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.

Five

It's been five years today since this little girl arrived in our lives:

Each year it becomes more clear that Bridget's arrival (more to the point:  Bridget's Down syndrome diagnosis) brought fear and anxiety that was unwarranted.  Each year, it becomes more and more evident that we wasted time and energy feeling uncertain when we should have been celebrating.  

This little girl is so worth celebrating!

Bridget, you are everything I could ever have imagined, and more.  From every angle, and every vantage point, you are precious.  Your joy is contagious.  Your light is undeniable.  How lucky we are to love you!  Happy Birthday, my beautiful, sweet girl!

Sisters, Daughters, Granddaughters, Cousins, Nieces, Neighbors, Friends...

People.  Bridget and Alina are people. They are not worth less because they happen to have a diagnosis which includes intellectual disability.  

They have worth, and dignity, and deserve as much as anyone else, to be treated with RESPECT.

Let's make RESPECT the new R-word.

Important Reading: 

R-Word - Spread the Word

 Ellen's post on Love that Max

Thoughts from Larkin's Mom

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.

Alina - October

Alina is three and a half years old.  And though most people are shocked to hear it, Bridget is bigger than Alina, who looks much more "sturdy" than her older sister.  (Alina is 36 inches and 30 pounds.)   

She adores Bridget (who she now calls Bruh). She truly looks up to her.  It is too cute.  Whatever Bridget is doing, we will usually find Alina nearby doing the same thing or sitting and smiling while watching Bridget. 

She also "tells on" Bridget by pointing while saying Bruh! (look at Bridget!) to let me know that Bridget is getting into something or doing something she is not supposed to be doing.  As innocent as Bridget looks, this happens more often than you might think ;).

Alina loves to eat!  She's not picky.  At all.  She is game to try (and will finish) whatever we offer her.

Alina wants so much to talk, and is really trying.  She is making progress, though at this point we are hearing more sounds than clear words.  Her speech therapist at school is working on sound production while also offering her a variety of other creative methods to communicate (picture options as well as devices with switches and buttons that she can manipulate to show what she wants and what she understands).

Alina is downright dangerous with the t.v. remote. Every time she gets a hold of it, she's making something purposeful happen (and not just changing the channel or turning it off).  She's been caught trying to order Hot Tub Time Machine more than once, and recently, she somehow recorded 13 days worth of infomercials. 

Alina loves to tickle other people's feet (Emmy says it is one of Alina's talents...she really tickles).

Our two youngest girls are buddies...and complete opposites. 
The laughing that goes on at our house (and there's a lot of it) is a perfect example of the difference in our two little girls.  Bridget is a hee hee hee kind of a girl, while Alina is definitely the huh huh huh type.

While Bridget hugs, Alina waves.  She is the perpetual mayor, greeter and beauty queen, quick with a hearty Hi!, a wave and a smile.  

Bridget is a girly-girl.  Alina is a mixture, a tomboy-girl--she is rough and tumble, but loves (and I mean loves) playing dress-up.  No matter what she is wearing, she is also always in a tutu, or play shoes! 

And while Bridget is cautious, Alina is our risk taker (and has the bumps and bruises to prove it).  She approaches life, in general, with vigor.  She's quick to jump in and participate.  

To give a little more insight into our youngest daughter, here are some observations from her therapists at school:

"Alina has acquired her sister's love of giving orders!  We can't go more than 5 feet without her telling me to TOP!  (stop) :)"

"Alina is so friendly to the students we meet in and around the school!"

 "At snack today, Alina requested ah. puh. mo. (more apple) with prompting.  She signed it, too :)."

"Alina is doing super!  She seems to be getting into chairs safely--though she did try some acrobatics once in a chair :)."

Alina has added so much to our lives.  She's active and curious and adventurous, and she keeps us busy.  She also has a wonderful disposition and sweet spirit.

She is her own person...a beautiful and amazing person we are happy to know and love!

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.

The Crystal Ball

At the time of our child's diagnosis, how many of us wished we had a crystal ball to see what the future would hold?  How many of us worried about how Down syndrome would affect our lives? 

But then how many of us felt the fear and sting (that came along with the diagnosis) begin to fade as we realized that Down syndrome was only one facet of our child?  How many of us have realized that Down syndrome has not been nearly the deterrent we'd thought it would be? 

We are the crystal ball for families with a new diagnosis.  All of the individuals and families already living with Down syndrome are the glimpse into the future.

I've written about how our reality is different from what I had first envisioned and feared, and I have read many other accounts from parents, grandparents, and siblings of what they wish they had known from the outset. 

Open Letter to Parents Facing a Diagnosis of Down Syndrome on Finnian's Journey, and A Conversation Between Me Then and Me Now on Raising Reid are just two examples of parents sharing what they have learned along the way.   And the booklet What Parents Wish They'd Known, published by The Segullah Group, is a lovely compilation of reflections on raising a child with Down syndrome.

I would like to build a list of pages or posts that would be helpful for parents with a new Ds diagnosis.  What have you written or read that should be included?  (Anything other than Welcome to Holland... which will be the subject of a separate post here).
Please leave a comment with suggestions or ideas! 

From the Heart

When I asked the kids to sit down and write a post for Down Syndrome Awareness Month, I had a feeling they would do so willingly.  What they each have written has come straight from their hearts (and heads), with no editing. 

Last year, to help get them started, I asked the kids to name three words to describe Bridget.  I asked them share details about Bridget, and how they felt about having her as a sister.  And we went in order, youngest to oldest--Emmy, Brian, Kyle, Sara.

This year, the kids chose the day they wanted to sit down and write.  They were asked to write on a topic of their choice, about either or both of their sisters--something which would offer readers a glimpse into our lives and how we feel about Bridget and Alina.

If you had a chance to talk to them at length about their sisters, you'd hear lots of funny stories and all about how their friends think their little sisters are "cool".  You'd hear about the little moments that make up our daily life, and about some bigger moments with much wider significance.

They have grown up loving and valuing their sisters with Down syndrome.  They've seen that Bridget and Alina are more like any other person than they are different, and just the same in the most important ways...

Loved and Wanted, by Sara

This past December, when my family committed to bringing home Alina, I understood that there were many unknowns, but I was all for it nonetheless. I saw all of the potential in her and the need for love in her eyes.  During the whole adoption process, I was eager to meet my newest sibling. Being the oldest, I had already witnessed the arrival of four children into our family. Alina's arrival into our lives was different, yet felt much the same.

When Bridget was born four years ago with Down syndrome, we were unsure of what her diagnosis would mean for her and the rest of us.  The first few weeks with Bridget were scary and filled with uncertainty, but we quickly realized that Bridget was perfect.  The fact that we were willing to travel half way around the world to get another child with Down syndrome shows how much we love and value Bridget.

From December until April, I thought about Alina every day. All we had was a picture of a little bald baby with sad eyes, who needed a family--who needed our family. Once she and my parents came home, I was ecstatic. I saw a little girl that was full of energy, had beautiful blue eyes, and was adjusting to our family wonderfully. Alina was letting us give her hugs and kisses. She was finally ours.

In the past six months, Alina has melded into our family like she has always been here and has always been one of us. Alina and Bridget are the dynamic duo, completely inseparable. Sometimes I will glance over to wherever they are, whether it be the family room or the back of the car, and see them happily holding hands and grinning.

I have realized in moments like these that I am so proud to be an older sister to these two amazing little girls. They have slammed down any preconceived notions that my friends, family, or even I have had about Down syndrome. They have inspired many with their love and vigor for life. They have helped me to realize that the seemingly 'imperfect' parts of life can really be the best of them all.

Sarah Palin...

...You have an incredible opportunity to change things for the better, to tell the world that people with Down syndrome are worth fighting for, and that the "R" word is completely unacceptable for use by anyone, anymore.

Calling out Rahm Emanuel, for his use of the word, was expected. But the pitbull's lipstick prints on Rush Limbaugh's buns were unmistakably yours. A maverick would not have let him get away with using the "R" word, even if setting him straight caused some political discomfort.

If it is tough to answer questions from reporters about Trig, parenting a child with special needs, or about Down syndrome in general, get a mantra. Have a "statement" in your back pocket--hopefully one you have thought about carefully and believe with all your heart--to pull out when the topic is discussed. "All people with Down syndrome have worth and potential, just like everyone else" is one (completely non-partisan) possibility.

You are in the national spotlight. When the chance presents itself again, use that spotlight to help others understand the worth and potential of Trig, and of others with Ds. There are a whole lot of us out here advocating for people and families living with special needs, but we don't have millions waiting to hear what we have to say. You, though, have a unique opportunity to bring awareness to the masses. Use your voice for good.

***

To retard, historically, means "to slow, hold back, prevent or delay".

Mentally Retarded is a medical term which means "cognitively or intellectually delayed".

Retarded, in the medical world, has traditionally meant: "Occurring or developing later than desired or expected; delayed" or "slow in mental or emotional or physical development". But even the medical community is becoming much more sensitive to the derogatory usage of the term and is shifting to use cognitively delayed instead of mentally retarded because of the term's negative and hurtful connotations.

Today, the slang use of the words retarded and retard, are inappropriate and offensive--in any context. They are words used to demean, hurt and diminish, and are meant to suggest that something--or someone--is backwards, stupid, ridiculous, annoying, or worthless.

The Oz Squad is a group of active bloggers dedicated to Down syndrome education and advocacy. Please visit the Oz Squad blog/Open Letter to Sarah Palin post, which asks her to take a stand against the use of the "R"word, even in satire. Please read and leave a comment to stand with us in support of all people with Down syndrome.

Sarah Palin...

...You have an incredible opportunity to change things for the better, to tell the world that people with Down syndrome are worth fighting for, and that the "R" word is completely unacceptable for use by anyone, anymore.

Calling out Rahm Emanuel, for his use of the word, was expected. But the pitbull's lipstick prints on Rush Limbaugh's buns were unmistakably yours. A maverick would not have let him get away with using the "R" word, even if setting him straight caused some political discomfort.

If it is tough to answer questions from reporters about Trig, parenting a child with special needs, or about Down syndrome in general, get a mantra. Have a "statement" in your back pocket--hopefully one you have thought about carefully and believe with all your heart--to pull out when the topic is discussed. "All people with Down syndrome have worth and potential, just like everyone else" is one (completely non-partisan) possibility.

You are in the national spotlight. When the chance presents itself again, use that spotlight to help others understand the worth and potential of Trig, and of others with Ds. There are a whole lot of us out here advocating for people and families living with special needs, but we don't have millions waiting to hear what we have to say. You, though, have a unique opportunity to bring awareness to the masses. Use your voice for good.

***

To retard, historically, means "to slow, hold back, prevent or delay".

Mentally Retarded is a medical term which means "cognitively or intellectually delayed".

Retarded, in the medical world, has traditionally meant: "Occurring or developing later than desired or expected; delayed" or "slow in mental or emotional or physical development". But even the medical community is becoming much more sensitive to the derogatory usage of the term and is shifting to use cognitively delayed instead of mentally retarded because of the term's negative and hurtful connotations.

Today, the slang use of the words retarded and retard, are inappropriate and offensive--in any context. They are words used to demean, hurt and diminish, and are meant to suggest that something--or someone--is backwards, stupid, ridiculous, annoying, or worthless.

The Oz Squad is a group of active bloggers dedicated to Down syndrome education and advocacy. Please visit the Oz Squad blog/Open Letter to Sarah Palin post, which asks her to take a stand against the use of the "R"word, even in satire. Please read and leave a comment to stand with us in support of all people with Down syndrome.

Talk Talk

I've always wondered what role Down syndrome would play in Bridget's speech development. (Most children with Ds seem to have speech delays, and some are significant.)

When Bridget was an infant, she seemed to be right on track--she was babbling in many different sounds and experimenting with sounds, repeating sounds we made, etc.. She was even trying to mimic singing when she was four or five months old.

As she neared her first birthday, she did not seem to be close to saying words we could understand. And it was not for a lack of trying. She was watching our mouths closely when we talked, and she was very vocal, but not verbal.

We had been playing the Baby Bee Vocabulary Builder DVDs for her, which she was interested in watching, but which did not seem to be making a difference in her language development (acquisition, maybe, but not development).

She has always seemed like she understands most of what she hears. Bridget is very perceptive and aware. She makes connections and is able to let us know that she is following everything that is going on around her.

We started signing basic, everyday words with Bridget when she was about 10 months old. We always said and signed words together so we could encourage both ways of communicating and give her the choice to select whichever way worked best for her.

She picked up signs quickly, earlier than she could speak words that we could understand. With signs, she was able to tell us easily when she was thirsty, or tired, or mad. She told us when she wanted to take a bath, or wanted more of something. Having a way for her to communicate her needs not only helped reduce frustration (for both of us), but helped others understand just how much she was processing.

Fast forward to last summer, when Bridget was three and being evaluated for preschool placement. She was still signing, and was still vocal...but still not verbal. She had begun to say some basic words (and some were very clear). She was not, however, saying more than one word at a time for the most part. The sweet speech pathologist who evaluated Bridget thought she heard Bridget say, "where my mommy go?". While we make a point to never underestimate her, Chris and I were pretty sure Bridget did not utter that sentence.

When preschool began in the fall, Bridget had added a few more words to her spoken language repertoire, but not many. I tried to get her to say the names of her teachers, therapists and aides to no avail. She could not say her own name, either. That first week of preschool, she came home and we ate lunch together mostly in silence. I wanted to know what she did at school, whether she was happy there, and whether she'd learned anything new. But she could not tell me any of those things. I only got information if I emailed the teacher, and I didn't want to bug her every day. There were a few days that I felt a twinge of sadness about it, but that didn't last for long. Bridget seemed to be loving school, and I knew the teacher would let me know if there were any problems.

It has only been four short months since the beginning of school, and we are seeing some major progress in Bridget's speech (as well as in other areas of her development--but that is another post altogether).

I've heard other parents say that their children with Ds became much more verbal somewhere between their third and fourth birthdays, and this seems to hold true with Bridget.

She's attempting to say everything we ask her to repeat. (She also says, "SAY...cup" or "SAY...go sleep!") Last night in the bathtub, she said each of the letters of the alphabet, clearly. Today, while eating lunch, she announced, "Emmy at 'cool' (school)".

She is also answering questions appropriately, for example, the question, "Are you tired?" often gets a "NO GO SLEEP" response. Last weekend, the social worker who came for our home study asked Bridget, "Is there a show you like to watch on t.v.?" Bridget shouted, "MAX!" (Max & Ruby).

I love her new verbal skills...and her spunk. You go, Bridget.

Talk Talk

I've always wondered what role Down syndrome would play in Bridget's speech development. (Most children with Ds seem to have speech delays, and some are significant.)

When Bridget was an infant, she seemed to be right on track--she was babbling in many different sounds and experimenting with sounds, repeating sounds we made, etc.. She was even trying to mimic singing when she was four or five months old.

As she neared her first birthday, she did not seem to be close to saying words we could understand. And it was not for a lack of trying. She was watching our mouths closely when we talked, and she was very vocal, but not verbal.

We had been playing the Baby Bee Vocabulary Builder DVDs for her, which she was interested in watching, but which did not seem to be making a difference in her language development (acquisition, maybe, but not development).

She has always seemed like she understands most of what she hears. Bridget is very perceptive and aware. She makes connections and is able to let us know that she is following everything that is going on around her.

We started signing basic, everyday words with Bridget when she was about 10 months old. We always said and signed words together so we could encourage both ways of communicating and give her the choice to select whichever way worked best for her.

She picked up signs quickly, earlier than she could speak words that we could understand. With signs, she was able to tell us easily when she was thirsty, or tired, or mad. She told us when she wanted to take a bath, or wanted more of something. Having a way for her to communicate her needs not only helped reduce frustration (for both of us), but helped others understand just how much she was processing.

Fast forward to last summer, when Bridget was three and being evaluated for preschool placement. She was still signing, and was still vocal...but still not verbal. She had begun to say some basic words (and some were very clear). She was not, however, saying more than one word at a time for the most part. The sweet speech pathologist who evaluated Bridget thought she heard Bridget say, "where my mommy go?". While we make a point to never underestimate her, Chris and I were pretty sure Bridget did not utter that sentence.

When preschool began in the fall, Bridget had added a few more words to her spoken language repertoire, but not many. I tried to get her to say the names of her teachers, therapists and aides to no avail. She could not say her own name, either. That first week of preschool, she came home and we ate lunch together mostly in silence. I wanted to know what she did at school, whether she was happy there, and whether she'd learned anything new. But she could not tell me any of those things. I only got information if I emailed the teacher, and I didn't want to bug her every day. There were a few days that I felt a twinge of sadness about it, but that didn't last for long. Bridget seemed to be loving school, and I knew the teacher would let me know if there were any problems.

It has only been four short months since the beginning of school, and we are seeing some major progress in Bridget's speech (as well as in other areas of her development--but that is another post altogether).

I've heard other parents say that their children with Ds became much more verbal somewhere between their third and fourth birthdays, and this seems to hold true with Bridget.

She's attempting to say everything we ask her to repeat. (She also says, "SAY...cup" or "SAY...go sleep!") Last night in the bathtub, she said each of the letters of the alphabet, clearly. Today, while eating lunch, she announced, "Emmy at 'cool' (school)".

She is also answering questions appropriately, for example, the question, "Are you tired?" often gets a "NO GO SLEEP" response. Last weekend, the social worker who came for our home study asked Bridget, "Is there a show you like to watch on t.v.?" Bridget shouted, "MAX!" (Max & Ruby).

I love her new verbal skills...and her spunk. You go, Bridget.

New

My time is short these days, and I have been meaning (and wanting) to get here and write about all kinds of things. I have several posts half-done. Does that count :)? Anyway, here are a few things I've been wanting to mention:

- Notice the search bar at the top right under header. Yea! It works. Feel free to try it out :).

- Updates on Bridget:

Preschool is going great. We just got her first progress report, and she is, well, making progress! She has a nice start on many of the goals on her IEP, which I am pleased about, but I am even more happy about how much she is enjoying school (as well as the bus and even her backpack!) and about all the new things she is doing and learning.

We're noticing a "language explosion"--in relative terms, of course. Last night, Bridget said, "I go sleep" and "Where cup? Where my cup!" She has started saying, "Oopsie!" (which has morphed from her very cute "Oop!"), and is now able to say every name in our family (a few of the names are short versions, like "Bri" for Brian...but we know exactly what she is saying, and it is clear to others as well). She is saying "Mom-my" and "Dad-dy" and "Em-my" (when previously she was just saying "Dad", "Mom", and "Em"). She is also beginning to put new words together to describe things, like, "baby sad". Bridget is still signing, but consistently saying words with the sign. She's repeating lots of things they must be doing in school, such as letting us know the type of weather each day at the bus stop (she signs and says "cold" or "rainy" or "sunny"). She will also randomly mention names of her classmates. She is singing along with the ABC's, Itsy-Bitsy Spider, You Are My Sunshine, Twinkle Twinkle Little Star, Happy Birthday and other songs. She says "Hap-py Birth-day" and "Pat-a-cake" very clearly, as well as many other words in the songs. Some parts are less clear to us, but she is attempting the whole song regardless. Wow!

Bridget is very much enjoying all of her siblings (and vice versa). She is absolutely part of the group, just as any other three-year-old would be. She especially likes reading with Emmy, listening to iPods with any of the kids and being in the basement when the boys are shooting baskets (trying to shoot baskets herself).

We ditched the official potty training way back in the summer. Right after we started, it was clear to me that while Bridget was showing many readiness signs, she was not 100% ready to potty train (mainly because she was not able to give me any notice before she needed to go...so even though she was mostly going in the potty, I never felt safe taking her anywhere in underwear). Being able to go when I asked her to was great, but in my mind, that did not constitute being "potty trained". Sometimes, we'd sit in the bathroom for a half-an-hour before she would go. A few days of that was more than enough for both of us, so I decided she was getting ready to train, but was not quite there. And there was really no hurry, other than some arbitrary timeline I'd set to potty train her by the age of three. I decided I'd assess as we go, and begin again when she was able to tell us consistently when she needed to go (and after she'd adjusted to preschool). She has made strides in all areas this past few months. Now it is a matter of me getting serious about it again. When I am able to be consistent and focus on potty training for at least a week, we'll begin again. I am not in a rush, though. It will happen sometime soon :).

I have been thinking of others during this holiday season, and have been giving whenever and wherever I can. Brian's 5th grade class has been talking about Random Acts of Kindness and has been trying to focus on things to do that (1) cost little--or no--money and (2) are unexpected. We've been talking at dinner time about what each of the kids is doing each day to show that they are paying attention to others and how they are spreading love and kindness. We're participating in food drives, adopt-a-family programs and other community-oriented programs, as well as encouraging the kids to give compliments and go out of their way to notice others & opportunities to make someone smile.

(Does anyone remember hearing about the customer who paid for the next person's order in the Starbucks drive-through? There's an idea that could be applied to any drive-through scenario.)

I have been busy fundraising for our local Ds organization, helping friends to locate hard-to-find gifts, and sharing special recipes with family and friends. I'll always answer the call when someone is looking for a certain type of recipe (holiday, nut-free, vegetarian, etc.) if something I have fits the bill. I'll also do some asking around if need be. Giving of time, talents or ideas is free and easy.

I have loved reading all the thoughts and ideas about giving on other blogs. Check Bethany's blog to find everyone else who is participating in her challenge.