Helping?

The machine flashed at me, a silent red number four, imploring me to press play.
I ignored it a while, got the kids in from the car, unpacked the weekend’s bags, put a load of whites in the washer and loaded Toy Story to distract the boys while I started dinner.
While the Toy Story menu demanded I press play on the DVD remote, the answering machine still blinked at me. I hit play on the old black Sony with the failing cordless handset.

“You have four new messages. Message number one”
“Sara, it’s Julie, there’s a new set of twins in the NICU. One of them has Downs. She could use your help. Call me.”
I press delete.
“Message number two”
“Hi Sara, It’s Georgina from the NICU. Please call me or have social work paged on 466.7682 as soon as you can”
I press delete.
“Message number three”
“Sara, It’s Michele, I’m charge nurse tonight. There’s a family here who’d like to meet…”Delete
“Sara, It’s Isabel. I was hoping…”
Delete

I call the NICU, 462 7682. The number was engraved on my heart four years prior.
“Hi, is the new family with the kid with Down syndrome around right now?”
“I’m sorry, patient confidentiality…”I cut in:
“It’s OK, It’s Sara, I work over in admin, and run the local DS group. The family have asked to meet me. I just don’t know their names yet.”
“Oh, yeah, sure. Lemme get the Mom”
“Hang on” I plea…
“Before you get them, can you give me some info, some background?”
“Are they preemies?”
“Are they nursing, is Mom pumping?”
“Are these their first kids?”
“Are they IVF?”
“Do they have family around?”
“About how old is the Mom?”
“Do they have a religious preference listed?”
I get the best answers I can expect from a unit coordinator and then she fetches the new, newly distraught, and horrified mother.
We arrange to meet. In one hour.
She doesn’t sound too good.
I haul the kids to my neighbor’s house, despite their protestations, and appease them by sending them off with the Toy Story DVD and a box of Annie’s Naturals Organic Macaroni and White Cheddar Cheese Shells.
I buzz in to the Neonatal Intensive Care Unit. There are the 34 week newborn twins; Victoria, the normal one, and Scott, the little floppy one with the clear plastic canula poking up his nostrils. They lie in matching isolettes, bundled up tight in the white cotton baby linen with the pink and blue stripes ubiquitous to maternity units across the country. There are feeding tubes shoved down one side of their noses, IV lines taped to boards on their ankles and three monitor cables smother their chests while recording heart rates, oxygen saturations and breathing rates. They’re sleeping like… like babies.
The Mom sits, hunched over, shriveled in a scratched up solid oak rocking chair without any padding, the only two privacy screens in the room of twelve infants acting as a mourning veil, hiding her shame and fear and grief.
She wants to give up her little boy.
Her face is wet and soggy, eyes swollen, hands trembling, hair greasy, breast pump standing idle by the wall.
“What amazing children”, I say. “Welcome Victoria, welcome Scott.”
I introduce myself, and ask if I might touch her babies. She nods, though she doesn’t really look up.
Scott’s hair is thick and black and very, very soft.
“I see he has your hair. What is his father’s hair like?”
I think she’s grateful for an unloaded question.
“He doesn’t have any hair, well not much anyway.”
I snort a little giggle. “Well, his beautiful babies don’t have that problem.”
“May I .. may I hold this little boy?”
“Sure” she says, surprised.
I ask a nurse to assist.
We twist the clips, and the side of the plastic cage hinges open. I reach in, the nurse carefully drapes the wires and tubes over my left shoulder, and I stand, holding a new life close to my heart. He smells like new life. Future unknown, floppy start, terrified mother, weak suck.
I kiss his head, even though I know I really shouldn’t. I drink him in. I lust for his newborn peach, his miniscule lips, his luscious petal thin toenails.
Mom asks me a few questions.
“Can they talk?”
“Will he walk?”
“I don’t see why not.” I say. I try to be upbeat, without being a goody two-shoed, fucking annoying, incessantly positive person. I talk about my first thoughts when Ben was born – the picture I had in my mind – and then I talked about our reality.
Mom listened, or at least nodded like she was listening. But she didn’t want to hear, she didn’t want to digest this raw steak with a few maggots gnawing away at the rind of fat. Her eyes were empty of understanding, full of pain that vicodin fails, of fear that doesn’t allow your hemorrhaging brain to stop pissing blood.
I came back the next day.
Rachel wasn’t like the other new parents I’d met. She looked worse with each day. Her eyes had gone from pain and fear to desolation and despair. Her breasts were torturous and bursting with milk she hadn’t the strength to pump, and her hair was still unwashed.
There was a flutter around the NICU. I caught the wind. They were going to send her to the back. The back of the hospital. The “locked facility” Behavioral Health Unit. A CPS caseworker was on her way for an initial interview, but Rachel needed to get a mental health eval first. The snowball had been given its first push downhill and it could gather momentum in no time.
Rachel and I walked through the locked NICU, down the long corridors, past Cardiopulmonary and the Recovery Room, past wives and sons waiting for good news and blue haired ladies selling gift cards and biscotti. We went out through the swoosh of the automatic doors, her first glance at sunlight in three days, and walked the crossing to the brown shingled building with bars on the windows and no pens allowed in the rooms.
We sat in the friendly lobby and soon Georgette came out to introduce herself as the Mental Health Intake Nurse. I stood, ready to leave them to their confidential work, but Rachel asked me to stay, so we sat in the comfy green plaid armchairs and talked. We talked about depression in the family, about suicidal thoughts, mitral valve prolapse and about post-natal depression.
When Georgette happily announced that Rachel had every symptom of classic post-natal depression, I couldn’t decide how I felt. Was this diagnosis a good or a bad thing? Didn’t that woman, Andrea Someone, just drown all her kids in the bathtub because of her post-natal depression?
Georgette said that Rachel didn’t need to be admitted.
We walked back to the NICU, got buzzed in, and she slunk in the old oak and asked how to pump her leaking breasts. It was a start. A good start in the right direction...

Dream

Two nights ago, I dreamt that B2 was being a pain in the arse and poking my face, or whatever, and that I threatened, jokingly, as I occasionally do, to bite his fingers off. He teased me once more, and I did bite his fingers off. It was remarkably easy, not as hard a Snickers bar, more like a Milky Way.
Anyway, I was suitably horrified, picked up the two fingers from the floor (although i don't remember spitting them out), and raced him to the Emergency Room.
At the hospital, he was whisked away, and inexplicably I did not go with him. When they returned to send him home, I noticed that his hand was bandaged, but the dressings were far too short to have fingers reattached.
I screamed - "Why aren't his fingers back on???!!"
Apparently they didn't know I'd brought the fingers.
A full all-hands search revealed the missing fingers, one of which looked like it was speckled with black mold, on a chair tucked under another patient's bed.
The nurses raced him into surgery and the missing digits were reinstated.
How screwed up am I? What does this mean?

Letting down my guard... (March 2007)

Too good to be true.
Touch wood.
Wouldn’t want to jinx anything.
I have to whisper it.

Last week, I bragged that B2, my four year old son, had been well, healthy, strong as an ox, not even a sniffle, for ten whole weeks.
For most four year olds, ten weeks without a cold, while it might be unusual, certainly wouldn’t be cause for celebration.
Not in this house. No, I more than let down my guard. I bragged. I bragged to my Mum, I bragged to the lawyer, I bragged to my friends and my family. I even sent an email to our pediatrician punching my fists in the air in victory.
The last ten weeks were the first ten weeks of B2’s life without illness. The first ten weeks in four and half years that he hasn’t needed a nebuliser, antibiotics, steroids, numerous doctor and hospital visits. I mean, the kid hasn’t even needed a tissue!
After a month of being well I was cautiously optimistic. It looked like our move overseas did land us in greener grass. At six weeks, I was thinking about planning ahead, and at eight weeks I was ready to shout it out to the world, but, I held off for another two weeks. I didn’t want to celebrate prematurely. There's enough prematurity in his life. I didn’t want to jinx his good health.
Like a pregnancy after a miscarriage, I needed to be sure everything was OK before I started crowing. At ten weeks of stunning good health, of trips to the beach, of going to kindy each day, of swimming lessons and gymnastics, and playdates with friends, I was getting cocky.
Parenting a kid with a lousy immune system sucks. When you see a kid with snail trails hanging down to their upper lips, or coughing a spray of filth, we parents of “fragile” kids run away. When a toddler comes up to us in a waiting room with goopy eyes or a sniffle, we pick up our kids and face them the other way. We keep alcohol based hand wash in our handbags, and wipes in our car. We *never* let our kids play with communal toys at the dentist, or the library. And waiting rooms, well, B2’s not even allowed to touch the door handle or the plastic chair frames, let alone the books or legos that have just spent time in the cess pit mouth of some germ infested infant.
Other parents look at me strangely. When their kids offer mine a slightly drooled on toy, I say a polite “No thank you”. If I say, “My son has a poor immune system”, I know they’re thinking one of three things. It’s either “You know that kids who aren’t exposed to germs don’t build up healthy immune systems”, or “Just because her kid gets a few colds, she says he has a poor immune system”, or maybe “Ewwww, that kid has AIDS or something”.
The truth is that my son doesn’t have any recognized immune disorder. He doesn’t have a Primary Immune Disease, or HIV or anything. His labwork does show that his immune system is functioning below normal, but not by all that much. Living with him dances another tango. Since he first came home from hospital, some five months after my waters first broke, every four weeks, he’d get sick. Not just a cold, but a cold, followed by breath-leeching asthma, a pneumonia, or sinus infection, or double ear infection, or some combination of infections. One round of antibiotics rarely cures him, and by the time the antibiotics do start working, the tentacles of another infection have slithered in. That’s not really true, as we do often get about five days at the end of a course of antibiotics before the next virus sneaks in and turns nasty. But I’m in the mood for a slight exaggeration.
I try to do the right things. Nobody smokes. We eat well, mostly organically grown produce and whole foods. I bought a super-duper expensive vacuum cleaner with enough filters to stop anthrax in its tracks. We wash our hands, and we do have a big dog in the house. I even use my own homemade household cleaners without chlorine and other evil chemicals. It doesn’t seem to make much difference, although if you’d spoken to me one week ago, I would have sworn that all of my hard work was finally paying off.
But no, on Saturday, he had a sniffle, and by Sunday night we were in an ambulance, with him struggling to breathe, as a simple cold took hold of his airways and started shutting them down.
So, now, instead of planning a vacation, I’m worrying about how I’m going to get insurance for a trip. Instead of thinking about going back to work, I’m resigned that no sane employer would hire me. Instead of doing some reading for my classes, I’m Googling “Immune boosters”. Instead of inviting friends over for dinner, I’m calling a friend with another little boy with a crappy immune system. Instead of going to bed early at home after four nights of barely any sleep on a fold-up bed in a ward of fevered grommits, I’m sitting here, writing up this whinging and whining piece.
I’m never letting my guard down again. Never. Not ever. Nope.

Mulching Sensei

“Your son is a retard. He doesn’t do shit, he’s messing up my class and I can’t waste my time teaching him anymore. You need to leave,” said Sensei as he pulled me to one side at the start of B1’s third Karate class tonight.
The actual words were probably closer to “I’ve spoken to my master, Jungle Jim, and we just can’t teach B1 here. This is not one-to-one, and he’s taking up my time, he’s taking it away from the other kids. It’s not going to work”
I walked back into the school hall, and as the other parents watched I put B1’s braces and shoes back on, and walked out while a four letter song escaped me.
Black rot is creeping in.
B1’s stumpy little digits rattled my hand in the night air. My seven year old pleaded up at me. “Stay Mummy, Stay Karate. I behave Mummy. I behave.” His younger brother asked “Why are we going Mummy? What happened?”
I’m the idiot around here. I said “They don’t want you anymore B1”.
There was a time when I didn’t want B1 either. But that was seven years past. Seven years of a growing strawberry blonde rose who has changed my world.
It’s all roses, the Down syndrome thing. Sweet smelling, thorny, black rot, brilliant colour and life sucking aphids. I've gardened through it all.
I composted the gymnastics instructor who told me that B1 would need to wear a nappy in class after he spilled diarrhea on the gym mats.
I green binned the school psychologist who said B1 would never have any typical peers as friends.
I dethorned the woman who called him “Cute, for a retard” in front of the hospital.
I’m not settled enough right now to know how to manage the Karate instructor.
Should he be fertilised? Absolutely not.
Maybe pruned? That sounds attractive.
Or maybe he needs a graft. Yes, that’s it.
He needs a graft from that guy who said “We judge a society on how it treats it aged, infirm and disabled” or some such corny stuff.
I’d like to mulch Sensei and put him in the dog poo pile, but that wouldn’t achieve anything really. I guess I just need to head to the nursery and find a new Sensei. One that thrives on a challenge with gentle encouragement.