Today Special Needs Sibling Saturdays is host to a very special blogger, someone near and dear to my heart. While my sensibilities may be close to the "old time" bloggers, the ones who write for the joy of storytelling and connection, I am actually fairly new at this game, having begin The Squashed Bologna just a year and a half ago.
Shortly after that I joined a collective blogging group, the NYC Moms Blog, a part of the larger Silicon Valley Moms Group (SVMG) which had sister sites across the country. In their LA site, I discovered Elizabeth Aquino who blogs at a moon, worn as if it had been a shell, and I fell in love with her words and her family.
Elizabeth is the mother to three children, Her eldest is Sophie, who has a severe seizure disorder and developmental disabilities. Sophie has two younger brothers, Henry and Oliver.
Elizabeth is a poet and lover of poetry (her blog's name comes from a poem by William Butler Yeats), and her love of words comes through in all her posts, be they about her family or food (or both).
So come, read her beautiful words, here:
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Hilarity and the Mermaid’s Brothers – by Elizabeth Aquino
During the days prior to my writing this post, I attempted to probe both my sons about their feelings being the siblings of a girl with severe epilepsy and developmental disabilities.
Henry is almost thirteen years old and Oliver is ten; Sophie is sixteen and has had a refractory seizure disorder since she was nearly three months old, so both brothers have lived their entire lives as the siblings of a child with special needs.
It's all they know of their sister and while they have expressed, over the years, their frustrations and sorrows that she can't talk or “be normal,” I can honestly say that their attitude toward her is one of nearly complete equanimity. It is what they know.
Henry, in particular, has been almost preternaturally compassionate and loving toward his sister since he was a tiny child, and their relationship to this day is very special and significantly different than that of Oliver or even my or my husband's with Sophie. Sophie often reaches out with her hand and toward Henry's face, gently stroking it and staring into his eyes.
She seems to know and understand his gentleness. He is able to help me with her, even during a seizure, and stay completely calm.
Oliver, on the other hand, has always seemed more conflicted about Sophie and her disability, and whether this is just a reflection of his superior (to Henry) ability to convey his feelings (however outrageous and negative) is unclear.
He has taken a very active, nearly heroic role in the fight against the word “retard” at his school and in our neighborhood, yet he is also the one who is quick to tell me that he's not sure he wants to take care of Sophie when I die.
And yes, he actually told me that, back when he was about five years old.
Henry, on the other hand, has decided that when he's older and very rich, he'll have a padded room for Sophie to live in and be safe from seizures, and maybe even a robot to decipher her humming noises.
With that said, and going back to my initial inquiries to better prepare myself for this post, I had this conversation with Oliver:
So, what's it like for you to be the brother of a girl with epilepsy and special needs?
Um, not again, Mom? Oliver answered, and he rolled his eyes.
Come on, I said, help me out. What are some of the feelings that you have about Sophie?
Oliver sighed and started walking round and round the dining room table where I sat, listening. I was also casually flipping through a magazine, not putting any pressure on him.
Upset, he said.
Boring
Scary
Frustrating
I hate it.
I looked up at him, and he smiled.
Just kidding, he said and he rolled his eyes, again.
O.K., I asked him, I hear you on the negative stuff. Now tell me something positive.
Without missing a beat, Oliver replied, It's kind of cool to get to park in handicapped parking spaces.
Before I could protest, though, he smiled and said, again, Just kidding.
I think this brief exchange speaks worlds for what the experience is like being the little brother of a young woman who has big, ugly seizures nearly every day and who can't talk and needs assistance with all life activities, including walking, eating and personal hygiene.
I know that Oliver feels every single emotion that he listed, and I know that when he watches his sister seize at the dinner table he is at once horrified and numb to the spectacle and chaos. Being upset, bored, scared and frustrated by the often chaotic goings-on in our home are normal emotions, to be expected, and I have made a very conscious effort to not only expect them but to accept them from my sons.
What has surprised me, though, is my boys' resilience to this chaos and the strength of their own personalities, their ability to find hilarity and absurdity in the otherwise traumatic events they witness as they live their lives.
Because they are living their lives, their own lives, and while their sister's life is entwined with theirs in significant ways, and her disabilities often demand great emotional and circumstantial sacrifices, they are on their own unique journeys.
While I worry occasionally that they have never had a normal day because of their sister's epilepsy, and I yearn to know what it might have been like to not have this heavy, heavy weight to carry for them and with them, I know that their sister's life is entwined in theirs in ways that set them apart from their friends and my friends' children, make their journeys perhaps more difficult but far richer and wider.
We cope as a family, my boys cope as siblings, with great senses of humor, a natural ability to laugh – at ourselves, at one another, at the situation.
Jesus Christ, Oliver yelled one morning when he'd bumped into his brother, running out the door to his carpool. He had just helped me to move Sophie from the bathroom to her bedroom, her body stiff and jerking, toothpaste dripping from her mouth and his as we had been brushing teeth when the seizure began.
While my first impulse was to admonish him for the language, I had to laugh. You have to laugh.
I think we cope, as a family, because we love Sophie as she is and because we see by her still, graceful presence that she is about love, pure and simple.
And then there's the awesome parking...
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I am so moved by Elizabeth's acceptance of her children for who they are. All different. All truly known and deeply loved.
Now that you have read this eloquent, moving post here, you will surely want to follow her home to her blog, a moon, worn as if it had been a shell, and read more there. You'll also get to see pictures of her lovely children and the beautiful things she bakes.
Read this post about an extraordinary ordinary day, and this incredibly moving post (with lovely photo) about Sophie and her presence. Or maybe this moving stream of consciousness post about a morning with Sophie and Henry.
Or possibly you would like to hear a little of the gallows humor that helps Elizabeth get through life, as in this post about yet another dinner with seizures.
Finally, Elizabeth is yet another SNSS guest who can also be found at Hopeful Parents, where she writes and is a member of their board.
(Unlike the other SNSS guests so far, Elizabeth is not on Twitter and doesn't have a Facebook fan page. So you'll have to just read her on her blog.)
Thank you, Elizabeth for gracing my blog with your lovely words about your lovely family.
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