A Silly Night with Daddy

Last night was a first for me. First evening out with the girls without Cora. We spent a lovely happy hour sipping wine, eating food we hadn't made, and talking about our babies. Perhaps having conversations about other things will be the next step.

So Nick and Cora spent their own evening at home, and I returned to find these gems on the camera. Daddy is so silly.

90% or more

I've been thinking about prenatal testing for Down syndrome a lot lately.  We didn't have any prenatal testing, mainly because I never really thought anything could go "wrong."  And I guess I thought it wouldn't have mattered anyway.

There's a lot of discussion out there about the benefits of having a prenatal diagnosis.  Some wonderful members of my lifeline, the Babycenter Down syndrome board have an indispensable website, Down Syndrome Pregnancy, as well as a fabulous new book for expectant parents with a prenatal diagnosis of T21.  Following them online has been great.  To see them offering real and current information to parents who are continuing their pregnancies is so important.  Because, from what I hear, a lot of the information that is given to people with a prenatal diagnosis is out of date and presented in a very grim light. 

You see, a lot of people may not take the time to read the lovely blogs that I read.  To hear about Miss Ollie Faith, recently with her repaired heart and hear her momma's words.  Or read about Calvin and his family or any of the many parents and children I am lucky to be getting to know.  I am grateful to have access to these parents' thoughts and words and photographs and am excited about the growing community we are now a part of.   (Feel free to check out the list of blogs I follow on the sidebar.)

And sadly, more than 90% of parents who receive a prenatal diagnosis of Ds choose to terminate the pregnancy.  Right now I am listening to Cora babble in her bed, just awake after a good night's sleep, waiting for me to come in for my first morning kisses.  In a few seconds I will go in and see her beautiful little smile, all for me.  And I can't imagine not choosing to get to live with that smile.

It is heartbreaking that the decision about what life is worthy of continuing is being made every day.  Because how can you not think that this little girl is worthy of life?

There is a new prenatal test that will be available soon that should be able to diagnose Ds with a simple noninvasive maternal blood test as early as 8 weeks into the pregnancy.  And there's quite a bit of discussion about the likelihood that the termination rate will go up even higher, when people are afforded that choice so early into pregnancy.  Some are excited to think that the incidence of Ds could decrease dramatically with this new test.  But for many of us it is not without conflict.  Check out this article for more insight. 

But it is a painful thought to all the families that feel so blessed by the children that happen to have been created with an extra chromosome.  Because our children are worthy of life.  They are worthy of everything.

Wordless Wednesday

Happy 5 Month Day

Miss Cora is now 5 months old.  And all of a sudden, she seems so big.  I put her in her baby bathtub today and was shocked to see how much of it she now fills up.

At her weigh in today, she hit 12 pounds.  Wow!  She's getting to be such a big girl.  It is, of course, wonderful and exciting, but also sad, as I think any parent knows as they watch their baby grow older.

Today we went for a play date with some friends from one of my favorite online places, the Babycenter Down syndrome board.  We met up with little Brooklyn (9 months), Anthony (2 years) and Eloisa (6 weeks) and let the little ones eat, sleep and play while the mamas had some nibbles and chatted.  It was our first time to meet beautiful Eloisa, and we're excited to get together again soon with these new friends.

Cora and Brooklyn

Cora, Brooklyn and Anthony

Cora, Brooklyn, Anthony and Eloisa

Euphoria

 Lately I've found myself all a-twitter with the joys of being a mother.

And in a way, I keep waiting for the anticipated "realities" to set in.  Always one to research what it is I think I'm getting into, I read countless books on pregnancy, childbirth and parenting, as well as some on transitions into motherhood.  And I definitely expected to be challenged, emotionally, physically, spiritually and to have to revise my sense of self and my identity.

Now I know that it hasn't been all roses.  Perhaps my earlier posts emphasized a lot of the positives, but there was also a lot of pain, worry, fear and anxiety when in the throes of dealing with all Cora's health issues.  And now I think I may be in that euphoric state that's often described after childbirth, when you almost forget the pain.  You don't really forget, people say, but perhaps the pain just doesn't seem to matter much when you have your beautiful baby in your arms.

That's how I feel right now.  It's comical, in a way. Especially since I know that I didn't have a particularly easy delivery.  And I also know that Cora's first three months were much harder than my labor.

But I feel now like all that is fuzzy.  And even more than that, I recognize that the first few months have certainly influenced how I feel now.  It's like I'm in the honeymoon stage of mothering.  That after all that stress and all that worry, the day to day experiences feel like bliss.  I can't seem to get enough of my little girl.  I can't get over the strength of my emotions.  I can't really imagine wanting to do anything else.

And even so, I admit to having had a few moments recently when I've had hints of discomfort with Cora's Down syndrome.  I've had some instances of wondering if and when strangers will be able to "tell" and I've worried about starting to get pitying looks and comments.  I've watched adults with Ds and have worried about my girl's future.

But when I look at Cora, all I can see is Cora.  And she is doing so well right now.  Developmentally, she is largely on track.  Socially, she is a joy.  And her previous issues with feeding that were all-consuming are no longer plaguing us (at least not right now.)

As much as I know that we will experience speed bumps along the way, things feel so good right now.

When I sit down and think about it, questioning whether I'm steeped in denial, all I know for sure is that parenting happens day by day.  We don't know what the future will bring, but we do know how much we love our little girl.  When I feel worried, I just look at her and my concerns largely slip away.  Because we can't foresee the difficulties we or she may face.  But we can continue to love and support her now and take it step by step.  If that's naive, then so be it, for now.

Where are the Words?

 Where are the words that I'm looking for?  That remarkably powerful feeling of pleasure mingled with pain that fills my chest with an ever deepening ache.  The feeling I have when watching my daughter restlessly sleep, eyes closed and whining when she doesn't feel me next to her, only to calm with the presence of a weight beside her.

 Where are the words?

"Love" must be what I'm looking for.

But it feels so different from any love before.

I wonder if the feeling a baby has for her mother compares.  I don't remember the days when I was so inextricably intertwined with my own mother.  When I depended on her for everything.  I hope that a baby knows this feeling.  But perhaps she can't, quite.  Since a baby has no comparison, knows nothing else.

I, as an adult, know so much else.  But now I have the incredible honor, the joy, the remarkable beauty of getting to know this love.  Sometimes I feel that I might just disappear in it all.  It's hard to imagine that my feelings will grow and change.

For now, I am letting myself be in awe, allowing myself to revel in the small moments of watching her sleep, holding her little hands, smoothing her soft hair, kissing her sweet cheeks.

Sleep, baby, sleep.

Prayers for Uncle Rob

 We've just heard the amazing news that my uncle Rob has just gone in for a double lung transplant surgery this evening.  This is something we've been waiting and praying for for some time.

Right now I can't describe the love I have for Rob.  There are way too many other thoughts racing through my mind.   He was like a second Dad to us and has always been a great friend.  So all my love is headed to him now, and to Marianne, Kelsey and Nathan as we all wait for the surgery to be behind him.

And only a couple months (wow, exactly 2 months from the day from Cora's surgery!) after our Little Beanie's big day, it brings back so many of those feelings.  And I remember how on the morning of her surgery I was getting her ready and washing her chest when I felt suddenly at peace in a way I hadn't the day before, when we'd sent her off to the surgeon, only to have her procedure postponed.  In retrospect, it was as if there was a voice (You know who you are) that told me that she was in the very best hands, that all was as planned, and that she would be OK.  I've thought about that quite a bit in the past couple of weeks.

And now I ask for that yet again.  I pray that Rob be in the very best hands, that the surgery be swift and perfect, and that the recovery be complete.  I love you Uncle Rob.