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May says, "No!"

September 25, 2009 at 21:09

Mama Lewis


If you doubt May’s abilities, she will put you in your place!

Warning: cute baby alert.


This week I'm... (update)

September 25, 2009 at 08:41

Mama Lewis


Earlier, this week I wrote about how I’m trying to stimulate May’s hands.

Recap: her hands are mainly in fists and I’m not convinced she is reaching out.

The past couple of days, I’ve been incorporating her hands into feed times. I am physically holding one of her hands on the bottle during feeds. She has a tendency to pull away when anything she wants nears her mouth. I let the bottle go in and out of her mouth according to what she is doing. Of course, I also help guide it back in or we’d never finish the bottle!

Also, I place May’s hand in my mouth while I sing to her. She loves to feel my mouth and her hand blossoms open like a flower. Yesterday, it seemed like she was raising her hand to my mouth on her own! Wishful thinking?

I’d like to think my inspirational voice guided her, but I’m not exactly Al Green.

Head Measurement - Part 2

September 24, 2009 at 10:19

Mama Lewis



Two months ago it was 36.5 cm and today it was 37.3 cm. (At 22 weeks)

For those of you who are British parents, you can look in your red book and see that she is extraordinarily below where she should be; well below the zero percentile for a baby her age.

The poor Health Visitor. She really wasn’t prepared to be the one to tell me May’s head was too small.

She had the most pitiful and befuddled expression. “Let’s try again,” she said. But, she’d done it right the first time.

So, the good news is that it is growing. Some babies with May’s severity of brain damage stop altogether. But, it is growing at a very slow rate, much below the growth rate of a normal baby.

Head Measurement - Part 1

September 23, 2009 at 21:21

Mama Lewis


Tomorrow, the Health Visitor comes to my flat. She comes to everyone’s home after they have a baby. She is one of the only ordinary people associated with May’s care.

She wants to see how May is doing and part of that is measurements – weight, height, etc. For normal parents, this is an uneventful moment. But, for me, it is very stressful.

Just like all babies, May will have her head circumference measured. Heads do not grow along with the rest of the body. They only grow as the brain grows. And, the brain only grows if it is developing.

May’s head growth slowed in her last three measurements. It reached the zero-percentile and then dropped off the charts altogether. Then, it stopped growing entirely.

I try not to place too much weight on measurements and focus on May and who she is. Delightful. Full of energy. Warm and cuddly. But, when cold hard facts present themselves, it is hard to ignore them.

An educated woman

September 23, 2009 at 10:40

Mama Lewis


Yesterday, in an email to the Boss, I used the phrase: “I’m an educated woman.” I felt I had to say it. I was asking him to recommend a text regarding brain damage in infants. I have never used that phrase before in any capacity.

In my normal life, as a writer and teacher, it goes without saying. In the world of disability, however, I feel like even I, the parent, am somehow tainted with the presumption of being less able.

For months, I’ve been trying to get a hold of a book, or text of any kind. I want to know all kinds of things. For example, how is it possible that May would have sub-clinical seizures in her sleep? And, if they occur during her sleep is that somehow better or worse, or completely different than if she was awake? And does it matter?

Also, would someone finally explain to me what a sub-clinical seizure is?

I have far more questions than just that.

I’ve asked doctors and therapists for a recommendation and received no suggestions. Sometimes, the person tries to pawn me off with general leaflets on cerebral palsy (it’s brain damage – I get it) or tells me that there will be many professionals supporting me that I can ask all kinds of questions to later. But, the thing is, there aren’t. The people dealing with May, deal with her immediate needs. They either do not have the time or the inclination to answer these questions. Or, perhaps they don’t even have the knowledge.

The other day I spoke to the neurological nurse at the hospital. I was trying – as I had been for over a week – to reach the Boss. She seemed nice enough, so I posed a question. “May,” I said, “is trying very hard to suck her own thumb. But, as she brings it to her mouth, she jerks it away from her face. Why would she do that? It is so frustrating for her.”

She sighed mournfully, “Ah, bless. The poor thing is trying to suck her thumb.”

I don’t need soothing. I need answers so I can better understand my daughter.

I am an educated woman. I can learn.