Tuesday, December 18, 2012


“There are, it seems, two muses: the Muse of Inspiration, who gives us inarticulate visions and desires, and the Muse of Realization, who returns again and again to say "It is yet more difficult than you thought." This is the muse of form. It may be then that form serves us best when it works as an obstruction, to baffle us and deflect our intended course. It may be that when we no longer know what to do, we have come to our real work and when we no longer know which way to go, we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.”― Wendell Berry 

Give and take, ebb and flow... these are principles that I have had to learn to live by.  It's hard to maintain at times, to be the one that forgives when others have slighted, to be the one that overcomes instead of succumbs.  Sometimes you are on the receiving end of things, sometimes you give back.  It's about as fair and balanced as life gets.  There are times when you feel low and then a little spark will reignite your drive.  Inspiration is like this too... sometimes you can breathe life into ideas or others and sometimes others give that precious gift back to you.

I recently found myself in a position of both.  We were invited to and attended a gathering by ICDSP.  The organization had arranged for a two guest speakers, Sukaina and Abbas, a mother and her now adult son with Down syndrome.  Abbas is a graduate of the program that Wyatt is in.  We haven't attended many of these things, simply due to timing and logistics;  carting the twins and Quinn around is not always easily accomplished, especially around dinner time when they are most likely to be cranky.  This day, however, was scheduled for late on a Saturday afternoon. In Loganspeak, this was do-able.  Despite my (now) quasi-substantial online presence, we have not gone to a lot of local functions to network, a point that we need to remedy. 

We ambled in, all five of us, and found ourselves in a room of parents, mostly with infant children with DS.  There weren't any from our former group there yet;  most of the kids were much younger than the twins.  We found a spot where we could put the kids down on the mat and still keep our luggage out of the way.  Zoe naturally started to roam while Wyatt was content to sit and take everything in. I sat crosslegged with Wyatt while Sean ran down the hall after our daughter and Quinn found a quiet corner to draw.  The leaders remembered us and we chatted a bit, catching up on what had transpired since our group sessions had ended.  I was asked about my blog (their blocking software will not allow viewing it at work) and I filled them in on a couple of distinctions that I had won.  I was surprised to hear that they were handing out Down Wit Dat's URL as a resource, a compliment that I found myself almost speechless for.  Perhaps it is the personal connection, I'm not sure, but I was deeply touched by this.

Not long afterwards, I found myself staring into the eyes of a curious little girl.  They were seated not far from us on the mat and her mother had overheard one of the leaders mention my blog.  After eying my twins, the Mom asked about it.  Her eyes lit up when I told her; she said "I thought so!  I read your blog!".  At my look of surprise, she continued on to tell me how I had helped her and that she found my words both inspiring and comforting.

I fumbled through my thanks and paid attention to her darling little daughter who was quite taken with me (and the necklace I was wearing).  So much so that when I stood up to go talk to another parent later on, the little one began to wail.  Her mother joked "She doesn't even do that for me!".  I made sure I gave her a cuddle or two.  I'm sure we will meet again.

Within minutes, another mother slid closer on the mat and mentioned that she too had read my blog and found it quite helpful.  Again, I mumbled a thank you (blame it on the night shift I had worked the night before) and we talked about our children.  I was humbled, but pleased that these parents too had found use in these words.  Before I left that day, I met another mother with twins, who had actually taken the time to contact me.  However, I had not received her letter and made sure that all three parents had my personal email account before I left (as well as the Facebook group and the Facebook page).  I had gone to mingle and educate myself and through that hopefully shrug off the blues that I had been feeling.  I got to mingle, that is true.  However I also found myself validated, encouraged, humbled, yet buoyed by the experience.  There have been times when I have questioned the validity and the rationale of doing what I do.  Thanks to these parents who took the time to personally thank me, to tell me of their experience as new parents of a child with Down syndrome and how my words eased that early transition and gave balm to their wounds, I found my drive again.  Seeing them interact easily with their children, the happiness on everyone's face, the comfort they had talking about this nuance or that one was sublime.  Knowing that I had contributed to this a tiny bit filled me with happiness.  I had inspired them and they had given me back a much needed spark. For that, I will be eternally grateful.

As these things go, after an initial meet and greet (and as the kids played around us), it was time for our guest speakers.  Sukaina quickly outlined her experience as a new parent 20 years ago.  She was told that her son may not walk, would not talk, would not amount to much of anything.  He would be very loving however and "hug everyone he meets".  As she was speaking, there was something about her posture, in her eyes that I recognized all too well.  Defiance, mingled with the all powerful protective instincts of a devoted mother.  She continued to say that she made up her mind at that moment that her son would walk, would talk and that he would NOT hug everyone he met.  He would shake their hand, greeting people cordially and respectfully, just like everyone else.  I could see her pain as she spoke.  It awakened my own.  Although all of this occurred 20 years ago for her and almost two years ago for me, the agony of it was still close at hand for both of us.

Abbas did grow to walk and talk and does in fact, shake your hand when you speak to him.  He did not address the group himself as he was a bit shy but was more than willing to speak to people one on one.  He has accomplished in his life far more than the average young adult.  One by one Sukaina pulled out awards and medals that Abbas had won in the Special Olympics.  He has been recognized by his community and by his country, being a recipient of the Government of Canada's Queen Elizabeth II Diamond Jubilee Award.  He is currently applying to college programs.  He continues to help out with the Special Olympics, coaching and inspiring kids.  I casually spoke to him later and he told me that he felt he didn't have "special needs" any more as he was an adult.  It was the young ones who needed the help now, he felt, and he was more than happy to give it back.  It was hard to keep my eyes from filling up as we spoke;  this was a young man that any mother would be proud of.  Full of light and laughter, but also possessing a practical approach to the world.  "My parents are y'know, getting old..." Abbas mentioned at one point, "... I have to do things on my own.  They won't be here forever".  I nodded in agreement as he outlined his eventual plans for school, for living on his own.  Plans which his mother confirmed to be very true much later.  We chatted easily about things, he and I;  Abbas' take on things was pretty much what you would expect from a 20 year old, eager to explore adulthood.  I enjoyed our short conversation very much.

I broke down while talking to Sukaina.  She saw it long before it happened, her eyes expertly reading mine.  I thanked her for taking the time to speak to us as we need to know what has come before.  I told her that I thought that this generation had it a little easier, although we still have light years to go.  She nodded sympathetically and seemed genuinely interested in my little efforts and gave me some sage advice about believing in ourselves and our child.  "Yes, exactly", I thought at the time, as her words, the voice of experience  soothed my doubts, my fears.  I hope our paths cross again.  We are in this special club together, as were all the parents in the room.  What I took away from our conversation rekindled my passion for my work here.  I hope she understands even a fragment of how grateful I am that we met.

The ideas, the stories, the articles, the pages, the branching out into social media... these are all work.  Although it is a subject that is dear to my heart and can be (and is) often lighthearted, it remains, well, work.  The words, sadly, do not flow effortlessly from my fingers.  Having found my desire to continue this work again, through the words of others, has been indescribably powerful.  Perhaps Mr. Berry had it right as it is the things that challenge us the most that have the most worth.  We're pretty close, the Muse of Form and I... Thankfully the universe throws people like Sukaina and Abass into my path now and again, to fill my sails anew with the determination to make this world a better place for my son.  Life is often full of obstacles and baffles us with it's complexity.  I can say, with much gratitude, that I have my family and all of you to inspire me and help me keep this course, no matter what twists, turns and rough waters may lie ahead.


  1. Hi Jen, my friend, your cousin Marla, linked to your blog on facebook many moons ago and I have been a devoted follower ever since. I've learned so much from you and find you incredibly inspiring. Thank you for putting in all the work that writing this blog requires.

    1. Thanks for stopping by Lisa... and your very kind words. Actually, she mentioned you to me some time ago. Thanks for your continued support. I have a feeling one day that all of us will end up somewhere for coffee. xo


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