Trials and Appreciations

Here are some empty concepts I will never use:

• May’s brain damage helped ________ so it was “worth it”
  
• It happened for a purpose
  
• I am a better person because of May’s brain damage

In a world right and proper, May would not be brain-damaged. There are many moments, every day when I look at May and all she has accomplished – which is both incredible and amazing – and I see past it to what she could have been.

That is horrible. It is. It is a fact more terrible and frightening and true than any of the empty phrases above. Without her brain damage, May might have done all kinds of things she will not now. I’m not even talking about marriage and a job and college, like most of us would try to do, I’m talking about things we totally take for granted: cook, read a magazine, style her hair.

I also see May for May. Her brain damage is a part of her and so she is not “that girl” she is May and she is beautiful and wonderful, despite the damage.

Here are some other truths that are far from empty:

• Good has come out of May’s brain damage.
  May’s nursery manager and her husband are adopting. She told me a few weeks back that when they asked her what kind of child they wanted, they asked for a Downs or CP baby. Before May, she said, she didn’t think she could care for a baby like May. Now, because of May, another child will get a chance at a decent life that they would not have had. That is amazing.
• My family and I are closer because of May’s brain damage.
  Maybe it is because tragedy brings people together and helps them put aside baggage. Or, perhaps it is because we all love May so much, and that is a common denominator. Or, maybe my family just have a lot of love to give. When they saw what was happening with May they, as my Dad would say, stepped up to the plate.

I’ve learned a lot from May, not all of it has been easy. But, not all of it has been bad either.

The proof’s in the pudding. A very happy May showing me how to party at a recent wedding:

And, here in action!

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Welcome to America + peanut butter baby recipe

Greetings from the land of the free and the home of the brave.

May and I flew across the pond yesterday. It wasn’t without its turbulence. Nothing says “Welcome to America” more than a Delta air steward’s fury after I dared to breach business class to ask for some assistance with my disabled daughter.

Me: A woman down there told me to come through to ask for some help?

Him: (his pointy rat-like facial features squeeze closer) Who exactly told you that?

Me: The air stewardess. She told me to come through.

Him: And, why exactly would she do that?

Me: (sheepishly) I’m not lying. She told me to come through.

Him: (growing ever more surly) I’m just trying to establish why you are here.

Fast forward this conversation in rotation, said steward’s face growing ever more squeezed and me teary-eyed in the No-Mans Land between business and economy class saying something like, “A little bit of kindness. It doesn’t take much, a little bit of kindness.”

Then,  7 1/2 hours of me and rat-faced steward avoiding each other on surprisingly small 747 and I am home! And, in the arms of my loving family! Hooray – let the kindness begin!

An earlier rendition of this blog was much longer but, on re-reading it, I didn’t feel I could convey the awful awkwardness of it all. Like, when I said, “I’ve been lugging my disabled child around your plane looking for help” and in response a supervisor said, “I understand, I also have children at home.” So, I kept it short and sweet – the total opposite of my journey.

*       *       *

This may seem ridiculously obvious for most kitchen affectionados. BUT I thought for those who read this blog looking for some suggestions (totally non-expertise stuff here) because you are in a similar situation – I use the following recipe to fatten up May. She uses it as hair gel.

My amazing peanut butter baby food recipe* is as follows:

• 1/2 banana and/or apricot jam
• 1 digestive biscuit or graham cracker or baby rusk
• 1 big lob of smooth peanut butter
• a bit of milk or formula to make it all not so sticky

May LOVES this. It’s the only thing she eats heartily with any consistency. Speaking of consistency, this is also the kind of meal you can easily smooth into a puree or leave with nice chunks in to chomp on.

*CONTAINS NUTS. (Warnings like this only exist in America.)

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Freedom!

Woohoo! School’s over! Bye-bye kiddies! Bye-bye classroom!

Even better, bye-bye medical appointments for May!

In a few days, the newest American in the family, May, will return to the land of the free with her mother, joined two weeks later by her father. Because of this, we will not see the inside of a hospital, doctor’s office or examination room or any kind until September. American Freedom!

May has some kind of therapy or medical appointment at least twice a week. May’s condition comes with all kinds of barriers, but I probably speak little of sheer amount of wasted hours every week in appointments. I say wasted, not because the appointments are pointless (though on more than one occasion they weren’t only pointless but soul-destroying) but because May and I could use time: to play, read or swim. Or, cuddle! What about just Mama and May cuddling!

Instead, we are in London traffic, winding past the same crowded High Streets, lumbering past the same 1960s office blocks and lugging May’s buggy across busy roads and up into unair-conditioned corridors. I probably don’t talk about it a lot because it is excruciatingly dull.

May had her last appointment yesterday with the Boss. He prescribed a new seizure medication regime. May will slowly be weaned off Phenobarbital, a barbiturate that she has been on since birth. We will wean her off it very slowly over the next three months, so that gives you an idea of how dependent her body has become on it. She started on Sodium Valporate tonight. (Side note: Thank you pharmaceutical companies that make medicines taste sweet for babies! Got it down her no problem!)

So, not all appointments are pointless. That one was far from, and due to staffing issues we waited three months for it. Yes. Two-months if you count the last appointment where May didn’t get to see him, but saw another doctor, and questions were left unanswered. Unfortunately, this is a situation we fear will be on the increase under this new, budget-slashing government.

Who wants to think about any of this? Not me! It makes me want to scream.

Goodbye and good riddance! One month of freedom awaits!

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How the Amazing Half-Brained Baby changed everything…

If you are not the parent of a brain-damaged child, none of the following will make sense. You will glance down the list, jab your partner in the side and say, with possible exasperation, “Sure, but most of these things happen to all parents.”

Wrong.

Even if they happen to all parents, they don’t ALL happen.

1. Your income plummets. (I teach 3 days/week from September because I miss at least one day/week to attend appointments. A 20% drop in pay.)

2. Your arms hurt from supporting her. A lot. And, the baby just keeps getting heavier…

3. Your arms look super-toned. Bonus!

4. You never say “No” to your child.

5. You buy the fattiest baby food containing the most sugar. Then, you add butter to it.

6. You might never have another child and it’s not because you can’t physically.

7. You cuddle more because your child can’t sit unsupported. Not so bad.

8. You allow your husband anything, because he gives you everything. (That one might just be me, but highly advised.)

9. When your daughter lifts her hand to her mouth at 1-year-old to chomp on some peanut butter, is the most miraculous, wonderful thing you have ever seen. (Cute baby alert! See video and gallery below!)

10. Don’t pity me people. Everything else is the same as other parents. Love love love.

I have 106 of these photos if anyone is interested *smile*

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Severe

May is “severely visually impaired”. She has “severe brain damage”. Referring to May using medical terminology is always depressing, but more so when it is a medical term that is also used widely.

“Severe” is as term I come across a lot in May’s medical reports. It is a term used casually and freely. It has the opposite effect on me. Like when I accidentally picked up what I thought was a medical appointment sheet off the floor of the car this week, and it turned out to be her visual impairment report.

The medical definition is “a disease that is so severe that it dominates all other activities”.

Is May’s brain damage so severe that it dominates all other activities? I can’t say that it does. It does overpower her at times, like when she has a seizure in the middle of a rigorous bounce. But, she pauses, she shakes a bit and then she lights up and the bouncing continues.

Is this the definition of severe?

I’m more impressed by May’s ability to dominate her brain damage, than it dominate her.

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This week I’m… eating naked.

That’s right. Totally starkers.

Last week, teething motivated May to new heights, literally lifting her hands to her mouth.

The result: this week, her hands are much more involved in her meals – as are her eyes, hair, ears and her nose. I never knew you could shove so much pureed squash up one little nose.

So, every night for the past week, during her evening meal, I strip my baby down and she eats naked! A rigorous bath follows.

I don’t know what else to do. May is stuffing her fists in her mouth during meals. If I want her to learn to feed herself, I should encourage her.

Food Triumphs must be the theme of the week. I took May into the Developmental Vision Clinic at Great Ormond Street today. Despite being told, several times over, that this clinic would not shed any more light on May’s sight than the last eye clinic (where an esteemed doctor said there was nothing I could do to help May), it did help. Enormously.

Okay, so they didn’t make a blind baby see. Shock.

But, they did reassure me that I was doing all the right things – which is far different from telling me there is nothing I can do.

A pediatrician and developmental psychologist did a thorough investigation of May’s vision and development. Then, I sat for a half-hour while they conferred. After, they delivered their report which contained all kinds of helpful advice.

Finally, I learned something about May’s vision and feeding I didn’t know before. During the initial investigation, the doctor asked, “Can May see her spoon when you feed her?”

“I don’t think so,” I said, but I happened to be feeding her at the time, so I leaned in with the spoon. When it was an inch or so from her lips, May opened her mouth and tried to chomp down. Her mouth and nose was already covered with food so I know it wasn’t the smell.

How glorious!

For further proof that May is not only deliciously adorable, but also learning to see, note Exhibit A below.

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Response from Lambeth

Lambeth responded this week to my complaints about nursery places and support, which I made via Tessa Jowell, MP, and Cllr Peter Robbins. The letter is two sides and single-spaced, so I have abridged it quite liberally as follows:

Allocation of funding for childcare:

“You are right that initially this was only allocated… where a good or outstanding Ofsted rating had been awarded… Increasingly the government is enabling local authorities to use their own judgments about settings… although this will provide a higher number of settings for parents to choose from it will still limit the choice as we need to ensure that these vulnerable children are in a setting where they receive the highest quality care… I do appreciate that because you live at the edge of the borough this limits your choice further but unfortunately we are not in a position to fund places in other boroughs at present.”

In regards to May’s one-on-one support:

“I am aware that some issues arose about May’s needs for one to one support and equipment at the nursery she attends… the keyworker for May is meeting with you next week to develop a family service plan for May related to this needs assessment.” She continued along these lines for several more sentences, but said nothing about Lambeth originally giving it their approval or how, abruptly, the funds disappeared.

Finally, in regards to the nursery that refused to prioritise May:

“It would appear from our discussions with the Children’s Centre Manager that there has been a misunderstanding… She was seeking more information about May’s needs and did not mean to imply that a Statement of Special Education Needs was required for May to be placed on the waiting list. At the time of applying there were a number of children on the waiting list and [she] understood that May’s needs were being met through her current provision. [They] will continue to consider May for a place as a priority if her situation changes.”

Outside of numerous general apologises and vague assurances that issues are being followed up, there is nothing to suggest that they are taking any action to any of the above.

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This week I’m… teething.

Pain is a great motivator. Our little girl is teething and it is misery. The poor thing wakes in the middle of the night screaming in pain.

Pre-baby, we thought teething was a bit of discomfort. Now, we see it for what it really is: baby torture. Swollen cheeks. Diarrhea. Vomit. Not eating. Even a bit of a fever one day.

May is at a disadvantage to other teething babies. Where they would pick up the nearest object and shove it into their mouths for a satisfying chew, May can not.

May tries to relieve her pain by chomping on her hand, but it is a challenge. The most difficult thing for her to do is use her arm at the shoulder. She can pull her forearm in towards her mouth, but that shoulder is key for lifting the arm that extra inch.

But, like I said, pain is a great motivator and May delights us jamming her fist into her mouth while making a satisfying “gah-gah-gah” sound as she gnaws away.

It’s a bittersweet delight, of course, since she is not doing it to prove her dexterity. But, while I’m on the subject, she also makes this adorable “Ow!” sound when she is in pain. Like an actual word!

I’m a terrible mother.

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