ring of power. Sam bends down and picks Frodo up, saying, “I can’t carry it for you, but I can carry you.”

Monica, we can’t carry your neurological condition for you, but we can carry you.

We are your Sam.

We carry you to therapy.

We encourage you and we push you.

We hold you when it’s just too hard.

Don’t you ever think you are a burden; it is one of our greatest joys to be your Sam.

During your short life so far, you have touched so many people. Your Aunt Cara-Anne made a weighted blanket for you, your Great Uncle John and your great-grandfather made a special machine to help you sleep, and your grandfather bought you cooling clothes to help with your temperature regulation issues. More people love you and pray for you than you will ever know. These people are also your Sam. You make the world a softer, more generous place just by being here.

This year, you began to have episodes so painful they kept you awake for hours at a time. Just a few weeks ago, a doctor finally arrived at a diagnosis: erythromelalgia, otherwise known as “Man on Fire syndrome.” You are the only person in the world who has both this rare disease and the even rarer disease of rhombencephalosynapsis. You were very brave during your recent hospitalization to treat erythromelalgia. I’ve never seen a child so quick to show love to nurses who stick her with needles.

In St. George’s chapel at the top of the mountain, there is an icon of St. George slaying a dragon. When I see that icon, I think that St. George must have a special place for you in his prayers, because you, my daughter, are also fighting a dragon–a fierce, fiery dragon that rages in your own body.

And so, Monica, on this occasion of your birthday, I wish for you three things: that you will climb mountains with the endurance you have already shown you possess, that you will fight your dragon with the courage I know lies within you, and that you will let us and others be your Sam when you need to be carried.

Happy Birthday.

With love,
Mama

This story originally appeared on American Teacher in Athens


Find this story helpful? Share it with someone you care about.


Related to Erythromelalgia

A photo of th writer, her face showing red splotches.

Why It's Hard to Stay Positive During an Erythromelalgia Flare

Sometimes staying positive while living with chronic illness is one of the hardest things in the world…but I try. Every time I post about any of my medical issues on social media, I second guess myself, delete, don’t end up posting, decide it’s not professional, or worry that people will think I can’t do my [...]
silhouette of a happy young woman is sitting outside at sunset lovingly kissing her large German Shepherd mix breed dog.

How Having a Dog Has Helped Me Manage the Fire of Erythromelalgia

For months I had been searching for a dog. I already knew that I was going to name her “Mimis.” In Spanish, this is a term that translates to “nap” or “naptime.” I have always loved and cherished taking naps, and I thought it was the cutest little name. But, in 2016 I was diagnosed [...]
Group of five peoples silhouettes in sunset light

The Young Warriors Who Live With Erythromelalgia

By Melissa Bogner EM advocate and blogger Imagine being told by a doctor that your child has a horrific syndrome – one that you have never heard of and one that will leave your child feeling  like they have been set on fire and  then left with second-degree burns. Where do you, the parent, begin? Can [...]
red feet

I Will Not Let Erythromelalgia Control My Life

By Kathy Duke Ritchie “While erythromelalgia is debilitating, I have learned to live with it!” I advocate for erythromelalgia A member of The EM Warriors Network Being born with mixed connective tissue disease (MCTD) and lupus (SLE), I have lived with chronic pain all my life. Nothing, however, could have prepared me for the agony [...]