31 for 21- Day 21: Blog Hop

Today, on the 21st of this month of celebrating Down Syndrome Awareness, I am honored to be part of a blog hop.

If you've hopped here for the first time, Cora and I welcome you!  Scroll down for previous posts to read more about us.

If you're a reader of my blog and would like to check out other blogs that are also honoring 31 for 21, just click on the button above.  (And if you like a post, leave a comment or even become an official follower.)  What better way to raise awareness than to visit the blogs of other families that are posting about their lives with people with Ds?

Woo hoo!  Cora thinks this is gonna be fun!

31 for 21- Day 20: Faith and Down Syndrome

Today’s shared topic is Faith and Down Syndrome.  It’s a topic that really had me a little stumped at first.  I contemplated skipping it.  What do I really have to say about faith and Down syndrome?  Is there a connection between them for me?  In truth, the subject (at least the subject according to me) has been pinging periodically in my thoughts and I’ve been hoping to be able to develop my feelings on the subject.  So I’m attempting to take this opportunity to stretch myself a little and explore what this means to me.

At the time of Cora’s birth I honestly wasn’t very focused on my faith. Caught up in the long-anticipated arrival of a child into my life, I was pretty single-minded.  In my heart I knew Cora already, knew that she was meant to be with me, but she was still a mystery.  And I certainly didn’t have a clue what her arrival would come to mean to me.

Then, when she was born, the initial shock, pain and anguish was blinding.  For a short while at least.  Not to say that I haven’t struggled with her diagnosis or experienced pain since then.  I absolutely have.  But with our mad rush to the hospital with a blue baby, and the news of her serious heart defect, everything was suddenly so precious, so poignant and so seemingly precarious.  How could I be suddenly faced with the risk of losing this baby I had wanted for so long?   

And in all honesty, the reason I was able to accept her diagnosis early on was that I began very powerfully to feel that she was given to me for a reason, regardless of whether I understood that reason.  Perhaps that is a simple sentiment, clichéd, even, but for me it began to resonate powerfully.

In the midst of feeling slighted and punished and wailing “Why me?!” into the universe I came to some of my own answers.  I know that many parents of children with disabilities are irritated by society’s opinion that they must be special themselves.  Must be stronger than the next person.  Must be more humble and patient than the next person.  Because it really isn’t true.   We’re not heroes.  We really are no more special than anyone else.   

But I do believe that I am specially and uniquely suited to be Cora’s mother.  I believe that this was a position carefully chosen for me.  Chosen by God, of course.  Chosen by the soul of my daughter and chosen by my own soul.  And this knowledge was secure in my heart, even when I was grieving what I thought I had lost.  Quite simply, this is my faith.

The powerful love and acceptance and sense of community we’ve shared since Cora’s birth has also strengthened my faith.  I truly believe that the far reaching love, thoughts and prayers that were sent to us in her early hospital days and during her surgery are largely responsible for the wonderful outcomes.   Despite all my worries and fears, I will never forget the peace I felt when we finally handed Cora off for her heart surgery, the calm knowing that she was in perfect hands.  That moment was probably one of the closest I’ve come to my own perfect faith.

The fact that she has Down syndrome is not irrelevant.  Whether I am her mother because I am somehow stronger, more special or more equipped to be is not the question.  I am her mother because she was meant to be in my life, because she was meant to change my life and my perspective, my values and my sense of self.  She was meant to change my direction, give me focus and clarity.  And I have faith in that.

31 for 21- Day 19: Wednesday Fun

It's been a day of fun under our Western Oregon overcast dreary skies. For that we are thankful, since we can expect a lot of wet over the next few months. Dry is great, since it gives me and Cora some outside fun, which she LOVES.

For us, it's a great time of year. Less sun is not too bad when you're pretty much lacking pigmentation, a trait that Cora will one day most likely not be thanking me for.

The worst of her cold seems to have passed, so we've been passing the day giggling like little fiends. For some reason things are very funny to Miss Cora today. She cracked up for quite a while playing peekaboo today along with some of my own creative variations. Oh what I wouldn't give to have a video camera installed on my forehead for those occasions.

She has also started this new game that I get a huge kick out of. I've been trying to teach her to clap for some time. While she likes it when I clap her hands together with a "yay!" she LOVES it when I clap mine. For a while she's been holding onto my hands when I clap. But in the past couple of days, she's started to pull my hands together and push them apart to make me clap. Laughing all the way, ha! ha! ha! You think kids with Ds aren't smart?! This little girl is clever!! She also moves my hands for peekaboo, although won't use her own. Funny little trickster she is!

I leave you with some hilariously cute photos from our outdoor excursion today. Yes, she's pretty much the most adorable thing ever! And maybe tomorrow I'll up the ante and start posting about more serious, real Ds things. Or maybe not...

31 for 21- Day 18: Sweet Baby Love: Our Rituals

Today I've been thinking of the rituals that Cora and I share.  Those cherished recurring moments in our days.

Like that minute when she's finished nursing and relaxes on the nursing pillow, snuggled in tight, gazing up at me with the sweetest little eyes and a content satisfied face.

Or the first 20 minutes of our mornings spent in bed, singing, smiling, giggling, and babbling (and usually letting Daddy try to sleep).

And stopping by the mirror to wave and smile at the cute baby and her Mumma.

Or getting settled into sleep, both of us lying on our sides, nose to nose, her tucked in a little ball with her feet in my lap, pacifier in mouth.  I think Cora thinks she's putting me to sleep too, since she usually pats my face as she drifts into dreamland.

And that smiley, giggly time just after her baths, complete with a jojoba oil massage.

These ephemeral little rituals are such a lovely part of my days.  I'm so grateful for these small moments and know that it won't be long before they fade into our history and make way for new ones to come.

31 for 21- Day 17: Sniffling and Sneezing

Today was a pretty typical Monday.  Work for me during naptime (which was strangely short this afternoon), a walk in the cold morning air, a visit to the chiropractor for Cora and for me, and lots of snuggling. Cora seems to have come down with her first cold.  I guess it was a little presumptuous of me to be patting us all on the back for her having stayed healthy all this time.

But it seems to be pretty mild at the moment, and we're hoping it gets better rather than worse, especially since we have a date with Cora's friend Anthony and his awesome parents later this week.

I'm fighting my own throat tickling, a real bummer since I had a cold a few short weeks ago.  So it's been a pretty mellow day.  I'll be taking my usual supplements: Vitamin D, a food-based multi, fish oil and probiotics, in addition to some extra immune support.  Cora gets her own probiotics, but the rest she'll get second hand from me.  Let's hope they do the trick.

On a fun note, we just got our first Baby Signing Time video in the mail today.  Cora is already enthralled, so we're hoping it will inspire us to amp up our signing efforts and hopefully give Cora a leg up too. 

Happy Monday.

Little sniffly, sneezie Beanie. Happy enough as long as I stay close by.

31 for 21- Day 16: Sunday Night

It's almost the end of the day for me.  Sunday night.  Cora is being put into bed by her Daddy, the dishes are done, the groceries put away.  Small pieces of evidence of the fun we had this weekend still linger in piles throughout the house, daring me to put them away before the week starts again.

But I'm in my pajamas, ready for a glass of wine and trying to decide whether I have it in me to work on Cora's Halloween costume tonight.  A batch of cookies is baking in the oven.  Cookies and wine.... mmmm.

I was told that I could expect a guest post today by a certain unnamed member of my small immediate family, to no avail. So I am sitting here with absolutely no agenda, typing out this post.  Can't get behind on my daily posting commitment.  So far I have actually enjoyed this more than I thought I would.  Originally thinking it'd be a struggle to come up with daily posts, in a way posting more frequently has been sparking my thoughts. I write posts in my head throughout the day and just hope I'll get time to put them into words on the screen.  But today I have nothing profound to say.

So I will just say that I am thankful.  So thankful for my family, for all the blessings that we have.  As we put our girl to bed, the memories from today still make me smile.  Taking that girl swimming constitutes a lot of those smiles.  We need to take a camera with us soon to memorialize her bliss.

I hope that you've had good times with your families as well.  And for those little ones in my blogosphere that are recovering from pneumonia in the hospital, or just back at home after a long recovery from open heart surgery, I send you my thoughts also.

Goodnight.

 

 "I love the weekend!"

 "Look, Mum, I'm doing the splits."

 "Sitting on the slide by myself... no big deal."

31 for 21- Day 15: Called Out

This week I experienced something for the first time.  And yes, it took 9 whole months to happen.

At a consignment sale, the check-out woman gushed over the Beanie girl.  Then she asked me if I knew so-and-so.  I said that I didn't and asked her if I looked familiar.  She said no, then paused, and asked if we were at the Buddy Walk.  What a great way to ask or confirm that someone has Down syndrome!

It turns out her good friend orchestrates the Buddy Walk for a local community, which wasn't the Buddy Walk that we participated in.  But even so, it was a fun interaction and left me smiling as we walked out the door.  Cora even decided to display some of her silliest raspberries and smiles too.

Lately I've been wondering what people think when they see Cora and whether they are wondering if she has Ds. But the truth is, I really don't care.  I seldom volunteer that little fact when someone stops to say hello or try to get a smile out of my pretty girl.  But when involved in real conversations I'll share.  The other day I met a great woman at the pool with her 4 month old son (who weighed about the same as Cora).  We talked for about 20 minutes, during which time I talked a bit about Ds.  Judging by her reaction, it wasn't a surprising revelation.  And it felt good to talk about Cora and our lives, her diagnosis, and parenting.

I guess I am happy that Cora being recognized as a member of the club really made me so happy.  Early on I was afraid of how I'd feel when this happened. I am thankful that it was a positive interaction, since they may not realistically all be that way.  But so far, our experiences have been overwhelmingly good.  We've been blessed to be surrounded by people who have welcomed Cora with open arms.  Life is good.