Days of Awe (New Down Syndrome Diagnosis)

If someone would have told me that the days and weeks following Bridget's unexpected Down syndrome diagnosis would be bountiful...I would have thought they were crazy. 

Earlier this year, I caught a link on facebook to this blog (a friend just reminded me of it yesterday), which got me thinking about how we were in that same position five-and-a-half years ago.

I so wish we could have had even a tiny glimpse into our lives today. There was no reason to fear the future. But we didn't know that yet.

The news that our brand new baby needed surgery--and had a genetic condition that would impact her life in untold ways--was tough news to bear.

We wanted to celebrate, but we felt sad. We didn't want life to be hard for her, or for us. She was a brand new person. She was just beginning, and yet somehow it seemed that she was already behind the eight ball.  

I wish I had a picture of Bridget lying under the warming lamp recovering from her surgery. It would be even better if that picture included all three of us--Chris and I on either side of her little bed, facing Bridget and one another at the same time.  

We didn't need words to explain what was happening. The tears that fell in those moments were quiet tears of relief, of gratitude, of hope. We’d both had an epiphany and the fear began to dissolve.

We could do this. We could raise a child with Down syndrome.


For anyone just beginning this journey, please feel free to ask questions here or to visit one of the many wonderful resources for parents with a new diagnosis. Here are a few great places to start:

>Down Syndrome Pregnancy
>Real Life Down syndrome (Resources page) (List of Blogging Families)
>Down Syndrome New Mama
>What Parents Wish They'd Known

Shining a Light on Prenatal Screening: Implications of the New Tests

This is a piece I wrote for a series of posts on the new prenatal test to detect Down syndrome early in pregnancy.  Please take some time to check out the entire series over at A Perfect Lily.  And please join the conversation.  It's too important for any of us to sit this one out...


People with Down syndrome—and their families—are overwhelmingly happy with their lives, as recent studies published in the American Journal of Medical Genetics show. And yet, advocates for Down syndrome (including self-advocates) have been working overtime to get the message out about what it actually means to live with the diagnosis, for good reason: they’ve found themselves in the unusual position of having to defend and explain why people with Down syndrome deserve to live as much as anyone else.

People with Down syndrome have their own gifts, talents, hopes and dreams, just like the rest of us. They can and do make significant contributions to their families, their communities and to the world at large. They have value and worth (and self-worth). There is a chorus of voices, of parents and siblings of people with Down syndrome, and of people with Down syndrome themselves, expressing a loud and powerful message: A life with Down syndrome is a life worth living.

The emergence of new prenatal tests to detect Down syndrome early in a pregnancy means that even more women will be sitting in a doctor’s office receiving a Down syndrome diagnosis wondering how to process the news and how to proceed. The reality is that outdated images and negative stereotypes of Down syndrome do exist in a large segment of society, in the media and even within the medical community. And though there is plenty of information readily available for parents with a prenatal diagnosis (websites, pamphlets, blogs, advocacy groups, and support groups ready to provide information and guidance), many expectant parents receiving a diagnosis of Down syndrome are still not given balanced information or appropriate counsel regarding Down syndrome or their options. On too many occasions, women are still guided or encouraged to terminate.

While safer genetic screenings theoretically benefit both mother and child, the existence of these tests themselves (20 years and millions of dollars in the making) suggests they are beneficial because Down syndrome is a “problem”—an unintended and unwanted consequence best found while there is ample time to reconsider the pregnancy. Often referred to as a “seek and destroy mission,” there is still upside to early diagnosis beyond facilitating termination: it can provide parents a longer window to seek information on Down syndrome, to link up with support groups, and to process the diagnosis. Parents are free to make either choice—to continue or end the pregnancy—though the prevailing mentality often supports the latter.

*** 

We have mapped the human genome, and have uncovered exciting possibilities for improving the health and quality of life for people with all sorts of illnesses and diagnoses.

We have also begun to use the same science and related technologies to detect and eliminate humans with specific conditions. Prenatal testing itself has existed for some time. But today, our federal government has passed legislation (full document here) that all pregnant women be offered (at no cost to them) a new, safer genetic screening which detects Down syndrome in the first trimester of pregnancy.

With a prenatal diagnosis of Down syndrome, or any other condition, there is no way to predict a particular child’s potential or long-term prognosis, and the way a Down syndrome diagnosis is delivered is quite often literally a matter of life or death. Despite the increase and widespread nature of the testing, there isn’t an equal increase in the amount of information available to parents about the diagnosis, and there are no universal standards for the type of information parents receive, or for the way a diagnosis is presented.

*** 

Some things to consider:

- Even “perfect” scores in prenatal testing cannot guarantee a person’s ability, health, happiness, achievement later in life. In having children, there are no guarantees.

-Ability is a continuum. We all fall somewhere on the spectrum, and are more or less “able” in the various areas of lives. Disability is part of the human condition. Fear or discomfort with disability is natural, too, but is often overcome with information and experience.

-Most parents, even those whose children do not have a specific diagnosis, say that being a parent is one of the hardest jobs out there. Yet, most parents would also say that the time, energy and money it takes to raise their children is entirely worth it. Parents of children with Down syndrome are no different. It doesn’t take a saint or a hero to love someone with Down syndrome. The loving part comes as naturally as loving anyone else.

-Economic (cost-benefit) arguments which rationalize people with Down syndrome (and other “genetic defects”) out of existence may make logical sense, but are morally bankrupt. We are not talking about things, we’re talking about people.

-“Human” cannot be taken out of the human condition. We are not robots, or genetically engineered creatures devoid of morality and at the same time guaranteed to achieve and to be free of health issues or “problems” ourselves. Being “human” means that there are complexities of condition and of mind that set us apart from animals and machines. Unlike robots, we do not fully function without compassion, empathy, values, or morals. Our conscience—and our awareness of our own imperfections--is an essential part of what it means to be human.

*** 

If it seems like this is a heavy discussion, it should. The current prenatal screening debate carries within it some of the deepest issues facing mankind. What makes life valuable? What makes a person worthy of life and love? What things in this world can we—and should we—try to control? What is too imperfect, too expensive, too much of a burden or just too undesirable?

Yet we’re seeing a common theme in today’s thrust for universal prenatal screenings: there are those among us who are too expensive, or too burdensome to live. Today, we're talking about people with Down syndrome—people with unique challenges who can, and do, live happy and vibrant lives. This line of thinking could apply to any one of us at some point in our lives. Every single one of us needs extra help at times or will need extra help—possibly a significant amount of extra help—at some point in life.

The debate over the newest forms of prenatal screening has elicited arguments from all of the angles we would expect, as each individual is coming at this from his or her own set of values and considerations. But at its core, this debate isn’t about politics or religion. It isn’t even about being “pro-life” or “pro-choice”—terms which have embedded political and religious connotations and labels that are not mutually exclusive. A person can hold a belief that the government shouldn’t be able to tell us what to do with our bodies and at the same time can still value all life. No one can know another person’s whole story, or the circumstances surrounding a pregnancy.

This is about making sure expectant parents get all the support and information they need to make informed, educated, thoughtful choices. It’s about having our eyes wide open and understanding that we’re at a critical point in the history of civilized societies. We now have the capability to “know” all sorts of information about a person before birth. What we do with the technology we’ve developed and how we use that information is our choice to make.

*** 

It is imperative that we stop and think before accepting these tests at face value, before running headlong into this new era of “earlier, safer” prenatal testing. This is a discussion that needs to be taking place everywhere—in schools, churches, coffee shops, at kitchen tables, online and face-to-face. Each of us needs to be asking: What do these tests mean for us and what are the implications? 

At the very least, an increase in solid, balanced information on what life can be like with a diagnosis of Down syndrome (or other detected conditions) must accompany the increase in testing.

This issue is too important for any of us to sit on the sidelines. Get involved in helping others to understand what these tests do, and what they mean. Take the time to educate yourself on all aspects of this debate, and to discuss with family and friends.

Here are some questions to encourage and inspire further discussion:

· What makes life valuable?

· In what ways are you more and less “able”?

· Which potential hardships trump the value of a life (realizing that we’d be speculating about the impact of those potential hardships)?

· Chromosomal abnormalities (not all of which are incompatible with life) are the current focus. Which condition is next? Do you or a loved one have—or are you predisposed to—diabetes, breast cancer, alcoholism, mental illness, autism, learning disabilities, or any other condition or diagnosis others may feel is “expensive” or a burden to them? How would you feel if a prenatal test was developed to detect any of these conditions for selective termination?

· The technology is here and will continue to advance. Where do we draw the line? For example, what happens when prenatal testing is applied to particular preferences (such as eye color or sex of the baby)? If we can engineer humans for intellect, beauty, athletic prowess or career success, should we?

· Should the doctors who recommend prenatal tests be required to provide accurate and balanced information about any condition detected through the testing?

Which questions do you think are most important for understanding the critical issues in moving forward? Please join the conversation.

Don't spend your precious time asking "Why isn't the world a better place?" It will only be time wasted. The question to ask is "How can I make it better?" To that there is an answer.

— Leo Buscaglia

Pretty in Pink & Pure Love

Today marks the beginning of a month we traditionally associate with love and the heart. 

It is a time to exchange sweet and meaningful messages, to spread goodness and to give unselfishly.

I'll be sharing in the upcoming weeks about a variety of things I love, things I am both grateful for, and passionate about.

See below for one of the things at the top of my list:  small moments of daily life over here.

Yes, some days are long and tiring.  But everywhere I look, there are reminders of grace.  

I'm so thankful for these little vignettes, expressions and happy sounds that quickly pull me back toward my center, my passion, my life's work:  my family.

A little girl has been playing here, I am sure of it

Peek-a-boo!

Big Sister Bridget is making sure Alina sits still for the picture :)

Love must be as much a light, as it is a flame.  

~Henry David Thoreau

My love for my children--and in particular, for my two little girls with Down syndrome--is the fuel for a light I can share with others.  I'll share my heart and my hopes for them, readily. And, I'll advocate for others with Down syndrome with as much passion and energy, because I know that, unfortunately, it is necessary.  I will hold my light high, and will hold my beautiful daughters up for others to see their worth, and our love.  

It is a pure love. 

"Pure Love motivates us to go beyond sympathy into compassion and then moves us to action"--that's what I read this morning on Patti's blog, A Perfect Lily.  Patti is my blogging friend who also has a beautiful daughter with Ds, Lily :).  

Peter (16)

Patti has been actively advocating for Olga and Kareen (from Reece's Rainbow--Kareen has a committed family now, and there is an announcement expected about a family for Olga as well).  She has been so successful in raising money and awareness for them, that she is now seeking a full grant (she hopes to raise $20,000) and family for Peter. 

Peter is a sweet boy who has been listed on Reece's Rainbow his entire life, and not a soul has inquired about him.  He has most likely been in a crib his whole life as well, and he desperately needs a family willing to give him a chance.  

Please consider opening your heart to Olga and Kareen (and the families who will be working so hard to get to them), and to Peter.  Go to the Pure Love Giveaway to learn how you can help (and be entered to win some amazing prizes, including an iPad and a Nikon D90 Digital Camera with an 18-105 VR Lens!)...


One last plea:  Time is running out (as in, almost out) for sweet, little Masha, who is living in a very poor Eastern European region. Several RR families have been to her orphanage for other children, and everyone who has met this child has fallen in love with her. Unfortunately, they are all already in the midst of their own adoptions.  There is even a family at Masha's orphanage right now (to get their two new daughters), and they were actually playing with Masha when a doctor came in to do her pre-transfer physical...pre-transfer to a mental institution. She will not make it there.  Masha has over $5,000 already in her adoption grant fund.  If you could love Masha, and be her Mama or Papa, please contact Andrea at Reece's Rainbow TODAY.

Nine Months

Alina has been home for nine months, today.

In the span of a typical pregnancy, this little girl has worked her way into our hearts and lives like she has always been here.  

Alina asleep in big brother Kyle's arms

Now that we know Alina, it is extremely hard to think about the years she spent without a family of her own, and even harder to think about her fate had we not come for her.  

Alina will be four in a few months.  Her paperwork would most likely already have been in place for her imminent transfer from the baby home to a remote, regional mental institution, where the care is poor at best.  

I can't put into words how it feels to know that she was so close to having to experience transfer and life in an institution.

She is a child--a beautiful, sweet, funny, curious and sensitive child--who is very aware of the world around her.   

She has so much to offer, and we are so very grateful to have her in our lives.  

From Our Home to Yours

~Wishing you Love and Light this holiday season 

and throughout the year~

The Peele Family

Moments Like These

...more than make up for the moments of chaos around here ;).  

Waiting for the bus

New dress-up outfits from Nana

Chef Bridget

Chef Alina

We are busy with holiday preparations and activities, celebrating the season and helping others in need.  We are giving thanks for all of our blessings each and every day.

This is a magical time of the year.  It is also a season of miracles.

Do you remember beautiful Elizabeth? 

 

She is getting a family for Christmas--she is being rescued!!

Amazing things have also been happening over at A Perfect Lily! Thank you so much to everyone who has donated, advocated or prayed for sweet Olga.  Patti has already raised over $12,000 from the iPod giveaway for Olga's adoption fund!  This is a HUGE amount, and should be an enormous incentive for a family to come forward for her.  I know it will happen, I just hope it is soon!

Patti has been so successful in raising money and awareness for Olga, that Andrea at Reece's Rainbow has asked her to advocate for a second child, beautiful little Kareen (who is also nearing imminent transfer to an institution).  You might have guessed what this means...it means that TWO children are going to be saved, and there is a new giveaway to make that happen sooner than later! 

Please go here to learn more about how you can have the chance to win a brand new iPad, AND be part of a Christmas miracle for Olga and Kareen :)!  

There are many, many other children who are in desperate need of families.  If your heart is leading you to it, please visit Reece's Rainbow and do whatever you can to help.

A New Life

Tonight, as we were sitting in our family room watching The Sing Off, Alina was all cuddled up next to me on the couch. She had two baby dolls and Minnie Mouse tucked in under the blanket with us.  I had leaned over to Chris and whispered for him to look at her--at how incredibly cute and content she is just hanging out with the family--when she looked up at me, smiled, and pursed her lips for a kiss.  Melt my heart. 

This past spring, right before we were getting ready to travel and meet Alina, we received an updated picture of her.  I had been so excited to get a new picture, and was really hoping to see her smiling (or with another expression that would give us a hint about her personality), and to see her with hair.  My heart sunk when I opened the attachment and found this:

March 2010

Oh goodness...there was the same blank expression, and she looked so lost and sad. I knew she needed us, and I felt an even stronger pull than ever to get to her, but at the same time I had the first doubts I had felt during the adoption process up until that point. I began to wonder how much work we had ahead of us, and whether Alina was "reachable". 

When we got to the orphanage, we saw Alina being photographed for her final file picture. The photographer came into the hallway to Alina's room just after lunch and before afternoon nap time. She stood Alina in front of the main door and quickly snapped a picture. Alina was stunned and I think a little bit scared. We guessed that she was not photographed very often at the orphanage, and immediately understood why the above picture (and her initial RR profile picture) looked the way they did, when she is so full of life.

Who would have guessed from those pictures that Alina is vibrant? She has expressions and personality to spare. She's our Funny Bunny, our very own Whirling Dervish, our Sweet, Sweet Lina.

August 2010

I've just finished Part II of my interview about our adoption of Alina with Patti on A Perfect Lily.  Check it out if you are interested in an overview of some specific issues potential adoptive parents may want to consider.

The more important reason to head over to Patti's blog is to be a part of a Christmas miracle for Olga, a beautiful child who is in dire need of a family as she is close to transfer.  Patti is holding a drawing for an iPod Touch with the hopes of raising enough money to inspire Olga's forever family to come forward for her ASAP.  Please help give Olga a chance.  Even a small donation will make a difference!  See Patti's blog for details!

Every Day...

I think about the orphans. How couldn't I? I've got one (less) orphan in my home. And I feel like I should do more.

My heart is aching...because I know.  

I know because I have two children now with Down syndrome.  I know because I was there.  And I know because of what others have shared:

- The Sad Reality, about life in an Eastern European mental institution, and The Sad Reality, Part II, the follow-up post.

- And this post about a little girl--a beautiful, creative and intelligent little girl with Down syndrome who has already been transferred to an institution where she will likely die if someone doesn't come forward for her soon.

Before December of last year, I knew that most people in the United States who find out they are carrying a baby with Down syndrome will choose to terminate the pregnancy. I also knew that, here in the States, children born with Down syndrome are often stowaways, their secret undetected until arrival. 

But unsuspecting parents, after going through a period of grieving the diagnosis, most often come to adore their children with Down syndrome and find peace and joy in their life together. (There are a small percentage of parents who are aware of their child's diagnosis before birth, and who knowingly choose to give that child a chance. They, too, most often have incredibly positive feelings about their child).

Parents and family members of people with Down syndrome are their biggest fans and advocates. We tend to wish that everyone knew the joy of knowing and loving a person with Down syndrome, and that others could see life with kind and open eyes.

What I didn't know until last December is that there are children all over Eastern Europe (and in many other parts of the world) who have been abandoned simply because they have Down syndrome or another specific diagnosis.

These children are the survivors, who have been born, despite a general notion that they are worth less. Through no fault of their own, they are often seen as the unwanted. 

A year ago, I clicked a link to the Reece's Rainbow Angel Tree from another Down syndrome blog, and was instantly forever changed. 

I sat silently, with tears streaming down my face. 

All of these children with Down syndrome and other specific needs...they have been devalued, underestimated and left alone. I had no idea. I had no idea that there were so many. All of these children...who is going to go get them? 

We were able to save one child.  Just one.  But she is a treasure.  And one less orphan is still one less orphan.  It is a step in the right direction.  

We are not Saints. We are just a regular family who fell in love with our fifth child (just as we did with the rest of our children), a little girl who happened to have an extra chromosome.  Bridget opened our eyes to the worth and beauty in all people. 

Reece's Rainbow opened our eyes to the many, many children who share Bridget's diagnosis and who have been abandoned because of it. They are fortunate to have a voice through this organization. 

But they need help, and lots of it, to escape from their chains. 

I know it is to hard to think about all of the kids in need, but we can't look away. 

No child should have to live life in an orphanage or a mental institution. No child should be without the love of a family.

Realistically, not everyone will be able to adopt. But I hope more people will begin to think “Why not us?” instead of “Not us”. Or at the very least, “My eyes have been opened. Now what can I do to help"?


**If you are interested in learning more, I was recently interviewed by Patti, at A Perfect Lily, about Reece's Rainbow and Alina's adoption.  Find that here. 

Something on the Road, Changed My World

Sara Groves ~ I Saw What I Saw

I saw what I saw and I can't forget it

I heard what I heard and I can't go back

I know what I know and I can't deny it

Something on the road, cut me to the soul

Your pain has changed me

your dream inspires

your face a memory

your hope a fire

your courage asks me what I'm afraid of

(what I am made of)

and what I know of love

we've done what we've done and we can't erase it

we are what we are and it's more than enough

we have what we have but it's no substitution

Something on the road, touched my very soul

I say what I say with no hesitation

I have what I have and I'm giving it up

I do what I do with deep conviction

Something on the road, changed my world

November is National Adoption Month.  There is great need here in the U.S. and all over the world.  Take some time to learn about the Orphan Crisis--143 million children without homes.  Be changed.  Even if you are not in a position to adopt, everyone can do something.  How will you help?

Living in the Light, Explained

When we merged Bridget's Light and Loving Alina, there was little question whether our new blog title would include the word light.  Our whole story revolves around it.

We couldn't have predicted how Bridget's arrival would change us, would enrich us.  Or how Bridget's light would lead us to Alina--and how Alina herself would further enrich us.  But it did, and they did.  Bridget and Alina have brought a special warmth and clarity to our family that we didn't know we were missing.  

With open eyes and open hearts, we now live a new truth.  We are keenly aware that all people are the same within.  Though none of us is "perfect", we are all perfectly made. 

We all have challenges...and gifts.  And each one of us adds to the whole.  Our youngest girls add in so many ways.  Above all, they've multiplied the goodness in our lives...in spades.

We've gained perspective--we see Life through a new lens.  We waste little time worrying about the superficial, and our home is filled with laughter and warmth.  Our two littlest girls are a huge part of that--they shine.

Things aren't always easy, or sparkly, at our house.  We're not exceptionally virtuous, though we try our best to live right and to be grateful for each day.  We're living an ordinary life, but we're aware, joyful and appreciative.  

We are Living in the Light.

 

These two little girls have blessed us beyond belief.  They're vibrant, beautiful people who are so very loved and enjoyed.

Please join us as our family story continues to unfold.  Day or night, you are welcome to come visit here.  Come laugh with us and learn with us, and be empowered.

There's a whole lot of darkness out there.  Let the light in...

Love, Lisa

*Alina was named by her birth parents...her name means light.

New Baby Diagnosed with Down Syndrome--What Do I Say (Part II)?

Down Syndrome Diagnosis 101, What to Say to Others

Does your new baby have Down syndrome?  Have you wondered how to tell others about it? 

As parents, it is tough enough to navigate our own feelings when our child is diagnosed with Down syndrome, let alone manage other people's reactions. We've all wrestled with how and when we should reveal our child's diagnosis to others.  

We chose to adopt Alina, and everyone knew that she had Down syndrome.  But Bridget's diagnosis was a surprise.  Our first challenge was making calls from the hospital, and filling in all the details of her birth.  We were shocked, and still reeling from the additional stress that Bridget needed surgery as soon as she was born.  

Our next challenge was her birth announcement.  We felt we should tell our family and close friends about Bridget's diagnosis, and spent some time thinking about what to say, but thought they definitely needed to know.  Here is what we sent:

B R I D G E T

 Celtic meaning:  Strong, Resolute, Saint

                          

Dear Family and Friends,

For those of you who do not already know the events of the last several weeks, I thought I should explain…  

My water broke early in the morning on July 23 at just over 34 weeks into my fifth pregnancy.  We anticipated a quick delivery, and hurried to the hospital, but my labor (which was slow and steady) lasted most of the day. Just before 6 p.m., Bridget was born. Our beautiful little girl was pink, crying, moving vigorously and breathing completely on her own.  

As soon as she was born, though, we recognized that Bridget had an enlarged area by her umbilical cord. We learned right away that she would need surgery to correct the omphalocele (in her case, a small section of the small intestine was outside her abdomen and had to be placed back inside), and that she would be transported to Children’s Hospital later that night. In addition to the abdominal issue, we were told that Bridget displayed other characteristics typical of a baby with Down syndrome.  

We did not know any of this before she was born. The anxiety and worry about Bridget’s surgery and overall health were really tough at first and we went through the range of thoughts and emotions while adjusting to--and accepting--our new reality. As soon as we got to spend time with Bridget, though, the clouds parted. Chris and I looked at each other and smiled. She’s one of us…and she’s a perfect addition to our family.  

Please don’t be sad for us. We are not sad or disappointed. We hope you will feel the same as we do--we’re happy and proud!  

Bridget is a sweet baby and her name suits her perfectly. She's filled with quiet determination. She is so pure, and so strong (body and spirit)--she is amazing.  

Bridget recovered quickly from her surgery and spent several weeks working on feeding (a common issue in preemies and babies with Down syndrome). She exceeded the doctor’s expectations at every turn and touched us all with her sweet disposition and her vigor at the same time. She came home after one month in the hospital to much fanfare and we are enjoying her immensely. 

She is doing everything babies do at this point (mainly eating, sleeping and pooping--sometimes all at once!). She's about 6 1/2 pounds now, and eats like a champion. She loves her siblings and seems so happy to be at home.  

We look forward to sharing Bridget with all of you as she grows.  

Love,  

 Lisa & Chris

There was relief after sending out her birth announcements.  They were well-received and people were incredibly kind and supportive.  

But it was still hard to know how to talk about Bridget's diagnosis in public.  I remember thinking, "Am I required to tell ____ that Bridget was born with Down syndrome?" (Sometimes it was a friend I hadn't seen in a while, or a stranger in the grocery store, or even an acquaintance at the dance studio or the school.)

I wasn't sure what to say, or how to say it. And then there were the many things people said to me that threw me for a loop.
 
So how do you talk to someone about your child's diagnosis for the first time?  What do you say when someone casually asks about some facet of your child having Ds?  Do you have a quick comeback when someone makes an insensitive or ignorant statement?  Or, do you have comments "in the bag" for just such an occasion?

I decided that I would tell people if I felt like it, and if it made sense. If I didn't feel like explaining, I just didn't say anything about her diagnosis. And I made a promise to myself that I would not feel badly about that. In other words, I started to cut myself some slack. 

I am a great advocate for Bridget and Alina. I love them and believe in them wholeheartedly, and will speak up when it makes sense to do so--but I don't always have to take on the world. (Some of our best advocacy work is just being out there, providing one example of a loving family living a happy and full life which includes Down syndrome.)

People make insensitive comments so often without even realizing it.  When Bridget was a baby, and I was still trying to absorb her diagnosis and figure out how to tell others about it, I started to understand that we all need to find things to say that fit our personality as well as the situation.

I used to just stand there--a little stunned--when someone made a comment that hurt (you can't always see it coming). You replay the situation in your head for days, trying to figure out what you should have said.

I now have all sorts of statements in my "bag".  I'm usually straightforward and positive, and I remind myself that each of these situations is a chance for me to advocate for my girls and for other people who have a diagnosis of Down syndrome (really, for people with a diagnosis of any type).

It is important for all of us (parents and family members) to be well versed on the basics (why Ds occurs, the range of delays associated with the diagnosis, physical features, common health issues, improvements in medical care for people with Ds, current terminology, new opportunities & advancements, etc.).  People will ask about those things. Most people will not have personal experience related to Down syndrome.  Your child might be the first person they've encountered with the diagnosis.

Here are some ideas:

If someone seems to be wondering whether she has a diagnosis, I'll just come right out with it: "Bridget has Down syndrome". In case they can't see for themselves, I always follow with: "She is awesome".

I often ask the person if they have any questions about her diagnosis. It takes some of the stigma away when we don't make excuses or apologies. (She is who she is, and she is amazing.)

When people comment about physical features or health issues ("she doesn't look like she has Down syndrome" or "she is so high-functioning...she must not have a severe case"), I say, "There is no such thing as a mild case of Down syndrome. You either have it or you don't. Some people with Down syndrome have more significant delays than others, and some have more serious health concerns. As with all people, there is a huge range in physical characteristics, health and abilities in people with Down syndrome."

A shorter version: "That is a stereotype. People with Down syndrome, like everyone else, have a range of abilities and challenges" or "Everyone has strengths and challenges. She does, too."

I also say things like: "We know much more about Down syndrome today than was known even 20 years ago. People with Ds are capable of so much more than ever thought possible. I'd never want to dictate to any of my children what someone else thinks they can't do. Only Alina can tell us how far she will go and what she will accomplish."

I will always highlight my daughter's personality, her abilities and potential, and the fact that she is a child--a person with a diagnosis--not the diagnosis itself.  

While there are some things that are unique about her because she has Down syndrome, she is just like everyone else in all the important ways.

Feel free to use any of the above information (in whole, or pieces and parts).

New Baby Diagnosed with Down Syndrome--What Do I Say?

Down Syndrome Diagnosis 101, What to Say

Do you know someone who has received a diagnosis of Down syndrome for a new baby?  Are you wondering what to say and do?

Even well-meaning friends and family members tend to stumble over words, and often don't know how to help, or how to process the diagnosis themselves.

It is important to remember that every new parent desires and deserves congratulations on the birth of a new baby.  Parents who have been told that their baby has Down syndrome should be shown the same kindness as every other new parent--along with a little extra awareness and tact. 

A diagnosis of Down syndrome may (or may not) be difficult for parents to process and absorb.  If there are any additional health concerns for the baby, the early days may be especially frightening for the parents and family.

Some parents accept the diagnosis quickly, while others really struggle.  Both are completely normal reactions when unexpected information arrives along with a new baby.  

Look to the parents for cues.  A general rule is to welcome a child with Down syndrome (or any other diagnosis) the same way you would welcome any baby.  Be sensitive, supportive and positive.   

Important things to consider:  

(1) All babies should be celebrated, and all parents should be supported in welcoming new life.  

(2) There is no telling what an individual will accomplish in his or her lifetime--especially if that person is loved and valued and given every opportunity to succeed.   

(3) There is every reason to be hopeful. 

There are several sources for information on what to say and do when your friend's baby has a diagnosis of Down syndrome.  I'm linking to one blog post, which covers the topic particularly well.  Please visit the above link for more detail, but here are the highlights:

First, bring a gift (a receiving blanket, an adorable outfit, a rattle). Second, say “Congratulations!” or “Congratulations on the birth of your baby boy/girl!” or “Oh, (s)he’s beautiful!” Then ask to hold the baby (if you can). Just like you would with any other baby. The birth of a child is something to celebrate, and an extra chromosome doesn’t change that. Your friend’s baby is a gift, just as any baby is.

If you have positive experience with Down syndrome (i.e. a cousin or a friend had it, and they did fine/were adorable/whatever), share it.

{If you feel it is appropriate} Give them a copy of Kathryn Lynard Soper’s book Gifts. Because Gifts tells the stories of 63 different parents, it’s a chance for your friend to meet 63 people who’ve already been there. {There is also now a follow-up to Gifts, which is called Gifts 2, How People with Down Syndrome Enrich the World.}

Offer to care for other children if they have them. Bring in meals. Visit them at the hospital (and bring food that isn’t cafeteria food). Run errands for them. Ask how the baby is doing.

Try to get the terminology correct. In the U.S. it’s “Down syndrome,” not “Down’s syndrome” (because it’s named after the guy who identified it, not someone who had it). And it’s a “baby with Down syndrome,” not a “Down’s baby.” I know this sounds really nit-picky, but it’s important. This way, it’s a baby first, who happens to have Ds.

If there is a Down syndrome support group in your area, get a contact number for your friend. But don’t be surprised or hurt if she doesn’t contact them for a long time (or at all). Everybody has different needs.

Mostly, your friend just needs to know you love her and that you will love the baby too. 

I'd add two things:  First, please don't say, I'm sorry.  If you are concerned about your friend, say just that:  I am concerned about you.  I care about you and will be here for you.  But saying I'm sorry sounds as though the baby is a reason for sadness.  All babies should be celebrated, even if some of the details were unexpected.

Second, send your friend a link to one of the many family blogs which give examples of life with Down syndrome.  There is a huge support network out here for individuals and families living with Ds.  Your friend is not alone!

Please see the original post for a list of things NOT to say,  and check back here for tips on talking to others about your child's Down syndrome diagnosis.

Checkmarks, Bubbles and Dots

...can never paint a full or accurate picture of a person.

While this type of questionnaire might provide some broad information, these dots do not represent my child.  They don't even begin to say what it is about her that makes her unique, special and talented in her own right. 

Whether or not my daughter can call her friends by name, can button her coat or knows at least two opposites, does not have any impact on who she is.

Two of my daughters have Down syndrome. They are not Down syndrome. 

They are amazing little girls who deserve to be seen as such.

My girls are not best described by a certain number of chromosomes, a list of health concerns, a score on a standardized test, or by the answers to questions on a fill-in-the-bubble developmental inventory.

Development charts and formal assessments provide limited information and perspective.  Yes, Bridget and Alina have Down syndrome, which includes developmental delays.

They both also have many skills and abilities.  They are loved and cherished and supported--and we see their huge potential. 

They deserve so much more than a label.  

They defy definition :).

*Tomorrow's post will be an update on Bridget.  Wednesday's will be all about Alina.

Flashback

There is a specific reason this story is posted today.  Check back tomorrow to learn the significance...

A Regular Baby (Bridget’s Arrival)

Written by big sister Sara on her 11th birthday (10.22.07)

Bridget looked just like a regular baby. She didn’t look any different than I thought she would. She was really beautiful and sweet, but I was worried about her health and what her life would be like. I was sad about all the things she might not be able to do. When I first saw her, I remember exploding into tears. I don’t know exactly why—I just did. I felt a mix of emotions. I was excited that she was born, but I was also a little disappointed. I was just hoping for a regular baby that we could take home in a couple of days.

I’m 11 and the oldest of five now that Bridget is here. I thought our family was big enough already with my two little brothers and one sister. When my mom told me she was pregnant with number five, I cried. I was happy—and surprised—and a little worried about the added responsibility of having another younger sibling. I had no idea how all of our lives would change the day she was born.

We were all supposed to wear pink t-shirts to the hospital to meet our new baby sister. But, she was almost six weeks early and the shirts we ordered had not arrived yet. My dad came to pick us up, and we had to hurry because Bridget needed surgery and was being moved to a different hospital. When we got there, I could tell my mom had been crying. She said Bridget would be fine, but that there was something other than the surgery that we needed to know about. “Bridget has Down syndrome,” she said quietly. We talked about what that meant as a family for only a few minutes before the nurses brought our new baby sister to see us.

As I looked at her, I felt sad that she couldn’t come home with us. I didn’t like seeing her in that plastic bed with all the tubes and wires attached to her. I wondered how long she would be in the hospital and what life would be like once she came home. I did not know what to expect.

After her surgery, I spent many hours at the hospital with Bridget. As I got to know her, I discovered that my baby sister was just a regular baby after all.

I realized that she was absolutely perfect. She was warm and soft and she smelled sweet. She even looked a lot like I did when I was a baby. I ached when I had to leave without her. I slept with clothes she had worn that we brought home to wash. I couldn’t wait to have her home with the rest of us.

We had all been so sad when Bridget was born needing surgery. And then there was the Down syndrome part. I didn’t know when we would be happy again, or if we would even be celebrating her birth. But, when she was finally able to leave the hospital--after a month-long stay--our whole family walked around her hospital floor like we were in a parade. My mom carried Bridget. We were all smiling and waving and proudly wearing our pink t-shirts. The nurses were clapping. It was a great celebration.

I know now that you can’t just hear an explanation of Down syndrome, or go on the computer and research it. The way to learn about Down Syndrome is to know someone with it.

Before Bridget was born, I never thought much about people with disabilities. I didn’t really pay attention. Now, when I see people with handicaps or disabilities, I pay more attention. I know they sometimes have to try harder to do the things most of us take for granted. I see people with disabilities as regular people who are just trying to learn and to enjoy life like everyone else--and I think of the families that love them.

To me, Bridget is the most beautiful baby in the world. She’s adorable and funny and she likes for me to hold her against my chest. I know she loves me because she smiles at me. I feel like we are going to be really close. I think Bridget was made especially for our family. She’s like a puzzle piece that fits perfectly and makes us complete. We didn’t know it, but we were waiting for her all along.