If I Had Known -31 for 21

If I knew then what I know now, what would I do differently?  If I could talk to myself in those early days after Cora's birth with the perspective I have now, what would I say?

I've been asking myself this question over the past couple of weeks, not sure how to answer.

Would I give myself words of wisdom, telling myself that it would all be fine?

Would I try to take away my initial thoughts and feelings and experience only the joyous moments?

I've realized that if I had known what I know now, there's not much I would change.  It's clear that I still have some feelings to work through.  As I've been writing every day this month, my thoughts surrounding Cora's birth and the months leading up to surgery keep bubbling to the surface, some of them painful still. 

But I am also learning that even though taking away my initial sadness, disappointment, frustration or fears may make me feel less guilty, or may make me feel like a stronger person or a better mother, I really couldn't and shouldn't take those feelings away.  They were things I had to live.  They were things I had to learn.  And they are part of me.
  
What I wish I had known was that all of my feelings were okay.  

I wish I had known that I didn't have to act like I was so strong and confident all the time.  That it was okay to be weak, okay to cry.  That it was okay to be afraid as I watched my baby deteriorate before my eyes.  That it was okay to love my daughter so completely and at the same time feel conflicted and so inadequate.

I also wish I had known that it was okay to rely on my instinct as a mother.   I wish I had known that Cora having Down syndrome, a heart defect and a hospital stay shouldn't have diminished that.

I would tell the nurses that I would not put her in the isolette to "sleep and grow".  I'd tell them I was going to hold her while she slept, and that she could grow feeling safe and warm in her mother's arms.  I would advocate more for myself as a mother, not only for answers to my medical questions and to get her the care she needed.

Photo by Shon Taylor

I would tell myself that strength would come.  That even though I didn't feel like the infinitely strong person that my friends somehow saw, that Cora would bring me strength.  That loving her was already bringing me more strength than I could imagine.  That my role as her mother is what I am meant to be: strong and weak, joyous and sad, confident and afraid.

And that all of it is okay.

Photo by Shon Taylor

Fancy Footwear- 31 for 21

I'm happy to say that after about 10 hours on the phone to and from Cora's pediatrician, our insurance company and the orthoticist (in addition to requests from her physical therapist and chiropractor), we finally got Cora's Sure Steps foot and ankle braces last week.

If I didn't have a background in insurance billing and coding and authorizations, I may have given up some time ago. 

But now, Miss Cora has some snazzy new kicks. 

Pretty tiny for part of a $2000 pair of foot braces, huh?

Cora has pretty low tone, which has put her a little behind the curve on learning the gross motor biggies:  walking, crawling and climbing.  It also makes her ankles pretty wobbly and significantly pronated.

Whether she's not motivated due to lack or interest or because it's so hard for her, she's been pretty reluctant to make consistent progress.

But I have noticed her wanting to scoot around more, and just being more interested in movement lately.  She's still somewhat hesitant to get on her feet, but will pull to stand if she is right next to me, and will move her feet in a walking motion if she is held under her arms.

We are hoping that with the new-found stability her braces offer, that she'll feel more confident in standing and that she will start to make a little more progress in the mobility front.

Who knows?  Maybe she'll even surprise us by getting up on two knees and four-point crawling finally.

It's all to be seen.  In the long run, I'm not particularly worried, since I know that when the time is right she'll be running around everywhere.  And like many mothers have pointed out, having a less-mobile child does have its advantages.

But I will definitely enjoy watching her explore her word from a vertical position when the time is right.

Up a size to a huge size 4 to accommodate her new orthoses!

The Cutest Little Clown - 31 for 21

You may remember that I love dressing up. Halloween has always been a favorite holiday around here, since I love having an excuse to pull out my old costume box and put together something new.

Last year Miss Cora was a ladybug, thanks to my crafty little glue gun and a few supplies.

This year I had something else in mind.  A clown.  But not just any clown.  The cutest little clown.  Taking some inspiration from Etsy, I made my own Beanie clown costume.  Onesie embellished by yours truly, the most adorable miniature hat (that wasn't as small as I thought it'd be once I put it on Cora's itty bitty head), tutu, little yarn hair falls, and some Etsy purchased leg warmers.

A couple days ago I put her in it just for photos and she had a complete meltdown.  So today I started Signing Time before I got her dressed. Genius.

Without further ado... I give you... my cutest little clown. 

 

Getting ready for our Halloween party on Sunday, I realized that I just couldn't go without my own costume.  So I pulled a few pieces from my costume box for my own understated clown to complement my girl.

And seriously!  My favorite Mom and Daughter picture ever!

Hits and Misses -31 for 21

The rainy, rainy, wet and soggy weekend had us cancelling our second attempt at outdoor family photos this weekend. Boo!

But it did allow for some other fun things: a trip to Ikea, a Halloween party, and a morning at The Warehouse Cafe and Market for some yummy local food and a toddler's art class.

Cora hung out with the big kids (some 2, 3 and 4 year olds) and drew with crayons.   Lately her forays into art have resulted in defiant attempted crayon eating, paper ripping and lots of throwing.  So we were excited to see her play along and color.  Until she decided that it was way more fun to just throw things...

We wrapped up the weekend with a big pot of tortilla.  Mmmm.  That's what I love about this weather... 

Sad Saturday- 31 for 21

"I think I've discovered the secret of life-

You just hang around until you get used to it."

                                                                   

Charles M. Schultz

Daddy Love - 31 for 21

Have I mentioned how amazing Cora's daddy is?

Or how very much he loves his girl?

Luckily, the feeling is mutual.  

They are silly and sweet.  In fact, as I write this they are snuggled up together sleeping, away from the camera's view.

It's safe to say that Cora loves her daddy's silly sense of humor.

She loves his tickles and the way he reads her favorite books in funny voices complete with bad accents and the way he can't seem to put on her pajamas without starting a giggly wrestling match.

When Cora was born he never wavered.  While I cried and worried aloud, talking through my tumultuous feelings, he listened and supported me and he was rock solid for Cora.

He always seemed so much stronger than I was, so calm in stressful situations, so much better equipped to deal with everything.  Whether or not that was actually the case, his strength helped me be strong.  And his strength allowed me to be vulnerable when I felt like I was falling apart.

His love for his daughter has captured my heart again.

So thank you to my wonderful husband.  Cora and I love you very much.

Shouldn't I Have Known - 31 for 21

Reading through last year's 31 for 21 posts for Down Syndrome Awareness month, I stumbled across one of my favorite posts.  I thought I'd share it here again, as I often think about my connection to Cora...  How I feel like I've always known her.  How she is truly perfect just as she is.  

Shouldn't I Have Known?

In the months since Cora was born I've had a few moments of reflection and wondered if maybe I should have somehow known that something was a little different during my pregnancy.  At times I've even thought that I should have known that something was "wrong."

For some reason I always expect myself to be more in tune with myself and my body than I really am.  I have learned time and time again how intertwined my mind and body are; usually after I end up making myself sick with stress and worry.  And strangely, every time I am surprised that my body reacts.  There have been times too when my body has been the barometer that something is off with me, whether it be negative recurring thoughts, fears or anxieties that I try to suppress.

I always thought that I'd instinctively know when I was pregnant.  And I think that in some way I did.  Although, after my first negative pregnancy tests I was so stubbornly convinced that I wasn't that I ignored all the obvious clues for several days. (That little joke was on me!)

Yet despite my off and on relationship with my own body, I definitely felt very connected with Cora during her months in utero.  At one point in the early months, during a few days of doubt and worry I convinced myself that something was wrong, that she had already not survived. But in the midst of my fear I suddenly felt the strong and powerful presence (distinctly female) letting me know that everything was fine.  That she was fine.  Buoyed by that knowledge I remained confident in her perfection throughout the rest of my pregnancy.

During my last few months of waiting for her I practiced self hypnosis to prepare for my natural home birth.  While it may seem "woo woo" to some, the experience was immeasurably valuable during the pregnancy, during the labor and very much so during the stressful weeks following her birth.  And although it was sometimes a struggle to quiet my anxieties, I really felt like it helped me maintain a communication with Cora before she was born.  I still do feel this.  And reflecting on that, I've asked myself the question, "Why didn't I know?"

And the answer I've come up with is that I believed everything to be perfect and fine because it was.  

The initial shock of her diagnosis immediately after birth shook that belief hard.  I thought that I was so wrong to have naively believed everything was perfect.  But now I know the truth:  that I knew her already, even in those early months inside, when the secret of her extra chromosome was still hidden, and that I innately knew that she was and is perfect just as she is.

And as nice as it is to re-discover this truth about Cora, it's also nice to discover that I knew it all along.