Mama LewisAND THE AMAZING ADVENTURES OF THE HALF-BRAINED BABY

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Last autumn, my husband and I sat down with a lawyer to instruct him to open an investigation into May’s birth. The only cases I’ve heard of going through, and I do know personally of a couple, are ones where the hospital admitted fault from the very day it happened. The moment of wrongdoing was that obvious.

We can think all we want that the birth did go wrong; unless the lawyer can prove it, forget it. In our household, even with our beliefs that things did go wrong, an investigation will probably not uncover that one terrible moment. As if there is one moment, I believe there are several. But, cases like May’s are notoriously difficult to prove.

So, why do it?

I want a bit of peace. I want it over. I want to know something, anything about those days that I don’t know already that will tell me why my baby was hurt so badly. Not having an answer, or even an inkling, is hard. It is really hard. Indescribable.

Yesterday, I received our first letter from the lawyer about the investigations so far. How long did I stare at that thin envelope? How long did I stand in my hallway with Ieuan crying for me upstairs, as he waited for me to return?

Inside, the lawyer sent a copy of his letter to the hospital explaining that the records they sent him were incomplete. Where was the report regarding their investigations? Or, the results of that investigation? In that moment, on the stairs, I realized I’d never seen them either. There were other missing items as well; incomplete records from my personal hospital records and May’s.

But, what does this mean? Does it mean they are lying or incompetent? Evasive or just plain lazy? Perhaps it is nothing, an accident or oversight.

We will know more once those blanks are filled in. Months will pass before they are. Full investigations into May’s birth will take a long time. Maybe a year, or more. All the while: limbo.

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Back in December, I contacted Social Services about getting my daughter’s chair fixed. The chair supports her fully so that she can use her arms and head without also concentrating on keeping her body erect. She eats in it. She plays in it. It is a very important piece of kit.

It’s mid-May now. Six months later. Is the chair fixed? Nope.

Of course you may recall this phone conversation with a Social Services Occupational Therapist (SSOT) or our subsequent meeting. What fun!

To his credit, the SSOT did get the ball rolling again after his phone call and meeting with me. A woman from Social Services and I played phone tag for a few weeks, until this Monday when I finally got a hold of her.

Either the chair's bracket has completely broken off its base - or it just needs a wash, as the SSOT told me over the phone. (Click to enlarge)

She answered the phone giggling at a joke a colleague had just told her. But, when I asked about arranging for an engineer to come look at the chair, her voice sharpened immediately. “You need to make an appointment with the SSOT,” she said.

“I have.”

“Well, then why are you calling me?” she asked impatiently.

“I need an engineer to look at the chair,” I repeated.

“And, what makes you think that the SSOT can’t fix it?”

“Because he’s not an engineer?”

“Look,” she said, never an illuminating word to hear, “I’ve arranged for the SSOT to call you. I’ve done my job. I don’t know why you are still calling me. And, it’s five o’clock, so I have to go. Get in touch with him if you have a problem.”

I tried phoning her back, but she’d gone for the day in the 30 seconds it took me to redial. And, of course, May also finishes work at five. She doesn’t need to eat or sit after that, so it could wait until the next day. Hell, it could wait another six months as far as I could tell.

The following day, at 9 AM, I phoned her again. A heavy sigh greeted me. “I’ve emailed my manager,” she said. “I’ve asked her what I’m meant to do with you and she hasn’t gotten back to me yet. So, I don’t know what to tell you.”

“If you want the SSOT to come to my house, fine, ” I said, willing to try anything, “but, send an engineer with him. The SSOT will not be able to fix the chair.”

“You don’t know that. And as I can’t help you with anything else, I suggest you make a complaint to my manager.”

Being the most bizarre response to a question about an engineer visiting I’d ever heard, I took her up on her suggestion and phoned her manager. “As your employee suggested I make a complaint, I want to know how I go about making it your supervisors, because if she is that willing for me to complain as the next step, I would imagine the repercussions will be minimal. Besides, there is a lot more going wrong in your department than just my dealings with her.”

“You have to ask yourself,” I continued, “how long should it reasonably take for the chair of a severely disabled child to be fixed? Because I’ve been waiting six months. That is just appalling.”

Twenty minutes later, the SSOT phoned me to arrange a dual visit between him and his associate who is in-charge of all their back stock. They saw the chair that afternoon.

“See here,” they pointed out to me on the arm rests, “the bracket on both sides is broken. The whole arm needs replacing.”

News to me.

Rather than put the chair in for service, which will take at a minimum six-weeks, they are checking their stocks for a temporary chair to use until May’s new one arrives. I’ll still write that complaint about all the “help” I’ve been getting.

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After a meeting at Mays’s school about special needs transportation, where I sat with a squirmy Baby Ieuan on my lap and discussed every remote possibility whereby May might have a seizure on route and need an ambulance, I was released back into May’s school, and with great relief found her working with her new visual impairment therapist.

Great relief because May’s new VI therapist is awesome. But before I reveal why, let’s remind ourselves of VI therapy so far. Do you remember these hits from yesteryear?

1. A waste of good trees: 100-doubled sided pages of advice for parents of VI children. That was only Volume I. That’s what parents like me need, a little light reading for all our spare time and no guidance on what section to start with. (Incidentally, I now know one of the writers of this tome and I can’t imagine she had any intention of it being passed on to parents in full without any dissemination.)

2. Dealing with doctors: Who can forget the first time a doctor inspired me with the words, “There’s nothing you can do for her.”

3. Conversation with May’s first and quickly dismissed VI therapist:

Me: “I’ll have the hospital send you the results of the VEP exam.”

Her: “What’s that? How will I read the results?”

As a parent of a special needs kid, you never EVER want to know more than the therapist. (If you don’t know what a VEP is, don’t worry. It’s not your profession! VEP stands for Visual Evoked Potential. It’s brain scan that checks whether signals from the eye are being received by the brain.)

So – floods of information I can’t use, and why would I anyway since there is no hope and my only guiding force is an absolute moron. These were only some the highlights of over a year of begging – literally – professionals of all kinds to point me in the direction of some real help.

Fast forward and, especially over the last six months, May has made some – be they slight – improvements to her vision. Today, I think I may have met one of the reasons why: her new VI therapist at her school. May loves her. And, as we know, May’s barometer of bullshit is sharp.

May with a sensory room light tube circa 2010

I had a few minutes before I needed to take May to an appointment, so she checked if the school’s sensory room was free and in we went. She takes May there a couple times a week (yes – not every few weeks or so!) to use their various colored lights in a darkened, quiet space.

She knows May’s visual impairment is severe. She has devised a system where she times how long it takes May to look towards a light. She watches her carefully for the slightest recognition – and she notes the same kind of responses that I see, ones that I thought would be unrecognizable outside of my own desperate imagination. She sees them too!

Above all I admire her patience. She said that whenever she thinks May won’t respond, she waits just that little bit longer and then May does. And, she’s noticed that May’s response time shortens as the session progresses. She is also working with May’s OT to see how vestibular movement (AKA bouncing) followed by the visual cue improves May’s response time.

This is the kind of woman I want on Team May.

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May's amazing daddy with Baby Ieuan

I leave tomorrow for New York City. My first vacation since before May’s birth. I am having separation anxiety already. I don’t even leave until tomorrow!

I’ll be gone four nights. FOUR NIGHTS. A lot can go wrong in four nights.

Let’s start with teething. It could happen. And teething is a short hop and skip to the misery that is zero sleep for a parent. I say “a” parent, because my husband will be on his own. He is completely capable. He is an amazing dad and his kids adore him.

So, why is it that I have restrain myself from saying any of the following:

1. You know that May can have a dessert AND a dinner, right?

2. Remember to put her splints on and her glasses and her special shoes, especially when she is bouncing.

3. Try out the standing frame – it will make your life easier.

4. Call a friend if you need some help. They will help.

5. Are you sure you don’t want me to do a last minute grocery shop? (I did it anyway – today. In this, I could not restrain myself.)

It’s occasions like these when I realize how much I have taken on. Relinquishing responsibility is as hard as bearing it all yourself.

Having said that – I don’t bear it all myself. I have a husband and two care workers and a nursery and a special school and a nana in Wales and…

I just hope that when I get on that plane, I let it all go. Because I need a break. I deserve it. A bit of a reality check about life outside May and Ieuan will be good before I return to my job at the end of this month. And – WHOA – do not get me started on that.

Do you get separation anxiety when you leave your kiddies?