Attitude... Who me? 31 for 21

Shhhhh.  Don't tell Mama I got to the computer.  She doesn't like it when I type on her laptop.  I'm not sure why.  I guess she doesn't like to share. 

Oh yeah.  This is Cora if you haven't guessed.

I have just a few things I want to say and I don't want Mama to know, cause it's kind of about her.  Well, about what she says about me, anyway.

Mama has been saying that I have something called "attitude."

Yeah, I know what that means.  What I want to know is why is she surprised?  I'm pretty sure she and Daddy both have "attitude" too.  I've also heard her whisper the word "stubborn" a few times.  Like I can't hear a whisper.  Didn't the audiologist tell her my hearing is great?

She's also been saying that I have entered toddlerhood.  Well, yeah!  I'm almost 2, you know.  Some people may not think I'm a toddler since I don't walk yet.  But that has nothing to do with it.

So yeah, I know that lately I have been expressing myself a little better.  So I don't like it when Mama puts on my bib... or my socks and shoes...  or changes my diaper and puts on my clothes....

So I am a little quick to cry or yell when she walks away from me....  And yeah, maybe I don't like to do the things that she asks me to, even though I can understand her and I used to do them all the time when she asked.   Like I said, what do you expect?

I know that some people think people with Down syndrome are always happy.  And I am happy a lot.  But sometimes I'm not.  And I am learning to let people know that.  Especially Mama.

But sometimes it's pretty funny, when I hear her telling other people (like Grammie for example) about me not being a perfect angel all the time.  I don't think Grammie believes her.  Because when I'm around other people I am pretty great.  That way they think Mama's just telling stories.  He hee!

Uh oh!  I hear Mama coming back to see what I'm doing.  I better go read my favorite book for a minute.  Maybe I should try not to be so quiet so she doesn't get suspicious.  Yeah, that's a good idea.

Okay, it looks like she's going to come play with me now.  So I'd better get going.  But just make sure that you remember about me and this thing called "attitude."  I like the sound of it.  I think I'm going to work this "attitude" thing a little more.  Oh, and please don't tell Mama about me using her computer.

It'll be our secret, okay?

This is me looking like a perfect angel.  But I think maybe Mama can see the "attitude" in my eyes...

So Many Paths- 31 for 21

I follow a lot of blogs by moms of kids with Ds. It's great, really. It can be so nice to know that I am not alone in my feelings and that there are people around me who can always relate.

I can't tell you how many times I've read someone's words and felt that I could have written them myself. Or have had others say the same to me.

Right now, since it's Down Syndrome Awareness month, there's a whole lot of blogging going on. There are a lot of people participating in the 31 for 21 challenge, participating in blog hops and posting on Facebook.

I've heard other moms say that sometimes it feels like "preaching to the choir"; that we don't have much to say that the other parents don't already know.  In a way that may be true, but we all blog for our own reasons, and those of us who do so to communicate with our peers in the Ds community seem to do it to find support and common ground, rather than just to educate one another.

But really, for each of us, it's all about where we are in our own lives, in our own journeys, in our own processes. We all have ups and downs. Sometimes we're sad, at other times blissfully happy.  At times we're angry and at others we're grateful. 

We've all had different ways of adjusting to the changes in our lives. Our paths to acceptance are all different, even if many of the emotions are the similar.

I love that I can read someone's perspective and be inspired, be challenged or be brought to tears. I appreciate that I can read someone's words and not relate, as well.  That I can see that we are all different individuals with different ways of raising our children and living our lives.

There is comfort in hearing from parents who can really relate to some of the circumstances in my life.  There is comfort in talking to my friends with young children with Down syndrome and realizing that we can honestly discuss things that are difficult to talk about and still understand one another, even though we live our lives very differently when you get right down to it.

I am grateful for the diversity.  For the community, as varied and eclectic as it is.

My own process in this blogging journey isn't altogether clear or planned out.  I don't necessarily have a theme or an overall message that I have defined.  I write what I feel at the time.  Sometimes it feels altogether unoriginal.  Most of my inspiration comes from Cora herself, but is obviously shaped by my thoughts and reactions to the world around us, our blogging community included.

I just hope to share a little bit about where I am now and about the life that we are living.  Sometimes I am full of joy and hope and the pure bliss of loving my daughter.  At others I am anxious and concerned about her future.  And at others I just get stuck in my own head.

It is an ever-evolving process, this life that I am living. 

If you're interested in checking out some of the blogs that make me think and offer varying perspectives, check these out:

The Unknown Contributor

Life as I Know It

With a Little Moxie

Mostly True Stuff

Gillian Marchenko

Going to the zoo, zoo, zoo! 31 for 21

I'm taking a Saturday break from too many thoughts or too many words.

Just wanted to share a few glimpses of our morning outing today.  Usually in October we'd be indulging in our Saturday ritual of coffee and bagels, but today with the sun shining bright, we ventured to the zoo.

This morning while talking about Cora's giant teddy bear (which she is afraid of, by the way), she signed "bear" for the first time.

So the bears were the first animals we visited.  She started out a little wary.

Then she started to get excited!

Then she showed off her new vocabulary by signing about it.  "Bear!"

She was so excited about the bears she even signed "bear" while watching the otters.

The sea lions were pretty amazing, as always.  The fish and the turtles too.

She was happy getting to pet the goats.  And she surprised us by "mooing" at the cows.

A glimpse of the regal she-lion, just for fun.

A great day for fun at the zoo!

Something Good- 31 for 21

Joy is getting you up from your nap, watching pillows fly as you nose-dive into the blankets, laughing so hard you can barely breathe.

How did you get so funny?  So sweet?  So adorable?  So you?

Today when you accidentally hit me with a book, I told you that it hurt mama.  You hung your head and tiny little tears welled up in your eyes.  You finally looked up at me, signed "hurt" and pushed your little face up for a kiss and pressed your head on my shoulder for a long hug that we both needed.

Oh my baby girl.  How did you learn to melt my heart so?

Your little face, your giggle, your burgeoning sense of humor, your sensitive little soul... how is it that I so often get to experience the bliss that comes from having you with me?

When you were born, I am ashamed to admit that I asked "Why me?"  I felt slighted, like I'd somehow gotten the short end of the stick.  Silly, silly me.

Now when I ask, "Why me?" I ask myself how I managed to get so lucky.   I must have done something so, so good.

Keeping Mama in the Pictures- 31 for 21

Today I read a beautiful post by a mother reflecting on wanting the imperfect photos of herself included in her family history.  She realized that in spite of her own self-conscious ideas of her less-than-perfect physical self, having her own image as a young mother with her children is something that needs to be captured for herself and for her children.
 

This post came just a couple of days after I heard a very similar sentiment from my wise beyond her years baby sister, who kept snapping pictures of me with Cora while we walked to the park and as I pushed her on the swing.  When I expressed discomfort at the idea of having to look at myself in my ripped pink tank top and old faded yoga pants, messy hair and glasses, carrying a few extra pounds that have stayed around since I’ve become a mother and that always seem to look so obvious in photos, she snapped those pictures anyway.  She told me that one day I will want to look back and see myself included.   

I have thousands of pictures of Cora, but few of them actually contain me.  If Cora could someday remember this time in her life, I know I would feature front and center in her memories, since I am central to her world.  It seems vain and unnecessary to purposefully omit me just because I am self-conscious.

Today while scrolling through my computer, I found a picture a friend took over a year ago.  I never shared the photo, but looking at it now, I see how much I love it.  

The look on my face shows how happy I am.  I was in my overly happy post-heart-surgery phase.  And Cora is so beautiful with her round little joyful baby face.  But it’s us together that I love.  Not a perfect photo, and certainly not a perfect backdrop, but it’s beautiful nonetheless.

I don’t think I’m quite ready to share the pink tank top pictures.  Maybe that’s something I’ll work on.  But in the meantime I will keep them in my folder and will resist my impulse to hit delete.

Dealing with Medical Worries- 31 for 21

Some of my first concerns after Cora was born were the myriad of common medical conditions for people with Down syndrome.  I read about all the things that are common in the Ds population: heart problems, gastrointestinal problems, orthopedic problems, upper respiratory infections, hearing loss, sleep apnea, thyroid problems, eye problems, leukemia, and skin conditions.  There are others too, and all together the list can be so daunting.  I mean, what isn't on the list?  And of course, the heart seems like the biggest scariest one of all.

When Cora was born at home and my midwife told me that she likely had Down syndrome, she also told me that her heart sounded good.  Of course, she told me that sometimes you can't hear problems right away and that Cora would need to be evaluated.  I was so relieved then.  She was born on a Thursday and we planned to get her in for a full examination and referral to specialists on the following Monday.

But then Friday morning brought us a baby who began to repeatedly turn blue.  An ER run quickly morphed into a NICU stay, where a pediatric cardiologist came in the late afternoon (thank goodness we didn't have to wait until Monday morning!) and told us about her heart defect.  After explaining what it entailed for a moment I thought I heard him say that it wasn't repairable.  But thankfully I was wrong.  Yes, the first three months of Cora's life were pure torture.  We waited for her already present heart failure to get worse and watched her deteriorate before our eyes until her heart surgery was done.  I had never experienced fear like that.

But you know what?  Three months into our life with Cora her heart was fixed.  She began a smooth recovery and her development finally started to take off.   

And that fear was lifted away like magic.

I've heard a lot of parents rattle off their new little one with Down syndrome's medical stats, often exclaiming at the end, "But at least he doesn't have a heart defect."  I can totally understand that feeling.

But for us, Cora having a heart defect was certainly not the worst thing that could happen.  Yes it made our lives pretty miserable for a few months.  But that part of her life is quickly shrinking into our past, and it encompasses such a short part of her history already.  And it definitely worked to make us stronger parents and to put it all into perspective. The fear of losing her forced my love for her front and center right away.  I didn't have time to slowly adjust to being a parent or to her diagnosis, or to gradually bond with her.  I felt like I had to fight for her all at once.  The mommy in me was born on January 13, 2011 and I came out figuratively kicking and screaming in a way my little baby with heart failure wasn't able to do.  Thank goodness we were able to do that for her.

So, I guess... all that rambling is to say that Cora's heart defect and her surgery, that big nightmare of the bad things that can happen, turned out perfectly alright for us. 

In fact, most of the heart defects in children with Down syndrome are very treatable now.  Some require surgery and some do not.  Most of the little ones that I know in person or follow in our  blogging world have had wonderful recoveries.  Of course, there are always a few that end up as true worst case scenarios, but those are few and far between.  Yes, the fear is there for a reason, but the chances are very very strong that your baby with Down syndrome's heart defect will not ruin their life.

Cora has had a handful of other medical concerns that may seem less daunting than an enormous heart defect.  Of course, when it's your baby and your life any medical issue seems daunting. But no babies have all of the conditions on that list of possibilities.

So far, in addition to open heart surgery, Cora has had a tonsillectomy and adenoidectomy to treat apnea and considerable airway blockage. She had complications and respiratory distress after that surgery, but it was ultimately successful and now her apnea is mild and doesn't require treatment.  She has mild nystagmus that is improving as she gets older and doesn't require treatment at this time.  She definitely has low tone and is pretty weak in developing gross motor skills.  She's actually getting fit for foot and ankle braces this week.  She has had excema, constipation and a sensitive system.  Her feeding is a little bit behind, complicated by a severe issue with food intolerance called FPIES (which is completely unrelated to Down syndrome) and delayed dentition, and a serious case of being majorly stubborn.

And there are a lot of things on that long list of possible conditions that she does not have.

Of course, she is monitored regularly.  She has a pediatrician, a cardiologist, an audiologist, an opthalmologist, an ENT, a sleep neurologist, a gasteroenterologist, a geneticist, a couple of chiropractors, a naturopath, and a slew of therapists from speech, to occupational and physical therapists.  She doesn't see them all on a regular schedule, though.  But even when she's healthy there are always check-ups.  It definitely takes a good team and a great pediatrician to manage all her care.

But all in all, it is manageable.  She is a healthy little girl who has seldom been sick.  We manage her appointments the best way we can.  Sometimes it seems difficult, but at other times it doesn't feel like a very prominent part of our lives.  I imagine that it is a more challenging experience than some parents probably expect to deal with, but there really is no way to know whether a child will end up with medical problems.  Even the best prenatal tests can't tell you everything your child will have to deal with.

After a prenatal test diagnoses Down syndrome, I am told that many doctors focus on all the possible medical conditions that can result.  And these possibilities can play an enormous role in the choice that an expectant parent makes about whether to continue the pregnancy.

But these tests can't tell you everything.  They can't tell you how hard you will fight for the life of your child.  They can't tell you how you will feel if you feel that your baby's life is in danger and how very precious that life will become to you.  They can't show you all the joys you will experience or the ways your child will change your life for the better, even if there are medical obstacles to face.

The list is really just a list of fears.  Each child's story will be different.  But each story has the chance to be a good, worthwhile and valued story, even if there are a few obstacles in the way.

Celebrate! 31 for 21

"Celebrate" was the theme last weekend.  After two long months without seeing my family, they came into town to walk with Team Cora Bean in the Buddy Walk.

Cora was a little shy at times, but seemed to know that the mood was festive, and she proved it by repeatedly showing off her brand new sign:   

"Celebrate!"  

There's no denying that she is ready to party when she makes this sign!

Cora with Grammie around the fire Saturday night, showing off her favorite new sign:  "Celebrate!"

So we followed Cora's lead and kept the party going as we celebrated all that her arrival into our lives has given us.

When Cora was first diagnosed with Down syndrome I had no way of knowing just how much we would soon have to celebrate.  Although at first it seemed like something to grieve, Down syndrome has undoubtedly brought something important into our lives.  Cora herself is our favorite part.  But with Cora has come new awareness, enlightening perspective, and immeasurable beauty.

It is because of Cora that we have come to know and love so many families who celebrate an individual with Down syndrome, so happy to be let in on the secret that Down syndrome is indeed a beautiful part of life.

"Celebrate!"

So this weekend we celebrated.  Today I celebrate.  This month I celebrate all of the individuals with Down syndrome and their loved ones, and encourage you all to do the same.

Partying with Daddy.  This is what celebrating is all about!

Hamming it up for Grampie.  Grampie, Cora and a bag of silly hats:  priceless!