park3 2

park2 2

park1 2

IMG_0835

Eating Out

September 19, 2009 at 21:56

Mama Lewis

2

Today, my husband and I set off for a lovely pub lunch on, what was bound to be, one of the last warm Saturdays of the year. We nabbed a big table in the beer garden of pub up the road. My husband ordered our food and went to fetch a newspaper whilst I sat and bounced May on my knee.

May requires endless bouncing. She has discovered her legs. She loves nothing more than flinging herself up and down, up and down, up and… you get the point.

At the next table, three couples gathered. Each had an infant in tow. All were about May’s age. It was a kind of celebration of sorts – the kind friends have over nothing in particular except the fact that they love each others company. I could not help but watch them. Or, rather, watch their babies and their hands open, exploring.

My heart sank. My lovely darling girl bounced flamboyantly on my lap, but I could only think about her hands and how they remain mainly fisted.

The food took almost an hour arriving. An hour wherein I watched those roly-poly babies across the table. By the time it arrived and the waitress asked if everything was alright, I practically yelled my response, “No. The food is late and my husband has three lettuce leaves on his plate. Three lettuce leaves does not constitute a caesar salad!”

A ridiculous outburst. I did apologize to her.

It’s only been 4 1/2 months after all. Only 4 1/2 months to get my head around the idea that my child is brain damaged. I hope these posts lean more towards the positive, but sometimes, like this week, it is hard to avoid the weight of the matter.

Still, she is happy. A happy, bouncing little girl. And, it is impossible to remain miserable with a chuckling baby in your lap.

Fumblings with the doctors

September 18, 2009 at 20:54

Mama Lewis

0

Anyone familiar with a long-term illness or disability will understand the frustration I feel trying to get a hold of a doctor. Further posts will go into more detail about my intense irritation, but for now just today’s difficulties.

This week May has exhibited increased twitching. Essentially, it is a muscle twitch – sometimes in the face, sometimes in the hand, arm or foot. It doesn’t seem particularly serious, but as it is causing her a bit of distress, I tried to contact her Pediatric Neurologist, from here on referred to as the Boss, since that is what the on-call neurologist at the hospital called him. It’s not a euphemism. May’s doctor is also one of the directors of the hospital.

She had an EEG the previous week so it should have been as easy as someone checking that and giving us a “hey” or “nay” as to whether the twitching was anything more serious.

Unfortunately, being the Boss, means a constant battle getting a hold of him. And, as his PA is on holiday this week, the battle was already lost before I picked up the phone. I left voicemails on his phone, his PAs, the department of neurology, my community pediatric neurologist, the duty nurse and finally, finally, finally, got a hold of the on-call pediatric neurologist.

I started calling on Monday. Tonight, Friday, at 6 pm we finally received an answer about May’s EEG.

Good news! The EEG showed no further seizures. The on-call doctor told us to feel free to harass the department on Monday to make sure the BossĀ  calls us to discuss the EEG in more detail.

A man after my own heart. Harassing professionals comes naturally to Americans.

Medicines vs Sleep

September 18, 2009 at 06:43

Mama Lewis

0

Baby May is entering a sleeping pattern. But, she hasn’t settled yet and the bedtime game is playing havoc with medicines and my sanity.

Last night, I went for a swim and when I’d returned my husband looked like he’d done battle with an elephant. “She’s asleep,” he said, with the triumphant exhaustion of a new dad.

“Did you give her the medicine?”

He sighed, “I couldn’t. I… I didn’t… I…”

As he couldn’t form sentences, I left it. But, inside, I’d already died a little death.

Sure enough, when I woke her for her meds hours later, she screamed straight for an hour and a half.

My husband just left for work this morning. He was dressed in his fluorescent biking gear. “Three times this week,” he said, pleased with his effort, before adding, “Were you up with her in the middle of the night last night?”

“No, I woke her for her meds and she wouldn’t go back to sleep. She was screaming for an hour and a half.”

“Really?” he looked surprised. “I didn’t hear a thing.”

“I know,” I want to say.

Her medicines are important to me. When I deliver her meds, I feel like I am doing something beneficial for her. Everything else I do is not so tangible.

I am so tired. But, I got those meds down.

The Birth of Mama Lewis

September 17, 2009 at 23:40

Mama Lewis

1

Babies are not the only thing born on their birthdays. Mamas are born as well.

I feel like an entirely different person than I was the day before April 23rd. 4 1/2 months ago. Is that a lifetime ago, or just a few months?

I feel older. A lot older.

What I’ve been through the past few months, I wouldn’t wish on anyone. My life as I knew it completely stopped. Some mothers would say they understand that, but most of them would not. My life stopped. Their lives continued on, altered beyond recognition. Mine stopped.

Months later, like an ancient Model T Ford that cranks from the front, I’m moving forward again. I have no idea what the future holds for my daughter and I. But, I hope that by documenting it here, I might help someone else to not feel as lost and frightened as I was. And, maybe I won’t feel so alone either.