This piece cuts to the heart of what I believe many of us parents struggle with in a culture that values 'normalcy.' It's written by Tekeal Riley of Bern, Switzerland (above with daughter Livia). Tekeal and I have an interesting connection. She posted a comment on the BLOOM blog and when we got to chatting I realized she lived in Bern, where my cousin Jennifer lives. We then realized that Tekeal had already met Jennifer at a support group for families of children with special needs. She can't remember how she came across BLOOM. Read more about Tekeal and Livia at LIVIA THE GREAT. Thank you Tekeal! Louise
By Tekeal Riley
Many would agree that young children possess a cuteness which grants them a certain leeway of tolerance, if not adoration from others. The sweetness of pudgy cheeks or innocence of creative thought opens almost any heart, even in those remotely inclined towards turning away.
I think about this because sometimes I’m so enamored with my daughter’s cuteness that I wonder what will take its place when it fades away. How others may treat her differently when she’s no longer so small and precious. It’s called the Cuteness Factor and I’ve heard reference to it from parents whose kids don’t necessarily ‘fit in.'
Some parents seem to fear how others’ openness to their young child’s differences might dissolve or harden once the heart-warming giggles or age-appropriate silliness have taken on new form. (That, aside from the simple concern of having to deal with more of the real world and its rougher grown-up edges.) I think it’s fair to say there is fear of the differences shining through more once the cuteness melts away.
I know for myself that I still somehow get jolted when seeing youth or adults with Down syndrome. The world that I now live in – immersed in loving my 4 1/2 year old daughter who also has Down syndrome – gets shaken and torn, just that little bit. But over and over again.
I'm taken back to the first pamphlets given to me in the hospital after my daughter was born, after the doctor’s supposition of Down syndrome was placed irremovably in the air. I didn’t want to connect the dots. I already loved her so fully – knew I would even if this diagnosis was true – but I also didn’t want my daughter to be like that. Like in those pictures. Like them.
Contradictions of heart and mind.
Hence, almost five years ago, my ‘gap barometer’ was born: the one that reveals to me how much space exists between loving who my daughter is now, and who I’m still afraid for her to become. Between my fixed images of what I think I want, and what is. Between having my heart truly open to humanity in all its forms, or not. Between my ideals and reality.
We went to her directly, back then – telling her with our hearts and our words and our hands how perfect she was and how overjoyed we were that she was here. In some funny way I even felt special when hearing of the one in about 700 chances of having such a child. While waiting for conclusive blood-tests, I also told friends I hoped the doctor’s diagnosis was wrong.
I have compassion for the places of contradiction and wordless prejudice in me. For the parts that want to fit in. How long I have struggled with living up to my version of life within this culture of ambition and outward, appearance-validated existence. It is no wonder that somewhere in my cells the automatic response to Down syndrome was, No! Not that.
And so, shame and compassion walk hand-in-hand. Shame for the subtle ways I try to hide my longing for her ‘typicalness.’ For the tiny, shocking moments of self-pity. For feeling like I don’t provide her with enough. For envy.
Livia has shown me how afraid I’ve been of difference. Or rather, my compulsion to fit in. She has pressured the parts of me wanting ease and comfort, forcing my advocate self out of its skin. Her extra chromosome has also blessed me with finding an online community of bloggers, who, aside from offering useful information, have inspired me with their humanity.
Thank goodness I have the chance to grow up with Livia. To literally let my love for her merge with and eclipse the other pictures in my head. To let her cuteness unfold before me into something yet fully unknown.