Archive for October, 2009

Watch in awe as May prepares for London 2012.

She bounces up and down herself. I’m only supporting her. Supporting her almost 16 lbs. Bouncing. Bouncing. All day long.

Why aren’t I as fit as she is? (Don’t answer that.)

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Best husband ever!

Here’s where we went:


Absolutely gorgeous. Very romantic.

May didn’t miss us in the slightest. And, of course, the one thing I forgot to put on the list of infinite solutions to possible baby disasters was missing: How to release the brakes on the stroller.

Her Nana figured it out. I don’t think she actually needed a list at all.

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Tonight, my husband and I abandon May for the night. The entire night. He is taking me away to a surprise location for the evening. May will stay in the loving and spoiling arms of her Nana in Wales.

I made out a ridiculously long list of instructions for my MIL. It was so long, I had to apologize as I handed it over. “It’s not that I don’t think you know how to do all these things,” I sputtered.

The list sounded much like any paranoid mother’s list. If I summed it up, it would read, “Feed her and she will sleep.” Instead, it was a single-spaced, small font, volume of dribble.

One unlikely item halfway down the page, embedded between obvious statements such as “Will probably fall asleep taking a warm bottle” and “LOVES bananas” was the heading “In case of seizure…”

May hasn’t had a seizure since her first week in the hospital. But, even writing “seizure” made me queasy. I remember very clearly how she looked, how helpless and how pained.

With any luck, those days are long behind us. In that first week, I thought we’d be chained to our flat, imprisoned simply by the amount of equipment necessary to take May anywhere. Certainly, the idea that my husband and I could shoot off for the night was a total fantasy.

A fantasy come reality. Where is he taking me?

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From an early age, I chatted endlessly to May. I say early because I really came into my own when we came home. The hospital felt stifling and as a parent you always have someone within range. Nurses are very caring, but their stream of suggestions also instills doubt, or in me, uncomfortable self-consciousness.

What’s Going On In There? How the Brain and Mind Develop in the First Five Years of Life, has a fascinating chapter about how language forms. Author Lise Eliot surely did not write it for parents of children with brain damage, but it is a very encouraging and fascinating read nonetheless.

She says, “In fact, language offers the most dramatic illustration we have of early brain plasticity… children with… brain damage can show fantastic language recovery. A child can even have his entire left hemisphere removed and still learn to talk, read, and write.”

She highlights two areas specifically to encourage language development that I use with May.

“The most obvious influence over children’s language development turned out to be the mere amount of parents’ talking… Parents who talk more inevitably expose their children to a greater variety of words and sentences.”

In addition to this, she points out research that shows positive encouragement is especially influential.

I keep returning to this book. Every time I dip into it, I feel I am closer to guiding May towards a better future.

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May’s birthday list of achievements fails to recognize some of her cognitive developments. Of course, I have a totally unbiased assessment of my 0.5 year-old daughter’s cognitive abilities.

I find that games, such as Peek-a-Boo (a very technical and complex game of skill), garners more laughter. She also giggles at sounds she likes. Only a week ago, she only laughed when tickled, so this really is a new development. Besides pausing in the middle of baby songs, she is responding to countdowns. Anticipating music and countdowns is something I started doing with May at the beginning of the month.

Now, when I count down from three, with appropriate high-pitched baby tones of course, she snorts with laughter before I do, well, whatever it is I do after three. Mainly, I blow on her neck or bellybutton. Don’t knock it. This is very exciting stuff for a baby.

Surely, this shows she can anticipate an event? Which, in turn, shows she is capable of foresight, a cognitive ability?

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The little monkey is .5 years old today!

Here is a summary of what they definitely knew May would be capable of from birth:



Here is what she can actually do now:




hold her head, neck and back up straight and steady

guzzle a bottle

stand grasping my fingers

bounce like she has trampoline for feet

make all kinds of adorable sounds

open her hand to grab my lip

cough melodramatically for attention

snuggle in

smile adorably

laugh hysterically

eat solid food (yum!)


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Several days after posting this entry, I felt compelled to take it down. Whenever I write about May’s medical past, it is so personal that entries like the one below feel crass and clumsy in portraying the biting emotions of the time.

I’m not really sure what is best – to give a reader snippets of terrible moments and, therefore, diminish their power (it can’t really be any other way in a blog because of the nature of how it is written) or leave them out altogether.

I have deleted posts in the past. I’m am very ambivalent about leaving this up. Perhaps, in a couple of days, it will disappear as well.

After accidentally informing us that our daughter was brain-damaged, you might expect many things to happen. A chair offered. Results discussed. Baby given to parents to hold.

Almost immediately following the worst news of our lives, the doctor offered us a cup of tea.

Even though I know that Americans and Brits are different, I almost strangled that doctor. “Do you actually think a cup of tea is going to fix this?” I  asked sharply.

“No…” she sputtered.

My husband patted my hand. “Stacie…” he said gently, and then he turned to the doctor and said, “I’d like one. Milk and two sugars, please.”

I looked at him and how anguished he was. I felt emotionally parched myself – a feeling that would not go away the entire time May was in the hospital. Every time I entered the SCBU, I went immediately for a glass of water. I never visited May without a glass of water by my side.

I let out the most almighty sigh, filled with defeat.”Oh, for pete’s sake, I’ll take one too. Same as his.”

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A couple of posts ago, I mentioned the activity mat, made by Leckey, that May’s physio and OT lent us for use at home.

When I flew to the States, it didn’t fit into my luggage, so I left it behind. Instead, I tried to mimic its holds with towels and pillows – a totally unsatisfactory endeavor.

Now home, I see why the velcro on the straps and individual pieces work so effectively. Leckey describes the system as supporting, “the child in a secure and comfortable position allowing them to engage in a much broader range of activities than they might do otherwise.”

Today, I placed her in the seat with a strap under her arm. As her arms were already lifted, she was able to reach forward and play with my mouth while I sang to her. It was a great moment for a parent like me. Sometimes, I wonder if May will ever be able to do normal things like reach up and touch my face. Today, I saw that, with proper support, she will.

Many thanks to May’s physio and OT for emailing the photos as part of a program of work they devised for May and I.

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By “how far we’ve come,” I don’t mean London via Detroit, Chicago and Amsterdam, utilizing both trains and planes over the past three days. That is the literal definition.

No, what I mean is: “Isn’t it incredible how far we’ve come since May was first diagnosed?”

Back when we were still in the hospital, my mother asked me to come visit her in California. She lives in Palm Desert, an oasis of peace, sun, mountains and home-cooked meals. Not to mention cocktails at Mexican restaurants. Yum.

My blunt response: “No way Mom. It’s not going to happen.”

“Sure, it could. In a few months…”

‘No, Mom. It’s not.”

I was unable to conceive of a time when May would be out of the hospital. I wouldn’t allow myself to imagine a future where I would have the freedom and ability to travel with May. When something so catastrophic happens, it doesn’t just effect your immediate situation and physicality, it seeps with slimy misery into all aspects of your life.

When my friend’s husband was struck down with cancer, she said one of the worst things was the inability to plan for the future. Dinner out next week? Not sure. A holiday next year? No chance.

It devastated me to think I would not travel to visit my family. But, look how far we’ve come: several visits to Wales; a weekend with friends in Salisbury; four long-haul flights to the States; a glorious train journey through the autumnal countryside between Detroit and Chicago. All with May. All wonderful.

Mom, California here I come.

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Oh, will my partying lifestyle never end!

When the physio and OT suggested playing peek-a-boo a couple of weeks back, I didn’t actually think it would work. We think May has trouble with her eyes and certainly she is totally uninterested in toys (a bit of a disturbing concept for me), so I doubted the power of the peek-a-boo.

But, desperate mamas such as myself will try just about anything, so I did a bit every day for the past couple of weeks. Two days ago, I lifted the formula-stained muslin (Are there any other kind?) from my face and she started giggling!

Of course, I immediately I doubted what I saw. Did she actually laugh at the game? Did she see it or just hear me say “peek-a-boo”? Or, was she reminiscing about a spectacular bounce from earlier?

This is the way with any new technique. At first, you question whether you are seeing a response at all, since the response is minimal and inconsistent. Then, weeks later, you realize that, yes, what you saw was the start of something great.

I continue to be hopeful (as opposed to being in denial – a theme of the blog).

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