Ieuan

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...

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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...

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Goodbye 2013…

Posted on Dec 28, 2013 | 12 comments

Goodbye 2013…

Congratulations to May and I ! This is our 400th post on Mama Lewis. Thanks for reading and happy holidays! To say I’m done with 2013 is an understatement. If someone offered me a lobotomy tomorrow and said, “We can remove 2013, but we’d have to remove everything, not just from about April when May’s hips began to really trouble her. You’d have to erase everything. May’s birthday at Kew Gardens. Your fun day at the London Zoo. Everything.” I’d say, “How soon can you cut me open?” Many people like to look at the positive side to...

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My two-year old knows something’s wrong with May

Posted on Nov 25, 2013 | 5 comments

My two-year old knows something’s wrong with May

A few mornings ago, my husband was taking a shower and so didn’t hear May have a seizure. She cries in a thin and tremulous voice, and it is filled with terror. She still has at least one seizure like this a day, which is much better than it used to be. My husband was letting me sleep in, so I didn’t hear it either. Very softly, there was a knock at my door. “Mama?” a little voice said. “May-May’s crying.” I rushed out and held her in time to comfort her. Later that morning, Ieuan made himself shake. Just like May, his arms went rigid and his fingers...

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It’s three weeks post-transplant and…

Posted on Oct 23, 2013 | 12 comments

It’s three weeks post-transplant and…

I’m home! I’m home, I’m home, I’m home… (that last bit was sung but thankfully for you I don’t include audio downloads on this blog) I was meant to stay in the hospital for 4-6 weeks, maybe longer. I was out in three. That makes me some kind of superwoman. I don’t exactly feel like a superwoman. I feel pretty ill most of the time. But what a result! I am back at home with my May-May and Ieuan and husband and I’m loving it. May didn’t even have time to visit me in the hospital. The day we planned for her first visit was the day they...

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