The Kevin Chronicles: Half Plus Half Equals Twins

I used to call my twins halves. When Kevin went missing, if he wasn’t buck naked at Jeanie’s house talking to the dog I would tell his sister, “Go find your other half.” Then she would roam the house screaming, “Half!!!Half!!!!!” until she found him. I can’t remember when I stopped, and until the day Kayla’s Kindergarten teacher contacted me at work, I had forgotten I used to call them that at all.

Mrs. Better: Mrs. Ulriksen, I’m sorry to bother you but this was just so cute I had to call.

ME: Oh God, what did she do?

Mrs. Better: Well we had our math test today. You know how I always put a bonus question at the end?

Mrs. Better: Today’s bonus question was, what’s half plus half. Guess what your daughter wrote?

I suspected something was wrong with Kevin at about 6 months old when he still could not support himself on my hip. Everyone tried to convince me I was overreacting. “Oh he’s just a boy” they said, but I knew. By 11 months he wasn’t able to crawl or walk and he still drooled constantly. The day after his first birthday I called Early Intervention but they said they couldn’t assess the situation until he was 14 months old. So I sat there, helpless, as my poor baby enviously watched his twin sister run around the house, then stare at his own legs with the saddest expression that read, “Why won’t you work?”

At last they sent out a therapist and within a month she had him up and crashing into the furniture. He fell every time he got up and had bruises over every inch of his body but he was so happy to finally be moving he didn’t care. “He’s fixed!” I thought. “Thank God I really was worried about nothing.” But then one day the physical therapist asked me if Kevin was trying to talk. “No,” I said. “Why?” “Is he making sounds?” she asked. And then I realized: I’d been so preoccupied with the fact he wasn’t walking I hadn’t even noticed he wasn’t talking. “The drooling,” she asked, “It’s constant isn’t it.” Then she took my hand and said, “Rachel I’m going to ask for a speech consult but in the meantime I think you need to get an appointment at CHOP and try to get to the bottom of this.”

And hence began what I’ve always referred to as the Great Fishing Exhibition sponsored by CHOP. We began with a pediatric neurologist, who sent us to a developmental pediatrician, who sent us to an allergist, who sent us to a psychologist, who sent us back to our pediatrician, who sent us back to CHOP to see a different neurologist. I swear I had that boy tested for everything but a yeast infection and two years later we had………………….a big long list of every disorder he DIDN’T have. By that last appointment I’d had e-fucking-nough. For the 15^th time in 2 years I’d been left alone with a screaming toddler in an office the size of a broom closet with nothing for him to do and I was “put a fork in me” done. So when Dr. Number 3,157 finally walked back in and said, “Well I’m not sure what’s going on here so I’m sending you to have a blood test to check for Fragile X syndrome,” I lost my shit.

Me: Fragile X? That’s the best you can do? Fragile X. Are you retarded sir?

And yes I really did use that word. I’m ashamed to admit it but I’m trying to be honest and in my defense, I was out of my mind with rage.

Doctor Number 3,157: Excuse me?!

Me: You heard me. I’m a special education teacher sir, I know what Fragile X syndrome looks like. His head is not too large for his body, his limbs are proportionate to his torso, his nose is not flat and his eyes are the proper distance apart. You do realize those are the physical manifestations of Fragile X syndrome?

Doctor Number 3,157: Of course I do

Me: So if my son has NONE of the physical symptoms of Fragile X why are you sending me to have a blood test to rule out a condition you know full well he doesn’t have?

Doctor Number 3,457: Well his eyes are rather small…..

Me: You know what? Fuck you. Fuck this hospital, fuck doctors who don’t know shit, fuck everything. I’m not taking him for a blood test. Take yourself for a blood test it looks like maybe YOU have Fragile X syndrome.

Doctor Number 3,457: Excuse me young lady?!

Me: You heard me. Your head is pretty big, but perhaps that’s because you had it stuck up your ass too long?

And then I stormed out. I don’t think they miss me.

Fast forward 6 months: Kevin still can’t speak and because the strength in his fingers is nonexistent, the therapist can’t teach him sign language. And because he can’t communicate his needs, Kevin has become extremely angry and aggressive. Good times, good times. One day my mother came home and found me sobbing on the kitchen floor amidst what remained of her sugar bowl.

Mom: Another tantrum?

Mom: Go have that blood test done.

Mom: We both know he doesn’t have Fragile X but maybe they’ll find something else.

Let this be a lesson to you all: ALWAYS listen to your mother! 2 months later I got a phone call from the lab and we finally had an answer. Kevin had what’s called a chromosome deletion. Under a microscope healthy chromosomes look like little ovals, but Kevin’s chromosome number 4,385,397 was shaped like a kidney bean. “Well what does that mean?” I asked the technician. “I don’t know ma’am, but a geneticist would be able to explain it to you.”

And because I’m not welcome at CHOP anymore, we found a private pediatric neurologist to explain to us what it meant. The initial appointment lasted an hour, the doctor spoke the entire time, and I didn’t understand most of what she said. When she finally finished her litany and asked if we had any questions I had to laugh. “Yes actually. All I understood was that only 50,000 children on EARTH have ever been diagnosed with this condition and his partially formed chromosome directly affects speech and language development.” “Yes that’s correct,” she said. “But this diagnosis. What does it mean? For him, for us, for his future? What does it mean? ” Then she looked at me very directly, “No one can tell you that.”

On the ride home I can remember asking Chris, “Do we try to explain this to the girls?” “I don’t know,” he said. “I think they’re too young?” So having learned my lesson, I went and asked my all-powerful mother for advice on how to explain to my daughters that their brother was disabled. And just like before she gave me some great advice. “Don’t explain it to them honey, they won’t understand. He’s all they know. Someday they’ll put two and two together for themselves and if they need an explanation for WHY he’s disabled, they’ll ask for it. ”

It took a long time. About a year ago Kayla asked me why Kevin was “broken” so I brought out the picture of his chromosome and all the doctor reports and tried my best to use language a 7 year old could understand. She listened attentively but didn’t ask me any questions so when I was done I asked her, “Do you understand what this means?” She thought about it for a while.

Kayla: So Kevin’s not broken, a piece of him just fell off?

Me: I guess you could put it that way.

Kayla: Where did it go?

Me: I don’t know honey

Kayla: Do you think it’s me?

Me: What do you mean?

Kayla: Like a seed mom. You said Kevin came first. He was twin A. The piece that fell off, maybe it grew. Maybe no part of him is missing, maybe it’s here.

And then she pointed to herself.

Kayla: Remember half plus half equals twins?

Me: (Trying not to cry at this point) Yes

Kayla: Kevin!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Kayla: Come hear dude!

Kevin: What you want?

Kayla: I’m sorry I hit you in the face. Look, I have good news. You’re not broken, a piece of you fell off and I’m right here. Do you know what this means?

Kayla: As long as you have me you’re not broken

Kayla: Yup. Come on, we’ll jump on the trampoline but don’t yell at me or I’ll hit you in the face again.

Then she took his hand and the two of them headed for the door. Just before they left Kayla turned around and said, “It makes sense Mom. Everything makes sense now. Thanks for explaining it to me.”