Practically Perfect

The last several days have felt practically perfect.

The terrible-two-attitude that has been pervading so many of our days over the last month or two seems to have subsided, bringing back the happy, smiley, silly goose that makes every day brighter.

Of course a mama's love is unconditional, but days filled with whining, hitting and all-around orneriness get hard.  Especially when they start to feel never-ending. 

Our sickness offered a reprieve, in a way.  Our once-busy schedule was wiped clean and replaced with hours of television and snuggles.  My seemingly endless cyclical and over-analytical thoughts and stresses were calmed by our break from the outside world.

By the time we were healthy, both our attitudes had shifted.  I was less stressed.  Cora was happier, nicer, sweeter. 

Lately our days have been filled with laughter and play and way more fun.  And Cora is soaking it all in.  A couple of days ago at dinner Cora had the entire dining room eating out of her hands.  Blowing kisses, waving, and offering to share her food, she managed to captivate the whole room.  People just couldn't look away.  And I totally get it.  I can barely look away myself.

I've been wanting to capture this side of her in photos, but somehow it's elusive.  Yesterday we took the camera as we prepared to set off to the park as a family, excited to enjoy the beautiful weather and let our increasingly mobile girl get out some energy.  But alas, I put a damper on our mood when I caught sweet Cora's little chin in the clasp of her helmet.  We were both pretty shaken up by it, although she forgave me immediately.  A little more somber than before, we still managed a nice afternoon.

We're getting ready to pick up the pace a little in the coming days.  But I hope to keep our attitudes light, to continue to enjoy our moments.

It's amazing how good that can feel.

 

Not Just Sticks and Stones

Once again, I ask you to "Spread the Word to End the Word."  This is a campaign to end the use of the words "retarded" and "retard" as slang.

Because even when you "don't mean it like that", these words originally described individuals with cognitive disabilities.  Individuals like Cora.  Now these words have evolved to refer to anything that people want to call stupid, dumb, and worthless.  And that hurts. 

Even the medical community is using this phrase less and less frequently, aware that its use as slang has made it offensive.  It is now considered a disability slur, a hate word.

So take a few minutes to think about how using this word would make a mother like me feel.  How it would make anyone who loves someone with an intellectual disability feel.  How it will one day make Cora feel, when she hears it on the playground.   Even if you think that this is an issue of being "over sensitive", it's really just a matter of respect.

So take the challenge today and make the pledge.  Pledge to Spread the Word to End the Word and stop using the words "retarded" and "retard." 

For some of my favorite posts on this topic, check out these links:

The Unknown Contributor- It Wasn't Meant That Way

Fighting Monsters with Rubber Swords- Just a Word

Garden of My Heart- Retard

Love That Max- Do you get why this word hurts so much?

New York Times- A Word Gone Wrong

When Your Baby is Sick

Cora and I have spent the past several days quarantined from the outside world, tucked away on an air mattress on the living room floor in our jammies, growing weary of Signing Time (on my part, at least) and having some marathon nursing sessions.

It's a nasty cold/flu.  Cora hasn't eaten more than a few bites a day, and her little arm rolls are starting to shrink.  My own appetite unfortunately hasn't suffered, although the rest of my symptoms are like mirrors of hers.  Even our temperatures are identical today.

I took her to the doctor on Saturday morning, concerned that she still seemed to be getting worse 5 days into it.  I knew it wasn't anything really serious, but it's hard sometimes to keep the worries away when it's your baby.

So far we've been lucky with her strong immune system.  But the health scares we have had have been life-threatening.  And even when your analytical mind knows that things aren't heading in that direction at the moment, it's hard for your heart not to go there... hard to keep that fear completely at bay.

Daddy can still elicit those smiles...

 

 

I imagine that all parents have felt that fear at one time at least.  A high fever, a surgery, a rush to the Emergency Room, an accident, or even a more insipid nightmare like cancer.... these are the things we all fear deep inside.  And they are things that too many families have to face.

We've been following the story of a beautiful little girl a couple months younger than Cora who is fighting for her life in the hospital as I type.  Literally thousands of people are watching and praying for this sweet baby, hoping together that her life can be spared.  Another friend had a scare after her toddler took a fall last week, resulting in seizures and an ambulance ride, although thankfully her daughter is okay.

These things happen too suddenly.  Too easily for anyone's comfort. 

We try to push away the images of our own babies in their places, but there are moments when those fears seem like possibilities, when even the biggest love doesn't seem like enough to keep out the monsters.

A couple of days ago Cora asked me to read On the Night You Were Born.  By the end, I was sobbing.  My sweet girl looked up at me with concerned questioning eyes, and jumped into my arms for an embrace, arms glued around my neck and patting my back as I cried.

This kind of love feels unreal sometimes.  This biggest, most intense love feels impossible to sever... yet at the same time it can feel so precarious.

And so I hold tight to my coughing, sneezing, weak little girl.  She is safe for now, here in my arms. How I wish I could keep her that way.

A Case of the Sillies

Is there anything better than the sound of a toddler laughing?  Perhaps said toddler laughing at her Daddy...

Cora enjoyed Saturday morning playing with Nick while I slept in after a much needed night out with some girlfriends. 

I awoke to some serious belly laughing, and then got up to find that two of my favorites little silly-folk had captured their morning with the camera.

So on this Monday morning, in lieu of my own over-thinking, anxious and cyclical thoughts, I offer you my favorite little Bean and her Daddy Bean.  A case of the sillies, indeed.

Cute Has a Way of Shining Through

A couple of weeks ago we had a fun opportunity for a Valentine's Day photo shoot with Megan at Owl's Eye Photography.  We had a session with Megan when Miss Cora was 9 months old, just days after she learned how to sit up independently.  What a pretty little baldy girl she was.

We've actually been waiting for warmer weather to schedule our next session, since the Portland rainy season stole our opportunities last fall.  And then Megan held a giveaway for a mini-session.  I entered, with a feeling that our name would be drawn.

And lo and behold.... we won!

The shoot was brief with Cora happy for only about 5 minutes of the whole thing, and crying the rest.  But cute sure has a way of shining through.

Here are my favorites.  Thank you, Megan, for the beautiful photos of my favorite girl!

 

 

Congenital Heart Defect Awareness Week

Before Cora was born, heart defects were not something I thought much about.  A few years ago, a friend's new baby had open heart surgery with success, but it still felt like something that hadn't touched me personally.  All that changed when we were told that the reason our one day old baby was turning blue was because she had a serious heart defect that would require open heart surgery between 2 and 4 months of age.

Cora had a complete atrioventricular canal defect, which is one of the most common heart defects in babies with Down syndrome.

Research shows that without surgery, only 4% of children with complete AVSD (or complete AV canal defects) survive beyond 5 years.  In Cora's case, I sincerely doubt she would have survived to four months old.  She was in serious heart failure at the time of her surgery at 11-1/2 weeks old.

Of all the blessings in my life, I am most grateful for Cora's successful heart surgery.  Without surgery she would have had no chance at a life. 

Congenital heart defects are the most common types of birth defects.  Almost 40,000 babies are born with CHDs in the United States each year.  For children with Down syndrome, the incidence is much higher than the typical population.  Current information shows that approximately 40-60% of babies with Down syndrome have a heart defect.  About 35% of these children have AV canal defects like Cora.  Some of the more minor defects will repair themselves without surgery, but many require surgery.

Knowing that your tiny baby will have open heart surgery is something that no one wishes for their family.  In fact, many decisions to terminate pregnancies with a prenatal diagnosis of Down syndrome are due to the presence of a heart defect.  But as I have learned, the prognosis for children with Ds and a heart defect is very good.  Most defects can be successfully repaired surgically or resolve on their own in time.  Although stressful and painful, a diagnosis of Down syndrome and a heart defect is not as dire as it once was.

Since Cora was born, I have been in touch with so many other families whose children have undergone open heart surgery.  Some of them feel almost like family.  Many of their stories helped me as I prepared for Cora's surgery, and they inspired me to do the same for other families down the road.  I began to compile a list of blogs, stories and advice written by other parents of children with Down syndrome who have had surgery.  I only hope that our story and the stories of other families like ours can continue to help others who will go through this experience in the future.

If you would like to share your family's story about Down syndrome and open heart surgery or congenital heart defects on this blog, I would be honored to post it here.

Having a Baby to Benefit my Child with Down Syndrome?

The past few days I have been obsessing over the question of whether to try for another baby.  Stressing and obsessing, having dreams about taking pregnancy tests and going into labor.

I just don't know if I want to have another child.

While planning for children, I always said I wanted two, so my kids would have a sibling. My sisters are my closest friends and the sibling relationship is so important to me.  Yet, in the back of my mind I was thinking.... "Well, maybe one would be enough for me."

After Cora was born I thought that of course we'd want another child.  Everything I heard and read discussed how beneficial it can be for a child with developmental delays to have a sibling. 

We originally discussed starting to try when Cora turned two years old.  I mean, if we do have another child I don't want them to be too far apart, and I am not getting any younger.  Well, Cora just turned two.  And after searching myself up and down for the past few weeks, I think the only conclusion I can come to is that I'm just not ready.

There are so many reasons I don't feel ready.  Most of those reasons can be waved away by parents who've been there and for whom it's turned out just fine.  She's not sleeping well and never has.  We are exhausted.  She is still quite dependent on nursing and I don't want her to rush to wean.  She is so, so attached to me.  I love the one-on-one time I have with her, helping build her interactive and social skills and taking her to activities on a whim. I love having the freedom to just focus on her.

I know that having a second child could be a great thing for her.  I see photos of other children with their siblings and then I start waffling again.

But what if it's not a great thing for her?  What if we have another child with even more significant needs than Cora has had?  What if we have a child that doesn't interact with her or who interacts negatively?  Perhaps that's not likely, but it could still happen.  What if we choose to have another child solely for Cora's benefit and it doesn't end up benefiting her?

There is always a lot of talk on the Down syndrome boards about having another child after the birth of a child with Down syndrome.  For some it's whether and for others it's when.  Many fear having another child with Ds.  Some want the opportunity to have a typically-developing child or to help eclipse some of the pain surrounding their child's birth.  Many more want to provide their child with a sibling.    I can understand all these things.  Part of me would like the experience of parenting a typical child.  Part of me wants to have a baby at home and not have to send her off to the NICU and watch her have open heart surgery.  And part of me would even like to have another child with Ds.

In my heart, I think I would be sad if Cora never had a sibling, regardless of Down syndrome and whether it will be good for her social, cognitive and physical development. 

But I don't think that having another baby just for Cora is a good enough reason.  It's something that my husband and I need to want for ourselves and for the whole family.

So for now I'm putting it on the back burner.  I hope that in time I will know what I really want.  I don't expect all my doubts and concerns to disappear, but if we do decide to have another child, I want it to be because it's what we all want.