Tag: ways to be supportive
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Revisiting Moments of “Grief and Rage”
Nearly 3 years ago, I shared with those of you reading our blog at that time some words of the hilarious guitar goddess Mrs. Smith to describe some of my feelings about some of the things people say to us about the circumstances we are in. At that time, I shied away from saying that…
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March Gratitude & Some Reading
To Hannah My sweet daughter, my love has been, is, and always will be yours without any need to do anything, much less something that would necessitate a gratitude note. But I know I owe you a note all the same. For holding my hand in the middle of the night on the way to…
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February Gratitude & A Very Short Bit of Reading
To My Sweet Sister-in-Law, Randi I don’t even know what to say about the past month, except that never had I expected most of it to happen the way that it did. Randi, I know your proverbial plate passed the point of overflowing long ago. And yet, without hesitation and with nothing but cheerful kindness…
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Sometimes Acceptance As A Gift
When I was a little girl, I used to eagerly look forward to Christmas. Holidays where gifts were given were one of the few times I got toys or anything new that felt special or exciting. And even then, because my parents were pretty darn poor, my grandparents and great aunts and uncles often still…
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Public Comments and Open Letter on Proposed Changes to the AAC Policy for Division of Developmental Disabilities Recipients
Earlier this week I submitted comments to the Division of Developmental Disabilities as part of a legally mandated public comment period for proposed changes to the policy that governs prior authorization for assistive speech device technology, or AAC. For a while now my posting schedule has been every Friday, however I felt like for those…
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Will We Look Away?
A couple of years ago, I was driving Tony to one of his many therapy appointments. As I pulled to a corner of an exit ramp, I lowered my window and held out some cash to a gentleman standing at the corner with a sign. He quickly met my eyes and then looked down, back…
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Judging the Parents Shouldn’t be a Spectator Sport
Many years ago, I had a friend with advanced degrees and the kindest heart. This person needed significant support with activities of daily living. I know the level of support required because I was trusted enough as a friend to be asked to help provide those services more than two decades ago so that the…
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July Gratitude & Some Doing
Emily I know that there are plenty of people I still owe a gratitude note, and some of you may remember that Emily has already received one a little over two years ago. But that was way back when she was Tony’s music therapist, with a very different role and significantly less time and involvement…
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Not A Privilege
I am going to start off by posting some screen shots that I am going to ask each of you to bear patiently with me and read. They provide some context for my remarks this week. For me, this is something I believe should transcend politics. I am sure it is already evident to anybody…
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Gratitude & Some Reading
Casandra Casandra, when you first came to meet our family more than a year ago, I was scared to hope that this was a job you would be interested in taking. I laced up emotional armor to shield my heart from disappointment, and instead found blessings and more reasons than I could ever list to…