This week I’m… giggling and singing all day long.

Giggling and laughing and out-of-breath-laughing-so-hard!

What is so funny? Some jokes never get old: choo-choo, fake sneezes… classic baby stand-up.

The last couple of weeks May has also been entertaining herself. No longer does she depend on the comedy genius of Mom and Dad. There are toys. Toys that make monkey sounds are particularly amazing.

And, there are the sounds that come out of May’s own mouth. For Mom and Dad, these are the real delight. May isn’t making new sounds – the last new sound “bah” arrived two months ago – but she is using them in new ways. High, low, extended, combining.

Mainly, I encourage her by leaving her alone. I can, and often do, interject with a well-placed “choo-choo” or imitation of the sound she is making, but to get best sounds out of May, it works to keep quiet.

Genuine baby babble.

Unfortunately, not everything this week was a laugh a minute.

Already, May and I met with the OT, physio, Small Steps, nursery staff, GP and the Boss. I learned that May needs her chair adjusted, vaccinations, splints, lycra suiting, new stretches, harnessing, increased medication, hip x-rays and a communication system.

Who’s up for baby babble? I prefer baby babble.

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Family Gap Year

Britain has an unhealthy obsession with family gap years. A gap year is what 18-year old kids do before they head to university. It’s a year out, doing something totally different in a foreign country. Sometimes it involves charity work – like building homes for a village community in Africa. Most of the time, it involves drinking in bars in Thailand in a bikini while discussing how amazing it is that poor people really know what happiness is, you know?

But, lately, on television and in the newspapers, families are doing it. Mummy and Daddy are packing up little Tristan and Eloise, removing them from school so they can learn without boundaries. Okay, so those boundaries might be teachers like me who would insist they learn to read and write, but who am I to judge what makes a person literate?

I moved to the UK when I was 23. I’d done an overseas study program and I loved it so I came back to do my MA. That’s how I met my husband. I fell in love with him and London. I still feel it inside when I cross the Thames on a train. I go a little giddy.

Except, I barely ever cross the Thames anymore, or go in to see an exhibit, or shop on Oxford Street. I have a baby now – putting aside the brain-damaged bit – have you ever tried to lug a stroller, with a baby inside, up and down two long flights of stairs? That is the beginning of my journey at my local train station. That’s before I hit Victoria Station, the largest in London, and one that contains zero elevators or escalators down into the Tube.

Every day I wish I was near my family. The other day I said to my husband, “I don’t care where we go. Let’s go to the States, let’s move to Wales, let’s stay in London… but you have to help me make it work. I need to see people, go places.” What is the point of living in London, away from our families and broke, if we aren’t taking advantage of it at all?

(He would say that we both have jobs we love – and what are the chances of that ever happening again?)

May and her cousin Caylee

Contrary to parents that forcefully separate their children from the people and experiences they love, the same ones that give them the comfort, encouragement and joy to succeed, I wish every day that I lived closer to my family. When I read stories about gap year parents, my first impulse is to ask, “Why would they do that? Why would they move away from their families?” before I even consider my predicament.

Maybe it is a question I need to ask more of myself.

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Profoundly disabled: ‘We wouldn’t have her any other way’

There is something arresting in how plainly Rebecca Elliottshe describes her daughter’s brain damage and its unavoidable conclusion in the article Profoundly disabled: ‘We wouldn’t have her any other way’ in The Independent last week.

It was a moving portrayal, especially about how outsiders apply horrible labels and pity to us, when all we feel is love towards our children. And, she loves her daughter. The article is a beautiful expression of that love. But, still, I found the article disturbing.

Like Elliot’s daughter, May is wonderfully happy. Gloriously happy. And, she is loved.

But, I couldn’t agree with the statement, “We wouldn’t have her any other way.” In a heartbeat, I would.

I mourn the child I see in her. The child that can see the animals she thinks sound so silly. The child that can bound around a room, rather than just bounce in my arms. What happened to that child? I am still stunned by her absence when, at times, I forget May is disabled at all, and it comes flooding back to me.

I worry for her. Challenges await her, physical, mental, emotional, and – the worst – administrative. We won’t always be around to sort through the bureaucracy. More importantly, we won’t always be here to cherish her.

I don’t think May is perfect. I don’t love my daughter any less because I don’t. It is very hard to admit such thoughts, since it is drilled into us that, as parents, cherishing our children must mean they are perfect. May isn’t.

Without a thought, without taking a breath, I would literally give of myself to restore her brain.

Elliott has written and illustrated a children’s book Just Because inspired by the relationship between her daughter and son. When I said I found the article disturbing, I did, but I don’t find Elliott herself disturbing. The article unearthed some uncomfortable ideas. Her book sounds amazing and looks beautiful.

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Seizures

My daughter has seizures every day. At one point, they were as frequent as three times every five minutes. That is 864 every day.

Did I just write that? May had over 800 seizures a day?

As I mull over those numbers, a nauseating weight grows in my belly.  Yet,  I’m thinking even worse things; like… those were only the ones we saw. Some seizures don’t manifest themselves physically.

It is a horrible thing to say, but May’s seizures were so frequent, that I’d discuss them as casually as the weather. If people stopped to ask if she was shaking from cold or fear, I’d respond, “Oh, no need to worry, it’s only a seizure.” They all looked at me like I was insane. Most asked if they should call for medical assistance. “No, it’s fine,” I’d say. It’s a wonder Social Services never knocked at my door.

I should add that the doctors don’t think the seizures will damage her brain any further. But, seizures that frequent do interrupt activity and, therefore, could be hurting her long-term development.

Fast forward six months. May is now on her sixth medication trial. And, we think it is working.

It has been a very slow process, made slower by the agonizing time-lapse, sometimes weeks, until a drug starts to take effect. Then, an even longer wait as the drugs are slowly built up in the system in order to see if they really work to remove the seizures entirely.

When we started May on Toparimate, it we saw amazing results, but then May regressed and her seizures returned. They never returned to 3x/5 minutes, but we did sometimes hit 3x/10 minutes.

As the Toparimate seemed to help to some degree, we kept her on that and started her on Sodium Valporate. Another nail-biting three weeks of no change, and then one day, we noticed a marked decrease.

During the time she was seizure free, she made all kinds of progress. And, she was just happier. Who wouldn’t be?

But, if May is tired, ill or teething, the seizures return. So, the past couple weeks we’ve experienced days with a couple of seizures in total, and days of two or three/hour, still a vast improvement.

At some point, we will have to weigh the balance of drugging May more and possibly hurting her development as a result, or her enduring some seizures but less medication. This week, we meet with the Boss, who will advise.

(This is a bit sneaky of me actually, as this appointment was made back when we waited three months to see him last time. I “forgot” to cancel it. Some genius thought it was a good idea to schedule an appointment for a child having 18 seizures/hour, five months later.)

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A Conversation Overheard

Conversation overheard between a decadently dressed Hippie-Mama, in flowing flower skirt and layers of pashminas and a poor waitress that is surely not paid enough for this nonsense:

Hippy-Mama: (jabbing menu with nail) So, I see you only serve organic foods, but my son, Oliver, can’t tolerate cow’s milk, so-o-o-o, in philosophical solidarity, none of us drink any milk, but soy. So-o-o-o, I’ll take a soy milk de-caf latte and my daughter (gestures to identi-kit four-year old suffocating from beneath a mini-pashmina) will have the organic muesli. (flashes a pinched, dismissive smile) But, you will make that with soy, right?

If she’d tagged “sweetie” at the end of that sentence it would have scaled the heights of pretencion and Hippie-Mama would be crowned Queen of Up-Your-Own-Ass.

Some readers will be thinking, okay, perhaps a bit pretentious, but if her son really is allergic to cow’s milk, than it is kinda sweet that the family does this whole “solidarity” thing.

Except, that directly following this conversation, Hippie-Mama latched Oliver to her breast. Oliver was a baby. A very young baby who didn’t drink soy milk.

Ten minutes later, May latched on to a bottle of formula. While May fed, I listened as Hippie-Mama made ratty comments to her daughter. “No, Roxy! Sit still! They don’t do chips here. Well, go ask them if you are so certain!” (For the record: they do chips.)

May slurped away happily and I willed Hippie-Mama to say something to me, anything to me about feeding my child from a bottle, with formula. I was ready. I was ready to fight.

Alas, Hippie-Mama did not notice me at all. Or, didn’t care. And, I was left to stew.

But, I realized it wasn’t Hippie-Mama’s pretentiousness that irked me. It was how little she appreciated that little girl. Choosing soy milk was a way of bonding with herself. Appreciating her daughter was completely lost on her.

In contrast to Hippie-Mama’s exacerbation with her daughter’s choice of diet, every time May swallows we appreciate it. Her ability to suck down a bottle was one of the most triumphant moments of our lives. It meant the doctors allowed May to be discharged from the hospital without the necessity of a tube.

Video of May downing her second ever bottle:

1,000 appreciations May.

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Last Chance to Donate!

May’s first day of school is this week!

My friend Sian ran a 5K race today to raise money for Small Steps School for Parents. If you haven’t done so yet, you can donate here: Sian’s Just Giving Page

May attends this wonderful school, with her parents, to help them learn how to help her better. They teach us new songs, games and other methods of coercion to encourage May to stretch all those tight muscles.

Many of the activities are ones I can incorporate into our daily routine. For example, I lift May’s pelvis during her diaper changes and hold in a stretch. By incorporating stretches into daily routines, I’m not forcing May into long sessions that she hates. The point is to encourage her to use her muscles, not to hate exercise.

Having said that, my favorite activity at Small Steps is the one when we all lay on the floor and the two instructors lift a rainbow parachute over our heads. Very relaxing for us parents. They also make me a cup of tea at the end of each session. It’s the British way. Or, if I’m feeling American, they’ll even make me a cup of joe.

I know I’m supposed to go there to help May, but really, some weeks, there is nothing better than a cup of coffee made by someone else. Bliss.

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This week I’m… playing with toys (on video!)

The delights of on-line video mean that you too can take pleasure in my daughter’s amazing skills! Listen to her repertoire of sounds! Marvel at the extent of her forward reach!

Finally, worry for my sanity!

To please my daughter, we play with these toys – complete with silly songs and jungle sounds – in a cycle last seen in purgatory.

What can I do? May loves them and, for the movement they inspire, I also love them.

Here are some links to the other toys she is enjoying at the moment. All of them are very sensitive to light touches (most toy manufacturers value durability over sensitivity). I list the one in the video first, but she likes all of them and probably the zoo one the most. (Hello… VTech? We love you!)

VTech Baby’s Learning Laptop

VTech Learn & Dance Interactive Zoo

Little Tikes Baby Tap a Tune Piano

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