Friday, January 31, 2014

Just for a Second

Reading an article a couple days ago, the author described her morning wake-up ritual.  Her three year old padded down the stairs, opened her bedroom door, climbed into bed with her and barraged her with a string of hilarious and heart-warming sentences.

And just for a second I felt that old twinge again... the one that almost feels like pain in my heart, as I thought to myself, "Oh how I would love to hear Cora speak to me like that one day..."

I don't know why it has to be painful, even if it's only for a second or two.  Because even though there are no guarantees, I do believe that she'll be talking one day. 

It's just one of those things.  Waiting, hoping, having faith.  And realizing that all the other seconds, minutes, hours of the days I am truly happy with where she is.

The elation I feel when she speaks her one-word approximations is hard to beat. The joy I get daily in really just taking in the funniness, the silliness, the absolute loveliness that she is.  Hearing her giggle, or watching her come up so close that our noses are touching, as she cups my face and whispers to me her language of jabbers and gestures...   Seeing her ham it up as she dances around the room, arms and face raised to the ceiling belting out some words I can only guess at...

No, I don't feel sorry for me.  And I don't feel sorry for her.  Sure, one day I would love to hear her whisper a complete and coherent sentence in my ear.  But even if I don't, it will be enough.

Tuesday, January 21, 2014

Reading with Cora

For over a year I've been involved with a group of local parents that has come together to share ideas on teaching their children with Down syndrome and other developmental disabilities to read.

It's been a great source of inspiration to me, and has been a wonderful network of support and friendship.

Our group, Portland Literacy Launch Pad, recently teamed up with The Learning Program and are really excited to see where this group will take us.

You can check out my recent blog post on reading with Cora up on our new website here:

Reading with My 3 Year Old with Down Syndrome

Monday, January 20, 2014

Having Another Baby

If you've followed this blog for very long, you may remember the post I wrote almost a year ago about whether or not to have another baby.

At the time I was not at all ready to have another child, but I was feeling the pressure to make a decision, as Cora had just turned two.  I went back and forth over the pros and cons, questioned all my intentions and suppositions, and put all my worries out on the table.  And I got a lot of really wonderful responses to that post.

And what I realized is how very personal that decision is for each and every person.  I simply wasn't ready at the time.

Fast forward less than a year, and here we are, expecting our second child in early July.

I've had a few people ask for me to share my process in making that decision.  And I've had a couple of people express that they are worried for me, or that I must be so afraid. 

As for the process we went through in deciding to try again:  the simple truth is that we just felt ready.  Attribute it to getting slightly better sleep over the past few months, perhaps, or to Cora seeming less like a baby.  She must somehow know it's time to become a big girl.  Heck, a couple of weeks of after we learned about the pregnancy, she completely weaned and became a full-time walker.  Talk about making some big-girl strides. 

As for fear and worry, I think that many people assume that Cora having Down syndrome weighed heavily into our decision, but I'm not sure how much that is true.  Of course, she does have Down syndrome, and our lives are definitely affected by it.  Her delays do make her path through childhood and development different than may be typical, and we have long-term concerns for her that are more complicated than they may otherwise be.

But all in all, Down syndrome didn't factor in as much as you might think.  And the fear of Down syndrome certainly wasn't a big consideration.  Many people on the outside of the disability world seem to assume that Cora's diagnosis is a huge burden and something to be feared.  And depending on their situation and where they are on their emotional path, a lot of parents of kids with disabilities fear it, as well.

Statistically, once you have a child with Ds your risk of having a subsequent child with Ds goes up to 1:100, and can go up even more if you have other risk factors like advanced maternal age or being a balanced translocation carrier. There are no certain answers as to why the risk increases, just as there are no certain answers as to why Trisomy21 occurs in the first place.  Learning this when Cora was a newborn made us a little nervous at first. But very soon we began discussing how much we felt that Cora would benefit from having a sibling, and most of our thoughts on having another child have continued from that point of view.

I think the biggest challenge for us was making the decision to expand our family not solely because we felt it would likely benefit Cora, but because it was something we wanted as a family.  As I've said before, there are no guarantees when it comes to having children, so making a decision solely to "help Cora" wasn't convincing me.  There is no guarantee that another child will help her, just as there is no guarantee that any child will be healthy, or free of disability, or happy, or anything else.  That is simply part of being a parent... choosing to love something that is so much out of your control.

But that is a risk that we are willing to take at this point.  We do not fear having another child with Down syndrome.  As much as we know there would be some advantages to raising Cora with a typically-developing younger sibling, that is not really up to us.  We also know that there would be many advantages to raising Cora with a sibling with a disability or other health challenges.

I won't tell you that I wouldn't love to not have to worry about health issues, hospital stays or surgeries.  I would love for this baby to be healthy and not have to face life-threatening concerns.  A new pregnancy can definitely bring anxieties to the forefront, and for me most of those surround all the fear I felt after Cora was born until she had her heart surgery, and when there have been other health scares.  I am not particularly eager to relive those fears, not with Cora or with a new child.  But these are not the decisions that I get to make.  All I can do is trust and hope, and make whatever plans I make with that in mind.

Tuesday, January 14, 2014

The Birthday Celebrations

We spent the last few days having little celebrations for Cora's birthday.  The weekend brought brunch with some good friends, and a dinner of pizza and kid's music and a trip to get ice cream with a couple of families that we love to spend time with.  Sunday we took her swimming, where she dragged us on the water slide as many times as we could handle and threw a fit when it was time to leave.

Yesterday was Cora's actual birthday, and although Nick went to work, she and I spent the morning listening to Tallulah's Daddy play some music, and then having a mellow afternoon at home, just the two of us.  We watched the birthday episode of Signing Time, we danced, we played with her Big Sister dolly Lulu and we made dinner, with Cora helping, of course.

After Nick got home we had a nice little birthday dinner with just the three of us.

Cora ate spaghetti and roasted rosemary bread.  I'm pretty sure she actually ate a good amount of it, even though it looks like a lot on her face and bib.

Then came dessert with her special birthday Curious George cupcakes.

Everything started out pretty well.  She was excited and she had already gotten a taste of the frosting after lunch.

But then her mood shifted and she started to rub frosting into her hair and eye. 

Daddy thought it was pretty funny and wanted to join in on the silliness.  So he masked himself and leaned in for a silly kiss. 

It was no longer fun and games.  Poor Cora.

Luckily, she cheered right up after Daddy wiped the scary frosting off his face. 

And the combination of tears and silliness ended up turning into one of the messiest faces I've seen in a while.

We almost forgot about gifts, since a bath immediately followed.  But Cora got to open a couple little presents before heading off to bed.

And now the whole birthday business is over.  She is officially a three year old, ready to take on whatever adventures the next year will hold.  I can't wait to see how much she will grow.

Monday, January 13, 2014

Happy 3rd Birthday, Cora!

Oh, my dear girl, I can hardly believe that three years have passed.  It's so hard to put into words how much I love you and how much you've made my life better.

So I will keep it short and sweet.  I love you, little Beanie!  And for me and all your fans, a glimpse at how much you've grown over the past year...

Wednesday, January 8, 2014

Transitions and a Goodbye

Once again I am counting down the last few days before Cora's birthday.

Each year so far, her birthdays have been very different for me.  The first year, I was a blubbering emotional mess, reflecting on the fearful weeks after her birth and leading up to her heart surgery.  Last year, I felt excited, hopeful and happy.  Happy that I no longer felt so raw, happy that the over-riding experience had grown to be so much more than my initial fear.

And this year it's a little of both.  I don't know...  I know Cora is only turning 3, but in the world of special needs, the third birthday marks a turning point.  The child ages out of the school district's Early Intervention or Birth to Three program, and begins either an IEP (Individualized Education Plan) or in some states, like ours, continues with an IFSP (Individualized Family Service Plan).  The major difference is that services most often transition to a preschool setting. 

In our case, for various reasons Cora won't be starting preschool until the fall, so she'll be continuing to get services at home.  It might not seem like much of a difference in her case, but the biggest change is that she will be getting a whole new team of teachers and therapists.

Today was Cora's last visit with her Early Intervention teacher, Cami.  She's had a handful of other specialists in the last 3 years; a couple different Occupational Therapists, a Physical Therapist and a Speech Therapist.  But Cami has been her constant, her teacher, and her friend.

Cami first came to help us when Cora was probably about a month old, just a week or two out of the NICU.  Little Beanie was tiny and seemed so fragile, hooked up to an apnea monitor, using an NG tube, and not doing much except snuggling, sleeping, and struggling to eat. 

I was so scared.  I had this beautiful girl that I had fought to get home from the hospital, but my life consisted of constant unsuccessful attempts at feeding her, endless hours of pumping and milk processing, and lugging her to doctor's visits several times a week.  And fear.  So much fear.  Knowing that I'd be looking for her heart failure to worsen scared the crap out of me. The cardiologist and neonatologists all talked about it like it was no big deal.  But how was I to know when her worsening symptoms got too bad?  How was I to know anything, really?

And how the heck was I going to get through the months leading up to the biggest fear of all:  her open heart surgery?

I was desperate to do everything I could do to help Cora.  I wanted to keep her from getting too far behind before her surgery.  I wanted to be the best mom/therapist I could be, to do it all, to learn it all, and to give Cora everything I could.  It doesn't take long to get burnt out on that pretty fast.

But Cami was there through it all.  Initially she offered support and a listening ear, and some suggestions here and there to supplement the many specialists constantly barraging us with instructions.   At first I felt like the suggestions couldn't possibly be enough; that I needed to be able to do MORE, that there just had to be more. 

And gradually, there was more.  As Cora grew, recovered from heart surgery, and her strength and abilities increased, we had more to work on, more ideas, more activities that seemed like "therapy." And that was all well and good. But it wasn't long until I realized that Cami was offering us something much more important than therapy: her constant support.  She gifted us with her willingness to listen and yes, to offer suggestions, but most of all, she continued to tell us that what we were doing was enough.

There is so much pressure to be a super parent.  When you feel that your child's needs are great, that desperation to do so much more is awfully strong.  I certainly have felt that way at times in Cora's life.  But there comes a time when to salvage yourself you have to realize that you are enough.  And I am glad that I had someone to help me learn that early on.

I can't thank Cami enough for all that she's given us these last 3 years.  For always being positive, for always listening to me, and for always believing in my girl.  There are many people who are trained to work with children, and many of those people are highly skilled.  But to find a person who is not only skilled but that also truly cares about your child is a blessing, indeed.

So today, as we said goodbye to Cami and she left our house for the last time, it has been a sad day for me.  I've had to wipe away tears more than once.  I know that it won't be goodbye forever.  I know we'll keep in touch and probably see one another at community events, but it won't be the same. 

When Cora was a baby the idea of 3 years passing by seemed impossible.  Just getting through the day-to-day seemed like an insurmountable endeavor.  But it has happened.  She'll be 3 in just a few days.  And she is moving on and growing up.  But my, it does hurt a little.

We will miss you, Cami!