Posts made in December, 2011

We interrupt your normal service to bring you…

Posted on Dec 28, 2011 | 3 comments

We interrupt your normal service to bring you…

…Ieuan! Unfortunately, May has spent the last three days (and nights, let’s not forget the nights) teething. It is so bad that she is refusing almost all liquids. We have gotten 1 1/2 seizure doses down her of the last four. And, tonight, I noticed part of her gum was bleeding. So, no drinking, no eating, lots of crying (both of us) and no Christmas. We have yet to open our gifts. For this reason, I have zero photos of May in what was meant to be her Christmas outfit. I can assure you it is adorable, if unworn. She did manage her Christmas pajamas, but we have no photos of those. Ieuan, however, did get in the spirit of things. Thanks to his Grandma Bar, who we are visiting in California right now, Ieuan was recruited by Santa to out-cute the world. She bought him both the outfit and the antlers. (I know. You thought Ieuan grew them himself!) Ieuan is officially the only baby to remain smiling when his parents dress him in a ridiculous reindeer outfit. Surely, these outfits are tears and temper tantrums waiting to happen. Clearly, Ieuan didn’t get that memo. Best wishes and hope you all had a wonderful holiday!...

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I think I’m a bit of a hypocrite

Posted on Dec 24, 2011 | 7 comments

I think I’m a bit of a hypocrite

Ever since I started writing on Mama Lewis, I’ve begged people to treat me no different because I am the parent of a disabled child. It hasn’t worked. I didn’t expect it would, but I tried anyway. There are still people who write in to me on a regular basis who I’m sure do it because they feel it is a public service. And, of course, there are very few people who write in to tell me they are insulted or horrified by anything I say. Either everything I write, all my opinions – even all my photos – are wonderful, or people feel too uncomfortable to tell me that what they really think. My family doesn’t have the same reserve, so I am well aware that I can be offensive and disagreeable. And, frankly that’s how I like it. This blog is not a fishing expedition. I wish more people would tell me what they think. I find criticism far more useful, than flowery pity. So, here’s the hypocrite bit. The other week I wrote a post called Santa’s recruiting cute toddlers on BabyCenter where I showcased a family holiday video from The Sphors are Multiplying family blog. To be honest, though I didn’t say so in the post, I found it nauseating. However, I also thought it would appeal to BabyCenter readers. The post didn’t do too well. I blame myself and the manner I showcased it, not the video itself. Usually, I read up in detail on anything I post. If it is a news story, I read the research that underpins it. Or, if it is the personal story of a family, I read their web site first. Like in this case, expect in this case I didn’t. If you haven’t watched the video yet, this is the point where you should before you read any further. If I had, I would have read that the toddler in the video is this family’s second child. Their first daughter, Maddie, was born prematurely and then, a year and a half later, died from a severe respiratory infection. When I read that, I felt terrible. I realized that, viewed in that light, their video no longer appeared sacchrine to me. I can understand the desire to scream out to the masses that a healthy, happy child is a cause to celebrate every day. I can understand every impulse to do so in the loudest and silliest of manners. I can understand because that is exactly how I feel about Ieuan. Even though I didn’t write a negative piece, I didn’t write it with any consideration to the context and I felt awful. I wondered if I should apologize, rewrite it – I spent a couple of days wondering what to do. Me. The same person that wants her readers to treat her no differently. I decided the best thing was to change nothing. On my blog, I ask people to take me at my word and understand that I am more than how May’s disabilities have shaped me. Either I accept that some people will not appreciate my work – whether it is offensive, or saccharine – or I cater to people’s desire to pity me. I can’t help but see the video differently when I know the context. I certainly appreciate it more. But, I can’t say I love it. I still can’t get that song out of my head. What about you? Did you feel differently about the video after you read the back...

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NOW That’s What I Call Music! 2 1/2 (VIDEO)

Posted on Dec 18, 2011 | 3 comments

NOW That’s What I Call Music! 2 1/2 (VIDEO)

Throw away your mass market trash, people. May has compiled her own list of essential tunes. Top hits from the past year. Listen and learn: 1. Happy Birthday – This track is a classic! I bet you thought it was just for birthdays? Nah-uh. 2. ABCs – Another classic that’s also not just for birthdays. This tune stopped May’s seizures when seizures were king. 3. David Bowie – too many to mention. Needs a whole post. 4. Andrea Bocelli – I don’t get this one, but May’s Nana swears it’s true. 5. The telephone ringing – technically not a song And now, May’s Daddy finishes this post with actual songs, real songs, that May loves: 6. Brian Eno ‘Julia With‘ – May likes to relax in the bath to this slice of proto-ambient music. And, she likes the plinky piano and the funny backwards running sounds too. 7. The Bug ft. Ricky Rankin ‘Murder We‘ – The deep dubby reverb of this angry meditation on urban violence in London thrills May in a way that is echoed by the hard-hitting message of Ricky Rankin: “Remember, war is not the answer/Only love can conquer hate.” She also loves the bell chimes and squeaks. 8. Frankie Goes to Hollywood ‘Welcome to the Pleasure Dome‘ – Trevor Horn may have been the uncredited sixth member of FGTH, but May has always appreciated the opening of this artsy 13-minute masterpiece, with its cries of tropical birds and rainforest sounds to a jungle beat. “The animals are winding me up!” indeed, Holly Johnson! Finally… some really good tunes to close out NOW That’s What I Call Music! 2 1/2 – but using a video from 1 1/2 (Same day as the photo taken above… that’s my nephew Connor peeking in from the side. Hi...

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This week I’m… bopping May on the head

Posted on Dec 14, 2011 | 4 comments

This week I’m… bopping May on the head

Like Little Bunny Foo-Foo, May enjoys a bop on the head. Except, she wants her head bopped, not a field mouse. Here’s a little video of us, at home, doing physio. NEWSFLASH: Physio can be fun. May loves going to her private physio and also the work she has us do at home. She encourages us to incorporate the work into play, and seeing May’s smile here – who would deny that this is the way to go? I’m sure the physio would describe this exercise in a far more technical and professional way, but the result of bopping May on the head is that she feels the reverberations all down her body. May craves body and spacial awareness and this activity does that. I really think it is helping her head control. Loving physio is an unexpected pleasure. May isn’t keen on stretches normally, but this physiotherapist gets her to do all kinds of challenging things and May LOVES it. Is there any better feeling, than doing something you know will help your child immensely and also watching them enjoy doing it? For me, nothing beats that. May attends Kiki’s Children’s Clinic in South Clapham, London. May has attended the clinic for a couple of months, so I feel confident in recommending them. I do not normally recommend paying for services that the NHS should provide. Frankly, I think a lot of the companies that charge for their services are a racket, even if they do some good work along the way. Nothing for special needs kiddies is cheap. We are talking thousands of pounds that desperate parents are asked to shell out. There is a lot of greed in the world; when greedy people meet desperate parents they convince each other that those thousands are spent on the “right” thing – the progress of a very limited child. But, I mean it doesn’t hurt to try, right? What a lie. It does hurt if it doesn’t help and a family goes into debt over it. It does hurt if it doesn’t help and a family wastes valuable time on it. It does hurt. It is devastating to those families and those children. It doesn’t have to be that way. May’s smile and progress is evidence of...

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5 things that break this mama down

Posted on Dec 9, 2011 | 2 comments

5 things that break this mama down

With a child like May, I like to stay positive. Relentless positivity. Which is exactly as it sounds – forced. Forcing myself to act positive eventually turns into real positivity and happiness, by virtue of engaging with the reality of May. And, by that, I don’t mean the reality of her disabilities – I mean facing up to the reality of her being a deliciously warm, giggly and affectionate little girl. It is a method that has served me well. But, even I have my breaking points and, this week, I had several. Nothing about her day-to-day care ever does it. I think that’s what people expect to wear me down, but what actually wears me down is vastly different. Here are five things: 1. More than three appointments for May a week. That’s about all the “May is severely disabled” talk I can handle for one week. 2. Hospital appointments. 3. May unwell. Even a cold. 4. Broken sleep. 5. Fighting faceless administration. This week I had five appointments, including one to a children’s hospital. I also fought and won United Airlines’ administrative decision to charge us more to sit in seats that could accommodate May.* To give you a flavor of why I can only handle three appointments each week, at one point during a meeting this week, someone who has nothing to do with May’s physical development, said to a group of her therapists, “Should we really be encouraging May to bounce? I thought we had all agreed that this wasn’t in her best interest.” It really troubles me that so many people can not see May’s love of bouncing as beneficial in any way. Yes, she doesn’t do with perfect alignment. But, what of the physical exercise that she gets from no other source? Or, cognitively how she giggles at the game of it, the anticipation of it. Or, that she is just happy. Why is May’s happiness an afterthought? On its own, not that big a deal. In combination with the hospital appointment, flight issue and overstretching my maximum amount of appointments by two, this moment was astoundingly difficult. Praise be May for her good health and solid sleeping, because if I had to deal with that as well, I would have completely cracked up. Are you surprised by this list? Would you have expected something else on it? *If you want to know how I won: I used Twitter. I wrote on United’s twitter page, “@united why are you not accommodating the needs of a severely disabled child on your flight?” with a link to the post I wrote about it. Five minutes later, our reservation was being reevaluated. Today, they found us bulkhead on a different flight. Winning a fight like this is not satisfying. It is stressful justifying your daughter’s need for more space because you are concerned she will have a seizure mid-flight and you will not be able to reach...

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