Down Syndrome Awareness and Acceptance

Well, it's October 31st. The 31st day of  Down Syndrome Awareness month.  For the last five years, I have chosen to honor it by posting here every day.  But this year, I didn't want to do that.

Partly, it's because my gradually dwindling posts on this blog have been intentional.  I want to honor Cora's privacy and not share too much of her here.  And equally responsible is the fact that I've been feeling that what I do have to share feels muddy and mixed up and is sometimes hard for me to sort out.

Of course, I can always share about how wonderful Cora is.  And she is.  Of course she is.  She is beautiful, radiant, and delightful. She is so loved, and for such good reason.

She is in full-swing in her kindergarten class these days. She is learning alongside all her peers. Learning to write, learning letters and letter sounds, and sight words. She has developed impressive skills with scissors, and has already cut her bangs twice in the last few months.  Just yesterday, she drew her first recognizable drawing. She has so many friends, and we get to see kids greet her with delight whenever she appears.  One of her friends regularly announces his intent to marry her. Another of her classmates has told me that Cora is her best friend.

She impresses us every day. Because she is a wonderful kid.  She is a wonderful kid who has Down syndrome.  It affects most things about her, from how she processes the world, to how she learns and communicates. It is a part of her that is inextricable from who she is.  So I can share how wonderful my little girl with Down syndrome is and hope that that counts as my part of awareness, but lately that just doesn't feel meaningful enough.

The things that have felt meaningful to me lately are things that I've been reluctant to share.  Because they're not all sweet, rosy, feel-good sentiments.  They are complicated and stressful and concerning.

They're not specifically about Cora, but about the world we live in.

So I struggle with what to focus on. I can choose to focus on the things for which I am grateful; the things that make us so lucky. We are so lucky that Cora is in a wonderful classroom, with a fabulous teacher, a teacher's assistant and an amazing paraprofessional.  We are so lucky that she is in a school and district that wants to include her in a regular general education classroom.  We are so lucky that she has a dedicated and loving special education teacher to help her and oversee her schooling.

We are so lucky that our family lives in a community with diverse and incredible resources for families supporting people with disabilities.  We are so lucky that I had the opportunity to participate in a year-long training program to prepare our family to support Cora in her preparation for and entrance to kindergarten.  We are so fortunate that I had the time to spend learning, seeking out resources, and preparing to advocate for Cora's education.

We are so lucky that our community loves and supports Cora.

We are so lucky.

But so many people aren't.  Many don't have easy access to support resources, or the time to pursue those resources.  Many of my own friends are in battles with school districts over their children's access to a fair education. Many are long, intensive, exhausting legal battles that drain them of time, money, and energy.

My family is so fortunate.  But the fact that I feel that way is so disheartening.  It is so sad to me that our positive experience is considered so special when compared to that of so many others. It is so frustrating that it is necessary to spend countless hours preparing to advocate for my child.

So much of it is so frustrating to me.  So when I choose not to share many of my thoughts, it's largely because I am so full of concerns and disappointments and don't know how to convey them without seeming to be consumed by the doom-and-gloom. That doesn't feel very helpful.

It's a tricky place to be, and one that takes up so much of my energy of late.  There is the part of me that perseverates on the problems, and the part of me that just wants to celebrate and support my wonderful child.

My simplest truth is that this girl deserves so much.  She deserves to be the valued, beloved child that she is. She deserves to be seen for who she is, and to participate just like everyone else.  She deserves the supports that she needs to help her be successful. She deserves a great community, and a school that supports and appreciates her.

She deserves it all.  And it's our job to help her access it.  It's our job to educate and advocate and give her opportunities, choices and experiences. I just wish that we lived it a world where it didn't need to be such hard work.

Making Waves- 31 for 21

There is a lot of talk about Down Syndrome Awareness Month spiraling around out there.  I haven't specifically talked about my decision to blog in the 31 for 21 challenge this month.

Part of it is because it is a personal challenge to post something every day.  Part of it is because I feel like I needed an excuse to start writing again, and I know that when I start to write more often it becomes easier to write.  I find that I have things to say, and even when I don't, I enjoy the process and I enjoy sharing about Cora.

For me, promoting "Down syndrome awareness" started as something pretty simple. I started writing as a way to communicate with friends and family, but also to express some of the thoughts, feelings, joys and worries I was discovering as I went through the life-changing process of becoming a parent while beginning to intimately consider how disability is perceived and treated in our culture. 

Knowing how much the idea of Down syndrome scared me when Cora was born, I wanted the people I cared about to have the chance to see Cora like I saw her; to see her as a person.  I hoped that by sharing, I could help gradually dissolve some of that fear, so others could be more accepting of her.  Perhaps my initial motivation was selfish, as my goal was really to help create acceptance for Cora as an individual, not necessarily for the disability community as a whole.  The feedback was positive, so I felt like things were heading in the right direction.

Since then I've had a lot of opportunities to consider just how vast that endeavor toward awareness and acceptance in our culture really is.  I have heard enough perspectives to break my heart and make me feel like I'm up against the impossible, and then to give me hope and inspiration, only to make my head spin.

There are so many BIG discussions about awareness and acceptance for those with differences.  We need to keep talking about these things:  About being seen and appreciated as different and unique individuals.  About how knowing one person with a disability does not mean you know all people with that disability.   About how we want society to see our children for who they are, rather than judging them by the way they look or act, or by how they learn or speak.  About listening to those with disabilities and remembering that it is about them first.  About recognizing that what makes people valuable is not only what they produce.  About what kind of world we want our children to live in and how we can help get there.

We live in a time when there are so many voices weighing in, so many people wanting to promote awareness and acceptance, and often in very different ways. 

And I want to be a part of these conversations.  I want to keep listening and keep thinking.  I want to hear the voices of the parents and the self-advocates and the voices of those that aren't speaking up for themselves.  There is room for so many voices and so many points of view.  Sometimes I don't know exactly where I fit into it all, or exactly what I want my voice to say.

But in the meantime I am learning.  I am finding a voice, little by little, and sharing when I feel brave or inspired.  I may not be reaching an enormous audience, but those that I have reached have shown me the waves that even my small ripples can make. And the people that are teaching me are helping make more waves.  And I just can't wait to see how Cora herself will continue to impact the world.

Our individual voices and stories, as small as they may be, can still make an impact.  Even if we're not pounding the pavement or writing laws, even if we help only one person at a time, or work toward one goal at a time, we can be making small changes.  And lots of small changes can add up to some BIG things.  That, at least, is my hope.

The Process- 31 for 21

I often hear parents mention how much work and practice goes into building meaningful communication with their children with Down syndrome.  I've heard again and again that it often requires significant purposeful practice to get to the point of regularly and effectively communicating desires, needs, or feelings, often even after a child has the building blocks to do so.

And it certainly is so with Cora.  But sometimes I wonder why it is such a process.

Take this morning for example.  Cora definitely has the language skills to tell me what she wants to eat.  She had finished most of her breakfast but still seemed hungry, so I asked her what she wanted to eat.

First she signed "fruit."  So I said, "Ok, fruit" and started to get her favorite fruit sauce.  She immediately starts shaking her head, saying "Uh uh! Uh uh! Uh uh!" and signing "no fruit."  

Then she says "pbpbpbpbpbmmmoooodeeeeee," which is her word for smoothie. When I reach for her smoothie she again tells me no.

Finally she signs "yogurt" so I ask her if she really wants yogurt.  She gives me her "yes"face with an enormous grin and then signs "yes." Of course she immediately launches into a drawn-out, smiley "no", but it's the one that she uses when playing.  

So yes, she really wanted yogurt.

So if she has the tools to tell me, why is it such a process?  It's like this so often.  She either doesn't respond, repeats my questions back to me through sign, or she uses her signs and words, but runs through a long list of options before finally clueing me in, like today.  It doesn't feel like a game and I don't feel like she's just indecisive.  Maybe she is simply practicing.

I know that she understands the words.  I know that she can communicate what she wants.  But sometimes drawing it out of her is painfully slow.  Where is the disconnect?  How much of it is the innate contrary nature of a two-year-old, and how much of it is part of the mysterious effect of her extra chromosome?

Either way, it doesn't change the fact that it doesn't come easily.  I see that she is learning and making progress, but all this patience is tiring me out.

Written on Your Face- 31 for 21

I wrote this last year during Down Syndrome Awareness Month.  It's worth sharing again.

My best friend worked at a day camp a few years ago.  Thinking back, I remember her telling me about a couple of her favorite kids.  After Cora was born she talked more about them:  about their wacky, silly senses of humor, their enthusiasm, and about how so much of them stuck with her over the years.

Oh yeah.  They had Down syndrome.

She told me that she had a conversation with one of the boys where he told her how it was hard to be judged by the way you look.

I know that is a concern that many parents like me share.  We worry that our children will be judged by the differences written on their faces before they have made an impression as individuals.

I'm sure it will happen a lot.  And as much as I hate thinking about it, the thought of Cora feeling that way about herself breaks my heart a little.

One could argue that having a disability that is recognized by physical characteristics alone could have some benefits.  Perhaps people will have more patience or understanding upon recognizing her difference.  Maybe they will postpone judging.

But some will definitely judge faster based on what they see.  Because the familiar characteristics of Down syndrome are visible, in a way like a brand.  With that brand comes a lot of expectations, most of them low.

What you can't see in someone's facial features, though, are their talents, their gifts, or the way they can shatter expectations. 

From where I stand now, which is admittedly pretty early on in my consideration of disability, the best way to gradually start to diminish the judgments has to be exposure.  It starts in our communities, in our baby groups, story times and social media.  And it's critical in our schools.

As incredible as we know inclusion is for our children with disabilities, it's also so important for the other children.  It's important for those small children to sit side-by-side with their peers with Down syndrome and autism and others who are differently-abled.  It's important for them to have the opportunities to know people like Cora and to start to remove that insipid fear of the unknown.

I wish I would have had the chance to grow up in a community and in schools like that.  I wish that it didn't take Cora's birth to make me realize that awareness, acceptance and support is so critical to all of us.  But I am here now.  And now I can do my little part to make sure that Cora is seen, that she is heard, that she is a part of her community.

I can't remove judgment from people's minds and hearts.  I can't erase the fact that Cora's diagnosis is written on her face.  But I can continue to advocate for her, to give her the best opportunities I can, and to help ensure that she is included; for the good of her and for the good of our society.

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.

Finding Hope

My emotions are running the gamut right now.  There seems to be so much to fear, especially after seeing the horror of the bombing in Boston and the ongoing concern and frustration over the responses (and lack of responses) to Ethan Saylor's death.  Last week many of us bombarded Twitter with #justiceforethan.  I finally signed up for a Twitter last week for the sole purpose of participating in the vigil and and my Twitter account was suspended the next day, presumably for spam.  Sigh.  I'm still waiting for a response to my appeal now.

Cora's recent illness with fever has resulted in even less sleep in our house, which is saying a lot, since we are in a perpetual state of sleep deprivation anyway.

So what is it that is keeping me going?  What is keeping me from feeling like throwing in the towel?

Last weekend Nick and I attended All Born (In), the Northwest Down Syndrome Assocation's yearly conference on cross-disability inclusion.  The prior year I went and tried to focus on details relevant to the toddler/baby years with some sessions on IEPs and rights, etc. And it was all a bit much for me.

This year I went looking for a bigger picture.  And you know what?  I found just what I needed.  I can't even tell you how many times I had to wipe away tears as I heard the testimonies of several incredible speakers.

I listened and learned about how to raise a visionary by keeping your own vision always in sight.  I re-affirmed for myself the importance of presuming competency in our children.  It is so easy to constantly question, so I am glad to have been reminded that perpetually questioning our own children's abilities can be more limiting to them than their disabilities. 

But the most poignant thing I heard, and which rang true in that way that truths so often do, when you realize you've known it all along, is that our hopes must be bigger than our fears.  

Our hopes for our children and our belief in their gifts, strengths, and abilities has to be stronger than the fears that they won't be accepted or that they won't achieve, or that even worse things may happen.  These words were especially difficult for me in light of Ethan Saylor's death.  The fear of my child suffering that kind of abuse has the power to incapacitate me.  And I can't give fear that kind of power.  I can't let it take over me, and I certainly can't let my fear limit my daughter.

Each person has gifts to share with the world, a way to contribute to their communities and their societies.  As parents it is up to us to help our children discover and realize these gifts.  It is up to us to be creative, to be brave, to make ourselves uncomfortable, even, as we help our children be seen, as we help our children form relationships and become contributing members of our society.  The last thing I want for my child is for loneliness to become a hurdle more disabling than any diagnosis could be.  Giving my vision of her life over to my fears could well help those fears to come true.

Yes, horrible things do happen.  It is so hard to erase our fears that our children will be victimized as a result of their disabilities.  But we must try.  We must try to keep our own visions BIG enough to outweigh our fears.

Thank you to All Born (In), to Connie Lyle O'Brien for reminding me of the importance of hope over fear, and to Roberta Dunn for helping me refine my visions, especially when the world looks so dark.

The Death of Robert Ethan Saylor- A Mother's Greatest Fear

I have been struggling lately.  Wanting to add my voice to the throngs trying to be heard, but unable to really put my words together.

And I've been afraid.  Oh, there are so many things to be afraid of as a parent.  Add a disability that makes your child many more times likely to be a target of abuse and the worries just multiply exponentially.

The death of Robert Ethan Saylor has been making this fear seem so much more real.  This is a man whose death was blamed on Down syndrome.  Although his death was ruled a homicide, no charges are being filed against the three officers at whose hands he died.

At this point the talk is all about providing training so that these types of situations don't occur again.  And of course they are needed.

But the investigation into Robert Ethan Saylor's death seems to have stopped after the grand jury ruling.  There is a large push by families of those with Down syndrome and other cognitive disabilities to instigate an outside investigation, one that has not been performed.

The fact is that a man died.  The world can try to blame Down syndrome or a heart condition or argue that his parents failed and that he shouldn't have been left alone.  But to all of the parents who are raising children with intellectual disabilities, parents who are trying to raise children with some kind of independence, children who are able to not only be a part of but actually contribute to our society... what kind of message is this sending us?  What kind of message is it sending our children?

We know that our children are worth it; that they are valued human beings.  But wiping Mr. Saylor's death under the rug and accepting that Down syndrome is to blame leaves all our children vulnerable.  How can we send our kids out into a world that views their abuse as justified?  How can we settle for the message that our children are worth less?

We must speak out.

You can speak out too, if you haven't already.

You can sign the petition at Change.org for an independent investigation of Robert Ethan Saylor's death.

PLEASE SIGN THE PETITION!

You can write to the U.S. Department of Jusice by e-mail or by mail:  (Thank you to my friend Meriah for posting this information along with the sample letter than I am including here.)


AskDOJ@usdoj.gov

U.S. Department of Justice 950 Pennsylvania Avenue, NW Washington, DC 20530-0001

According to a press release from  the State’s Attorney for Frederick county, Robert Ethan Saylor died as a  result of three individuals’ actions on January 12, 2013 in Frederick,  Maryland. His death was and remains classified a HOMICIDE.

Robert Ethan Saylor was a healthy, 26-year-old man, who also had Down syndrome.

However, the above press release also states that Robert Ethan Saylor  was “…compromised by his Down’s syndrome…” and concludes that no  criminal charges are necessary in Mr. Saylor’s death.

I believe  that the above decision speaks to a continuing bias in society to see  Down syndrome as a disease, those with Down syndrome as lesser humans  and not deserving of the same respect warranted to those without Down  syndrome. I strongly believe, and do not stand alone, that it is a  violation of basic human rights to view Mr. Saylor’s death as somehow  due to his genetic makeup when his death has been classified a HOMICIDE.

I’m contacting you today to ask you to launch an independent inquiry  into the death of Mr. Saylor. I am asking you to prove to me that your  department believes in the humanity and equality of everyone, including  those with intellectual and developmental disabilities.

Respectfully,

 YOUR NAME 

A Mother's Hope: World Down Syndrome Day

Today, March 21st, is World Down Syndrome Day.  Chosen because 3/21 signifies the three copies of the 21st chromosome that are responsible for Trisomy 21 (Down syndrome), it is a day when those who love someone with Ds and those that have Ds shout it from the rooftops:   

Down syndrome is natural!  Down syndrome is beautiful!  My life is enhanced by Down syndrome!

These are messages that I, too want to share.  They are things that I've said before and that I hope I convey often.

Yet, as I celebrate my third WDSD, the thought that keeps coming back to me is that for all these pronouncements, for all this awareness, there is still so far to go.

A couple of weeks ago I had an experience so familiar to parents of people with Down syndrome.  Someone in the periphery of my life confessed their admiration for me.  He went on to tell me that there are so many people that would have chosen not to walk this path that I now live; those who would have given it all away.  He went on to talk about how knowing that there are people who "are worse off and who have it harder" inspires him to live his own life fully. 

And I know he meant well.  But that sentiment: that I am one of those that is worse off because Cora is in my life; that stung.

The fact is that Down syndrome is still seen as something to pity.  Those who truly love a person with Ds are still seen as heroes.  Our exclamations that we love our children and that they are worthy of that love is somehow not quite believable, even as they ooh and aaah over the adorable photos of our adorable children. We want the world to know that our loved ones are smart, are funny, are interesting; are in truth, full and incredible human beings.  But sometimes getting this truth out into the world seems like a long hard road.

And that is what I would like to see change.

I know that my child is seen as an other.  I see it on strangers' and acquaintances' faces, though she is only 2 years old.  I know that my child is part of a group of people that are still considered acceptable to marginalize.  Heck, as much as it pains me, I know that many people don't even see her as being fully human, fully worthy to be living this life that she lives.

And in this process of being her mother, I've become something of an other too. I am a Down syndrome mother. 

Strangely, although people-first language is supposed to apply to those with a disability, it does not apply to those who love them or raise them.  For some reason it is still acceptable to define me by the fact that my child has an extra chromosome.  Not simply a mother, but a special needs mother.

As much as I'd love to be just another mother, and as much as I wish that my daughter's own differences didn't set us apart, it still seems that the world just isn't quite there yet.  Until differences are seen as part of the natural and normal web of life, we're not there yet.  Until words that were once meant to describe people like Cora stop being thrown around lightly to describe anything stupid and worthless, we're not there yet.

Sometimes this seems so daunting and so impossible.

But the rest of the time, I am simply and completely blown away by what I am learning as I walk this path.  Despite the challenges, the fears and the worries that I battle now and then, this is a life of joy and of love.  It's a life I wouldn't trade for anything. The lessons I've learned in the past two years have shown me how important it is to widen my focus and learn to see the value and importance of every human being.

And so, as I observe and celebrate today, I hope deep in my heart that in this life I will be witness to a shift in perspective.  I hope that this enormous community effort to raise awareness of people with Down syndrome and others who are differently-abled can help to bring about the understanding that all people are different, and that difference is natural, valuable, necessary and something to appreciate.

I hope that my daughter will be able to live her life in a world that continues to change and evolve and that accepts her as a whole and valuable human being.  I hope to be a part of this change.

When Low Tone Meets Low Motivation

 
I hear a lot from parents of kids with Down syndrome, telling the world how very hard their child works to reach milestones and accomplish things that come easily to the typical population.  How their child works tirelessly, pressing forward, eager to achieve, never giving up. 

And then I wonder:  why doesn't my child seem to have this pressing drive that so many other parents see?

In my reading on raising a child with Ds, I read that often children with Ds will find shortcuts and take "the easy way".  This isn't just due to laziness.  It's often because low muscle tone and hyper-mobile joints with loose connective tissue make it difficult to use muscles easily.  Muscles with low tone are not always ready to do work like typical muscles are, so extra signals need to be sent to make any movements.

So a movement that comes easily to a typical child may be very difficult for a child like Cora.  Case in point:  getting onto her hands and knees to crawl, bearing weight by standing, climbing up stairs, moving to a seated position.  A child with low tone actually needs to be stronger to do the same movements someone else will do, because greater strength is needed to stabilize loose joints and more work is required for even simple movements.

Reading more about low tone this weekend clarified to me why Cora does many of the things in the way that she does.  It helped me understand a little better what low tone means to her and why it is so hard for her to do certain things.

And it makes sense that if someone, even you or I, could adapt our movements to make certain things easier, we certainly would, wouldn't we?  

Well so does Cora.  And that's why she butt-scoots instead of crawls, and is just now learning to do things that very young babies often master well over a year before she was even willing to try.  The fact that she hasn't had much practice doing these things makes it that much harder for her to do them.  Her muscles haven't figured it out.  Her muscles haven't strengthened in the ways needed for her to do these movements.

But the difficulty alone doesn't exactly explain her lack of motivation.  I see pictures and stories of children Cora's age with Ds who are walking, taking steps and moving all over the place, low-tone and all.  Their parents constantly applaud their fierce determination.  

Cora just isn't doing that.  This is largely because it's just not her priority and it's not in her personality.  Children are often said to be either "motor driven" or "observers."  It is clear that Cora is an observer.  That she would rather read, and sing, play and communicate than try to walk or crawl. 

And, like her mother, she seems to not want to do things when they are too difficult.  I admit it.  When things don't come easily to me I am reluctant to expend the energy.  And it seems that Cora is following suit.  If there's an easier way to do something she'll likely find it.  Or she simply won't do it all until she's darn good and ready.

Happily, she has been making progress in gross motor recently.  On her birthday, she began to pull to stand regularly.  In the past she could do it, but seldom did.  Especially if anyone was looking.  But she seems to have figured out how to use her legs to get up, and is now pulling up all over the place.  Last week, cruising on the couch finally "clicked."  Although she could do it months ago, she just didn't.  But now she's learned that she can do it, and she's finally found the internal motivation. 

We still need to work on independent standing, bending her knees more (especially when sitting down), using a push toy and increasing her overall stability to move her toward walking.  It may take a while yet.  And with Cora it is so hard to say.

I've learned that it's really all about waiting until she's ready.  Trying to wait patiently and not get too frustrated seeing 6 month old babies doing things she's just now doing at 2.   Pushing her to do movements that she doesn't want to do doesn't work.  When she wants to, she'll figure it out.  And she's doing it; albeit very slowly.

For the record:  this is pretty much just my thoughts on Cora's gross motor skills.  I am fully aware of her strengths in other areas: signing, social skills and interaction, and extreme cuteness, to name just a few. 

An Overdue Thank You - 31 for 21

I've been reading a lot of blog posts about Down syndrome this month.  That's not surprising, since so many people are participating in the 31 for 21 blogging challenge or are posting their own tributes to Ds Awareness month. 

Many of the birth stories I've come across have talked about nurses and doctors that repeatedly express sympathy about their child's diagnosis; some of them unable to stop crying in the parents' presence.

But we didn't get that type of reaction.  I don't know if part of it is because we were the "home birthing" family who brought their baby into the hospital on Day 2, and maybe there was a stigma about that.  Or maybe because they thought that we knew all along.  Or heck, maybe because we seemed so "together" that we didn't need sympathy.

But no, nobody came and told us they were sorry.  I'm sure I'd have been pretty upset if they had, but  part of me felt like nobody was acting like this was as big of a deal as I thought it was.  We did have a chaplain visit, asking us if we wanted to talk.

But most of our nurses and doctors were professional.  Some were kind. One was rather mean.  Others were amazing.

One of our nurses (in hindsight I don't remember if she was actually assigned to Cora or not) came to us in the NICU and told us that her daughter had Ds.  She told us stories about her toddler, and about her medical history.  She told us that she had adopted her daughter after meeting her as a patient in the hospital and that she had come to United States from abroad for medical care.

In the first few days after Cora's diagnosis I would sit by her bed all day, taking only a few hours at night to go sleep in the parent room in between pumping and trying to feed her.  I held it together most of the time by her bed, but every time I walked into the parent room with Nick I would break down and sob.  I would tearfully read passages aloud from the books I was given and then fervently search for groups and real information online.  I discovered the Northwest Down Syndrome Association and ordered a New Parent Packet, but it couldn't get to me soon enough.  I needed someone to talk to, to tell me that things could be fine.  To show me that life was still life.

And our nurse friend did that.  Even though her introduction to parenting her daughter was different, she was living a version of the path we were now on.  She had chosen this life, in fact.

She provided me a kind of lifeline.  She was the first Ds parent I met after Cora was born.  I don't even remember all of what we talked about, even.

But talking with her was the first time I felt like someone had an inkling of what our life could be like.  There was no pity.  There was sensitivity, and for that I am thankful.

I have seen her at a handful of other events in our community since then.  We always talk for a few minutes and share updates on our daughters.  But I don't think I've ever really told her how much I appreciated her in the hospital.  I've never told her how much it meant to me.

Looks like I have a thank you to deliver.

My sweet NICU girl under the bili lights.  Oh the sweet cheekies!

"The Country of Normal"- A Guest Post - 31 for 21

I have had the absolute pleasure of meeting some incredible people since Cora arrived in our lives.  I've forged relationships with families on my online Babycenter forum, in the blogs that I follow, and even in person here in our local Down syndrome community.

One of my very favorite families is the Carsons.  We met Susan, Paul and Anthony when Cora was about 10 weeks old, after meeting Susan on an online message board.  We have had the chance to spend time on several occasions with their beautiful family, although not nearly as often as we'd like.

Susan and Paul are a blast.  Fun, energetic and positive and they have such great perspective on their lives with their gorgeous boy, Anthony, who is almost 2 years older than Cora.

Anthony's dad Paul is pretty inspirational to me.  For the most part it's the mothers who are the visible outspoken participants in our Down syndrome community, while so many fathers quietly offer support from the sidelines.  But not so with Paul.  I learned that he is a wonderful speaker when I had the opportunity to hear him tell Anthony's story at one of the NWDSA presentations last spring.  He is hilarious and warm and loves his boy so, so well.  Just one look at the two of them together and you know that their bond is special, indeed.

I love hearing about the adventures of their family, reading Susan's perspective on their life, and seeing the ridiculously adorable pictures of Anthony at Susan's blog, Keeping Up With The Carsons.

Yesterday's post (a story written by Paul) was remarkable, so I asked them if I could share it here.  Susan and Paul have graciously allowed me to share it with you.

 “The Country of Normal”
 (a fable by Anthony's Dad)

If you travel, there’s a country you may have visited called Normal. You may even live there. Normal has a bit of an overpopulation problem – it seems that everybody wants to live there. The folks who live in Normal tend to talk the same way, dress the same way and its citizens are encouraged to paint between the lines and do their best to fit in.

Every now and then, someone will be born in Normal who’s a little different.

For some reason, these different folks seemed to scare the inhabitants of Normal. If you were different, you would find that you’d been asked to leave the country and that your citizenship in Normal had been revoked.

The Governor of Normal wanted everyone to feel safe. “When things are different, folks aren’t sure what to expect and that scares ‘em!” he explained, “Birds of a feather!”

First, the Governor began to worry about people who’d been born someplace else: “They’re originally from a different country – they talk funny and believe in a different book about a different God! That scares folks and makes ‘em doubt things! If other folks believe something different, that could mean that there’s a chance that what I believe could be wrong.”

Then, the Governor decided everyone whose skin happened to be a different color should be asked to leave – because that probably was a good sign they were originally from someplace else anyway.

The Governor felt that things still weren’t Normal enough. So everyone who happened to have been born with an extra chromosome was told they had to go someplace else. “We all like to do things at the same fast speed here in Normal, and, well, you just aren’t fast enough…”

 Then it was time to deal with people whose intimate relationships were different – “Having two mommies or two daddies isn’t the Normal way,” said the Governor. “Those kinds of relationships threaten our Normal relationships.” The Governor couldn’t really explain why that was, but everyone agreed it was probably for the best.

He was making progress, but things still weren’t Normal enough. There were all these Heavy-set people who just didn’t fit in. They would have to go – they were eating all the food. Then there were the really old people – and the young people with the uncertain new ideas. It seemed the more the Governor looked for people who didn’t belong, the more of them he found.

One day the Governor overslept and when he woke up he realized he was out of coffee. So he decided to walk to the store to get some – but the store was closed. He remembered it had been run by someone who had been born someplace else. He continued down the street and realized that all the other stores were closed as well. They’d been owned by fat people or gay people or slower people – they’d all moved away. The Governor had wandered all the way to the farthest fence near the border, and he realized he was all alone – he was the last one left. He dropped to his knees and without really knowing why, he began to cry. “What have I done? I never thought I’d be all alone – this isn’t what I wanted!” he cried.

Suddenly a voice called out to him from beyond the fence, over on the other side. It was a little girl. Her skin was darker than his and he could tell by looking at her that she’d been born with an extra chromosome – that she was different. “Don’t cry, mister. You don’t have to be alone – we have room for you over here."

She opened up the gate and she took his hand. Here were all the people who’d left – all of them – and they were living together. Everyone seemed happy – and there were so many differences, all mixed together, it was impossible to tell who was who. Funny how it didn’t seem to matter anymore.

“You’re so kind to take me in,” he said. “What is this place?”

“We call it the Country without Fear,” she replied. “That’s the only thing that can’t live here.”

You can read the original post here at  Keeping Up With The Carsons- The Country of Normal and become a follower of Susan's blog.

For more from Paul, check out his contribution to the December 2011 NWDSA newsletter, "You're a hero to somebody- clown shoes optional."  (Page 5)

Do you Celebrate? 31 for 21

A few days ago a question was posed on one of my online parent forums.

The question was, "Do you celebrate Down syndrome or just celebrate your child?"

It's an interesting question.  I know a number of people who love their children with DS, but don't love Down syndrome.  People that aren't really ready to celebrate the presence of DS in their lives.   (For beautiful and poignant words on this, read this post by Gillian Marchenko.)

It's true that Down syndrome comes with challenges.  Some of these concerns can be significant: medical and developmental concerns, concerns about inclusion and acceptance, prejudice and "ableism", and each parent's individual process of coming to terms with their child's diagnosis.

Most people don't wish for their unborn child to have Down syndrome.  Many, if not most of us experienced grief and disappointment when we learned of our child's diagnosis.  And we're all in different places in our feelings about it.  Even for parents who feel that they've moved past that grief, sometimes it still bubbles up, surprising us.

No, I don't think about it all the time.  No, I don't always look at her and see it.  Of course so much of the time she is just Cora to me.  But I guess I am early enough into parenting her that I still think about it a lot.  There always seems to be something that we are working on, or working through, or trying to accomplish or resolve that is affected by the fact that she has DS.

Because I don't have any other children, I don't really have the perspective to know how much DS affects my parenting and my feelings.  I don't have the experience to know how much of my feelings come from simply being a parent or whether they are because I am a parent to a child with DS.  I can't tell you that parenting Cora is not much different than parenting my other children.  In fact, when we consider the idea of having more children, I admit that the idea of having a child without a disability seems like a foreign and even intimidating prospect.  I feel like my perspective has been so shaped shaped by the fact that Cora has DS that I can't envision parenting without it.

But as Cora's parent, I am in love with Cora, Down syndrome included.  I don't love her in spite of DS and I don't love her because of DS. 

I just love her.  

Down syndrome is a part of her, in each and every tiny little cell.  It affects many aspects of her life, and in turns, affects my life, as well.

It is part of what makes her who she is.  I can't imagine the idea of seeing her without it, because then she wouldn't be her.  So, when it comes down to it, that means that I love DS.  Would I take it away if I could?  I don't think so.  I'd consider taking away some of the challenges, the heartache, the health concerns, sure.  And I do still have my own moments of sadness here and there.  But would I take away something that is so much a part of her?  Especially since I have truly come to appreciate so many individuals with DS?

Whether it's a stereotype or not, I definitely find something valuable and important in people with DS, and I have learned to celebrate it. 

As one of my favorite blogging friends, Meriah at With a Little Moxie has written, "And that is perhaps the best gift – the most unique gift – that people with Down syndrome bring: gifts from their heart that have the potential to make the world captivating, caring, delightful. Exquisitely unique."  (Check our Meriah's published article in Parents or read her blog for more of her insights.)

I celebrate our community, and my incredible group of friends, online and in our local community.  I celebrate this life-changing, inspirational thing that has entered my life.

So yes, I'd say that I celebrate having Down syndrome in our lives, even if it's not always black or white.

What do you think?  Do you celebrate DS?

Written on Your Face - 31 for 21

My best friend worked at a day camp a few years ago.  Thinking back, I remember her telling me about a couple of her favorite kids.  After Cora was born she talked more about them.  About their wacky, silly sense of humor, their enthusiasm and how much about them stuck with her over the years.

Oh yeah.  They had Down syndrome.

She told me that she had a conversation with one of the boys when he told her how it was hard to be judged by the way you look.

I know that is a concern that many parents like me share.  That our children will be judged by the differences written on their faces before they have made an impression as individuals.

I'm sure it will happen a lot.  And as much as I hate thinking about it, the thought of Cora feeling that way about herself breaks my heart a little.

One could argue that having a disability (for lack of a better word) that is recognized by physical characteristics alone could have some benefits.  Perhaps people will have more patience or understanding upon recognizing her difference.  Maybe they will postpone judging.

But some will definitely judge faster based on what they see.  Because the familiar characteristics of Down syndrome are definitely visible; like a brand, in a way.  With that brand comes a lot of expectations, most of them low.

What you can't see in someone's facial features, though, are their talents, their gifts or the way they can shatter expectations.  Expectations are rising all the time and people with DS are rising to meet them wherever you look.

From where I stand now, which is admittedly pretty early on in my intimate consideration of disability, the best way to gradually start to diminish the judgments has to be exposure.  It starts in our communities, in our baby groups, and story times and baby signing classes.  And it's critical in our schools.

As incredible as we know inclusion is for our children with disabilities, it's also so important for all the other children.  Important for those small children to sit side-by-side with their peers with Down syndrome and autism and other differently-abled individuals.  Important for them to have the opportunities to know people like Cora and to start to remove that insipid fear of the unknown.

I wish I would have had the chance to grow up in a community and in schools like that.  I wish that it didn't take Cora's birth to make me realize that awareness, acceptance and support is so critical to all of us.  But I am here now.  And now I can do my little part to make sure that Cora is seen, that she is heard, that she is a part of her community.

I can't remove judgment from people's minds and hearts.  I can't erase the fact that her diagnosis is written on her face.  But I can continue to advocate for her, to give her the best opportunities I can and to help ensure that she is included; for the good of her and for the good of our society.

Dealing with Medical Worries- 31 for 21

Some of my first concerns after Cora was born were the myriad of common medical conditions for people with Down syndrome.  I read about all the things that are common in the Ds population: heart problems, gastrointestinal problems, orthopedic problems, upper respiratory infections, hearing loss, sleep apnea, thyroid problems, eye problems, leukemia, and skin conditions.  There are others too, and all together the list can be so daunting.  I mean, what isn't on the list?  And of course, the heart seems like the biggest scariest one of all.

When Cora was born at home and my midwife told me that she likely had Down syndrome, she also told me that her heart sounded good.  Of course, she told me that sometimes you can't hear problems right away and that Cora would need to be evaluated.  I was so relieved then.  She was born on a Thursday and we planned to get her in for a full examination and referral to specialists on the following Monday.

But then Friday morning brought us a baby who began to repeatedly turn blue.  An ER run quickly morphed into a NICU stay, where a pediatric cardiologist came in the late afternoon (thank goodness we didn't have to wait until Monday morning!) and told us about her heart defect.  After explaining what it entailed for a moment I thought I heard him say that it wasn't repairable.  But thankfully I was wrong.  Yes, the first three months of Cora's life were pure torture.  We waited for her already present heart failure to get worse and watched her deteriorate before our eyes until her heart surgery was done.  I had never experienced fear like that.

But you know what?  Three months into our life with Cora her heart was fixed.  She began a smooth recovery and her development finally started to take off.   

And that fear was lifted away like magic.

I've heard a lot of parents rattle off their new little one with Down syndrome's medical stats, often exclaiming at the end, "But at least he doesn't have a heart defect."  I can totally understand that feeling.

But for us, Cora having a heart defect was certainly not the worst thing that could happen.  Yes it made our lives pretty miserable for a few months.  But that part of her life is quickly shrinking into our past, and it encompasses such a short part of her history already.  And it definitely worked to make us stronger parents and to put it all into perspective. The fear of losing her forced my love for her front and center right away.  I didn't have time to slowly adjust to being a parent or to her diagnosis, or to gradually bond with her.  I felt like I had to fight for her all at once.  The mommy in me was born on January 13, 2011 and I came out figuratively kicking and screaming in a way my little baby with heart failure wasn't able to do.  Thank goodness we were able to do that for her.

So, I guess... all that rambling is to say that Cora's heart defect and her surgery, that big nightmare of the bad things that can happen, turned out perfectly alright for us. 

In fact, most of the heart defects in children with Down syndrome are very treatable now.  Some require surgery and some do not.  Most of the little ones that I know in person or follow in our  blogging world have had wonderful recoveries.  Of course, there are always a few that end up as true worst case scenarios, but those are few and far between.  Yes, the fear is there for a reason, but the chances are very very strong that your baby with Down syndrome's heart defect will not ruin their life.

Cora has had a handful of other medical concerns that may seem less daunting than an enormous heart defect.  Of course, when it's your baby and your life any medical issue seems daunting. But no babies have all of the conditions on that list of possibilities.

So far, in addition to open heart surgery, Cora has had a tonsillectomy and adenoidectomy to treat apnea and considerable airway blockage. She had complications and respiratory distress after that surgery, but it was ultimately successful and now her apnea is mild and doesn't require treatment.  She has mild nystagmus that is improving as she gets older and doesn't require treatment at this time.  She definitely has low tone and is pretty weak in developing gross motor skills.  She's actually getting fit for foot and ankle braces this week.  She has had excema, constipation and a sensitive system.  Her feeding is a little bit behind, complicated by a severe issue with food intolerance called FPIES (which is completely unrelated to Down syndrome) and delayed dentition, and a serious case of being majorly stubborn.

And there are a lot of things on that long list of possible conditions that she does not have.

Of course, she is monitored regularly.  She has a pediatrician, a cardiologist, an audiologist, an opthalmologist, an ENT, a sleep neurologist, a gasteroenterologist, a geneticist, a couple of chiropractors, a naturopath, and a slew of therapists from speech, to occupational and physical therapists.  She doesn't see them all on a regular schedule, though.  But even when she's healthy there are always check-ups.  It definitely takes a good team and a great pediatrician to manage all her care.

But all in all, it is manageable.  She is a healthy little girl who has seldom been sick.  We manage her appointments the best way we can.  Sometimes it seems difficult, but at other times it doesn't feel like a very prominent part of our lives.  I imagine that it is a more challenging experience than some parents probably expect to deal with, but there really is no way to know whether a child will end up with medical problems.  Even the best prenatal tests can't tell you everything your child will have to deal with.

After a prenatal test diagnoses Down syndrome, I am told that many doctors focus on all the possible medical conditions that can result.  And these possibilities can play an enormous role in the choice that an expectant parent makes about whether to continue the pregnancy.

But these tests can't tell you everything.  They can't tell you how hard you will fight for the life of your child.  They can't tell you how you will feel if you feel that your baby's life is in danger and how very precious that life will become to you.  They can't show you all the joys you will experience or the ways your child will change your life for the better, even if there are medical obstacles to face.

The list is really just a list of fears.  Each child's story will be different.  But each story has the chance to be a good, worthwhile and valued story, even if there are a few obstacles in the way.

Celebrate! 31 for 21

"Celebrate" was the theme last weekend.  After two long months without seeing my family, they came into town to walk with Team Cora Bean in the Buddy Walk.

Cora was a little shy at times, but seemed to know that the mood was festive, and she proved it by repeatedly showing off her brand new sign:   

"Celebrate!"  

There's no denying that she is ready to party when she makes this sign!

Cora with Grammie around the fire Saturday night, showing off her favorite new sign:  "Celebrate!"

So we followed Cora's lead and kept the party going as we celebrated all that her arrival into our lives has given us.

When Cora was first diagnosed with Down syndrome I had no way of knowing just how much we would soon have to celebrate.  Although at first it seemed like something to grieve, Down syndrome has undoubtedly brought something important into our lives.  Cora herself is our favorite part.  But with Cora has come new awareness, enlightening perspective, and immeasurable beauty.

It is because of Cora that we have come to know and love so many families who celebrate an individual with Down syndrome, so happy to be let in on the secret that Down syndrome is indeed a beautiful part of life.

"Celebrate!"

So this weekend we celebrated.  Today I celebrate.  This month I celebrate all of the individuals with Down syndrome and their loved ones, and encourage you all to do the same.

Partying with Daddy.  This is what celebrating is all about!

Hamming it up for Grampie.  Grampie, Cora and a bag of silly hats:  priceless!

A Good Cry: Summer Disability Series Blog Hop!

As the final post for the  Summer Disability Series Blog Hop, this week's assignment is to re-post a favorite post from the past. 

I had a hard time deciding on this.  Some of my favorites really just describe Cora's antics and the small details of our lives.  But I wanted to choose something a little more heartfelt.  Reading through my posts over the last year and a half, I chose one from November, when Cora was 10 months old.  

It may seem a little depressing at first glance, but what I like is that it discusses a resurfacing of my initial raw grief and sadness over Cora's diagnosis while allowing me to realize that acknowledging that sadness doesn't negate my pride, joy and acceptance of Cora.  It was my small way of learning to come to terms with emotions I had largely suppressed and allowing me to start getting over my own guilt.

A Good Cry

A few days ago, driving in my car, switching radio stations to find songs that suit my mood, I heard a woman on the radio give her story of the day.  I'd heard her stories a few times before.  Always a little sappy, a little sweet, a little heartwarming.  Sometimes you'd roll your eyes just a little.

She started telling a story of a little boy at a pet store looking at puppies.  When the boy saw a puppy with a limp, he told the shopkeeper he wanted to buy that puppy.  The shopkeeper tried to talk the boy out of it, and when the boy insisted, he then tried to give the puppy away free.  But the boy wouldn't hear of it and insisted on paying full price.  The man went on to tell the boy that the puppy would never learn to run and jump and play.  Then the boy revealed the brace on his own leg.  He told the man that he didn't run so well himself, and that the puppy would need someone to keep him company and love him as he is.  The woman on the radio went on to talk about recognizing value in people, things and animals that may not seem, at first glance, to be perfect.  (Her version was scripted much better than my own.)

And even though I wanted to roll my eyes, I found myself crying.

...crying because I so want my daughter to be recognized as valuable.  And I know that it may be an uphill struggle.  I know that many people wouldn't have chosen a child not viewed as perfect, and that ultimately, with modern prenatal testing, more and more people will be getting the opportunity to make that choice.  And they'll likely be making that choice based on fear, without the benefit of witnessing the beauty, joy, love and value that can exist in that child.  At that moment, alone in my car, the thought was so raw and so painful.

I turned off the radio and cried.

And then strangely, my emotions shifted, and out of nowhere I was struck with a glimmer of my initial grief:  the grief that tore through me when Cora was born, but that I didn't allow to stay.  Shocked, but unable to hold it back, I let myself cry, all the while feeling like I was somehow betraying my girl.  Through my tears I questioned how I could be feeling grief over something I love so deeply.  If I feel sadness, how can I expect others not to fear what I have, or not to have pity, let alone to recognize what a gift my daughter is?  How could I reconcile this startling sadness with the overwhelming love I have for this child that I would walk through fire to choose again and again?

A few moments later a sense of peace came over me and I was struck with gratitude.  Gratitude of course, for my beautiful girl and for the pure joy that she brings to my life.  Grateful also that I was smart enough and humble enough to recognize something good when I delivered her on my living room floor.

But grateful too, for that small moment of sadness that I shared with myself alone at a stop light: for allowing my defenses to bend for an instant, to let in my own worries and fear and sadness, still recognizing that it doesn't negate my love.  It doesn't counteract my fierce desire to protect Cora or to share her beauty with the world.  It is just a small part of me now.  Maybe a part that I didn't know was still lingering.  But it's a part I can accept for a little while at least, knowing that it'll get smaller every day, as it's eclipsed by my daughter's smile.

The Influence of Disability- Blog Hop!

The blog prompt for the Summer Disability Series Blog Hop this time around is about the influence of disability in your world.  To the point:  How have earlier interactions with people with Ds influenced how I felt about Cora’s diagnosis?

As I have admitted in previous posts, I don’t remember any children with Ds growing up.  I really don’t know if that’s because there were separate schools or classrooms, or whether there were no people with Ds in my community.  I know that people of my generation with Ds weren’t usually “mainstreamed.” I’m truly not sure whether my lack of awareness was simply me being narrow-sighted or whether I simply lived in communities where individuals with Down syndrome were not seen and heard.  As an adult, I must admit that I just didn’t look or didn’t notice. 

But even so, I definitely had some ideas about what Ds was.  I could say that I knew that it resulted from an extra chromosome, and I could recognize the physical features of Ds in a person.  I thought of Down syndrome as a fairly severe disability.

Yet in truth, most of my experience with Ds probably came from television.  I was so into “Life Goes On” when it aired.  I was attached to Corky and his family and felt like I could identify with them, even though it was something distant.  But as accepting as I thought I was, a college friend who was good with a guitar once wrote a song that I remember laughing to.  “My name is Corky. And I’m dorky. And I eat my spaghetti with a forky.” Probably benign, but it makes my stomach twist to think that I once thought this was funny, just because a character had Down syndrome.  I remember seeing episodes of Law and Order-type shows depicting adults with Down syndrome.  The plots usually revolved around people with Ds wanting to live independent lives, and their struggles to do so, usually with the rest of the world certain that independence was impossible. 

I think that overall, my lack of exposure—that gap in my understanding, really made my introduction difficult.  I really had very little frame of reference.  Discovering that Cora has Down syndrome was one of the most shocking and painful moments of my life.  I really felt like all the dreams I had conceived over the years went out the window.  My biggest fear was that she wouldn’t be smart.  Oh yes, the pre-Cora me was big on smarts, and not as accepting as I had always thought I was.   Of course I would have the most intelligent and precocious child, capable of graduating college at age 2. 

And of course, I tried to wrap my brain around all the usual worries: how severely disabled I imagined she would be; that I would never be able to work again; that she would live with us for the rest of our lives, completely dependent.  I assumed that her potential would be so limited.  I thought that I had created a defective person.  I felt ashamed and embarrassed that my baby was different.  And now, in retrospect, I wonder why I felt this way.  I feel shame and embarrassment that I ever felt this way at all.

My re-education began as I fell in love with her.  An information seeker, I began to read.  Thankfully, the things I read and heard started to show me how much potential she may have.  I began to focus on the things that she would likely be able to do.  I spent her early months envisioning all the ways she would excel and achieve, sure that she would be the one to achieve milestones close to a typical timeframe and wow the world with her accomplishments.

At this point my expectations have again shifted.  Yes, I am proud of her accomplishments so far and I am quite sure I will continue to be.  But I don’t see how it could be any other way.  Regardless of her strengths and abilities, she is perfectly Cora and she is perfect to me.  Even if she doesn’t achieve every goal I may have for her, “on time” or even at all, I am constantly amazed, impressed and happy with her.  And even though there are people who look at us with pity, I am always encouraged by the many people who are so impressed with her, as well.  (See, it’s not just a mother’s unconditional love—she really is amazing!)

My perception of what is great and valuable is indeed evolving.  What constitutes great for Cora in my eyes has shifted.   

What I see as great and valuable out in the world has shifted.  My community has shifted and contains a group of people that I never expected, but that I certainly wouldn’t trade for anything.  And for that I am very grateful.  I've also been happy to meet such a great online group of people who have been giving me so much more insight into disability and our culture's perception of disability, people who are helping me to refine my own value systems.

It was an unfortunate realization to learn just how ignorant and blind I had been to people with disabilities.  But that is the great thing about living and learning… learning. My eyes are open to so much more, and for that I am far from unfortunate.

My Faith and Disability

This is a recycled post from October 2011 about Faith and Disability.  To check out the other posts or join the Summer Disability Blog Hop hosted by Meriah, scroll down.

Look how itty-bitty little 9 month old Cora was!

At the time of Cora’s birth I honestly wasn’t very focused on any aspect of faith. Caught up in the long-anticipated arrival of a child into my life, I was pretty single-minded.  In my heart I knew Cora already, knew that she was meant to be with me, but she was still a mystery.  And I certainly didn’t have a clue what her arrival would come to mean to me.

Then, when she was born, the initial shock, pain and anguish was blinding.  For a short while at least.  Not to say that I haven’t struggled with her diagnosis or experienced pain since then.  I absolutely have.  But with our mad rush to the hospital with a blue baby, and the news of her serious heart defect, everything was suddenly so precious, so poignant and so seemingly precarious.  How could I be suddenly faced with the risk of losing this baby I had wanted for so long?   

And in all honesty, the reason I was able to accept her diagnosis early on was that I began very powerfully to feel that she was given to me for a reason, regardless of whether I understood that reason.  Perhaps that is a simple sentiment, clichéd, even, but for me it began to resonate powerfully.

In the midst of feeling slighted and punished and wailing “Why me?!” into the universe I came to some of my own answers.  I know that many parents of children with disabilities are irritated by society’s opinion that they must be special themselves.  Must be stronger than the next person.  Must be more humble and patient than the next person.  Because it really isn’t true.   We’re not heroes.  We really are no more special than anyone else.   

But I do believe that I am specially and uniquely suited to be Cora’s mother.  I believe that this was a position carefully chosen for me.  Chosen by God, of course.  Chosen by the soul of my daughter and chosen by my own soul.  And this knowledge was secure in my heart, even when I was grieving what I thought I had lost.  Quite simply, this is my faith.

The powerful love and acceptance and sense of community we’ve shared since Cora’s birth has also strengthened my faith.  I truly believe that the far reaching love, thoughts and prayers that were sent to us in her early hospital days and during her surgery are largely responsible for the wonderful outcomes.   Despite all my worries and fears, I will never forget the peace I felt when we finally handed Cora off for her heart surgery, the calm knowing that she was in perfect hands.  That moment was probably one of the closest I’ve come to my own perfect faith.

I'm not sure whether the fact that she has Down syndrome is relevant.  Whether I am her mother because I am somehow stronger, more special or more equipped to be is not the question.  I am her mother because she was meant to be in my life, because she was meant to change my life and my perspective, my values and my sense of self.   She was meant to change my direction, give me focus and clarity.  And I have faith in that.

Almost Famous

We got a fun surprise in the mail yesterday.  Miss Cora's pretty little face is now gracing Woodbine House's Third Edition of  Early Communication Skills for Children with Down Syndrome.

Pretty fun!  We have the earlier version on my side table and several of the other Woodbine House books on Ds in our bookshelf, as well.

Doing a quick scan through last night, I caught glimpses of some of Cora's online pals: Lily, Ellie, Vada, Ollie, and Joey.  How exciting, that Cora gets to be one of the beautiful faces in this book!

The rain is still doing its best to keep us inside, although I finally have enough energy after this epic sickness to do exciting things like empty the dishwasher, clean the bathroom and do grocery shopping.  But I am hoping that summer will join us soon.  We have some fun things planned, starting later this week and continuing on through the rest of the summer.  So be sure to gear up for a season of Cora-filled fun!

Cora is demonstrating her reading skills. She loves to follow the text with her finger.