Wednesday, June 1, 2016

Bittersweet Endings. Bright New Beginnings

Tomorrow is Cora's final day of preschool.

This simple fact has been causing my breath to catch in my chest for the past several days.  This little girl, this piece of my heart, has somehow gotten to this moment, and it feels sudden and shocking and bittersweet.

I was so terrified when she began school.  She was so tiny.



She didn't speak.  She was starting at a community cooperative preschool that expected kids to be able to use the bathroom independently, serve and clean up after themselves and negotiate a new, exciting and scary world.  She would be going outside to an enormous playground with adults watching from the sidelines, when all summer I had been one step behind, spotting her all the way.

She had only started walking a few months before.  She hadn't begun to potty train.  She could sign fairly proficiently, yet nobody at her new school knew sign language. Her new teacher had no experience with children with intellectual disabilities. There were so many worries to add to my list.

Yet look how far she has come. 


Today, when I dropped her off at school, a crowd of four boys started yelling from the playground and running toward us, yelling "Cora's here!"  As the kids walked in a line, hopping into the building, I witnessed a small skirmish between two young boys. One of them bitterly responded that the other boy wasn't his friend, to which the other child said, "Yeah, well I love Cora."  "No, I love Cora!" came the counter-attack.

After Cora gave me a final hug goodbye, I walked away, trying not to let the other parents see me holding back my tears.

So yes this week feels awfully bittersweet.

Don't get me wrong. We are so excited for next year.  We are thrilled that Cora will be going to her neighborhood school alongside peers of all abilities in the general education classroom.  We are delighted that the kindergarten teacher that attended her IEP meeting specifically requested that Cora be in her classroom, and called me on my phone a couple weeks ago to tell me that she was excited that Cora would get to be in her classroom and also in her Early Kindergarten Transition program for a few weeks this summer.  We are excited and terrified.  And we are so so hopeful.  For we know that this is one more step in Cora's process of learning to navigate this world on her own two feet. Yes, she will have a lot of help.  Help from us, from her teachers and therapists, from her friends and family.

But it is she that is leading this path.

It is she that is sharing her soul and her joy, and her marvelous and uncanny ability to get and give so much love.  She is the one who shines, who surprises people and who makes connections wherever she goes.  It is her path.  And we are here to follow her and support her as she goes.

As the school year has been winding up, I've found myself getting frustrated with the work involved and eager to leave this phase behind.  But now I am seeing what we are leaving and looking at it through new and sentimental eyes. And I'm thankful for these moments, when I'm given the chance to have this clarity to appreciate just how important an experience this has been.  Cora has community. Cora has friends. Cora has adults and children who care about her and want to see her do well and be happy.

Cora has made a mark, as we always knew she would.

And so we will leave this phase behind, acknowledging the marks she's leaving behind her and looking forward to the many yet to come.



Sunday, April 10, 2016

On Sibling Day

Something that feels like magic has been happening around here.


These two little girls, who have always adored one another, have recently started playing together all the time.  We can usually expect bursts of 15-20 minutes of giggles and running around before Cora gets her feelings hurt and someone needs to intervene.

But in the past week, they have amped up their play time exponentially.  We're talking hours of racing around, chasing one another, making up sweet little games of "Follow me!"  "Now you do it!"  "My turn," all set to the tune of the most infectious giggles.

Sweet, unsolicited choruses of "I luh you, Wuuby!" and "I yuh you, Co-wa!" punctuate the giggles. Funny conversations and negotiations keep me smiling as I watch them skip through the house.



For Cora, who has almost always wanted near-constant interaction, most of which had to come from me, this is a big deal.  And for Ruby, it is priceless too.

It's making me start to think about how things will go next fall, when Cora goes off to full-day kindergarten. I've been so wrapped up in preparing for her upcoming IEP meeting and working to secure the ideal supports, services and placement that I often forget how very strange it will be to send her sweet little self off five days a week for several hours. I forget how much we will miss her. For me, it will be a big transition, one that I am sure will be accompanied by a lot of tears, but for Ruby it will come as a big shock.  Her companion, her sweet silly sister.... her best friend will be gone a lot.

I guess the silver lining is that I will finally get some of the one-on-one time that I so appreciated with Cora and haven't gotten much chance to have with Ruby.  But oh, we will miss this big sister girl.

We have a few more months of this precious time.  Time to watch these two grow and change, and get ever closer.


Wednesday, April 6, 2016

Happy Heart Day- Five Years

Today is a day to celebrate just how far this little girl has come.

5 years ago today she went through something unbelievable just to get the chance at this life.  5 years ago today I trusted the nurses, doctors and surgeon enough to hand off my tiny baby for her heart to be stopped and made whole.

It may have been the hardest thing I've ever had to do, but my daughter seemed to take it in a stride. She was no longer sickly and gray, struggling to breathe, and unable to eat.  She could grow, she could nurse, she could thrive.

And look at her now.



Today I celebrate this amazing little person.  This girl who has grown so much, and who has been the reason I've grown so much too.

We pulled out the book that shows the story of her first year.  We flip through the pictures and tell her how when she was a baby she was very sick and needed an operation to fix her heart.  She pores over the pictures, saying "Poor baby Cora.  So sick.'  She touches the photos that show the wound on her chest and feels sorry for her baby self.  "So hurt,"  she croons. Then she tells me "All better," and turns a few more pages to see her baby self smiling and laughing, getting cuter by the minute.  "Baby Cora's so cute..." she says.  We look at the scar on her chest, a white line that stretches the length of her sternum.  We talk about how strong and brave she is, and how wonderful that her doctors helped fix her heart.

It makes me happy to hear her tell the story of her heart repair with her short little sentences.  I get tingly with pride when she shows me her scar and tells me how her body can heal.  It makes me smile through a few tears seeing just how far she has come.

Happy Heart Day, my love.


Wednesday, March 16, 2016

The Parent's Guide to Down Syndrome

A few months ago I was asked to review an incredible project: a new book called The Parent's Guide to Down Syndrome; Advice, Information, Inspiration and Support for Raising Your Child from Diagnosis to Adulthood, by Jen Jacob and Mardra Sikora.  This book has been heavily promoted among parents in our community, and has been the result of an intensive collaboration.

I was happy to have the opportunity to contribute a small part to the section on open heart surgery, and have been excited to review it here on Our Cora Bean.

I began reading my free copy of the book in January, just before my sweet girl's fifth birthday. Most of the time the events and feelings surrounding Cora's birth and first few months of life feel like they're in the distant past and are so far removed from my current reality.  So I was honestly surprised to find myself drawn so viscerally back to my initial feelings and memories from those early days. 

We learned of Cora's Down syndrome diagnosis after she was born, and I spent my days during her NICU stay stationed by her isolette, poring over books like Babies with Down Syndrome.  Without the convenience of a smart-phone or access to the internet, and with very little real knowledge about Down syndrome, that information felt like my lifeline. I loved the information, the photographs, the parent accounts and the descriptions of what to expect during early childhood. But it still felt like information was missing, and I found myself having so many more questions.

Now, as I watched my almost-kindergarten-aged daughter race around the house giggling with her sister, I was again reading a comprehensive book on Down syndrome designed for new parents, but this time I found myself not only wiping away tears, but nodding my head in agreement, and being heartily impressed by the resources and varied perspectives that the book offers. 

The book starts with explanations and definitions, works through the diagnosis (both prenatal and post- birth), gives input on finding support, processing and sharing the news, and then moves into common experiences over the course of your child's life. It covers medical care, surgeries and hospital stays, feeding, and many other challenges of those early months, as well as insight on day-to-day life. As the book progresses, it discusses your child's education, therapies, and the journey from infancy to adulthood. It touches, at least briefly, on a comprehensive range of concerns and experiences and seeks to give the reader a big picture, while offering details and resources for more information at the end of each well thought-out section.

Throughout, personal accounts from parents, siblings and people with Down syndrome pepper the pages, (including some of people I know online and in real life!) giving insight into the evolving and varied points-of-view of the families, and offering the immensely valuable perspective of individuals with Down syndrome.  So often it is the families of people with intellectual disabilities who speak for them, so including a range of voices of those with disabilities is invaluable, allowing us to see the people the book speaks of as real, whole, valuable individuals, and also helping to offer a glimpse of future possibilities to parents concerned for their children's futures.

Overall I was impressed with the range of information covered and the large number of voices included.  But out of all the great things included in The Parent's Guide to Down Syndrome,  my favorite may be the oft-repeated reminder that each of our children are unique, and that their experiences will be their own. When your child is a baby, especially a baby with a diagnosis that brings with it stigma and so many unknowns, it is natural to seek out the one right answer, the one right experience, the one example that will show you a picture of your child's life, and your family's lives by proxy. But this book wisely points out that there are no right answers or right experiences, that the path of each of our children and each of our families will vary widely, and that that is part of the beauty. If each parent reading this book were able to truly take that to heart early on, I'm sure it would help alleviate much concern and worry.

For me, as I fret about the upcoming IEP process that will determine so much of my daughter's future for the next dozen years, it is a poignant reminder to read Jen Jacob's words,  "Life is, of course about the journey for our children, but also so much about our often-parallel journey alongside them."   I appreciate the opportunity to recognize and respect my daughter as the unique and amazing person that she is, while still recognizing the important role that we, her family, play as we support her along her way.

Interested in getting your own copy of this book

  • You can buy it here on Amazon or Barnes and Noble.
  • You can enter the giveaway on Our Cora Bean to win your own copy!  Enter here: a Rafflecopter giveaway.
  • You can enter the Grand Prize giveaway, including an "I love someone with Down syndrome" tote, an advocate coffee mug, a variety of books including The Parent's Guide to Down Syndrome, a t-shirt, stickers and more (over $150 value) enter here:  a Rafflecopter giveaway 



Tuesday, January 12, 2016

Happy Birthday, Cora!

I'm sitting here, kids asleep, a slight buzzing of excitement coursing through my stomach and chest every few seconds. Tomorrow is Cora's fifth birthday.  Five.Years. Old.  How did this happen?  How did my tiny baby turn into this lovely little girl?  It's happened before my eyes, all the moments stretching into all the long days, the seasons and years soaring by.

This little hilarious, silly, loving, exasperating, strong-willed and amazing little girl...


Sometimes my heart feels like it can't contain my love.  This girl went and made me a mother and turned everything I'd ever known upside down in the most perfect way. 

She lives with joy and shares it with contagious abandon. She loves deep and hard and I am so blessed that she shares that love with me.

Happy, happy birthday, my sweet girl. I couldn't be more proud of you.



Saturday, October 31, 2015

Day 31- Halloween

Tonight I took my sweet little birdie family out in the pouring rain.

It was a blast. Cora has been talking about Halloween since last year's trick-or-treating adventure. She's been asking about it for weeks now, and has been practicing saying "trick-or treat."  She said it perfectly to all the neighbors whose houses we visited, along with a polite "thank you."  Ruby was a trooper, trudging in the rain, with her little feathers plastered against her head and her tutu tail drooping down. She said "bye" to a few times, grabbed candy with the best of them, and tucked it away in her little purse.  Oh so sweet.

I managed to snap a few photos of my flapping little birds before we headed out into the pouring Portland rain. I love these costumes. They were so much fun to make.










 

The bird family.


And the out-take. Can't stop laughing at this one.


Happy Halloween.

Friday, October 30, 2015

Day 30- How it Flies

As Down Syndrome Awareness Month (or as some of us like to call it, Down Syndrome Acceptance Month) is wrapping up, I realize that I haven't said very much of what I'd hoped to say. There just hasn't been the time, or sufficient sleep to string thoughtful words together in the small windows when my girls are sleeping and I am not. It has felt overwhelming to post something every day, and so much of what I've posted has been light. I've been trying to put together a way to sum up what I really want to say. But my ability to provide enlightening or profound insight feels flat, and so instead, I want to re-share something I wrote in February of this year, shortly after Cora's fourth birthday. It pretty much sums up our life as it is... busy, messy, exhausting, sometimes overwhelming, and still beautiful.

The other night I had the rare experience of lying down with Cora at bedtime.  Usually I am in charge of the wee-one, who still wants only her mama at night, and has a pair of lungs that can easily keep her older sister from drifting off to dreamland.

I held her little self close, and smoothed her hair, whispering to her made-up-on-the-spot stories about Cora and Ruby and listened to her giggles.  After the days of listening to her argue and yell, always wanting to do things in her own little way, which seldom really jives with the way it works best for me... well, that little snuggle session felt pretty sweet.

And I couldn't help but thinking, "Oh my word, this girl is four, she is FOUR, she is four."  How could four years have already passed mothering this little turkey?  I had to make myself remember her tiny little baby self, tucked up in the NICU, hooked up to her apnea monitor, getting milk through her NG tube, and even getting handed to a kind nurse decked out in scrubs for her little body to be opened up and her heart be made whole.

 

All this time has passed between those moments.  My baby has become my little girl.  My silly, creative, curious, lovely, and sometimes infuriating little girl.  It's a trip, this parenting thing.

It changes oh so fast.  The moments when you feel stuck and overwhelmed, the moments when you feel blissfully at peace, all of them keep flying by.


These days life feels pretty different than I may have thought it would four years ago.  Our days are filled with song and dance, imaginative play, art projects that barely seem worth it they're over so fast, endless cleaning and constant errands.  They're filled with the most incredible little preschool and a very funny baby sister.


 They're filled with a strong-willed little girl who likes to show us who's really the boss.


They're filled with play-dates with new friends, and watching my shy little girl keep mostly to herself and then talk and laugh about how much fun she had after her friend goes home.  They're full of conversations with other parents that aren't always about Down syndrome, and these days often with parents whose own children don't have disabilities.

They're full of way too little sleep for me, a to-do list that never ends, and a feeling of always being stretched too thin and needed too much.  They're full of never-ending runny noses from school, and long rainy days.  They're full of missing my own friends and always telling myself how I need to prioritize my self and my adult relationships, too.

And they're full of laughter and games of peekaboo (or "kaboo!" as Cora likes to say), and hiding under the blankets in the guest room.  Skype dates with family, and long walks in the stroller.


They're full of life.  It's not really what I had pictured it to be.  It's pretty ordinary, largely exhausting, and overall a beautiful blessing.

My life with my awesome big four year old girl, and her sweet little sister.