Posts made in July, 2010

Trials and Appreciations

Posted on Jul 31, 2010 | 1 comment

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

Posted on Jul 29, 2010 | 1 comment

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...

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Posted on Jul 23, 2010 | 2 comments

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...

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How the Amazing Half-Brained Baby changed everything…

Posted on Jul 18, 2010 | 10 comments

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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Posted on Jul 17, 2010 | 1 comment

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...

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