On Her Own Two Feet

 

This little girl has been learning how to get by on her own two feet so much this summer.  

It's quite amazing, really.  To think that she's only been a full-time independent walker since last November, seeing her racing around, climbing with confidence and exploring the world with her body is so impressive.

It's also been a little bit terrifying for me, and a pretty big lesson in learning to let go just a bit and to trust. 

During the last four months of my pregnancy we didn't do a whole lot.  Right when park-going season started, I began to have serious difficulty being on my feet.  So our daily 10-minute walks to the park turned into occasional drives to the park, where I'd hobble around after her.  For a long time they stopped altogether unless Nick could take her. 

What should have been the time for her to really start getting steady on those feet and on uneven surfaces became way more time in the house, and endless viewings of Frozen.  And there was lots of Mommy guilt about it.

When I was able to accompany Nick and Cora to the park at the end of the pregnancy and when Ruby was just born, I'd watch from the sidelines, having episodes of major anxiety and hiding my eyes as I saw that Cora no longer climbed up the stairs on the play structure on hands and knees, but walked up holding onto the railing.  Nick no longer followed her up to spot her, but stood down below the openings just in case.  I watched her hang onto the bars and swing her body over the tops of the slides, bear crawl up huge slides, and climb up structures with some pretty adept new skills. 

Knowing that she's still a bit unsteady sometimes, and that when she gets nervous around other kids she will slowly step back or to the side terrified me, as I envisioned her plummeting down the 40 foot drops by accident.  (OK, I know... it was probably only 6 feet at the most.)

I swore I'd never be able to handle taking both girls to the park alone; that my blood pressure just couldn't take it.

But over the past three weeks I've finally been brave enough.  And I must admit it, I'm pretty darn proud of this girl.

Proud of her spirit, of her joy, of her willingness to throw herself into new things, even if right now her new experiences are limited to the playground.



Very soon she'll be throwing herself into something entirely new.  Preschool.  Just the thought makes me start to shake a little.  She'll be starting at a cooperative preschool two mornings a week in September.  I'm pretty sure she will be the only kid with a disability.  I have a list of my worries (including safety on the playground and in the classroom, especially with her tendency to run).  But I think the strongest current of worry I have is how she'll fit in.  Will the other kids relate to her?  Will she make friends?  As a coop preschool, the parents are teachers in the classroom a couple times a month.  Will the other parents warm up to her, or will they feel that she's a burden?  Will I feel like the outsider as a "special needs mom"?  Does the fact that I am even having these thoughts mean that I am already setting us apart?

I really don't know how any of it will work out.  But I am hopeful.  I am excited for Cora and for these new opportunities.  I am excited to be finally starting her real organized educational experience, and for her to be included in a typical classroom, as a part of a community.

I am looking forward to seeing her plant her brave little feet on new ground and take off running.  I only hope I can keep up.

Bittersweet

The other night I had a big realization.  It hit me as I was lying in the guest bed, trying to sleep (after  being lovingly kicked out of bed due to my marathon pregnancy-induced snoring sessions).  For the past couple months the days and weeks have been moving in slow motion.  Let me tell you, this pregnancy has been really rough on me, and having another two and a half months or so to go has been seeming like eternity.  But somehow that night, alone in bed, it dawned on me that I only had another couple months of being a mama to just Cora. 

Suddenly, the rest of this pregnancy felt like it would fly by in a flash, and I began to cry.  I mean, I really cried.  For probably an hour or so.  I felt like my heart was being pulled from my chest and that I was actually mourning a loss.  Of course I know that I am not going to be losing Cora when her little sister arrives, but somehow it felt that way right then.

For more than three years now, this little girl has been my entire life.  Everything I do revolves around her.  Most of the time it feels like everything I am revolves around her.  The life I lived before she was born seems so alien to me now.  My days and nights are of course different.  But even my thoughts, my conversations and my friends are different.  Everything in my life centers around the fact that I am Cora's mom, and that I spend my days and nights with this little girl.

And now I am realizing that that will all be changing.  I won't just be Cora's mom anymore.  I will have someone else there to share my focus, my energy, my thoughts, my attention and my love.

And somehow, the idea of sharing those things, despite how excited we are to welcome the new little one into our lives, felt like an enormous loss: a loss of the era of us as a twosome.

Little Sister, patiently waiting for her chance to get out.

As morning arrived, I found that much of my sadness had dissipated.  But my realization has pushed me to put things into perspective.  Even though this pregnancy isn't getting much easier, I am getting back the desire to soak up the rest of the moments that Cora and I get to share as a pair.  I am starting to release the guilt (and subsequent depression) I've been dealing with as I've become less mobile and have not been able to be as active and involved with Cora as I would like.  I am working on being more present in our moments together, and not allowing myself to be stuck in the self-pity I've been building.

I am trying to enjoy the last months we have before the baby arrives.  Even though the days still feel long and I feel like I will be pregnant forever, I know that it won't really last.  I know that very soon we will be a family of four, and I am looking forward to expanding our lives with our mysterious impending arrival.  But I am acknowledging all the same that growth is bittersweet.

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.

The Missing Pieces- 31 for 21

This is another recycled post from just after Mother's Day earlier this year.

I've been thinking a lot about all the mothers in my life: particularly my own amazing mom and my sisters.  I send this out to them.

This Mother's Day weekend our little trio took a whirlwind trip to the beautiful Oregon Coast.  There's just something about the ocean. Something cleansing, something that somehow sweeps the cobwebs from my heart and inspires me.
 

We played on the beach, watched Cora point out the birds and dogs, roll around in (and periodically taste) the sand, and then grab our hands and "run" straight for the water again and again.  We laughed and played and had a great time.

This morning I took a solo walk on the beach, the air crisp and the wind blowing, the clouds filling the sky in a way that felt just like home.

Alone is not something I get to do much of, and it's something that feeds me.  It's something I have always needed, and something that I was afraid would change too much after I became a mother.   I walked the sand toward the craggy rocks, breathing the cool salt air, setting goals to work more "me" time into my life, and thinking of how much becoming a mother has transformed me.

A few weeks ago while watching a drama on TV, a scene where a mother's adult son passed away had me in almost a panic.  I could feel her anguish.  I could see Cora on that table, and the pain was unbearable. In that moment, for just a few seconds, I thought that if I could do it all over again there was no way I could handle it.  I felt that being a mother opened up way too much possibility for anguish; that the mere idea of losing Cora hurt so much that never becoming a mother sounded like a better alternative to that possibility.

According to my husband, Don Juan, sorceror and mentor to Carlos Castenada told of "seeing" peoples' souls.  He talked of being able to immediately identify parents, because they were inevitably missing parts of their selves; holes in their centers that their children had removed.

And it rings so true.  Apart from how much motherhood has redefined my days and my values and my perspectives, it is truly like Cora has taken a piece of my soul, one that I couldn't get back if I tried.  Losing a part of oneself like that is terrifying, yet is still the most exquisitely beautiful thing I have ever done. And so it is for us, as mothers. We live our lives, so changed... tethered to the souls that are parts of us, that have taken pieces of our selves, whether these lives are with us or not.

It's with those thoughts that I snuggled Cora in my arms tonight, and read her book after book after book.  Sometimes the days are hard, the struggles frustrating, the experience lonely.  But oh how I love this little child who has stolen my heart.

Beauty in the Eye of the Beholder- 31 for 21

My friend Michelle over at the Hailey Herald just published a lovely post highlighting the beauty of a number of kids with Ds.  It definitely displays a lot of smile-inducing cuteness.  And it got me thinking...

One of the initial worries that I've heard a ton of new parents admit is that their child won't be beautiful.  I know that it is one of the more superficial worries to have, but it's there nonetheless.

I have to admit that I had the same thought when Cora was born.  I remember when she was still in the hospital and I was sitting there with my mom, I asked out loud if she thought Cora would look like she had Down syndrome when she was older.  I still hadn't really accepted the idea of my daughter having Ds, and I just couldn't picture how this tiny little adorable baby (who actually DID look like she had Ds and I knew that even then) would still be beautiful as she got older if the features of Down syndrome were apparent.  When my mom answered that yes, she most likely WILL look like she has Down syndrome, I felt disappointed and discouraged.

A couple weeks later my sister Mira was visiting.  There is something about Mira and my mom, something that just allows me to bare my soul, even when my soul isn't very nice or very pretty.  So I made a confession to Mira that I hadn't told anyone else.  I told her that I liked it when I looked at Cora or saw a photo of Cora and didn't automatically see Down syndrome.  I told her that often when I looked at Cora and recognized Ds, I didn't like it; that it made me uncomfortable and worried.

Mira, ever honest, and usually with a refreshing perspective that doesn't always conform to the norm but that always speaks to the real heart of things, gave a little smile and said,

"Really?  I kind of love it when I can see it in her.  I think it is part of her beauty."

And you know what?  That moment started a shift in me.  All of a sudden I could see what Mira meant, and I could see that it was true.  That those angles that showed Cora's slanted eyes and the flat bridge of her nose, and even that mysterious indefinable quality that can't really be described by specific features but that just IS; seeing those qualities suddenly became less worrisome.  I started to see the beauty in them too.  And I started to be more comfortable with them.

Time has certainly continued to change how I see Cora.  While I used to sometimes worry about whether people out and about in the world could "tell," now I just assume that everyone can tell.  And I love it.  I am proud of it.  Heck, I admit it:  I am a bit vain about the fact that my daughter is pretty dang gorgeous.  I am sure that if she weren't objectively pretty I would be fine with that, and I'd probably still find her beautiful because I know and love her.  And love sure makes someone attractive.  But Cora is seriously beautiful.  And Down syndrome is a part of her beauty.  I'm so glad that I had someone so insightful to point that truth out to me early on.  I'm glad that I learned to start to recognize that my daughter is beautiful and amazing AND she has Down syndrome.  Not because of or in spite of.  She just is.

Why I'm Not a Good Hero- 31 for 21

One of the most common sentiments you'll hear from parents of children with special needs is that we are not saints or heros.

I'm sure that those labels sound like compliments.  I'm sure those of you on the outside would think we'd be proud to be seen in that light.

But the truth of it is, we don't feel like saints or heros.  We feel like regular people who struggle and who make mistakes.  Many of us faced some serious grief and soul-searching when we learned our child's diagnosis, or when things have felt particularly hard or scary.  It's hard to think of yourself as a saint with feelings like that.  You don't feel like a hero remembering the fear, the shame, the blame, or the anger.

We struggle every day wondering if our decisions are the best ones for our children.  We worry that we aren't doing enough, and then when we do as much as we can muster, we get burnt out and take steps back.  We second-guess every medical decision, we worry about milestones even though we know we shouldn't.  We will never be the mothers that we think we should be.  It's a mother's curse to feel that way, and we are no different from any other self-doubting mother.

But the hardest part about being called a hero is what that says about our children. 

When you say that I am a hero, I hear you saying that my child is a burden and that life with her must be such a sacrifice. 

When you say that you don't know how I do it or say that you couldn't do what I do, I wonder what it is that you think I do.  All parents feel fear, all parents worry for their children.  The truth is that you could do it if you had to, and chances are that you will have some significant struggles with your children at some point.

The truth of it is that we are all ordinary parents.  We all love our children.  We all struggle.  Some of the challenges for parents of kids with disabilities may seem more constant or apparent.  I won't tell you that those struggles aren't real.  But simply living with them doesn't make me a hero.

If you want to admire me, admire me for my cooking, my writing, or my laugh.  Admire me for sharing something that makes you think differently about the world or the people around you.  Admire me for sharing my thoughts and for giving you a glimpse into this beautiful life that I have with an amazing little girl: a girl who deserves way more admiration than I do.  I can take that kind of admiration, I guess, even if it makes me a tad uncomfortable.

Because as much as I am an ordinary fallible person full of flaws and fears, worries and demons, I still do believe that I am the perfect mother for Cora.  However it works that one soul gets paired with another as a mother and child, the match-up was spot on with us. 

For Both our Sakes

I've been feeling a bit uninspired here.  We've been trying to soak up the last weeks of summer by getting to the park every day before the rains return.  Together we've been going through the motions of the days and weeks in between visits from family and friends and trips out of town.  Somehow I've been neglecting the camera, neglecting my writing, neglecting myself, even.

Sometimes being a mother makes me feel so disconnected from myself.  Spending days wrangling my reluctant child in and out of clothes and diapers, attempting to feed her through yet another hunger strike when nothing finds its way into her mouth and everything is thrown on the floor, going to and from outings, errands and activities, most of them involving cajoling, if not full on mommy-toddler wrestling matches.  It's exhausting, as any mother knows.  There are no lunch breaks as I squeeze work into the minutes that she actually naps.  I breathe sighs of relief when she is finally down for the night, even as I know that we'll likely have to put her back down a couple times before we turn in ourselves, and then inevitably a couple more times before the 5:00 am wake up call.  The day-in and day-out can kick your butt and kick it good.  And it definitely leaves me feeling a disconnect from the self I'd always known, the me that has always needed down time, quiet time, alone time.  But alas, there don't seem to be any real vacations for mothers.

Yet in the midst of feeling depleted and unmotivated, I had a wonderful moment of connection this weekend.  A moment where the mama-me and the missing-in-action me seemed to coalesce and I felt so whole. 

We were up on the Olympic Peninsula at a beautiful garden wedding.  It was past Cora's bedtime and she was worn out from the day.  Instead of packing her up and heading off to bed as we always do, we kept her out a bit longer.  I wrapped her in the carrier as the dancing began.  With Cora snuggled against my chest, I took off my shoes and danced in the grass.  I barely felt the extra weight as I moved, clutching Cora's head against my chest and moving us both through the night air.  We danced together until the party began to slow, when my quiet girl began her own little shimmy to mirror what I too was feeling.  Neither of us were ready for our dance to come to an end.

And during those moments I felt so much like me.  Me as myself, dancing out my own desires, yet with my girlie curled against me.  The mama-me and the lost-me danced together.  I was struck by such a pure knowing... a peace... where I didn't feel pushed and pulled by the needs of my child, but felt that rare feeling when her needs and my needs perfectly converged, pulling the pieces of me back together.

Later  as I tucked Cora into the hotel bed, my heart ached with love for the little girl that has stolen my heart and re-written my life.  I wished that I could hold onto that feeling as I navigate the moments that seem to make up my life and that feel like such hard work.  I want so to not lose touch with myself as I devote my life to my child.  I want to be able to find these moments when I need them, to find them in myself and share them with my girl.  I want for her to see me as a whole person, not so much a harried mother going through the motions.  As important as maintaining that connection is for me, it's just as important for her.

And so with that reminder and the memory of our sweet dance beneath the stars, I will hopefully start these days a little bit fresher.  Maybe with a little more patience, and a little more forgiveness.  And I hope to be able to hold onto it as we move through our days, for both our sakes.

I Believe!

"It is all very simple. Just believe."  These are the words from the mama of a lovely young woman with Down syndrome who has surpassed so many of her early expectations.  

Reading her words, I was struck again by something that I found so powerful just a few short months ago:

"Your hopes must be bigger than your fears."

Hopes don't have to be outlined into specific skill-sets.  Dreams don't have to be so specific that you will shatter if every detail is not realized.

Believing in your child is a simple thing.  A powerful thing.  The truest expression of our absolute love.

And that, I can do.

The Missing Pieces

This Mother's Day weekend our little trio took a whirlwind trip to the beautiful Oregon Coast.  There's just something about the ocean. Something cleansing, something that somehow sweeps the cobwebs from my heart and inspires me.
 

We played on the beach, watched Cora point out the birds and dogs, roll around in (and periodically taste) the sand, and then grab our hands and "run" straight for the water again and again.  We laughed and played and had a great time.

This morning I took a solo walk on the beach, the air crisp and the wind blowing, the clouds filling the sky in a way that felt just like home.

Alone is not something I get to do much of, and it's something that feeds me.  It's something I have always needed, and something that I was afraid would change too much after I became a mother.   I walked the sand toward the craggy rocks, breathing the cool salt air, setting goals to work more "me" time into my life, and thinking of how much becoming a mother has transformed me.

A few weeks ago while watching a drama on TV, a scene where a mother's adult son passed away had me in almost a panic.  I could feel her anguish.  I could see Cora on that table, and the pain was unbearable. In that moment, for just a few seconds, I thought that if I could do it all over again there was no way I could handle it.  I felt that being a mother opened up way too much possibility for anguish; that the mere idea of losing Cora hurt so much that never becoming a mother sounded like a better alternative to that possibility.

According to my husband, Don Juan, sorceror and mentor to Carlos Castenada told of "seeing" peoples' souls.  He talked of being able to immediately identify parents, because they were inevitably missing parts of their selves; holes in their centers that their children had removed.

And it rings so true.  Apart from how much motherhood has redefined my days and my values and my perspectives, it is truly like Cora has taken a piece of my soul, one that I couldn't get back if I tried.  Losing a part of oneself like that is terrifying, yet is still the most exquisitely beautiful thing I have ever done. And so it is for us, as mothers. We live our lives, so changed... tethered to the souls that are parts of us, that have taken pieces of our selves, whether these lives are with us or not.

It's with those thoughts that I snuggled Cora in my arms tonight, and read her book after book after book.  Sometimes the days are hard, the struggles frustrating, the experience lonely.  But oh how I love this little child who has stolen my heart.

How family helps me out of my Wednesday funk.

Every once in a while I think about how Down syndrome has changed my life.  It seems like it's changed it so dramatically, but I think that really it's motherhood that has done that.

I think about Down syndrome a lot.  I hear some of my friends with kids with Cora's age talk about how they don't really think about it much anymore, that they just see their child, rather than Ds.  And then I wonder why I think of it so much. There really isn't a day that goes by that I don't think about it a little, I am sure.

Whether I'm in a bad mood and find myself watching the passing teenagers faces for some type of reaction as Cora waves at them from her stroller, or whether I follow her closely as she butt-scoots around the playground, never letting go of her hand as she goes down the slide, as the other kids her age run circles around everyone.  It seems like Ds creeps into the back of my mind often, still. 

Much of the time my thoughts aren't negative, but they're still there.  I love my Down syndrome community, both her in real life and online, but sometimes it can be overwhelming always reading about milestones, frustrations and joys.  Sometimes I just need to take a step back.

Hmmm... perhaps I'm feeling a little melancholy today.  I don't know why.  Although breakfast has been ready for some time, I am letting my little strong-willed and loud-voiced girlie watch Yo Gabba Gabba for a few minutes before I brave mealtime, once again.  Sometimes I feel like just handing her the Veggie Stix and being done with it.

Sometimes it's OK to be in a mood. 

But then I go looking through the photos from last weekend spent with Nick's family in Spokane for my sister-in-law's baby shower.  What a lovely time.  And what lovely people that love Cora so much.  It's nice to be around people who can love Cora so purely and easily and don't share my constant concerns and questions.  She sure is loveable.  Even with her sass. 

So here's a glimpse for the rest of you, of my beautiful girl loving her weekend away.  Loving her family.

In case you wondered where Cora gets her whiter than white skin.

On her feet.  Even though she can stand alone a little, she still thinks she needs total support.

Loves.  Can't wait to meet Cora's sweet little cousin in a couple short months.

Three generations.  Lucky girlie!

Signing "cheese."  Because isn't that the correct thing to do when someone takes your picture?

Being outside with Daddy is the best. What a smile!

This girl loves her Grandma Pam!  The feeling is mutual!

Kisses from Grandpa.

The closest to a decent picture with nobody closing their eyes.

Enough Already

Maybe it's just me... but sometimes enough just feels like too much.

Sometimes the thoughts in my head seem to take over my body, to take over my life.  Sometimes I just feel like I can't stop the churning.  Then the little thoughts and ideas all spin together and become a big, overwhelming ball of too much.

Sometimes I just don't feel like I can handle it all.  I have days like yesterday, when I woke up overwhelmed for no good reason.  The day's events sound relaxed and pleasant: breakfast at New Seasons to give Cora her coveted bagels, music with Tallulah's Daddy, and then calming tricks for me during naptime. Mellow music on Pandora, a steaming mug of chamomile tea, a warm bath.  Nothing was helping. I even splurged on a solo outing while Cora had a date with her Daddy at the pool.  I was dropping Rescue Remedy like water, but nothing seemed able to stop the anxieties from overwhelming me.

But today is a new day.  Today I feel calm.  Today we took Cora to a lovely friend's birthday party, where she hid from everybody and then had a good time rocking out when a great kid's musician played.  Today I am relaxed on the couch with my laptop, thinking about a trip to the park.

Why is today so different from yesterday?  Why do I feel like a human today, when yesterday the world kept trying to eat me alive?

Some days the world seems too big.  Things like thinking about preschools and helping Cora deal with other children, orchestrating her schedule, and making a thousand little decisions; it always feels like there are such big repercussions for it all. 

Sometimes Down syndrome feels too big.  Sometimes the blog posts I want to read just send me into my cycles of stress and worry.  Some days I just can't keep up.  Some days the ideas and perspectives, successes and not-yet-successes I see on Facebook just make me want to hide from it all.  Sometimes I just want to hide and stop all the spinning, all the churning, all the mess in my head. 

And some days the world seems bright, the perspectives enlightening, my daughter inspiring.  So glad today is one of those days.

The best inspiration.

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.

How to Know?

Parents of young children with Ds these days are likely to hear just how much better the opportunities, expectations, and quality of life are for their children, as opposed to even 10 or 20 years ago.

This is attributed to better medical care, Early Intervention services, and largely, in my view, to inclusion.

Being counted in as a member of society is critical.  Being a student in a classroom with other typically-developing peers, participating in community events, being seen and heard... all these factors help to raise expectations for our children.  And our children are rising to meet many of these expectations all the time.

But like other parents, I often find myself wondering just how much to push and just how much to expect.  There is such a push to prepare for school, to make sure our children are in age-appropriate typical classroom settings.

I am starting to look at preschools.  I know she won't start for another year, but it suddenly feels like it'll be here before we know it.  Her Early Intervention team feels that she won't benefit much from the school district's special education preschool and that we should start looking for a typical preschool classroom for her.  The daunting prospect of putting her in school is already giving me butterflies in my stomach.

And the whole thing has gotten me thinking...

I'm looking at taking her back to the library story time events, since her naps are finally shifting enough to permit this.  And I wonder if I should take her to the 2-year old class or the 1 year-old class.  She just turned 2.  She's small.  She doesn't really talk.  She doesn't walk.  Heck, the last time we were in the 1-year old class (about a year ago), she was one of the very few non-walkers and the 1 year olds were doing some pretty impressive things (like following instructions and participating in activities.) Thinking of what the expectations for the big 2-year olds makes me nervous.  Would she be ready?

I guess the question I've been asking myself is whether I want to constantly push her beyond where she is developmentally and expect her to be with her same-age peers.

If we push her so much will there be room for her to be where she is?   

I want to value where she is now.  My perfect moments now are when I am on the floor with Cora, delighting in the things that she finds hilarious, watching her interact with her surroundings, seeing the sparkle in her eye as she discovers something new.  Sometimes I find myself losing sight of that beauty when I am too focused on her next steps.  I want to give us both time to enjoy where she is now, happy to move forward when she is ready.

If I am constantly looking to push her, does that mean that I am not accepting of where she is?  Does that mean that I don't think that where she is is good enough?  

Not long ago while playing with blocks she'd toss them around, maybe halfheartedly trying to stack one or two before knocking them over.  And I would wonder whether I should push her harder, knowing that one day soon she will be measured by her whether she can stack blocks.

But today I watched her meticulously try to stack her blocks for almost half an hour.  For the first time, she really tried.  She hasn't mastered the interlocking pieces quite yet, so she just tried balancing them on top of one another.  And then the little smartie tried some problem solving: she pushed them over to the couch so her tower could lean against it, allowing her to stack a little higher.  I looked on with such pride.  I felt such accomplishment for her, even though she hadn't quite mastered the skill.  And I realized that I really just needed to wait for her to be ready.

I don't know what it is that makes her ready.  Somehow turning 2 has been a bit of a turning point for her.  She is eating more, nursing less, self-feeding with utensils more easily, and suddenly willing to drink from a cup.  She finally seems interested in moving her body.  These steps that I have been worriedly waiting for her to take are now happening before my eyes.  I don't know why she is now ready for them, but she is.

So I will keep questioning myself I'm sure, hoping that I can make good choices.  I'll keep watching her, keep playing with her, and keep providing her opportunities to learn.  I will try to step back and let her try, even though I want to scoop her up and make everything easier.  I will continue to work on being patient, waiting for her to show me what makes her shine.

It's Flying By

Marking the passage of time as we put up the new calendar feels bittersweet this year.  Before Cora, it signified only more candles on my own cake.

But now that I am watching Cora grow too, the moments seem more important, the small milestones more momentous. 

In just two weeks we'll be putting another year of her life behind us as well, as she will officially become two years old.  And even though she is still a baby in some ways, the little girl in her is emerging more and more each day. 

So much of the time her development seems to happen in slow motion, as she learns to accomplish things in gradual layers, rather than at the warp speed that comes naturally to so many other children.  But I look at her now and see how much she is accomplishing, and how impossible it is to take it for granted.  I look at photos of her even months ago and see how changed she is. 



And of course, so much of me wants to preserve her as she is, to stop time from passing and revel in holding my baby tightly.  The rest of me can't wait for her to reveal more of herself to me as she grows and changes.

Yes, bittersweet.

This was a lovely year.  A year of some stresses, to be sure, but of many firsts and many wonderful moments with our little family and the rest of our family and friends.

I'm looking forward to another year of firsts; to watch Cora grow into toddlerhood.  The list of things she needs to learn seems daunting, yet I know in my heart that she will get there and that where she is right now is just fine.

Silly goose!

Hello.

I guess 31 days of straight posting left me needing some breathing room, since it's been two weeks since my last post.  Probably the longest break in quite some time.

The space has been filled with rain, not nearly enough sleep, a gazillion appointments for both Cora and for me, and a couple of writing projects for our local Down syndrome association; one for a booklet on heart surgery, the other a speech for an event this weekend.

Right now I am waiting for Nick to bring Cora back for her pre-bed nursing session.  I love that time, but I am so coveting a little time alone on the couch right now.

Trying to find space around here has become an oxymoron.  

Of course, one of the cats is crawling around on my lap, desperately seeking some love.  And I feel horribly guilty every time I keep pushing her off.  She needs Mommy too, right?

But sometimes Mommy needs to be Leah.  Sigh.  Without a child/two cats/a husband pulling at my ankles.  I don't get to be just Leah very often these days.

But I've taken a step.  Yes, I've put out an ad for a babysitter a couple hours a week.  Not much, I know.  But it's a start for my terribly attached almost-two-year-old girl, and probably more of a step for me.  Dependency must run both ways.

I've had a few posts running through my head for the past two weeks, with imaginary photographs I haven't taken to accompany them (yes, it's hard these days when Cora seems to hide from the camera or frown at me when I point it at her).  I'm sure I'll get around to updating you all soon enough.

But even without a great deal of substance to say, I needed to come back.  Just a little.  But that's okay, I've decided.

So, for those that need their own Little Beanie fix, since I sometimes forget that you don't all get your own little Beanie girl every minute of every day and night. (Yes... almost every minute of every night.  That may be a slight exaggeration, but I swear, this girl does not sleep all that much.)  Here is a little sample. 

Cora the artist.

What brush strokes!

Working so hard to swish that brush around in the water.... 

"Look what I did, Mama!"

So proud!