What does home mean to my son with EB?

I spent the last two hours at work the other day reading song lyrics, poetry, and quotes. Along with my communications team, I was attempting to brainstorm a name and tagline for the new adoption program we’re launching at our child welfare agency. I’ve also been using Google to search for synonyms, homonyms, and words that rhyme with “home” and “family.”

On the way home from work, I looked at every street sign I passed and listened to songs on the radio to see if anything inspired our new program name or identity. (Weirdly enough, every day I pass an exit for a road called Peace Haven, no lie.)

I skidded slightly off the rails as my Monday brain, after a long and not-at-all restful weekend, turned to word-scramble mush. My latest idea texts to my co-worker have triumphantly included “Cribs,” “Nice Fit,” “The Good Place,” and “Home-o-spacian.” (That last one was a real low point.)

“Maybe we should just sleep on it,” she suggested.

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I’m sure I’ll get my inspiration when I wake up at 3 a.m. with anxiety — the time I do my best writing. In the meantime, though, I’ve been thinking a lot about what it means to be home and to find home, and how to define the beauty of home.

Two favorite quotes I’ve come across in my contemplation:

This stanza from Henry Van Dyke’s poem “A Home Song“:

“But every house where Love abides,
And Friendship is a guest,
Is surely home, and home-sweet-home:
For there the heart can rest.”

And this quote from Pierce Brown’s novel “Golden Son“: “Home isn’t where you’re from, it’s where you find light when all grows dark.”

I can’t put into words, exactly, what this “name the program” plight and subsequent research have to do with my son Jonah’s battle with epidermolysis bullosa (EB). But I know that home, for me, is him. And home, for Jonah, is me.

How do you put into words the connection between a special needs child who, for the majority of his life, has depended on his mother for almost every single thing, and a mother whose identity is so wrapped up in giving her love and care to that child that she doesn’t know where she ends and he begins?

Jonah starts school next week as a high school junior and is learning to live independently. Each day that passes is one day closer to him leaving. My wish for him is that no matter where he goes or what struggles he faces, our family is always his definition of home. I love our version, even when it’s difficult, complicated, lacks spontaneity, and comes with an antagonistic little brother.

Home means us for him and him for us.

I hope it means the safest place of all, where Jonah can be fully himself in his joys, sorrows, pain, silliness, and triumphs.

I hope it means abiding love without condition and a place where his friends are always welcome, no matter what. I hope it is the place where Jonah finds light, when everything else has gone dark.

And most of all, in his especially difficult world with EB, I hope home is the place where his heart can always come to rest.

Note: Epidermolysis Bullosa 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 Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.