Day 16- Flowers

Day 15- For Both Our Sakes

Tonight I'm re-sharing a post from about two years ago.  It's a good reminder as I go through yet another day feeling like there's never enough time for me.

I've been feeling a bit uninspired here.  We've been trying to soak up the last weeks of summer by getting to the park every day before the rains return.  Together we've been going through the motions of the days and weeks in between visits from family and friends and trips out of town.  Somehow I've been neglecting the camera, neglecting my writing, neglecting myself, even.

Sometimes being a mother makes me feel so disconnected from myself.  Spending days wrangling my reluctant child in and out of clothes and diapers, attempting to feed her through yet another hunger strike when nothing finds its way into her mouth and everything is thrown on the floor, going to and from outings, errands and activities, most of them involving cajoling, if not full on mommy-toddler wrestling matches.  It's exhausting, as any mother knows.  There are no lunch breaks as I squeeze work into the minutes that she actually naps.  I breathe sighs of relief when she is finally down for the night, even as I know that we'll likely have to put her back down a couple times before we turn in ourselves, and then inevitably a couple more times before the 5:00 am wake up call.  The day-in and day-out can kick your butt and kick it good.  And it definitely leaves me feeling a disconnect from the self I'd always known, the me that has always needed down time, quiet time, alone time.  But alas, there don't seem to be any real vacations for mothers.

Yet in the midst of feeling depleted and unmotivated, I had a wonderful moment of connection this weekend.  A moment where the mama-me and the missing-in-action me seemed to coalesce and I felt so whole.

We were up on the Olympic Peninsula at a beautiful garden wedding.  It was past Cora's bedtime and she was worn out from the day.  Instead of packing her up and heading off to bed as we always do, we kept her out a bit longer.  I wrapped her in the carrier as the dancing began.  With Cora snuggled against my chest, I took off my shoes and danced in the grass.  I barely felt the extra weight as I moved, clutching Cora's head against my chest and moving us both through the night air.  We danced together until the party began to slow, when my quiet girl began her own little shimmy to mirror what I too was feeling.  Neither of us were ready for our dance to come to an end.

And during those moments I felt like myself again in a way that seems so to evade me in my life as a mother. There are usually no pauses. There is always a small hand in mine, a small life in my care, a small person's large will to negotiate.  Yet for those minutes both parts of myself danced together as one.  I was struck by such a pure knowing... a peace... where I didn't feel pushed and pulled by the needs of my child, but felt that rare feeling when her needs and my needs perfectly converged, pulling the pieces of me back together.

Later, as I tucked Cora into the hotel bed, my heart ached with love for the little girl that has stolen my heart and re-written my life.  I wished that I could hold onto that feeling as I navigate the moments that seem to make up my life and that feel like such hard work.  I want so to not lose touch with myself as I devote my life to my child.  I want to be able to find these moments when I need them, to find them in myself and share them with my girl.  I want for her to see me as a whole person, not so much a harried mother going through the motions.  As important as maintaining that connection is for me, it's just as important for her.

And so with that reminder and the memory of our sweet dance beneath the stars, I will hopefully start these days a little bit fresher.  Maybe with a little more patience, and a little more forgiveness.  And I hope to be able to hold onto it as we move through our days, for both our sakes.

Day 14- Lighting the World

Day 13- Sharing a Snack

Day 12: Growing Pains

Last week we experienced a first.  A painful first.  A first that I knew we would one day see, but that I was hoping would be far in the future, or maybe, just maybe, in a perfect world, never happen.

Ah, but the world is never perfect.

At school with Cora while parent teaching in her classroom, I sat eating snack with a group of four-year-olds, when Cora asked for more bagel.  What she actually said was, "Dut, dut, dut... More bagel, please!"  She often uses this little repetitive sound when starting a phrase. Her speech therapist thinks it's partly habit and partly her mind and body trying to get things out too quickly. It's actually been really exciting because recently her speech at school has exploded. Whereas before she was shy about speaking, now she seems to want to talk to everyone. This is huge.  But it also means that more kids are actually hearing her talk, and realizing that her speech sounds different and can be hard to understand. Suddenly their quiet friend Cora, who as I've been told by several kids on multiple occasions, "doesn't really talk," is now talking, but in a new and maybe surprising way.

Immediately after Cora's request for bagel, one of her newer classmates imitated her speech, then proceeded to exclaim, "She sounds like a baby," and exploded into peals of laughter, which were echoed by the rest of the table.  Everyone laughed except for Cora, who sat quietly eating her bagel. I tried to interject a variation of what I often say when a classmate asks me if Cora is a baby or comments on a difference, "Even though it takes her longer to learn to talk, that doesn't mean she is a baby." Of course, my effort was lost in the laughter, and I sat there stunned and sad as the kids' conversation went from how they talked when they were babies, to potty humor and babies and many variations of four-year-old hilarity.  At that point I really didn't know how to respond.

I was so upset, but felt it couldn't really be addressed at the moment, with several kids all following their own tangents of silliness at that point. And I didn't feel equipped to handle it neutrally, since the feelings that had been hurt were mine.

I managed to get through the rest of the school day and brought up the incident at the daily debrief with the teacher and the other parent teachers. Coincidentally, Cora's teacher has just been reading My Friend Isabelle, (a book about two young friends, one of whom has Ds) the week before, and was in the process of helping the kids compile books on their individual talents and their struggles.  This lesson on appreciating and recognizing differences and similarities among peers had been actively going on. We ended our debrief conversation with a couple more ideas.

But it just didn't feel settled to me.  I went home and cried off and on through the afternoon as Cora and Ruby played together.  That night, I wrote more about my concerns to her teacher: concerns that the uproarious reaction it produced could lead to more of the same types of comments, concerns that even if Cora may not have been hurt by it at the moment that that could change at any time, and concerns that jokes of that kind could instill a climate where she is seen as "other" and separate from the other kids.

So we talked about solutions.  And honestly, there have been wonderful ideas that are being implemented. Her teacher is sharing social stories with several relevant messages. Parents have been emailed with ideas about how to talk to their children.  I have written suggestions on how to talk to kids about Cora and about Down syndrome, specifically.  Last year Down syndrome was never mentioned to the kids. It didn't seem necessary. The kids accepted the simple response that "She is not a baby, she is three like you, and she just takes longer to learn how to do some things."  That response was enough.  But it seems like now it is perhaps not enough. Now they want to know why, and what, and talking about Down syndrome seems like it should be part of that.  We are not ashamed of Down syndrome or afraid of the questions.  Cora knows she has Down syndrome. We are afraid of the laughter, the hurt feelings, and the making fun.  I am afraid of the potential for this safe and beloved space to become somewhere our family doesn't feel comfortable.

I am really hoping that won't happen.  For now it's being handled well, largely thanks to Cora's incredible, creative and nurturing teacher, and to the families in our school. Yes, there have been a couple of hiccups and some more painful comments, which shows me that addressing it now is important. But we are moving forward and using the opportunity to educate classmates and parents alike, and hopefully, to encourage more appreciation of differences for all involved.

There is no doubt that it has been painful for me. I've been solemn and a little sad. I don't love the role of the squeaky wheel, but I know how important it is for me to advocate for Cora to belong. And I know that out of the hurt there is a real possibility for so much growth.

Day 11- A Whisper in My Ear

Day 10- Having a Sibling with Down Syndrome

Before Cora's little sister Ruby was born, my husband and I had a lot of uncertainties about having another child. 

We heard that having a younger sibling could be a great thing for Cora, in theory.  We knew that it would likely help boost her development and motivate her to push herself to learn and grow. But that alone wasn't a good enough reason to expand our family. We weren't considering another child simply for Cora. We knew that another child needed to be something we wanted in our family as a whole.

We did, of course, worry about sharing our attention and our love. We worried about spreading our resources too thinly. We worried about the possibility of having another child with medical issues.  We worried and thought about all kinds of things, because, well I'm a little bit of a thinker and a worrier.

Some may find it strange, but how Cora's sibling would be affected by having a sister with Down syndrome was not on my list of worries.  I know that many people believe that a child with Down syndrome is a burden to their parents and their siblings.  But those people don't have first hand knowledge of how enriched our lives have been by Cora.

I knew that studies show that the majority of siblings of people with Down syndrome express love and pride for their siblings. I've been lucky enough to have read a number of positive accounts from those whose siblings have Ds, like Elizabeth at Confessions of the Chromosomally Enhanced. Her experience having an older sister with Down syndrome was one of the reasons that she adopted her daughter, a beautiful girl with Ds. This week I came across another article by a sibling, who while writing about about her sister's wish to to be treated as the complex adult that she is, also expresses her own feelings about what her sister has taught her.  These stories are not unique, and show me that siblings of people with Down syndrome are not by default hard-done-by victims of circumstance.

We don't know what role Ruby will want to play in Cora's life as they get older and enter adulthood.  We hope to help Cora have enough support in place that she can have choices about where, how and with whom she wants to live. We hope that Ruby will want to continue a close relationship with Cora and that she will want to offer her support of some kind. But we certainly don't want her to do so at the expense of her own happiness.

For now, we will just see which paths they each choose to take.  We will enjoy the magic of watching them develop their relationship.  These days we get sentimental hearing them call out for one another before they're even upright in the morning.  We delight in seeing them shriek with laughter as they dance in circles around the living room. We watch their competitiveness take foot as they play tug of war over a water bottle and then race to the same toy. And we feel our hearts swell seeing Ruby respond with perfect understanding to Cora's often hard-to-decipher phrases.

This sisterhood is amazing.  It humbles me daily.  I am completely convinced that they are one another's greatest gift. We couldn't have planned it better had we tried.