What we wish we had said

Reading Twitter last night when I was supposed to be checking my daughter’s hockey schedule, I fell upon a tweet from Bloom, the blog from Holland Bloorview Kids Rehab Hospital.

Bloom’s blogger, Louise Kinross is the inspiration for Disabled Families. The way she writes about her son Ben is moving and compassionate. Her heartfelt honesty makes others open up about their experiences. She mines information from social media, medical journals, other disability organizations, Holland Bloorview research, patients and families at the hospital. It is a regular stop on my daily read.

The tweet that caught my eye was a video put together by Elizabeth Aquino, a California writer who has a daughter with severe seizure disorder. It is called the Extreme Parenting Video Project and is a collection of still pictures of parents holding signs of what they would have told themselves on the day of their disabled child’s diagnosis.

It caught my attention because of replaying receiving Deane’s diagnosis (See Diagnosis Day). My husband and I cannot remember what we said to each other that day. We know that after speaking with the doctors, we went to see Deane in his incubator and surely told him how much we loved him. But what do we wish we had said to ourselves?

At that time, we wanted to hear that it was all going to be OK, that we would get through this. What we probably needed to hear is to remember there is world outside your tiny family, that help was out there and that Deane would show us the way to move forward.

All these answers plus more are in this video. The messages range from the trite and sentimental through the frighteningly negative to insightfully funny. We’ve all probably had all of these thoughts, even if we did not let ourselves articulate them. It is a great piece of communication that speaks volumes without saying a word.


7 thoughts on “What we wish we had said

  1. Thanks so much for sharing the video Ijeoma. And thank you for your kind words about BLOOM. I am so glad that you have joined us in writing about the unique parenting path we are on. Thanks again, Louise

    Posted by Louise at BLOOM | September 19, 2012, 9:00 am
  2. Thank you so much for your kind words and for sharing the video (although the only video that I see here is an ad!). I look forward to reading your blog and learning more about your own experience —

    Posted by Elizabeth Aquino | September 19, 2012, 9:16 am
  3. Oops! I just clicked on the wrong link! Sorry for that — I’m up too early in the morning. Again, THANK YOU for sharing this.

    Posted by Elizabeth | September 19, 2012, 9:17 am
  4. Mark and Ijeoma I don’t know what you would have said to each other, but as a family we watched you and I know that the words would have been loving, encouraging and supportive. I know that because that is who you are. I am crying right now because as a family all we saw was how brave you were, knowing full well you were scared out of your minds… you were so young and innocent and there was noone who really could give you answers.

    Posted by Patty Parsons | September 19, 2012, 3:22 pm

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