Thursday, January 20, 2011

Growing up

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

Growing up
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.


I ♥ this. Honest self-reflection and hope can go hand in hand. My friend Amy said it well: "Love first, worry second". Livia and Tekeal are both beautiful humans. They will always be beautiful humans. It doesn't matter what the ambition-and-appearance-oriented culture has to say. We know that beauty and worth is far more than that...

What beautiful reflections. As the parent of a now 15-year old with significant disabilities, I can only say that love grows ever stronger and does eclipse the other, but acknowledging conflicting feelings is right, proper, and healing.

I was thrilled to see that you are from Switzerland -- my husband grew up in Mollis, a tiny village outside of Zurich!

Tekeal. Beautiful beyond belief! Perfectly expressed and perfectly YOU. Left out, of course, is how much you and Livia are teaching us ALL by example.
(i am tweeting this, i hope you don't mind;-)

This was beautifully written...almost poetic. We parents must acknowledge our fears but not let them overtake us. Live moment by moment, day by day, because one never knows what tomorrow may bring.

Your words are exquisite. I have had the pleasure of many visits to your blog - enjoying her cuteness in the many beautiful photos you share. Thank you. Barbara

I am honored and blessed to be your friend, Tekeal- this was BEAUTIFUL!

Oh, wow. Rarely do I read something in the Down syndrome online community that resonates exactly with my soul and all the questions that sometimes keep me up at night. My son, Benjamin, is almost three, and we wonder about the Cuteness Factor. My husband and I both still struggle with our fears for the future, and still mourn the life we thought we'd have. I feel an unspoken judgment from the DS community at times because I am not a bumper-sticker, Buddy Walker, stop-the-r-word advocate. I love my son more than words can say, but it is all complicated and jumbled up in my heart.

Tekeal, as your older brother I am humbled once again by what you have to teach me. Livia is such a lucky girl to have you as her mom and the world is so fortunate to have the gift of your humanity, authenticity, and love. If Livia is to become anything like her mom (and I think she will), the "cuteness factor" will endure in her character. We are all so proud of the influence you have in the DS community,... on all of us. Still looking up to you! xo Big Bro

Hi Tekeal,

I just wanted to say one last thing: "Your daughter will forever be beautiful!!!"


Thanks Tekeal for tracing the wonderful, difficult, complex and contradictory path we follow when we follow our unique and special children.

Your honesty and comfort with complexity made me think of Walt Whitman's line:

"Do I contradict myself? Very well, then I contradict myself, I am large, I contain multitudes."

Really wonderfully written. Thank you.

Beautifully written. I have a 13 year old daughter who has Down syndrome; Julia was painfully cute as a young child, and while I can't say that she is conventionally 'beautiful', and she is certainly different, she is exquisite in so many ways. Time is on your side - as your love and appreciation of your daughter continues to evolve, so will your apprehensions and fears subside. Oh - there will be days when you want to punch a wall, no doubt! But more often than not, I look at Julia, and I see her lovely, free spirited nature; her boundless capacity to love; her determination to learn - I see that she is so much more emotionally evolved than most people I meet. The 'cute' factor is fleeting for most of us, frankly. With a mom like you, I have no doubt that Livia will emerge from 'cute' (as Julia has) with inspiring qualities that fill will more than adequately fill the gap between your love of Livia in the present moment and your optimism and enthusiasm for the person that she will become. Keep writing!

Thanks a lot for sharing.