31 for 21

Once again it is October: Down Syndrome Awareness/Acceptance month.  In years past I've posted daily.  Making the commitment this year feels overwhelming, but I'd like to see how it unravels.

I'm looking forward to finding the words to express my recent thoughts and feelings on awareness and acceptance.  I have so many so often, but I've become increasingly aware of my desire to protect Cora's privacy, as well as considering how best to advocate for her through what I share.  Lately my thoughts end up circling inside me and don't find their way out.  But I would like to work on sharing my perspective, while still honoring and advocating for my daughter.  I recognize that I am not a person with a disability, and I don't want to attribute my own voice to Cora.  But at the same time I recognize how important the parent advocate role is in the disability civil rights movement, and how much has been achieved through the tireless work of parents.  I want to contribute to this hugely important process and to help build a world that will give my child more choices and opportunities.

As time goes by the people in our lives get more comfortable with the fact that Cora has Down syndrome.  There is no longer the surprise of her diagnosis, or the worry of her open heart surgery.  She is known.  She is loved.  She is simply Cora.  And as time goes by, it starts to seem like Down syndrome is no big deal.  And much of the time, it really doesn't feel like it is much of a big deal.

But when I think about how much more progress is needed to improve the way the world sees those with disabilities, I understand that it is a big deal.  I wish it weren't. I truly, truly wish that difference weren't automatically perceived as less in our world.  I wish that my dearest hopes and dreams for Cora...to have a meaningful life, with meaningful work, meaningful friendships, and the opportunity to get a meaningful education didn't feel like it will have to be a struggle.

But the struggle certainly feels real.

So for that I will try to take to heart this once yearly commitment to write.  It may be a small thing.  But I have to believe that even the smallest things will start to add up.

The Sweetest Gift

I can barely believe this summer is pretty much behind us.  I can barely believe that my last post was almost 2 months ago, when Miss Ruby celebrated her first birthday.

There are so many moments when I feel I should share my thoughts here.  But then I doubt myself (Do I really need to share that? Is that sharing too much as Cora gets older and should have more privacy?) or I get caught up in the overwhelming chaos that having two small children entails and time just keeps slipping by.

But here we are, ready to welcome back the long months of rain, ready to send Cora back to her wonderful preschool.  The summer has seen so much growth.  Ruby went from a barely toddling wee girl, to a running and spinning toddler who is trying so hard to catch up with her big sister.

Cora has grown in inches and shoe sizes, and is turning into such a lovely little girl.  All the traces of my sweet baby girl seem to have faded into her new contours, her new attitudes, and her astounding growth.  She continues to amaze us with her increases in communication. She is talking more and more, and those closest to her are starting to increasingly decipher her words.  It's a process, and a slower one than many are used to, but she works so hard and wants so much to be understood.  She's getting there and I am so proud.

These days the girls are barely up and out of their pajamas before they're both asking to go outside.  Cora says "Park, Mummy!" and Ruby pipes in with  "Bar! Bar!" while signing "outside."  Eventually we make our way down the front steps onto the expanse of grass across the street, where they take turns chasing one another around, playing peekaboo behind trees, and racing around calling for the neighborhood squirrels.




Witnessing a sisterhood like this develop and grow its roots feels like I'm being given glimpse into such a magical and private world.  Something deep and loving and BIG.  Something that I hope with all my hopes carries with them through this life.  Oh, they fight, of course.  Actually, most of the time Ruby ends up picking on her tender big sister.  We're working on it.  I'm sure we won't be able to eliminate the picking, but at least getting it to be a little more equal wouldn't be a bad idea.

But that's part of a sisterhood too.

I have been feeling especially nostalgic of late, reflecting on the generations of sisterhood in my family, and how very blessed I have been to witness such true and profound friendships.  To grow up seeing my mother and her sisters, such incredible women with such a close bond, really inspired me to value and encourage my relationship with my own two sisters, and has made watching my daughters' bond blossom all the sweeter.

In the last year, those sisters lost a member.  A deeply beloved member.  Her loss has rocked many, and though I have been grieving for my own loss and the loss of my girls who won't grow up knowing her, I just can't get over the enormous loss for the sisters left behind. 

I look on my own two girls' love for one another with silent prayers that their relationship will follow in the footsteps of their grandmother and their mother, and that they will keep one another close for many years to come.

These are big hopes.  That I know. For now, I get to witness their interactions and the complexity of their growing relationship.  They will choose for themselves as life unravels.  But they have some great examples before them, and the most heartfelt love for one another.  I sincerely hope the purity of that love will endure, even as life adds new layers and challenges.  That type of love is the sweetest gift.

My Birthday Baby

A year ago today, this little beauty decided to grace us with her presence.  On a 97 degree day after a hard and fast labor, while her big sister watched Frozen in the next room, she was born in a inflatable birthing tub in our guest bedroom.

This silly little sweetheart has turned our lives around.  She brings so much laughter and love.

For her birthday I made her a book of body parts, using some of my favorite photos of her.  I love this idea, and it is really easy to put together.

Instead of having it printed and bound by an outside company, I went for durability and printed the photos, glued them to card stock, then laminated them.

I hope it'll hold up to the abuse it is sure to receive around here.

This little girl loves her books, so I anticipate reading this many, many times.

Happy birthday, sweet Ruby Elizabeth.  We love you.

 

Sisterly Love

These girls melt my heart.

I didn't think I could find a person who could love Cora as much as Nick and I do.

But Ruby's love for her sister is blinding.  And Cora is pretty smitten too.  These little souls were meant to be.

The Good and Beautiful

I feel like writing about how ridiculously hard this long-term, reduces me-to-the-rawest-of-nerves sleep deprivation is going.  But just thinking about summoning those words makes me want to cry.

I often have the desire to write.  But in between the endless days with the kids, my barely-getting-it-done work, and my desperate and usually failed attempts to get rest, writing gets shuffled to the bottom of priorities.

There are many good and beautiful things going on, even as I fight the brain fog that seems to be winning.

These two are my good and my beautiful.

Every time I feel the desire to write about my girls, I start looking at their photos, and my words seem to escape me. 

I just can't seem to get past how much their growing love and friendship gets to me.  It's like magic.  It's healing.  It definitely makes me forget how many times I'm up at night... at least for a few minutes.  You know, until the next power struggle, tantrum, or screeching baby breaks the spell.

It's so beautiful to watch unfold.  What gets me more than anything is how much Ruby loves her sister.  How hard she will laugh at Cora's antics.  Gut-splitting, breath-stopping laughter. 
 

I see their love for one another and I can't believe I ever doubted the decision to add to our family.  So many of my worries seem so silly now.  I worried about how Cora would feel about her sister, about how my relationship with her would change.  I didn't spend nearly as much time thinking about how it would be for Ruby to enter this family.

Turns out Ruby thinks it's a hoot.  And I'm so glad.

I know that their relationship will grow and change as they grow and change.  Already, I'm feeling dizzy from how fast things are going.  This baby will be running circles around me very, very soon.  This big girl is almost done with her first year of preschool and is astounding me all the time.

This life is full of beauty and joy and love.

But damn it, I'd enjoy it so much more with a little bit of sleep.

Happy Heart Day

To the beautiful, silly, hilarious one who stole my heart just over four years ago.

On this day, four years after the open heart surgery that saved your precious life, I am oh so grateful.  Grateful that the surgery gave me you.  I can't even imagine life without you, and I never want to have to try.

Happy 4th Heart Day, sweet Cora.

Easter Eggs