“E!”, she calls out in her familiar, slurred speech. She is sitting, resting her legs. She holds out her arms for me. “E! You haven’t seen m’room yet? I have purple flow’rs!” She reminds me this each time I see her, more times than I can count. Her routine conversation starter with me. I respond.
“Yes, I have seen them Jaclyn. I’ve seen the flowers many times, remember?” I smile at her.
“I think you forgot, huh?” she accuses me, shrugs her shoulders, and then smiles at me unsure of what to say next.
“How was school today?” I change the subject.
“Good!” she says, her eyes squinted into half-moon arches, her cheeks flushed.
“Tell me something you did today at school,” I look to her.
“Mom? Mom?” she suddenly calls out, looking around, her index finger pointing in the air, asking me to wait a minute.
“Mom, whad’I do today, huh? You r’member?” she speaks with a slur that is all her own. I don’t know if she is asking mom just to include her in the conversation, or if she really can’t recall. So I ask her, “Jaclyn, do you remember?”
She shakes her head mournfully, throwing her hands in the air with a shrug of her shoulders, but with a slight smirk, “No, I can’t.” She sighs for dramatic effect.
“Jaclyn, you went out to eat with your friends today, right?” my mom reminds her as she breezes through the kitchen.
“Oh, right mom!” she giggles and smiles, her shoulders shrugged up to her ears. “E, I g’to-a restaurant, t’day!”
She tells me this triumphantly, a highlight. Then she adds what she chose off the menu, “I ate chick’n tenders!” She laughs at a high pitch and covers her mouth with her tiny hand.
I share in her excitement, telling her I’m sure she had a great time. I speak in my normal tone of voice, as if I am talking to another adult. But at twenty five years old, her brain’s capacity is locked down, buried in a time capsule. A child trapped in a woman’s body.
The first underdog achiever I met in my life was 25 years ago this July. 1988.
It was the decade of men’s skinny ties and acid wash, pleat-front jeans. Of feathered and sprayed hair and women’s blue mascara. Geometric prints, shoulder pads, and neon. A decade still ripe with record players and vinyl. My banana seat bicycle with those beads on the spokes that made a tinkling bell sound when I turned the pedals. I used to wear my bleach blonde hair in a high, side ponytail and my tie-dye shirt knotted to one side. The high charged 80’s.
When I first saw her, her head was wrapped in surgical gauze and a breathing machine was attached to her upper lip with medical tape. The bleeping sounds of hospital monitors is faint in my recollections. Her head was almost the size of her body; an enormous proportion that can only be described as alien. Her face was tiny, but her forehead and skull were enlarged and strange looking. Her left ankle was a grisly black and purple from needles and blood samples. Bandages protected the stitches on her abdomen. I touched the newborn skin on her leg with a hesitant hand, my opposite hand curled into a fist, sucking my thumb and twirling my braids. This was a pink, tiny baby, premature and given a prognosis of 14 days life. Max.
Her mother was able to cradle her in tender arms for the first time on day 14. Still living.
After one month her young parents were informed that her head could enlarge to the size of a basketball and “she wouldn’t be in any pain.” Really? With all that cranial fluid and pressure on her brain and her eyes? They were more than skeptical. Some doctors insisted that she couldn’t feel pain. It is what they reiterated to reassure my mother a year later when she raced down the hospital corridor to her daughter’s blood-curdling shrieks.
They were cutting her open with a scalpel and cutting her shunt tube that ran from brain to abdomen, strapping her flailing body down without anesthetic.
“Why don’t you just take her home and let her die in peace?,” a nurse blurted out at the hospital. She stared incredulously at the mother, the father, who against all human hope were doing their best to help their daughter fight, and have the chance to live.
Count your blessings and move on in life.
Throughout our childhood it was my job to ensure she did not experience a seizure alone. They occurred at night and so she and I slept in a double bed together for my entire growing up years. The family calendar that hung in the kitchen next to the refrigerator was marked up in ink with the duration times of seizure episodes. Medication bottles from Walgreens littered the counter top. As a pre-teen I could correctly administer her differing medication doses, three times daily. My younger brother was an expert time keeper at eight, calling out the length of her seizures in minutes and seconds with pride. My mother held Jaclyn on her lap while my father or I would hold a bowl in case she vomited and a towel to catch her saliva she was unable to control. We were all a team, working together. The spokes turning around the hub of a wheel.
A childhood of occupational therapy, speech therapy, physical therapy. Weekly seizures, panic-stricken gasps when she would fall, her head smacking pavement or floor. Like a movie reel in my memory sits my mother, fingertips feeling the bulging, make-shift shunt behind her child’s ear, just under the skin’s surface. Innumerable surgeries were performed ranging from the eyes, to the brain, to the legs. A near death scare from a growing infection when she was just a toddler. Hospital beds, walkers, orthopedic shoes, braces, casts. Constant changes and adjustments in medications and doses as her body grew. It was her childhood. My childhood. My brother’s childhood.
Count your blessings. She’s alive.
And she was alive. Fearless, she would jump into a 12ft depth pool without a floatation device, despite the fact that she couldn’t swim. She loved the water. A determined toddler, she would crawl a quarter of a mile from our house to the park playground as quickly as she could before anyone would notice she was gone. She loved the slides. The feeling of independence and freedom. Sociable, she greeted everyone who crossed her path, waving as she maneuvered her tiny, pint-sized walker at 3 years old, her baby blues magnified under peach colored eyeglasses. She was the epitome of living in the moment.
Count your blessings, because it could be worse.
These thoughts burned like branding into a child that grew to be a teenager, a young woman. A tattoo of permanent ink on the brain. It could have been worse. I used to hear this, swallow this, and before long, I stopped questioning it. Be thankful she’s not staring at the wall. Be thankful she can talk to you and recognize you. Be thankful she doesn’t have a myriad of other problems.
By ten years old, I was trading friendship bracelets and having sleepovers with girlfriends and I knew she was not a sister in the normal sense of the word. I was never going to stand in her wedding. She was never going to take a weekend trip to visit me at college. We were never going to gossip and shop and shut the bedroom door and discuss life. We would never fight over clothes. I was never going to pass on wisdom of being a wife and a mom to her, my younger sister. She was never going to be the cool, single aunt that took her nieces out for the day. I internalized these things as a child. Long before my peers worried about such life lessons, I was preparing myself for the long haul. And I never took the time to mourn these things because we were thankful. We couldn’t change any of it. I told myself, it just……is.
There is nothing to do but to just survive in it.
I was like a caretaker with my parents, she was a live baby doll. It was legally solidified the day that I signed the court papers when I was 25, honoring me as her guardian in the event that anything happened to my parents. I moved out of state with my family; my brother now plays part time caretaker to help when he can. The little boy who used to fight with her just like a brother would with his sister, complaining that she used to get away with everything, is now a man who watches after the six year old who hasn’t grown up. Still trapped in a childhood my brother and I have left behind long ago. But she is still there.
Her brain is a time capsule, forever locked down even though every person around her ages. Forever young.
“Do you ever feel that you’ve played all your good cards? You get three wishes from the Genie, right?,” I ask my husband, little girl grown up. I know this question is ridiculous, but I know that deep down in my core, I believe it. I can count my three good things in record time: my husband, my eldest daughter, my youngest daughter.
If I dream too far, too high, too much, I’m just going to tip the scale.
The fearful thought comes back from my childhood past into the future: Count your blessings, it could be worse.
A lie to shut off disappointment. A lie that runs so deep that defeat is already accepted: She could have died; just be thankful she’s still alive. And then it takes a jumping switchback from past to present: You could lose your own children, your own husband. So be grateful you have them. Counting those blessings over and over and over and the lie that morphs out of the evil heart is this: that’s all I get in life. No guarantees. Stop asking for so much, E. A fickle jackpot and I already hit the lottery. Play it safe. I peaked at 23 years old.
I cheated death. I was born alive. I cheated a mental lockdown. I was born healthy.
My sister, was not.
My brother returned from Iraq in 2005, changed. Grown from an unsure boy to a somber man. He lost brothers. Friends. Marines. He had now cheated death too.
Guilt wracked his soul for having lived. For coming home.
Marines had died. The middle child came home, struggling to reenter civilian life. His younger sister, still trapped as a six year old. His older sister, shutting off her disappointment. Emotional lock down. We were all trapped.
“E, you have everything. A perfect family, a perfect life. Nothing bad ever happens in your world.” These words haunt the soul, spoken by a dear friend when we were young. When we were so impressionable.
No, no one has a perfect life, I reassure her.
Then why don’t you talk about it?
Because it could be worse. Because if I talk about it, it makes me sad. Because there is nothing I can do about it, I think. Because if I’m sad about it all, then that would mean I’m ungrateful, right? Because then I have to be vulnerable. Because then the wall comes crumbling down.
I was the daughter that experienced my high school years in full awakening. I was the young woman who married my husband without a care in the world. I was the one who was whisked away to live in a tiny apartment and start life together with an adoring man. The lucky one that didn’t even try to get pregnant that blissful summer of 2003, but did. God blessed me and anything more than that is just insipid, I tell myself.
Can we ever dream too big? Can we ever want too much good?
The truth is, there is pain and trial in this world, and this is not the way it is supposed to be. And I won’t ever stop talking about hope and joy and triumph. I refuse to let hope be crushed under the weight of thinking this is all just luck of the draw.
There was once a Dream set in motion, a Plan, meant to free those in bondage, trapped in hopeless chains. To lift and strengthen the weak, the cursed, the dying. There was a Word from heaven, Love itself, that would heal and cleanse and make anew. A Hope that lives and moves and Love that will set free.