Sunday, November 3, 2013

Soul Sunday: BRAVE

Blake and I

Down Syndrome Awareness Month is now over but being Canadian I'm taking the liberty of honoring their DS awareness week (Nov 1-7). Down Syndrome Awareness month/week is an important time for mothers, advocates and people living with Down Syndrome to have our voices and stories heard in hopes of educating the public. I was planning to write about my traumatic birth experience with my son Blake followed by the traumatic manner in which his diagnosis was given and talk about the triumph one can feel out of such perceived trauma or tragedy until the other day when I was face to face with a stranger.  
Blake enjoying the guitar - wearing Fab Kids top/pants from London Calling Collection

I was doing my regular domestic diva duties and grocery shopping with both of my children in tow. I may or may not have been pacifying them with a chocolate chip cookie so graciously given to frantic mothers shopping by the local bakery department (they must be mothers too). I was casually glancing over at the produce when a stranger approached me and put a hand on each shoulder, staring intensely into my eyes saying “You are SO brave”. I paused in shock and gave my blanket polite response to any ‘compliment’ and was just able utter “Thank you”. Before I could ask her what she was referring to she locked eyes with my little boy sitting in the grocery cart so patiently waiting for another bite of his chocolate chip cookie, she loudly proclaimed again, “BRAVE” and abruptly walked away. Stunned, my mind flashed to several things before I could actually process what she was saying; “Brave? I thought, for what? buying the Albertson’s guacamole? For wearing a vintage 70’s poncho with Native Canadian Moccasins to the grocery store? for feeding my kids cookies before dinner? Then it hit me. She was telling me I was brave because I am caring for my son, who she must have identified had a disability or specifically Down Syndrome.
I spent the balance of my shopping excursion contemplating this stranger’s declaration of my “braveness”. At first I was irritated and it brought me back to the feelings of annoyance when Blake was first born and many people came to me with “I’m Sorry” statements instead of the natural reply to a new child’s birth, Congratulations! I was irritated at her ignorance for not knowing how amazing my son is despite his perceived disability. But after a long internal dialogue and reflection in the isles of this grocery store, I realized she was right. I am brave. I am a mother. I have carried and nurtured cells to human life, I have given birth twice, I have spent countless sleepless nights tending to my children, I face societies ignorance every day when I step outside my door as people stare and whisper about my son. I struggle with the unknown future each day for both of my children. I stand back while other children the same age out play, out climb, out talk and out run my son. I wipe asses, noses, sticky hands and bloody knees. I bake, craft, clean, launder, entertain, cook, guide, advise. Oh, and in my spare time I am also a wife, business owner and my own person with needs/desires/passions. I AM brave. I am so thankful in hindsight for this woman who had the guts to face me and project my truth back to me.
I am brave because I focus my efforts on my son’s abilities not his disabilities. My son is smart, loving, strong and spirited. He understands what you say to him (receptive language skills on par with his age of 2.5) he just can’t respond verbally ... yet. I hear no “mamma” or “I love you” verbalized but it is okay, I can feel it. He signs for “more”, loves to dance, says and waves bye-bye, gives the best hugs, loves books, music and is willing to try anything with no fear. Blake and I entertain professional women all week long together, occupational and speech therapists.I work tirelessly to help my son achieve all the physical and verbal skills that come naturally to most, but for him take’s more work and effort. For example, Blake is naturally attracted to toys that require jumping but as of today he does not have that skill. In the face of challenges like these my attitude is “oh, well, maybe tomorrow”. Maybe tomorrow he will say mom? or mamma? We just keep working, moving forward, and being brave. This is not to say that everything in my chromosomal plus world is fabulous and positive. Blake also throw tantrums, spits, head bangs, defies me, pulls his sisters hair and is constantly destroying or undoing everything in his path. Sounds like a typical 2.5yr old? I don't know but it is typical for Blake.
The Motherload: My Step & Bio kids - Blake, Danica, Kaleigh & Dylan

You have to be BRAVE to be a mother of a child with Down Syndrome and you also have to be just as BRAVE to be a mother to ANY child. Every mother reading this is brave as we all face our own unique issues with our kids of all ages. I am a mother of two fabulous children and a step mother to two others, each with their own unique talents and challenges. This is what I want to world to know about Down Syndrome; these individuals are more like your children then they are different. I still face the same struggles and challenges as you do as a mother, just mine last a little longer or take more effort to accomplish or overcome but believe me we WILL accomplish them.Together. Bravely. 
Blake & His Sister Kaleigh

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