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.

Thursday, October 29, 2015

Day 29- Camera Shy

This cheeky little girl went to school dressed as a ladybug today.

She wasn't too interested in showing her costume to the camera, but was more than willing to check herself out in the mirror. 

You can see the first time this costume made its debut (albeit with a few items in a smaller size) here. My ode today to Throwback Thursday.

9 month old Cora.

And last year on Little Miss Ruby, at almost 4 months old.

Wednesday, October 28, 2015

Day 28- Because...

Monday as I picked up Cora from preschool, I heard her teacher begin the song to excuse her from class for the day, "Cora was here today, Cora was here today, I'm so happy that Cora was here today."  Cora ran up and gave a high-five to her teacher, lingering next to her as the next child was sung out of class.  The little boy gave a high-five to their teacher, then paused for a second and gave Cora a big hug.

His mom was standing next to me. She smiled and asked if it was Cora's birthday. Usually on the kids' birthday celebration days at school, the honored child gets to choose to give high-fives or hugs to the others as they leave class that day. I told her that it wasn't Cora's birthday, then we said our goodbyes.

Today during pick-up, Cora's classmate's mom approached me and told me that she asked her son why he gave Cora a hug at the end of the day.  She told me he looked at her matter-of-factly and said, "Because I love her."

Seriously. So sweet.  Little moments like these definitely show me that this is the right place for my girl. There may be missteps every once in a while, but Cora is definitely building a community for herself.  And that makes me happy, indeed.

Sunday, October 25, 2015

Day 25- The Very Best Thing

Do you remember those moments with your best friends, when you couldn't even look at one another without dissolving into laughter?

I miss those days. But I've got a pretty good proxy.

These girls manage to have full conversations that consist of nothing but giggles. It tickles me deep in my soul. This relationship has no need for long conversation at this point. They can entertain one another for hours with a few words, a few baskets of toys, some music over the speakers, and giggles for days.

Man, it gets me. It really is the very best thing.

Saturday, October 24, 2015

Day 24- An Impulse to Soar

Tonight I'm re-posting one from last October. One of my favorites. I am absolutely witness to this girl's impulse to soar.

Friday, October 23, 2015

Day 23- Kindergarten and Inclusion

"Awareness is the first step. Acceptance is the next. Practicing active inclusion, as an organic, messy, trial and error, imperfect journey is the work. When it's done with full knowledge that it will be a forever process and require vigilant practice, a type of omnipresent commitment to valuing and inviting the full personhood of each participant, we have arrived somewhere. When that is realized, we have not only achieved something, we have become better by doing so." 
- Heather Kamia

These are words that a friend of mine recently shared.  And they are resonating with me so much right now.

We are currently in the process of gearing up for Cora to begin kindergarten next fall. This time that I've been both fearing and looking forward to since Cora's birth is actually going to be here very soon.

I am very lucky to live in a place with vast and incredible resources for families like ours who are embarking on this process with the goal of ensuring our children an inclusive education. From Cora's very early days, I began attending meetings and trainings about special education process in our educational system. Before I even knew what any of the acronyms meant, (IEP, IFSP, IDEA, FAPE, LRE, UDL, ECSE) I held my small nursing baby in my arms, as I listened to parents and lawyers speak in what sounded like a foreign language and discuss resources that seemed so complicated and so alien.

Our local organization, The Northwest Down Syndrome Association, holds a 9 month-long training seminar for families whose children with intellectual disabilities are entering kindergarten the following fall..  I have been waiting for our turn to participate in the Kindergarten Inclusion Cohort for the last four years and now I am finally here. I can't tell you how excited I am to take in the information that has been thoughtfully and meticulously prepared over the last six years. Or how inspiring it feels to sit in a room with other parents who have similar goals for their children as we hear the advice and words of families who have done all this before us.

I know how important it is for me to be educated in Cora's rights. How important it is for me to represent Cora in the meetings we will soon have to discuss and decide her educational future.  How crucial it is for me to be her advocate and make sure that she will have the opportunities to learn and grow as part of her community along with her peers of all abilities. I know that her placement, her documented goals and legally-mandated supports are going to be critical in setting the tone for the start of her school years and in turn, the rest of her life.

And I also know that it is just the beginning.  We've been practicing for years now just by being her parents. We've been practicing by being a part of our community. We've been practicing in our wonderful preschool and with her doctors and therapists. And now it's time to pull together what we've learned as we broach this next step. A step that will continue to consist of lots of practice. I know that her IEP won't be able to write her experiences, and that many of her strengths and challenges are still unknown.  And I know that in this next phase there will be many rewards and many more struggles, just as there are right now.

I am trying to gear up for it as best as I can, knowing that it will be an ongoing process that will never end, as long as I am her parent and her advocate. And that I intend to be.

For more information about the goals of the Kindergarten Inclusion Cohort, and to see a wonderful documentary on the importance of inclusion, take the time to watch this video by the Northwest Down Syndrome Association.

Wednesday, October 21, 2015

Day 21- Progress

Recently I've gotten comments about Cora that I wouldn't have expected in the past. Several of the other adults at preschool have been impressed by what a good eater she is.

And as surprising as it feels, it's true. These days she is a great little eater. Oh, she will often tell me, "I don't like it," as she pushes away a dish of food. My response is always the same. "You don't have to eat it," and then I change the subject. More often than not, by the end of the meal she'll have eaten some of everything on the table. That technique has really paid off with her. She's also done really well with having family-style meals, where she gets to serve herself from a few different foods on the table. We started doing this to model snack time at her preschool. When she began school last year I was floored by how independent the students were expected to become. Each day the kids set their own place at the table, serve themselves, pour their own water, and then wash their own dishes and put them away. I could barely imagine Cora doing those things at the beginning. Yet she does, sometimes with reminders to stay on task.  And following this model at home has been really successful for her.

Her transformation has been about more than reducing picky eating and encouraging more independence. It's also been seeing her physical abilities improve dramatically. For the longest time, Cora simply didn't have the strength and tone to eat food that wasn't soft or easily dissolved. She wasn't able to break down fresh fruits, vegetables, or meats.  Until well past her third birthday her meals consisted mostly of thawed cubes of various soups and stews, along with soft things like pasta, yogurt and eggs. She seldom ate the same meals that we did. Adding to that was her severe issue with FPIES, which has since has cleared up. Now she is able to have formerly forbidden foods like soy, beans, peas and peanuts. We no longer have to pack food for her wherever we go.  I can't even remember the last time I made her a separate meal. The options feel endless.

Of course it's not a perfect system. She still acts like the 4-year-old she is, requesting cheeseburgers, spaghetti, pizza and ice cream several times a day. Sometimes she asks for certain food, only to balk when it's on her plate. But in general her willingness to eat a variety of foods, and her ability to do so is night-and-day compared to where she came from.

Overall the process has been really exciting to see. Sometimes, especially when your child has developmental delays, progress seems to happen so slowly that it is hard to believe the next stage will ever come. You choose whether to wait it out with patience or whether to intervene with various therapies. Sometimes it's a hard call to make. In general, our family has tended toward a model that is not extremely therapy-heavy. We have learned that for us, time spent as a family without constantly running to the next appointment is more valuable than always feeling the urgency to intervene. We value the advice and perspective from the experts and do partake in a regular schedule of limited therapy, but much of the time we trust in her ability to get there with our guidance and support.

It's an ongoing process, and one that involves asking many questions, trying various approaches, and often doubting decisions. But even though sometimes it feels like a lot of effort, it is awfully rewarding. There sure is something thrilling about watching Cora move forward. She is absolutely capable of so much. I remind myself often to keep my expectations high. And at the same time I try to keep in mind that her abilities and accomplishments, as proud as I am to witness them, are not the real indicator of her value. That ultimately, regardless of what she is or isn't able to do, or when or how she does things, she is enough.

Saturday, October 17, 2015

Day 17- Apples!

Today, for our third year, we went to the apple festival at our local nursery.

The kids get to run giggling through the aisles and dance to live music.  They get to paint pumpkins, and then play with hula hoops after making silly faces through carnival cutouts. 


For the first time today we actually waited in the line to taste about 50 varieties of apple.  So worth waiting in the line, even with two small kids yelling "apple!" (or in Ruby's case, "uppuh!")  We bought quite a few pounds of apples, in all different varieties.  I'm looking forward to tossing a few of the sweet little organic baking apples into a crisp this afternoon.

It's always a lovely way to spend a couple of hours on a beautiful fall day.