The joy and burden of being my daughter’s primary caregiver

My daughter Avery is 10 and has a severe form of epilepsy called Dravet syndrome. I am not just her mom; I am her caregiver. To put this role into perspective, I am her everything.

Being the primary caregiver to a child with additional needs is both a great joy and a heavy burden. It is the best feeling in the whole world, but also a weighty reality.

On one hand, I get to be her everything. When she sees me at the end of a school day, she comes running with her arms wide, shouting “Mommy!” like we’ve been separated for days. Unless I’m dropping her off at Grandma’s house, she never wants me to leave, and when I’m away for a couple hours, she misses me.

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This is truly one of the greatest joys of my life: to be so incredibly and undoubtedly loved by someone that you become their person. When she’s tired or unwell and needs snuggles, she wants me. I get to be her comfort and safe space. If she’s nervous or unsure of a situation, she wants to be beside me, holding my hand or tucked into my side.

She tells me that I am her best friend, that I am the best mom in the whole world. She tells me that she wants to be with me forever. Her words are sincere, and I am grateful to experience such a pure kind of love.

Being her everything is a beautiful gift, but the weight of being someone’s everything is incredibly difficult to bear. It’s hard to fully explain what this role encompasses, but it includes the following.

What it means to be Avery’s everything

I am her voice. I interpret for her almost everywhere we go because, though she is very verbal, she is at times extremely difficult to understand. If she can’t get the words out, I communicate for her based on her nonverbal cues.

I am her advocate, the one who attends individualized education program meetings, talks to teachers, and plans seizure first-aid training. I am a buffer between her and her peers. When they aren’t sure how to interact with each other, I break the ice, offer suggestions, or help her introduce herself. I make sure she has a place to belong. I go out of my way to create and provide opportunities for her.

I am the one who calls ahead to make sure those dance lessons will be appropriate for her. I am the one who reaches out to make sure there are no seizure triggers present at her class concert. I am the one who educates those who make ignorant statements about her.

I am her nurse, the one who carries her rescue medications at all times. With few exceptions, I am the one who administers her 10 doses every single day like clockwork. Oxygen tanks, Ambu bags, and a pulse oximeter sit in my bathroom closet, as if these are normal things to have.

I am her nutritionist. I work hard to accommodate her ever-evolving food jags, during which she often eats the same one or two foods for weeks on end. I am the one who opens packages, pours milk, and cuts up things that are too difficult for her.

I am her sleep specialist, and what I’ve found is that she only sleeps well right beside me.

I am her scheduler, constantly trying to work appointments into our busy calendar. She has to see the neurologist, have that echocardiogram, and attend weekly physical therapy, just for starters.

I am her protector, constantly on watch.

I am the one who pulls her body out of bed each morning against her wishes. I make sure she’s bathed appropriately, help her brush her teeth, and button her shirt when her fingers just can’t do it. I’m the one who first notices when she isn’t feeling well or hasn’t had anything to drink today. I help her find friends to play with.

When she has an accident, I’m the one who cleans it up.

I am the one who makes decisions, responds to emergencies, and hops into the back of the ambulance without a second thought. I am the one who researches medication, fights for treatment options, and sits by the hospital bed for hours while we wait for test results.

Her reality is largely up to me. How beautiful and challenging this experience can be.

Some days I say the words with positivity and sweetness: I get to be her everything. What an immeasurable blessing.

Some days I say it with exhaustion and a weariness in my bones that only fellow caregivers can understand: I have to be her everything. Because if I don’t do all the things she needs, who will?

Either way, it is true: I am my daughter’s primary caregiver, and because of that, I am her everything.

Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.