Mama LewisAND THE AMAZING ADVENTURES OF THE HALF-BRAINED BABY

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Sometimes life with May is no picnic. This week has been a crashing disaster. I’ve been reticent to write about just how awful it has been because I don’t want the other special needs parents who read my blog to think life is a misery. And I don’t want to rehash it in a flood of phone calls from concerned family and friends (who I love, so thank you anyway).

First of all, we have no clue what is wrong with May. Which is what everyone wants to know. We’d like some insight ourselves. Because if she could tell us, we could fix it – or help or something.

That’s the trouble with May. We never know. When she goes into these marathon sessions of pain and fevers and fits, I don’t even know for certain she will pull out again. Instead, I am literally inches from her while she screams every waking moment – now going on five days – and all the while the dishes pile up, cartons of Chinese food litter the kitchen and my schoolbooks sit in front of me never marked. In between worrying over how I will ever complete anything again because May refuses to let me put her down, I wonder if this day is going to be the day that she never comes back to us.

I miss my May-May so much.

Sometimes, she falls asleep and that is bliss. Because while she is asleep, she isn’t in pain. When she is awake we have to contain her heavy frame while she thrusts and heaves under the agony of whatever is punishing her. She chokes and sputters and finally vomits out the one thing that does help her, some liquid pain relief. And then she screams some more, all the while kicking out and thrashing her body. She has only consumed half her seizure medicine, so her seizures are more frequent as well. My body is bruised, my back is in agony and my arms are strained with lines of burst blood vessels.

So, I’m exhausted and terrified. Not a great combination. When my lovely 15-year old bottom set girls asked me if May was better yesterday morning, I said, “No.” And, then one quietly asked me what an adult never would: “Is she getting worse?” And, I found myself choking back the words, “Yes.” I shuffled out of my classroom before I broke down in front of them.

Is she getting worse? We won’t know until she gets better. If it is her hips – dislocated 50% let’s not forget – causing her pain, then hopefully her surgery in a few weeks will fix that. But, we aren’t certain that’s it. It could be that. It could be a virus. Or, a tummy bug. Or, any number of things.

It is agony for us as well.

And that, my friends and family, is why you haven’t heard from me in awhile.

PHOTO: This was taken accidentally on a trip to a petting farm last weekend. I don’t go out of my way to take photographs of my child in pain, but as long as I had it, I thought it might go some way to explain how May has felt this week. (Don’t reuse it. Copyright: Stacie Lewis, 2013)

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Collin Brewer said children like May should be "put down"

Re-elected. That’s what happens to politicians in Cornwall who say disabled children should be killed off. (Sorry, Cornwall but if you live there I imagine you are even more enraged than I am.)

Collin Brewer, Independent councillor for Cornwall, made the comments to Disability Cornwall at an information event at County Hall in Truro in 2011. As reported by www.thisiscornwall.co.uk, “When told how the group helps parents of children with special educational needs, Mr Brewer responded by saying: ‘Disabled children cost the council too much money and should be put down.’”

He admitted it and resigned, only to run in the next elections.

Again – how bad does it need to be before someone is not re-elected? Maybe actual murder?

As Frances Ryan points out in the New Statesman:

Meanwhile, voters in Chichester decided not to re-elect John Cherry. The now ex-Conservative councillor had come under fire for responding to plans for a new academy in the area by warning that the pupils would be “97% black or Asian” and as such would want to “escape into the forest” in “a sexual volcano.” He was promptly kicked out by his Party and then by the people.

But then, Cherry’s racist comments hit national headlines everywhere. Brewer’s didn’t. If the media refer to disabled people at all, they refer to then as scroungers rather than people, and disabled children as a burden rather than as children. Even researching this post, I found it hard to locate much news on his re-election.

If the Coalition government is willing to sacrifice the lives of disabled people to push forward their own sick ideologies, than it is no wonder some people in Cornwall would feel comfortable re-electing such a repugnant person into office. This is the state of national politics in regards to disability issues. It could happen anywhere.

Or, we could stop it. Make an official complain against Collin Brewer on cornwall.gov.uk. (To assist you on the form, his council is Wadebridge East)

Thank you to Hayley Goleniowska at Down Sides Up for shining a light on this and the method to complain.

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You wanna fight me?

After a collective 24 hours in therapies, medical appointments and general ‘Team May’ meetings this week, I have had my share of so-called experts. Because I don’t swear on my blog – and a big hello to my students reading this right now – I’ve decided to imagine a world where so-called experts didn’t make me want to take a sharp implement to their face.

In this world, so-called experts say things like:

1. I won’t tell you again that you can’t live in your own home because of May. Until I find you the perfect home, I will not frighten you about this monumental issue of having a roof over your disabled child’s head.

2. It’s really none of my business what your daughter is wearing in this weather.

3. We will mange for one day without that exceptionally minor cushion for May’s seat. No need for three people to remind you of the urgency of that really minor cushion.

4. I saw there was no formula in May’s bag. So, we just gave her milk/juice/water rather than interrupt you at work.

5. I’d really like to hear May’s father’s opinion on this.

6. May looks so comfortable asleep. Let’s just leave her like that to rest.

7. We wiped May down when we saw she had vomit on her because we would be horrified to find any child sitting in their own sick on a special needs bus.

Anyone want to add one?

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In five weeks time, my four-year old girl will undergo the most complicated surgery anyone I know has ever had. Her skin will be punctured and sliced. Her hip bones will be shaved and filed. Her hip sockets will be carved out. Her tendons will be cut and resewn.

Gruesome? Too much information?

This is only the start of many invasive procedures. After the surgery, as May grows she will need readjusting. More knives, though not as extensive as this original one.

This hip surgery is an investment in her future; a promise, by doctors I barely know, to alleviate a future of excruciating pain. Her hip bones will no longer be out of their sockets by 40 and 50%. They will be secure. This is their promise.

It is necessary. I know that. But, I can’t explain this to May, because she doesn’t understand words. I can’t draw her a picture, because she can’t see. I can’t prepare her in any way, not a single way.

I can wrap my arms around her and tell her she will be okay. But, I’m not sure I believe it myself. What do you do as a parent when you are more frightened than your child is? A brave face I suppose. I’m sick of acting brave. Completely sick of it. I feel like an impostor.

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What? May is four???

People have been asking me if I feel old. Which is nice. Thank you to all those people.

We celebrated at Kew this weekend and tonight with cupcakes. Homemade by me, which is either a generous gift on my behalf, or a punishment – depending on your opinion of my cooking. (I’m on my second cupcake now, so I know where I stand.)

So without further ado, in keeping with previous birthday posts, let the celebrations begin!

May, when you were born, here is what the doctors definitely knew you would be able to do:

- pee

- breathe

Now at FOUR years old you can:

- Walk! (In her walker. The best moment of the year! Watch it here.)

- Roll from your tummy on to your back almost every time you are placed there

- Recognize your brother’s voice and turn excitedly to him when he enters the room

- “Chat”‘ to your brother in the morning

- Act as an alarm clock each morning in a team effort with Ieuan (erm, yes thanks for that)

- Eat scrambled egg and avocado, two of the most elusive of all foods and forever suggested by “so-called experts” despite May being unable to chew or swallow such textures. That is until now…

- Sing along with us – which is a basic form of communication

And video proof taken two days ago (apologies for that lady’s awful singing voice, I have no idea who she is)

Want to see how May has progressed? Read her previous birthday posts:

Happy Birthday May! You are two!

May you are 1.5 years old!

Happy Birthday May! You are 1!