Ieuan

Time to share some sunshine…

Posted on Jul 23, 2015 | 6 comments

Time to share some sunshine…

Four months ago, I could barely walk across my kitchen. One month ago, I marched, along with thousands of others, from the Bank of England to Parliament Square. A march of protest against austerity, but for me another protest too: against ill health with the physical proof that I could walk the length of the march. So, did I make it?

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I have some major news to share

Posted on Jun 22, 2015 | 16 comments

I have some major news to share

For the two months, I’ve kept quiet about something. A few of my friends know, and certainly my family does, but the story still seems so outlandish to me that I’ve barely said anything to anyone about it. I’m in remission. Actually, I’m not just in remission. I’ve been in remission before. This is different. To read more click here.  

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Was this year a Halloween fail?

Posted on Nov 1, 2014 | 2 comments

Was this year a Halloween fail?

Every year I dress May up and get her ready to go trick or treating and every year she doesn’t come along. In 2012, it was just the cold and the dark that did it. In 2013, well… May doesn’t understand why anyone would want to go out after dark when they could be cuddling with their daddy on the sofa. This year it was her hip. She needs follow up hip surgery to adjust the work they did last year around her growing body. For the last couple of months, she’s barely been able to stretch out her right leg. I’m chasing it up – but I haven’t received a date for her surgery yet. I dressed her up as a witch and even made a special broomstick to go on her wheelchair. But, she didn’t make it past our front path. Still, she was one adorable witch (inspired by the book Room on the Broom – check it out! May loves it.) And, let’s not forget, it really wasn’t really a Halloween fail. May’s mama was home and available to celebrate. We painted a pumpkin, carved another and decorated our front garden to look like a graveyard. I was well enough to greet goblins and ghouls with treats. And May’s brother collected a whole lotta loot on her behalf. (Which I ate half of after they went to bed. Shhhhh – don’t tell!) Here are some photos: I’ve written more about creating wheelchair costumes over at the Firefly Garden, a new web site for special needs families that just launched...

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Will this product revolutionize seating for disabled kids?

Posted on Feb 3, 2014 | 5 comments

Will this product revolutionize seating for disabled kids?

When I was a toddler, I sat in a red rocking chair and read books. I would drink in each page as if I was digesting War and Peace. Page one: picture of a drum. Page two: a ball. Later, my son sat in the same chair, reading the same book. He didn’t just sit on it, he used it to propel himself up to stand and then to walk. None of those options were ever in the cards for May. She can’t read or stand or – until now – sit using that beloved red rocking chair. A couple of months ago, the Leckey company sent me their new Firefly GoTo seat to test out. Leckey is the same company that had my daughter walking within 30 seconds of using their KidWalk walker. The GoTo seat is essentially a harness attached to a cushioned board- a very simple design that should allow a child like May to sit independently in situations they normally could not. A chair at a restaurant. A seat on an airplane. At first we had no success. At the grocery store, once installed, May couldn’t sit comfortably in the toddler seat attached to the shopping trolley. After all, she is almost four and a half; she was too big and the Firefly GoTo seat took up a bit of room itself. In our normal chairs at home, the backs were too upright for her to hold her head up comfortably once harnessed in. I was beginning to think it wouldn’t work. Perhaps May’s lack of body control was too severe to use it. Then, I had a brainstorm when I saw that little red rocking chair collecting dust in a corner of our living room. May always loved her old Bumbo seat, but she is far too big for it now. We use a larger one on occasion, but she’s never taken to it in the same way. If it worked, the GoTo seat could attach to the rocking chair and give her the opportunity to rock herself, as she had in the Bumbo. Here she is trying it for the first time: What do I like about the seat? 1) May feels secure in the harness which 2) attached easily to a very unorthodox seat for a disabled child and 3) kept her in a good position (feet firmly on the floor and encouraging her to lift her head and hold it in midline). It is very rare we are introduced to a new toy or equipment or anything that May enjoys as much, or for as long – 30 minutes straight in her first seating. Click for full photos: Five point harness and high, cushioned seat that supports May’s head. Two adjustable straps attach across the back of the chair and one underneath Feet in relaxed and good position My only issue was that the harness kept slipping down her left shoulder. Admittedly, May’s shoulders are very slim, but I think it was partially to do with the angle of the strap. Problems we had earlier with using the seat wouldn’t be so problematic for children who are smaller/younger than May (shopping trolley) or have better body control (table seats). In the future, I hope that the GoTo Seat will allow special needs family participation for May where it doesn’t exist now. It will accompany May on our next flight to the States, and who knows where else we’ll GoTo. (See what I did there? I’m not above a bad pun.) Disclaimer: Leckey sent me a seat to review. All opinions are my own. All giggles...

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If you ever doubted having another child…

Posted on Jan 28, 2014 | 3 comments

If you ever doubted having another child…

WARNING: Do not watch the following video with anyone you would be embarrassed weeping in front of. This week on BabyCenter, I shared this video of Trenton and his sister Lindsay, who has Spinal Muscular Atrophy, a genetic disease that causes muscle weakness and progressive loss of movement: There has been no greater, unexpected joy in my life than seeing my children’s relationship blossom. My daughter’s disabilities made me question whether a second child would benefit her or take valuable time away from her. But one thing I thought less of was whether it would benefit him to be her sibling. May can’t talk or play with him. But she is the person he runs to and hugs when he comes home from day care. She is the one he asks for when he goes to bed and doesn’t want to be alone in the dark. He turns on her toys for her and brushes the hair from her face. And though he hurls himself at us at a million miles per hour, he strokes her cheeks with delicate care. And before you think he is a complete angel, he also steals her milk. Just like any little brother would. My son’s only two, but if he could vocalize his adoration for his sister, I think he’d do it in the same way as...

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