This is a guest post from my friend Barb, who wrote to me after she read my post on Monday, The Middling Place. She’d sent it to me as an email, but I strong-armed her into allowing me to share it with you, Pranksters. It’s a beautiful post about special needs parenting.
(I’ll probably steal it again for Band Back Together, because I am a jerk like that)
P.S. Barb, I love you.
I, too, live in the Middling Place. Off and on since November 1987.
We will never be able to be completely away from there. It is as much a part of you and I as our livers or kidneys. After a while, you will know when it’s time to be there, the Middling Place.
You feel the cold fog press over you as though someone has thrown burlap trimmed with heavy metal weights over your head. You try to peer out through the gaps, see the world around you, feel the sunshine on your face. Shivering, you watch the images of what may have been. Your child growing up “normally.” Walking, talking, and laughing. I’d even accept the tears.
You see her standing outside of Life, looking in at the others. They are growing, and dancing, sneaking kisses, driving and going to College without much thought. Does she know she is different? Does she feel what I see?
As the seconds and minutes and days and years tumble into the heap called ‘Life,’ you learn to control your tears and overwhelming sadness. ‘Fake it ’til you make it,’ you always say. But when that deafening call sounds within your heart, your soul, your entire being, you know can no longer ignore it.
You’re commodious: ‘I can handle anything” facade crashing noiselessly to the ground, landing as shrapnel at your feet.
You turn and limp wearily to the Middling Place.
You glance back at your parents, your husband, and your other children. You are regretful to leave them, but you have no choice. You are carried away by a force stronger than yourself and soon you relent and let it take you. You are being eaten alive. Gobbled by the ferocious monsters’ hunger, ripping at your flesh, tearing your heart out, laughing clamorously, and finally injecting you heavily with Guilt.
Blame and Fault become your champions, reminding you of the day you sat in the sun too long, or had a sip of your husbands wine or didn’t sleep enough or swam in that river. Her pain, her disfigurement, her disabilities, is of your own making.
Finally, struggling, stumbling, exhausted and weak, you get up on your feet. You straighten your clothes, wipe the tears, and fix your hair. We can’t allow her to see. She can’t know she is the reason.
Back where she is we practice, prepare educate and train, make plans and see ‘Professionals’. We try anything we are told will help her.
She begins to speak! One word, two words, three words in a row! We count for years! Warmed by the silly sentences she utters.
She’s walking now, that jilty gait, like she will spill over at any moment. You valiantly let her go on her own, cringing inside as you imagine what the possibilities are.
“I love you,” you tell her. ‘Yes’ she says. I want to snuggle her, wrap her in my arms and cover her with kisses. She rejects me, cringing as though I am poison.
One day though, she will bring some artwork, a picture of the two of us, she and I, maybe sing a song, and let me touch her hair. Clap, clap clapping loudly through the house will make you smile, because you know she is happy. Her enthusiastic attempts at jokes will make you laugh for days, repeating them to friends who will never understand.
This is our life.
We wish they were different, yet at the same time, we don’t ever want them to change. We love our babies.
They make us stronger, more insightful, more perceptive than before she was here.
Before the Middling Place.
When I was a kid, I had a fainting couch in my bedroom.
Not because I was prone to fainting or requiring long periods to regroup on a fashionable yet comfortable accessory, but because my parents had antiques – lots of ‘em.
But I was always mystified by this contraption. When I was sick, there were two things I wanted: The Price is Right and a pillow. Later, it became a bottle of green death flavored Nyquil - for all those times you want to be comatose without a traumatic brain injury (TM).
(I should really run their advertising campaigns)
Now, of course, I have kids, which means that I can’t spend the day in a Green Death Coma. Kids have these NEEDS, you know? Like FOOD. And DIAPERS. And the Wii. No more Green Death Coma for me!
Which is usually fine. Nyquil makes me gag and generally when I’m sick one of two things happen:
1) I can sleep it off
B) I can work through it.
But I’m in the middle of a nasty withdrawal from my maintenance migraine meds (alliterations for the win!)(Carbitrol, for those who care), which means that sleep is out of the question. So is doing everything from writing a coherent blog post to taking a pee without whining.
I took yesterday off, a rare occurrence, figuring that spending a day huddled on the couch with my blanket and a Hoarders marathon, taking the time to properly moan, weep, and feel sorry for myself, in the hopes that I’d feel better today. I mean, I got shits to do. Like write crappy blog posts. And use The Twitter. And walk upright! And learn particle physics! AND LOUNGE AGAINST THE MOTHERFUCKING MACHINE!
It didn’t help.
So I will be taking today off as well, obnoxiously resenting kid germs, plotting the untimely death of Mark Zuckerberg and trying to lounge against the machine…from the couch.
If only I had more Hoarders and my fainting couch back. I bet that’d get me right again.
I sat there, glued to the end of the couch, holding onto my new baby like she was a life vest, the light from the end table next to me bathing us in a soft, yellow hue. There were other people around, although it was late in the evening. My sister in law? My mother? I can’t remember.
My sons, too, were around. Perhaps it was just the big one. The small one, based upon my memory, should have been in bed, although perhaps he was not.
Softly, I rubbed the top of my new girl’s head, breathing in that new baby smell. Each time my hand brushed that bump on the back of her head, that hard, fluid bump, the tears formed, my eyelashes grew heavy and I began to moan. I wept into her, so scared of the future. We’d been discharged from the NICU with very little beyond a scary diagnosis and a follow-up card for a neurologist who didn’t take our insurance.
The diagnosis was new, and I refused to use Dr. Google to make myself feel worse. I knew what a “posterior encephalocele” was. I just didn’t know how dire a diagnosis that was. Until later. Much, much later.
I’d bought myself some books – pre-nightmare – to read during those boring hours I planned to nurse my new baby. Word searches, books, and a potential maid service – all things I’d busied myself thinking about, feeling they were very important, until the doctor had said the words that forever changed me – “Becky, there’s something wrong with your baby’s head.”
Now it all seemed so stupid. Who gives a shit about spot-free mirrors when you’re not sure if your new baby will be celebrating a birthday?
But I could not bring myself to talk, to open up, to any of those around me. I knew it would be in vain – if I opened my mouth, I’d just begin to cry those awful, gut-wracking sobs anyway. Lord knows I didn’t need to cry any more – I could barely see through my shiny, swollen eye sockets.
Instead, I reached down into my thoughtfully packed hospital bag and pulled out a book. I’d bought two – a luxury considering I was about to have two under two – The Memory Keeper’s Daughter and Revolutionary Road. I had no way of knowing that these were not books that someone with a medically fragile baby should be reading (one is about a mother who delivers two babies, one with Down Syndrome, who is taken by a nurse and raised separately from her brother and the other about an unhappy housewife in the 1950’s who dies after attempting to give herself an abortion).
I had no way of knowing how horrifying my choices of book were, but there I had them. And I read them both.
In the quiet of that cold February night, I read them both.
It was the beginning of what I called The Middling Place. The space between learning how quickly your world can be turned on it’s head and learning how to live sideways. The space between diagnosis and reality.
The place where you wait.
The place where, in those quiet moments, your heart feels heavy in your chest, the demons and monsters threatening your every move. The Fear a permanent resident in the back of your own skull.
The Middling Place is a lonely place – a secret place, a land of tears, inhabited by you and you alone. Other people may drift nearby, stuck in their own Middling Place, but yours is a solitary land. Some moments, they’re filled with the purest of joy. Others with an unending sorrow.
It’s not always a bad place, The Middling Place, but in those quiet moments, the voice in your head reminds you of how fucked up this really is, your skin crawls and your guts threaten to expel themselves any way they can. You’ve tumbled down the rabbit hole, Alice, and why yes, I’d like a cup of tea – two lumps, no milk, if you please.
And you wait.