Baby rides the short bus (May 21)
These past few days have been wonderfully easy for Lucas! He remains a champ, breathing on and off the vent like it’s old hat. Like he wouldn’t ever consider stopping. Like we were crazy for worrying. Of course, something was definitely weird with his breathing a week and a half ago and we haven’t forgotten, nor have we figured out exactly what was going on. We know that things can change quickly so for now we’re keeping a close eye on the little dude.
Meanwhile, we’ve been reading more of the essays collected in the book My Baby Rides the Short Bus. We actually quoted from the book back in January when our friend Sha gave it to us, and just recently we delved back in. The subtitle of the book sums it up well: The Unabashedly Human Experience of Raising Kids with Disabilities. The essays, written by parents with more years of parenting experience than the two of us, are sometimes scary, sometimes overwhelming, sometimes so incredibly honest that it melts your heart with love. We’ve been struck a number of times by reading what feels like a description of our emotional experience, put into words that we hadn’t yet even been able to form.
We found audio recordings of some of the authors reading excerpts from the book. There are three here, all good, all emotional. The third essay essay especially struck a cord with us – it starts at about 4:30 if you want to skip ahead.
[audio:babyridestheshortbus.mp3]
Comments (1)
Julie Graves
May 23rd, 2010 at 10:46 am
Dear Krista and Burke,
I listened with an aching heart to the mothers who spoke in these recordings. I am trying to think, what could I do in my daily life, to ease the huge task these parents, like you, and your beloved children, like Lucas, undertake every day, of living and of building a life that will be good for all of you?
I live in California, so for Lucas and you, the blog is the main way I have of giving what support I can. I have a niece Allison (who has written at least once in your blog) who is a Special Ed teacher in Texas, and a nephew, her brother, who teaches in Austin at a school (one of just 2 in the state) for children who are both deaf and blind. It’s a family calling for them: their mother just retired from a career of doing the same– wonderful people I am in awe of.
But if it is not one’s career, what is a helpful stance? One can vote for public services, of course. But does it support you if people you encounter casually, acknowledge Lucas’ special needs? Can people help logistically, as you maneuver your specially equipped entourage, in a way that feels good to you? Day to day, what, and importantly, how to ease your way in the world?
I am going to order My Child Rides… and read it through, and share it. Maybe that is a start on wisdom.
Thank you for posting this source for those of us who are puzzling over the question I am asking.
Julie Graves
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