It’s happened. The cuteness-continuum has shifted.

Which is cuter? No contest.

May, with her powers of superior cuteness, has shifted all attention from her pregnant mama to herself.

Yummy Mummy? No chance. Relatively clean but teaching her first period lesson with a huge glob of baby sick in her hair? Far more accurate.

(And true. Unfortunately.)

 

 

Even without the baby sick, I am second fiddle to dimples and adorable shoes. The girl has hearts on her tush! How can I compete with that?

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An Amazing Half-Brained Baby Milestone: 100,000 Hits!

Then...

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

– September 17, 2009

100,000 hits ago I started this blog about May. She was four months old. I felt lost, uninformed and in love – the pressure of those three things in combination was enormous.

I thought if I could log everything I did with May, I could better evaluate what worked and what didn’t. I also hoped that friends and family would read it so I wouldn’t have to impose myself on them via bulk emails and phone calls endlessly repeating the same depressing refrain: “No, there is no improvement.”

I’m not sure I accomplished any of that. Especially the last bit. Clearly, that didn’t happen.

So what did we accomplish?

May learned some adorable sounds, strengthened her arms, learned to hit some toys and took charge of the household. Check out the Highlights page for some of the best moments.

Here are a few of my favourites:

May says, “No!”

Witness the Fitness

May is American!

And, my favorite bit of writing that didn’t appear on this blog:

A Hero or Just a Parent?

For anyone new to this blog, the sentiment I wrote in that piece still stands. I’m nothing more than a parent. And, May is nothing more than the most adorable half-brained baby in the world.

Finally, one last cause for celebration far better than 100,000 hits. No seizures for four days. May’s new medicine is working.

Then…

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This week I’m… worshiping at the Church of Shoes.

What is a woman without her shoes? My husband thinks I own way too many. Analogies containing the phrases “boot an army” or “second mortgage” are used in reference to my growing collection.

It was only a matter of time before I turned May to the dark side (or, in this case, the pink side).

May can’t walk, or crawl so it’s not too surprising that I didn’t figure shoes into her life. It’s not like her feet would get dirty. And, I wrapped those toes up warm in the cold.

Shoes are one of many things that fell into a parental black-hole once I became May’s mom. For example, my house is not child proofed. My daughter can’t get into… anything. When people visit us with their children, there is always a frantic run around as they drop their toddler into the middle of a catastrophe waiting to happen.

Stair gates or locking away detergents – or something as simple as shoes – never occur to me.

But, now that shoes are in my field of vision, woe be damned anyone who gets between me and a cute pair.

And, here is the interesting bit that makes shoes not only fashion, but worthy of a This week I’m… post. Whereas I worried that shoes would hinder her movement, I even had her physio check her feet before purchasing them, instead, shoes are the support May needs to bring her bouncing to a new level.

The shoes provide May with more stability. They add weight to her feet and make her less likely to stand on the balls of her feet (a trait in children like May). They are bulky which makes it difficult for her to cross her feet at the ankles (another trait). Also, the friction on the soles means she doesn’t slide around so much when in a bouncer.

All hail Shoes! I bow before You (to attach the velcro and tie the laces). I worship at Your stores and pay homage to You with my credit cards.

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We are on Twitter!

Follow Mama Lewis and the Amazing Adventures of the Half-Brained Baby on Twitter!

You can find us at: http://twitter.com/MamaLewis1

Can you believe there is another Mama Lewis out there? I was too late to get just plain MamaLewis. I should have joined Twitter sooner. What was I thinking???

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How to explain the Half-Brained Baby

My nephew is turning seven soon. He is old enough to understand scientific classifications of dinosaurs. He is old enough to know his way around a refrigerator (as in: he hates almost everything inside of it). He is old enough to understand that the store named Buy Buy Baby is a play on words.

He is also old enough to understand that in his American elementary school, unlike most primary schools in Britain, there are “special” children. Some, he told me, can’t walk. Some can’t read. Some can’t talk. He knows they are different, but he is still young enough to feel they have more in common than less. (And who is to say he is wrong?)

My daughter is the youngest in our family. She turns two in April. Right now, there is no one to compare her to. If she is slow to walk or talk or any of the other “normal” things a baby should be doing at her age, he doesn’t know any better.

Sure, he asks me sometimes when she will learn walk or talk, but he doesn’t expect her to do it.

Soon, a new baby will be here. And, fingers crossed that baby will be capable of all the “normal” things one would expect. I don’t mean for it to sound negative, but it is only natural that comparisons will be made.

So, when is the right time for a conversation about May? Or, does there even need to be one?

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This week I’m… fighting the Hand War

May’s hands are an ongoing battle. We have hand splints and exercises. We try different textures and splashing in the bath. We place them around her bottle or a hair curler. We lean her over our leg so she supports herself on them. I’ve been documenting the Hand War since September 2009 and much of the same work I did then, I do now.

Clearly, May’s hands are better for it. They open more easily, even to the point of dropping things now.

But, her lack of hand control is something that, I believe, stems deeper than basic coordination or strength. May has to understand that there are things to touch. She has to be curious enough to touch them. That’s a cognitive issue.

I can only lead May so far. There is not a therapy or solution to this issue, except time. Some problems, May has to solve herself.

Last night, rereading posts from a year ago, I was struck by how much of what I did then, I do now. If I’d known that a year ago, I’m not sure I would have coped that well. Now, I see it as more as a process.

We’ve learned to appreciate the small steps leading to the big moment when she does understand there are things out there to touch. Like the first time she reached up to touch my face. Or, when she giggled at her ability to keep her hands open when I clapped them together.

She hasn’t fed herself or stroked my hair or scratched an itch but, in the meantime, we’ll continue all the exercise and stimulation until she does. Slowly, but surely we are getting there.

Only this week, for example, another shift in May’s understanding that will have been so minor, so subtle that I don’t think anyone outside of my husband and I will have noticed.

We think May is trying to sing along with us. When we sing now, she can’t match the sound, but she tries to match the tone.

At least, we think so. Like her hands, we’ve done everything we can to help her recognize and distinguish sounds, in the hopes she will communicate herself. Will this be one of those tiny moments that we will look back on as the start of something big? Or, is it a tiny, if wonderful, moment of understanding that will drift out of May’s mind as softly as it drifted in?

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Miserable? You came to the wrong blog.

May’s a bit older now so people will ask me if she is talking or walking yet. Is she getting into everything? Is she being a little madam?

I try to be gentle in my response, something like, “No, not yet, but I imagine she will soon.” Which is a lie I tell so that I don’t have to comfort other people who feel unnerved by a little girl who can’t speak or walk.

The response they usually give me is “Ah, bless” which loosely translates into “Oh, your poor poor baby and poor poor you” which loosely translates into “Your baby’s life and your life are so sad I want to cry.”

To which I want to say all kinds of things I won’t repeat on this blog because some of my students may read it. (Hi students! They are still taking donations by the way…)

Recently, because of the pregnancy, the questions have become more specific. Women with glittering eyes and beaming smiles say, “Is your daughter excited about the new baby?”

I don’t have a stock phrase for this yet, but I better get one soon because “No, she doesn’t understand that there is a baby” isn’t going over that well.

Okay, so May isn’t speaking or walking or doing calculus yet. That doesn’t necessarily mean that we are sad. On the contrary, May is very happy. As are we.

Look closely to see my little bump!

We don’t need to count our blessings. Ah bless and amen to that.

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Six-Month State of Brain Review

Every six-months, May’s team review her “state of brain” (if you will allow me such a turn of phrase. Actually, this seems pretty minor compared to “half-brained baby” and no one seems to mind that).

It is a developmental review, but “state of brain” sounds so much more accurate. Accurate and ominous. Accurate because they don’t just look at her developmentally, but also review her general health and seizures. Ominous because inevitably someone says something at these reviews that sends me into a minor tizzy for weeks.

We’ve had two other reviews, at six-months and a year. Originally, I thought these reviews were for us, the parents, to learn how May was doing. To be honest, I would find that far more helpful as opposed to what they really are for, which is for the team, to hear how we think May is doing. The positive thing is that having everyone in the room together means that we collaborate on what we need to do next.

Without a doubt, May’s team benefit us. They fight for her funding. They acquire amazing equipment for her. In the coming months – or years – as the government tightens ever further on funding and gives local councils ever more freedom to spend it as they will, we need professionals fighting our corner. That is, if they still have their jobs (see my last post).

But, I am not a saint and I do disagree with the professionals sometimes. During May’s last review, her pediatrician made May’s weight a sticking point. Despite me repeatedly explaining a recent weight loss and May gaining it all back by the time she saw her (within a month), she insisted I see the dietician.

Thus began a vicious “British” argument, which means we didn’t argue but pleasantly disagreed with one another, neither of us backing down. She even called me to discuss it further that evening and I again stressed my “deep reservations” about seeing a dietician – to no avail. She’s made the referral anyway.

I made the following points to her, which she clearly disagreed with, but I still feel are true:

1 – If it wasn’t for May’s brain-damage, we wouldn’t ever have a dietician conversation. If May was a “normal” baby, she would be given a prescription for a supplement to boost her weight. Because she is brain-damaged, it is assumed that her lack of weight is something I need help on (what I will call the ‘Parental Brain Deficiency Syndrome’ when doctors seem to think parents of brain-damaged children are also brain-damaged).

Having said that, she did write in the report that she felt nutritionally May had an adequate diet, but that input into calorie uptake would be useful to the parents. It’s not, but at least I suppose she tried to soften the blow.

2. It is not always necessary to intervene with May’s care. We receive a constant stream of advice from people. We are not allowed to parent on our own. We are not given the room to make mistakes. In this case, if we feel that May’s eating has significantly improved and the pediatrician is unable to look beyond the numbers, who is correct?

I’m a reasonable person. In general, I follow the advice I am given. But, I should be allowed to disagree and make my own choices about how to parent my child over fundamental things like what she eats.

I received the written report for the review yesterday. It contained all kinds of small discrepancies with what I said on the day. The report says she has just begun vocalizing, when she has been doing that for a year. The report says that May doesn’t enjoy bouncing as much as she used to. What?!? Tell my arms that. Finally, the report contains some supplementary advice, I assume given by the dietician of whom I specifically expressed reservations about.

The advice is to change her milk to Aptimal to add calories. Good advice, if it wasn’t for May drinking Aptimal since she was born.

I suppose this may seem petty when compared to the enormous amount of good work May’s team do. And, I’m aware of the irrational streak in me that just wants to tell everyone involved with May to F-off and leave us alone. Or, maybe it is not unreasonable for me to ask that when assumptions are being made about our care of May, the facts should be correct.

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Thank you!

Many thanks for the outpouring of support for our new baby!

I will admit a bit trepidation in telling people. After everything that happened with May and all the challenges we encounter (though rarely from May herself, mainly from the people administrating her care), I keep waiting for someone to say, “What the hell are you doing Stacie?”

So far, it has been unwavering approval.

Therefore, I hope you don’t mind me suggesting some practical methods of supporting us, all in honor of the new baby-to-be!

1. Lambeth are planning to cut jobs from May’s Speech and Language Therapy team. May’s SALT is one of the most knowledgable, supportive and effective therapists that has ever worked with May. That she will not be in May’s life is a devastating thought.

Without exaggeration, I fear for my daughter’s future without SALT support. It is incredibly short-sighted to cut these jobs. They teach people to eat, drink and speak. Imagine your life without these skills.

Please support their campaign to keep their jobs. Email yourchoice@lambeth.gov.uk to voice your concern.

2.  My lovely Year 9 girls are raising money for May’s school Small Steps. The girls have been giving up their lunches to learn Bollywood dance. Next week is the big performance, following which they will teach other students their moves. I’ve made my own JustGiving page to support their efforts.

Remember, Small Steps charges parents no fees so give generously!

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