Monday, 23 December 2013

Is Santa real?
No, he is make believe. Santa, and the idea of him, is something adults do to make children happy.
So he's not real?
That makes tears come out of my eyes. I'm all emotion.
It's good to cry.
It's not that great. It's like when my Granddad Frank died. And my Granny, Bridie. And Finn from Glee. How do I stop these tears?
That Santa you saw yesterday at the Down syndrome party was a nice man wearing a Santa suit. He was being kind to all the children. And he told you he would always love you, even if you grew up and stopped believing in him.
Ya, and he thought I liked Niall Horan best, but I don't, I like Harry Stiles. All the girls like Harry best.
That Santa probably thought you liked Niall best because he is from Ireland.
I know I'm Irish but I like Harry from England the best. Will that be bad for Ireland?
Not at all. You can like whomever you like. You can like people from different countries.
I have this magazine about being a teenager, a boy wanted to kiss a girl but she was uncomfortable, what does that mean?
It means she did not want to kiss him. Her emotions told her it just wasn't right. Maybe her heart told her not to. Maybe she was too young. Maybe he wasn't kind enough.
That magazine tells me to wash my hair and eat healthy. But I want to kiss a boy. It makes me all emotion to think about it. Sometimes when I see a boy and a girl kiss on a fil-im I cry.
I'm sure you will have lots of kisses in your future, when you are older.
If Santa is dead will I still get presents?

Monday, 25 November 2013

Thanks for the Short Figure at our Door

End of November. Long month. Souls. Thanks. Dark early. Crazy moon.

Comparisons are weird. Why do we compare ourselves to others? I try not to, but sometimes I do. Sometimes I buy stupid things. When the Celtic Tiger was roaring I bought a leather chair because we needed a chair. But we did not need a leather one, even though it was second-hand, it was ill-affordable, grasping... and it's not even comfortable. It takes up too much space. It reminds me of a time I'd rather forget--a time of something opposite of gratitude.

We have a new little friend who thinks we are rich and says so when she sits on the chair next to the fire. But I know it is the warmth of the fire that she likes. She lives in a one room home that was really meant to be a small shop. It has no heat. They have a gas heater but can't afford the gas. She is a wonderful eleven year old. She is sparkly resilient. Her Mom is from the Czech Republic, her Dad from Pakistan. She speaks Czech, Gypsy, Polish, English and Irish. Her favorite song is one she learned in our village school, it's about Annie Moore going to New York on her own when she was 15. I get misty when this New Irish girl sings it. Neither of her parents are working, but would like to be, and they don't collect welfare because they can't or don't want to. When this short adorable figure shows up at our door we are happy to see her. She likes to play with Lily. The two short ones who do not fit into community norms enjoy each other, argue, make up. I like to feed her, keep her warm. She hit a boy in second class who called her Dad a pig. He looks like he is about 15 and adores his daughter.

We took the train from Athenry to Dublin Saturday with our old friend, Malcolm. We went to the Gaiety Theatre to the Nutcracker. It was brilliant, and I loved being in the Grand Dame of theatres, built in 1857. I could picture James and Nora Joyce being there, and Wilde and Behan. Those Edwardian balconies were all cluttered with carved beauty. We ate at a fabulous Italian restaurant,  Il Fico, 6 Chatham Street, Dublin 2, which I highly recommend. Five handsome Italian men sat outside the restaurant like birds on a wire, sipping and smoking. I wished our new friend was with us.

On Sunday we went to the Family Science Day at NUIG. We sat through 40 minutes of everything you never wanted to know about bubbles, and 40 minutes of traveling through the universe. I felt sufficiently insignificant. And so grateful for the 5 bags of wood in the shed which I will wait to light until Lily gets home from school. Every thing is relative.

Sunday, 3 November 2013

Hospital Helloween

There is a teenager on my couch who bellows "Mom, I'm still hungry!" "Mom, milk!" "Mom, I dropped the remote!"

I would usually bellow back, "Get up and get it yourself"...while thinking of my Uncle John's quip in similar circumstances: "You got a couch tied to your ass?"

But today, and yesterday, and mostly likely tomorrow, I jump at her commands. We are home from a four day stay in University College Hospital, Galway, commonly called The Regional.

Lily went to bed Monday night with a hot forehead and the shivers. I gave her Ibuprofen and assumed she would be fine after a good sleep. But she woke Tuesday morning boiling. I drove her to Dr. Piggot's office in Gort without stopping to change her sweaty pajamas. She was limp. Couldn't talk very well. Her eyes rolled back into her head, her long eyelashes fluttered heavily. A young doctor checked her for meningitis, gave her a different fever reducer, observed her for twenty minutes and, in her sisterly voice said, "Will I ring an ambulance or will you drive her to the Regional?"

I drove fast, used every bus lane possible. We waited twenty minutes in the emergency room and were sent to the Acute Care Unit, an extension of the A and E, where twelve trolleys lay in tiny cubicles separated by curtains, a refreshing distance from the busy emergency room where a poor old drunk man sounded like he was trying to vomit Godzilla. Lily's high temp was a mystery. I left her for a few hours that night and drove home where I googled High White Blood Cell Count Teenage Girl Down Syndrome, which gave me a gazillion hits for Leukemia. I paced and roared and bargained and went back to the hospital.

I hadn't thought of leukemia since Lily was a baby. Nor any of the horrible things people with Trisomy 21 are allegedly prone to that were in the depressing so called 'literature' about Down syndrome. My first advice to parents of newborns with Down syndrome is to avoid reading that crap. And now I was faced with thinking about it.

Lily was poked and needled and 62 hours later, diagnosed with Strep. I am relieved and sleep deprived. I am thinking of people who have leukemia, thinking of them with extraordinary love and compassion; sending their parents the strength of oceans.

After two days and one night on the trolley, Lily was transferred to a four bed room in St. Enda's ward. There was a young lady from Romania who sat next to her beautiful mother who could not speak English. The mother had breast cancer three years ago. It had spread to her liver. But the beautiful daughter did not translate that information to her mother, a charming lady who wore a neck brace and danced around in front of Lily, pretending to be Robo Cop. Another lady was told she most likely had had a mini stroke, and now would be as good a time to quit smoking as any. Yes, that's fine, I'll quit, no problem, said the lady. Then, when it was just us in the peach colored and curtained room, she would bolt out of her bed and nip outside for a cigarette. The mayor of Peach Village was a granny who had fluid in her lungs. She proudly talked for Ireland. She had had everything from A to Z in the medical dictionary and delighted in telling me everything. When we were finally sprung from the village within a city within a city, the Mayor told me she thought it was great that the woman whose cancer had spread did not know.

I would be livid.


Wednesday, 26 June 2013

Marching for Special Needs support, grrr

Raising a child with special needs is a political act. I like politics generally, although the past few years  my insatiable appetite for news has found me switching the radio to the classical station and reacquainting myself with old CDs, this week I am loving Joan Baez's Play Me Backwards. For the first time in my life I am disgusted with politicians on both sides of the Atlantic. I used to think highly of quite a few politicians. Imagine that.

We joined a nationwide march in support of Special Needs Assistants. We marched from the cathedral to Eyre square. Lily carried a small sign: Support me now so I can support myself soon. A long legged photographer from the Irish Independent took a few photographs of her and a reporter interviewed her. Yes, Lily said, I need some help at school. Yes, I would like to go to University. When I grow up I would like to be a poetry, like my Mom.

She already is poetry.

And I am still fuming. I can only think of two places where parents of children with special needs don't have to fight, constantly, for simple things. Sweden and New Zealand. |Or so I've read, I hope it is true.

The march was sweet. Too damned sweet. It was appropriately solemn. Galway was dead quiet at 6 p.m., bad timing for a march. There was no loudmouthed politician, priest, poet to rouse the small crowd. Most of young children with Down syndrome don't like loud noise, so that may have been okay. No visible outrage except for the steam coming out of my ears.

 Lily was the oldest Trisomy 21 protester. I think she will be okay, she has determination, an interest in many things, loves books and has a pissed off Mom. My heart was breaking for the younger ones. Baby Patrick in his buggy sucking his dummy the way Maggie Simpson does. Another little man in a buggy with a feeding tube. Our gorgeous 3rd class neighbor who looked smashing in her Ballinderreen National School uniform and stylish glasses. If these children get proper educational support, and I mean support that challenges and pushes as well as loves--they will grow to be independent adults able to work and live in any community.

Solemnity drove home with us until I yelled at Lily for picking her nose. Use the *xx@£ tissue. The finger mined deeper. Don't yell at me, she said. I'm fragile.

Don't play me backwards. Give me a tissue too. Supposedly the bill to cut SNA's hours was reversed yesterday, but the march went on because us parents trust this government about as much as a polar bear trusts the wacky heatwave currently, and unnaturally, baking Alaska.

Sunday, 16 June 2013

a musing view: circus no worry zones

The Circus Corvinni came to Ballinderreen and took me away from Father's Day, away from my heart breaking for the children of Syria and all the children of the world who so deserve two hours of joy plus a huge dose of being mended.Circus Corvinni is one family from Westmeath, all muscled, balanced, amusing, gorgeous, musical and together. Their respect for each other and their ancient art of entertainment lifted us. A baby with a mop of blonde curls slept on his mother's lap and spread his dimpled hand and tiny feet over to my lap, I could feel the heat of his slumber and the bouncy excitedness from Lily who is hoarse from all her woo-woos.

We are so lucky to have a circus across the field from our house. So lucky to have met a few people from the parish I'd never seen before. So lucky to rest assured that some troubled asshole with a gun was not there, in this land where most Guards are still unarmed.

I think we should get circus tents, bring them to war-zones and refugee camps, fill them with wonderful music, lentil soup, acrobats, storytellers, musicians, a few bathtubs, maybe some cuddly dogs. Circus no worry zones.

Welcome to my first blog post. The old name of my Peninsula Clarion column (thank you Bonny Headley) from life-times ago has been resurrected. I will write about writing memoir, poetry, Lily, Down syndrome, single parenthood late in life, and literary snippets from writer's I admire.