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To My Mother, Who Traveled Across the World to Help Me Battle My Illness

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Dearest Mom,

I know you despise it — leaving on a whim, leaving where you’re contented to go elsewhere. One of your favorite works of literature is “The Agony and the Ecstasy,” the story of Michelangelo’s life. I can’t count the number of times I’ve pleaded with you to travel to Rome to see St. Peter’s Basilica, or to Paris, to walk the streets where Hemingway once roamed. Your answer never fails to change: “No, I have no desire to see anywhere but here.” (“Here” is Sri Lanka, the beautiful, lush island my parents and sister returned to after almost 30 trying years in the States.)

Your anxiety tends to get the best of you, especially when you’re traveling alone. I understand.

“Which gate do I go to?”

“Who’s going to help me get there?”

“I only have six hours to get from one gate to the other!”

I know the 10,000 mile, 24-hour journey is not easy. So when I threw in the towel last December, after two years of draining, inexplicable fatigue, reaching the point where I could barely walk the dog around the block, I knew what I was asking of you when I asked you to come. I made that phone call, every bone in my body resisting. I had no choice but to finally ask for help.

That week, the plane ticket was booked (thank you, Dad). I know you had been wanting to come for a long time. The ask is difficult, because I know what you’re leaving behind  my older sister, who has a disability and lives with paranoid schizophrenia, and my father, who unfortunately has faced some health setbacks the past few years. I always thought I could handle my illness and its many complications with just my husband and I, but at that time every doctor’s visit felt like an axe chipping away at the core of my inner strength.

Ashanthi and her mother in the hospital.
Ashanthi and her mother at the NIH.

What I want to say is that you saved me, in every sense. You went from a sunny, humid 80 degrees to single-digit weather that bites and cuts through, regardless of how many winters you’ve experienced. And in it, you did the groceries and walked the dog. You kept me company. The almost two years I spent being unable to work or be around people on a daily basis was excruciating. You were someone to talk to while my husband and friends were working during the day and being busy. You were someone to sit with in the doctor’s waiting room, and a hand to hold after my appointments. And after our long, 10-day stay at the National Institutes of Health (NIH), you watched me break down in tears after the doctor confirmed my latest diagnosis, idiopathic secondary adrenal insufficiency. You didn’t shed a tear. You let me cry. You let me say my piece to him, when I was frustrated at the world for having a disease where the natural history is still unknown.

When the doctor left, you said, “I am so proud of you.

To say you are our family’s “rock” would be doing you an injustice. A rock is stiff and cold, jagged and without empathy. You are our family’s banyan tree in which we can find cool shade when life exhausts us. Your roots run deep into the Earth, so even the fiercest gusts of wind won’t shake you. The only time your branches came close to bending was when life took one of your own, your youngest flesh and blood, our littlest sister. But your roots dug a little deeper, and you continued on, for us.

For every obstacle in life, I remember your many more, and instead of an axe chipping away at you, it has somehow made you stronger. For every time I am thrust into the darkness of the unknown with my illness, I remember your early days of motherhood, before the Internet even existed. The days when you sat alone in a tiny apartment, in a new country, without family or friends to comfort you as you watched all three of your children fail to medically thrive. Yet, your hope and love carried us through. You waited years to finally return home, only to be uprooted once again to get on a plane, scurry through the hectic airport crowds, and meet me in the middle of a Midwest winter.

For every mile you’ve traveled to see me, thank you, a million times more.

To the mothers who refuse to give up for the sake of their children with disabilities and illness, thank you. To their sons and daughters, don’t be afraid to ask for help. It might be the best thing you’ll ever do for yourself.

The Mighty is asking the following: What’s one thing you want to make sure the special needs mom in your life knows? *If you are the special needs mom, challenge a loved one to respond to this! If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 8, 2016
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