Wednesday, December 10, 2014

Oh, Christmas Tree

I've been absent in the blogosphere of late.  Life with my girls has been going so fast.  We've had some sickness.  Oh we've had some sickness.  Instead of sharing Thanksgiving with beloved extended family, we shared it together with stomach-flu-for-four after a crazy up and down week full of medical mayhem.  Having sick kids is awful, but being so sick yourself that you can barely take care of them is worse.  Thank goodness the girls rallied at the end and avoided trips to the ER for dehydration.

But we seem to have come out the other side, and for that we are grateful.  We are also grateful to be gearing up for the holiday season for Ruby's first Christmas with us.

So far, we've got the tree.  In past years, getting a tree had been pretty hit or miss for Cora.  Sometimes fun, sometimes devastating, like all good family outings seem to be.  This year we were blessed with a somewhat warm day, and raindrops that mostly held off, while we went out seeking a lovely Noble from a local tree farm. 

The actual tree is the biggest we've had.  It fills up almost a third of the room.  But it's lovely.  Every morning when Cora walks out of the bedroom and sees it, we hear an exuberant, "Oooooh. Wow!"  That pretty much makes it worth it.

She was mostly happy to participate in decorating it, and slightly less happy to pose for photos with her little sister.  These days a good portion of their interactions involve Ruby grinning and giggling at her big sister, while Cora looks at her, says "no," and then looks away.  Poor Ruby.  Sometimes Cora can't help herself and gets in on the giggles.  And she loves to bring her baby sister toys.  It's a work in progress, this sister thing.

But overall we are happy to be witnessing the new dynamics in our family.  As Ruby grows and gets so much more interactive and playful she has been so much fun.  Yes, Cora is jealous of the attention her sister gets, and I'm sure that is hard for her.  But we are so happy to have this new little person in all our lives.  We'll see what the new year brings.

Friday, October 31, 2014

Trick or Treat

Curious George and the Baby with the Yellow Hat want to wish you a Happy Halloween.

Cora picked out her own costume idea this year.  She didn't want to wear the ears much when getting dressed, but once she realized that she got candy for wearing them, she was more than happy to oblige.  While last year she was barely walking and was pretty timid, this year she ran up and down the streets laughing, and said "treat" and "thank you" at all the doors.  (Except if the people were wearing masks or there were dogs there.) 

Ruby was a trooper.  She sat in her sling and sucked on her pacifier.  I know.  Adorable, right?

What is cuter than kids in costumes?

The fruits of my efforts to get the two of them in one shot...

And Cora's rainbow ballerina outfit that she wore to preschool today.

Overall a lovely Halloween.  Now we're eating candy and pizza and answering the door to adorable kids.  Happy Halloween!

Wednesday, October 29, 2014

So Now You Are Aware

We're down to the last 3 days of Down Syndrome Awareness Month.  I know I haven't posted much that is specific to Ds.  For me, it's more of an exercise in putting part of our lives out there, in sharing some of our day-to-day and some of my thoughts.

I've talked about how I think that sharing individual families' stories is helpful for the narrative about what a life with Down syndrome can be like.  I know that it's a valuable perspective in a world where much of the population questions whether people with Down syndrome should even be born.  It's a part of the story, and an important one.

But there's so much more than giving glimpses of cute children, and proclamations that life is beautiful with Ds.  Our life certainly is beautiful much of the time because of Cora.  Because she happens to be a wonderful little girl and we are smitten with her. Her having Down syndrome has done nothing to make our lives less worth living.

There is much to be learned and taught and shared beyond awareness, though.  What we all want for our loved ones with Ds and other disabilities really is acceptance.  Acceptance that the value of their lives shouldn't be a legitimately debatable subject.  Acceptance that people with disabilities belong in our communities, in our classrooms, in our lives.  Acceptance that people with disabilities deserve to be able to work for reasonable wages, vote as citizens, and be considered adults with rights that others are granted without question.

There is so much more to acceptance than liking a Facebook post of a cute kid.  There's awareness, which can be a great place to start, but there is really much, much more.

As Cora's parent, like all parents I am sure, I have so many hopes for her life.  I hope for her to be able to follow her heart and do what she loves.  I hope for her to form meaningful friendships and romantic relationships.  I hope for her to be accepted by those around her; in the workplace, in her home, in her community.  I hope for her to get an education.  I hope for her to feel that she is a worthy human being.  I hope that she likes and loves herself.  Simply being aware of her isn't going to be enough to get there, unfortunately.  It will require advocating on our parts, on her part, and hopefully on your part, as well.

You may ask yourself what things can you do to help support acceptance of those with Down syndrome and other disabilities?  Well, to start with, you can model to your children that having interactions and friendships with people with disabilities is natural.  You don't have to tell your kids that it's important to help people with disabilities, as much as teaching them that everyone is different, and that each person has different abilities and talents and challenges.  That the variety of perspectives you get with different are valuable and important.  You can support legislation like the Able Act, that would allow people with disabilities to live more financially independent lives without compromising their eligibility for government programs.  You can eliminate hateful pejorative terms like the "r-word" from your vocabulary, and help educate those around you that the attitude that these terms perpetuate is harmful to many.  You can support inclusion in your community, in your schools, and in your lives by simply including people with disabilities and recognizing that they belong.

Awareness may start with cute photos, but acceptance is something we can work on every day.  It's amazing to see how far our society has come in our attitudes toward those that are different, but there is so far to go.  Imagine how far we can get in our lifetime alone if we all recognize ourselves as advocates.

Monday, October 27, 2014

The Best Thing Ever

Today I witnessed a milestone that tickled me to my very core.

I've been blissing out watching Cora and Ruby grin at one another for a few weeks now, but today Cora made Ruby full-on laugh.

I've heard quick giggles and squeals from little Ruby, and lately lots of squawking, cooing and conversations.  And earlier this month my mom and sister witnessed her belly laugh at some dogs running by.

But today was the first time that I got to hear a big long genuine laugh come out of my sweet baby.  And it was directed at my sweetest of big girls.

Seriously, that is the love that makes me realize that growing our family was right.  Seeing that relationship between my girls start to bloom may just be the best thing ever.

I can't wait to see it grow.

Saturday, October 25, 2014

Revisiting Old Fear: Countdown to Surgery

I wrote this a week before Cora's open heart surgery, back from March 31, 2011, when she was not even three months old.  It's amazing to think about how very young she was, because those weeks since her birth were the longest of my life.  And that love... it seemed impossible that she had really only been with me such a short time.

I'm not sure exactly why I chose to re-post this today.  On past Saturdays this month I've been recycling old posts that contain more abstract thoughts.  But this was a snapshot of my life, of my frame of mind at a time when I was utterly terrified.  It's funny because my words sound so mild compared to how afraid I really was.  I think on some level I believed that if I allowed myself to really admit and say out loud or in writing how terrified I was then it would be partly my fault if anything went wrong.  And I knew I had to hold myself together, for Cora and for myself.  Sometimes I think it's amazing that I didn't shatter into a million pieces.

So often these early days feel like they were so long ago.  My independent and argumentative 3-year-old seems so removed from this tiny little struggling baby that I described below.  But it wasn't all that long ago really.  

I'm so thankful for where we are now.

So yesterday was the much anticipated cardiologist appointment.  We were eager to hear what her doctor would say.

Last week I called and spoke to his nurse, telling her about Cora's increasing symptoms:  heavier breathing, sweating more, pale skin, nostrils flaring more.  The nurse spoke to the cardiologist and called us back, telling us to increase her Lasix dose a little bit, and told us to plan to schedule her surgery at her appointment.

So we knew it was coming, but we didn't quite expect to hear what came next.  He told us that her symptoms are definitely increasing and that it's time to schedule the surgery.  Of course, we agreed, thinking we'd probably be looking at least 2-3 weeks out, but he told us he'd like to do it early next week.  Like Monday or Tuesday.  So we scheduled for Tuesday.  Just 6 days from her appointment.  I'm not sure how common that is, but it seems like most of the families I hear about have to wait longer than that.

In many ways, it's great.  It means that it will be over soon.  We've been waiting for this ever since her echocardiogram in the NICU the day after she was born.  But it always seemed like the future.  It's nice also that we don't have to anticipate the date for weeks to come, like many other parents do.

But it also brings all my anxieties, nervousness and fears right out into the forefront.  I've been consciously and unconsciously spending a lot of quality time with Cora for the past several weeks.  If she's awake, she's usually with me during the day.  Even if that means just lying next to me on the couch while I pump.  I've been wearing her in the baby carrier, snuggling with her for naps, and being ridiculously goofy in my attempts to get her to smile.  I know that infancy goes by so quickly, so I've been trying to really appreciate her.  To be happy she's not napping so that I can interact with her, even if it means ignoring the other chores that beckon endlessly.  And now, of course, I just want to hold her tight and not let her go.  The thought of handing her over to the surgeon seems so impossible, even though I know it is necessary and will benefit her so much.

But this morning she is very tired.  Last night she was more fussy than usual, so I cuddled her to sleep for an early night.  Other than being woken for feeds, she slept right through and is now napping again after her last meal.

And I feel simply awful, because this morning after feeding her, I stood up from the couch without checking her NG tube.  It was stuck in a couch cushion, and stretched and pulled and came all the way out, pulling out from under the tape on her face but leaving it intact.  And it must have been painful because the poor girl screamed bloody murder.  For a whole minute or two.  Now for many parents out there I know that a minute or two is nothing.  But for Cora it sure is, and it didn't do much to soothe my guilty conscience.  Then after she was calm, Nick came and pulled the tape off her face and more tears ensued.

So we decided to let her go for the next few hours without the tube and Nick will put a new one in when he's home in the early afternoon.  Give the little girl a rest.  Not sure if it would have been better to do it all at once.  It's so hard to put your baby through misery.  No matter what it is.  Shots at the doctor, shoving a tube up her nose down into her stomach, or handing her off for open heart surgery.

So for the next 5 days I'm trying to hold it together, to give my girl all the love I can, and to visualize us seeing her after surgery with wide open beautiful blue eyes.  To picture her beginning to eat well, and grow, and not struggle so much just to breathe.  To grow and to thrive and to get an amazing chance to start over, good as new.

Please keep our girl in your thoughts, and if you pray, in your prayers.  She is strong and lively and wonderful, and I know she will do just fine, but I do believe in the power of prayers, and all of yours are appreciated.

Friday, October 24, 2014

My Little Mommy

Cora has been playing with her doll babies a lot over the past few days.  I can't say that it's surprising at all, since she watches me take care of her baby sister all the time now.

I had wondered what she would think about me nursing Ruby, since she herself only weaned less than a year ago.  For the majority of my pregnancy, she would continue to ask to nurse, and then laugh.  Or she'd snuggle up to me and pretend to nurse, making little eating sounds and then giggling.

But the minute Ruby was born and started nursing, Cora stopped pretending to nurse.  She'd continue to play with her dolls and ask to hold Ruby, but never pretended to nurse her babies, and seemed kind of dismissive of the process of breastfeeding Ruby.

Until this week.  My friend was visiting, and we looked over at Cora sitting on the floor with her baby, to find her lifting up her shirt and putting her baby to her chest.  "Eat. Baby. Slurp. Slurp."  She'd take Baby out, then lift up her shirt and start over again.  Then she'd pat her on the back, make a fake burping sound and squeal "meee, mee!" (translation:  "excuse me") and run into her room to change Baby's diaper and put her to bed.

Watching her made my breath stop and my heart start to ache a little.  Probably because it's just so sweet seeing her finally start to own this process of intimately caring for a baby that only mommies do, and seeing her take on my role in her play.  She's trying it on for size, practicing fitting herself into that mold that I've given her.

It's something that parents find so sweet; seeing our children play at nurturing us as we nurture them, watch them practice being grownups in the way they've been shown.  We hope that it means that we are rubbing off on them in a positive way, that we're not doing everything wrong, that we've given them enough of a good example that they can hope to one day emulate us. And it's just so darn sweet, right?  I think that when we see our kids playing parents we start catch a glimmer of what they may actually be like as adults, and start to visualize grandchildren and all sorts of future possibilities and hopes.

But childbearing is just such a loaded topic with Cora, since she has an intellectual disability.  I want Cora to have a full, active, vibrant adult life.  I want her to do what she loves.  I want her to love who she loves.  I know that in the past (and even now) romantic relationships among those with cognitive disabilities are discouraged or even prevented.  And I don't want that for Cora.  I want her to find happiness and love. 

But what about having children?  Will she want children?  She should be physically able to have children.  But there are so many questions about whether people with intellectual disabilities should be able to have children or would be able to care for children.  There are some parents who have actually sterilized their children with disabilities to prevent this from happening.  Would I want to prevent Cora from having kids, if it's what she wants?

The mere idea of that scares me.  If I profess to want her to find her happiness, to live the life that she wants, how could I want to prevent that?  As advocates for our kids, we want to help them find the support they need to live as independently and full a life as they want to live.  Couldn't there be a way to support Cora so that she can be a parent?

I just don't know.  It causes me almost physical pain to think that I could be the one to try and prevent her from experiencing this.  But it could be so hard.  I didn't become a parent until my thirties.  I know I won't be around for Cora's entire adult life.  Could I help her raise a child?  Would I want to do go through parenting again later in life?  How much support would she need?  Could she be a competent parent?

I just don't know.

So when I see her put her baby to her chest, I can't help but know that these questions are in the back of my mind, even as my heart swells with love to see her doing something so sweet and natural and biologically programmed to make my emotions (or hormones) run high.

I guess when it comes down to it, like much of my concerns and questions, I just have to put them on the back burner.  She's not even four years old yet.  We're not there yet.  One day we may be asking these questions for real.  But for now, I'll appreciate watching my three year old nurse her doll.  I'll take it as the compliment that it is, and encourage her natural ability to love and nurture.  For now I will live this life that I have and wait for Cora to ask the questions.

A few months ago... wearing Baby Hopkins in her wrap.

Wednesday, October 22, 2014

In Real Life

You know those things that happen that you're really excited about, and you can't wait to get photos to show that it really happened?

Yeah, well that happened to me today.

I got to meet some celebrities.  Cora, Ruby and I went out and caught a kids' music show with none other than Moxie, Meriah, Micah and Mac from A Little Moxie.  And yesterday Ruby and I met them for just a few minutes at the local science museum.

I would have loved to get a picture of all the kids together, and definitely of Moxie with Cora. But all I really got to show for it is a few fuzzy photos of Cora at home modeling the awesome shirt that Meriah made and gave to her, showcasing the three 21st chromosomes. And a picture of Moxie and Cora avoiding one another and the camera.

But during our actual meet-up my camera was having problems, and it honestly seemed like too much work to try to get the kids in a photo together, since Cora was avoiding getting too close and was trying to continually escape out the door, and I had a baby strapped to my chest.

Kind of sad to have no photographic proof.  But very happy to actually meet someone in person that I've been following since Cora was a wee baby, someone whose writing and perspective and adventures have stretched me and inspired me and broadened my thoughts.  And someone who is just a really cool woman, someone I'd love to get to spend more time with in real life.  We spent a couple hours wrangling kiddos, chasing them around a ballroom and then corralling them in the rain, and talking over it all.

Their family is off to new adventures and will be hitting the road to head south to warmer lands for the winter.  But I was pretty happy that their current adventures had them spending some time in Portland, and that I got to meet one of my online friends in real life.

Cora showing off her new designer duds with a dance!

OK, I wasn't going to share, but here it is:  my sad, sad photo of Cora with the lovely Moxie.  Pretty bad.  Hopefully the ones Meriah took turned out a little better.

Monday, October 20, 2014

A Little Fluff

Man, there has been a lot of fluff lately.  A lot of fluff here in my posts.  I guess I just haven't felt particularly thoughtful or eloquent, but I have been enjoying getting into the habit of sharing some snippets of our everyday life again.

This everyday life isn't all that unusual or extraordinary at all.  In fact, it seldom seems like there's much value in sharing it at all.

But I do like the idea of sharing little moments and glimpses of our family.  I like being able to show that in our own ways, we are just like everyone else, living an average and sometimes wonderful life.

I know that when a family learns that their child has Down syndrome, there are so many worries and questions.  There are worries for the child and for what it will mean for them, their life, their independence, their health. 

And there are also worries about what it will mean for their family.  People worry that their family won't be able to handle it, that perhaps they won't love their child with Down syndrome as much as their other children, that their siblings will be burdened, that their marriages and family may fall apart under the pressure.

That's why it is so important for our stories to be out there. For the stories of regular families sharing that their lives aren't ruined, that their families aren't overwhelmingly burdened, that they are overall better off for having their loved one in their lives.  There need to be some real life testimonials to the fact that statistics show that people with Ds and their families are happy with their lives.

There is so much more out there to share and to learn.  There are so many more stories that are needed, particularly the voices of those with Down syndrome themselves.  But because I can only speak from the perspective of a parent, that is the story that I can share.  Those are the words and images that a new frightened parent can stumble upon as they Google what to expect.

So I'll continue to share my fluff.  And sometimes my thoughts, some of which can get a little less fluffy from time to time.

In the meantime, something soft and happy from the apple festival at a local nursery.  Funnily, I have no photos of apples, just of us being silly, and Cora painting a pumpkin.  It was a lovely and beautiful afternoon, spent chasing Cora through the outdoor aisles of the nursery, when last year we walked her around holding both hands since she hadn't started walking completely on her own yet.  Even then it felt freeing.  In fact, it was probably more freeing, since she wasn't able to run away from us yet.

But it was a lovely little day.  A day where we appreciated having this sassy, silly, and beautiful little girl in our lives.