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!

Sunshine Girls

June 29.  Sunrise:  6:06a  Sunset:  9:06p

The forecast says it is going to be 72 degrees and sunny at 9 pm tonight. 

We're at the point in the summer when the days are long and there's more time for leisure.  There is finally time each day to stop and take a breath. 

It has been over a month since I've posted here, and it isn't because there hasn't been material for the blog.  

I've taken a necessary break from technology to transition from the school year to summer break.  I needed to go dark--and quiet--to focus on my family and the little moments that make up our life.  This may be the first step away from the computer that I haven't telegraphed.  It just sort of happened.

I've slowly re-organized our closets and our schedules, and am finally making my way out of the piles of laundry and paperwork.

Last summer was a complete blur.  Alina had only been home for a month when school ended, and I was literally running while trying to figure out how to handle six kids going different directions, including one new (and busy) toddler from another country.

This year, we're back in our groove.  

The girls have been in a summer preschool program for the past few weeks, and we have a set of sisters providing respite care during the week.  

We're no longer stuck inside or spending our days moving from one obligation to the next.  We are finally coming out to play :).

As we head into July, we are looking forward to a family vacation and many more days without specific plans.

Though the sun is shining brightly today, our Sunshine Girls keep us covered in light no matter what the weather. 

Proof (and scenes from the month of June):

We're taking a break again over the 4th of July, but I hope to return to posting more regularly soon.  Happy Summer, everyone!

A New Journey Begins

Spring is a time of renewal, growth and new life—the perfect time to begin anew.

And it just so happens that one of my favorite families is growing--both literally and figuratively--through adoption.

My sweet blogging friend Amy and her husband John are beginning their journey to Davis, a beautiful little boy with Down syndrome in an orphanage in Eastern Europe. 

Isn’t he the sweetest thing? He’s gonna steal some hearts with those big brown eyes, I am sure. Davis turns 4 this month (thank goodness, his family found him just in time). He’ll join siblings Josh (9), Anna (7) and Ben (4, Ds). 

Please stop by and show this awesome family some love!

A Look Back: One Year Ago, Alina Comes Home

One year ago today, Chris and I brought Alina HOME.

Here's a look back, from the day we left the town where she was born through the day she came home to her forever family for good:

Leaving Zaporozhye

On the train with Mama's iPod

and the picture book

Self portraits while waiting in the cab in Kiev

for Daddy and Niko to finish grocery shopping

Still waiting in the cab, the first big smiles we got to see

(We'd known Alina 1 week)

Laughing while Mama tosses a hat in the air

Our short time in Kiev on the back end of our trip (with a busy toddler) was a bit different than our longer, and more free flowing stay there in the days surrounding our SDA appointment ;).  

In addition to Alina's final required medical appointment and finishing up our Embassy paperwork, we spent our few days there getting to know Alina and trying to keep her occupied in a very small city apartment.  We were also trying to figure out how we were going to get home since our flight out was cancelled due to the volcano.  

If you are interested in reading a few details of our short time in Kiev before coming home, go here.  

After much work, Chris found a way for us to get home by traveling KLM Royal Dutch Airlines through Amsterdam--staying overnight, and then re-boarding for Detroit the next morning.  There's a long story about getting a temporary visa for Alina (still a citizen of Ukraine) so we could stay in a hotel just outside the airport doors.  We eventually did get an overnight clearance to leave the airport terminal, and had a wonderful night's rest in a lovely and very comfortable room at the Sheraton Amsterdam Airport Hotel.

Welcome to Holland :)!

In Amsterdam, on the trip home

getting settled for the night

Alina was a total trooper for us on the long trip home.  We were all exhausted, but so happy to be coming home to reunite our whole family, finally together under one roof...  

WELCOME HOME!!

Meeting Emmy and Sara

Meeting the Siblings

Sweet, little feet

Baby Dolls & Crackers

From the adoption blog:

Alina seemed very happy to meet her siblings. She was full of smiles and was very relaxed, even though she must have been a little overwhelmed--she was surrounded by all the kids on the kitchen floor. Alina figured out that the kids think she is cute and funny--and she was enjoying all the attention.  Bridget and Alina seemed to recognize one another. They are adorable together! They're about the same height and weight, although Alina is almost 9 months younger than Bridget.  Their hands and feet look almost identical, except Alina's are a bit more chubby :). There was one point last night when I had them both on my lap, which was overwhelming in itself--it is a moment I will never forget. I keep thinking about the two of them together. They are a unit now. My almost-twins, born apart but raised together. 

When we were in Ukraine, someone asked us why we think God gave us four healthy children and then Bridget, a child with Down syndrome. Chris and I have a long answer to that question that we may write about here someday. The short answer, though, may be that Bridget arrived in our lives so that we would save Alina.

One year later and the experience still leaves me breathless and searching for words.  We were so privileged to be able to make that journey, and to bring our little girl home.  

Thank you so much for taking the trip along with us, for loving us and for loving Alina.  We are grateful for all of it....

A Look Back: One Year Ago (Post 6)

Gotcha Day

On Friday afternoon, while having our hurried, brief and last official visit with the orphanage director, we were told that we could take Alina out of the orphanage any time between then and Sunday since they finally had all of the documents necessary to close Alina's file. The director handed us the small slip of paper shown below.  It was up to us to decide the date and time of her "Gotcha Day".  

Permission to take Alina forever

We were scheduled to take the Sunday night train out of Zaporozhye back to Kiev, and decided we should do a little bit of last minute sight-seeing (since we had done NONE yet) and shopping on Saturday morning, before we had Alina with us full-time.  We agreed we'd go and get her Saturday afternoon and spend that night and most of the next day with her before heading out Sunday evening.

On Khortytsia Island

Our cab driver, Igor (pronounced EE-gur) picked us up at our hotel mid-morning that Saturday and took us on a ride through Zaporozhye along the Dnieper River, and over the bridge to historic Khortytsia Island, a 16th to 18th century fortified military camp and home to the Zaporozhye Cossacks (very interesting for others heading to Zap).

We then asked if he could take us to a market where we could purchase a few celebratory items to leave with the nannies and the groupa when went to get Alina.  

We ended up at the largest store you have ever seen under one roof, think WalMart and Sam's Club combined, and then some (and we'd just been remarking how wonderful it was to experience the outdoor markets and small mom-and-pop grocery stores in Ukraine compared to the big mega-stores so common in the States).  But this store had everything we needed:  chocolates, champagne, balloons and little toys for the orphanage and some diapers, food and snacks for Alina for the next several days.

Getting Alina

My description of Gotcha Day itself will be brief. It took more time to drive to the orphanage than it did to walk in and come out with her.

We had no idea what to expect from Gotcha Day. We'd heard descriptions from other adoptive parents of send-offs which ranged from very small, quiet and almost somber goodbyes to full blown parties including both celebration and ceremony.

Playing it safe, we figured our experience would be somewhere in between. So we brought items to give along with our sincere thanks, and planned to spend as much time as we were allotted to express our gratitude to the caregivers and say goodbye to the other children and the only life Alina had ever known.

We brought a large bag filled with gifts, our camera and a small bag with Alina's outfit, coat and a few toys for the ride back to the hotel.

It was a pretty day, with big blue skies and lots of sunshine. Chris took a couple of short videos with his Blackberry before we entered the room:

 

 

The door from the locker room area to the main room was open, and it was unusually quiet in there that afternoon.  We didn't recognize the woman who came to the door, but she knew why we were there and motioned for us to wait outside the room. 

Just like the moments before we visited Alina for the first time by ourselves, we once again waited in silence, standing just off the short hallway leading to her room.  We were both looking around, trying to focus on each little piece of the room where we'd met Alina and spent most of our time with her so far.  We looked at her locker, the one with her name taped to the front and a sticker of three small balloons--one blue, one yellow, one red.  (Her locker was now empty).  We looked at the board with the nursery rhymes used for circle time and the board of pictures of children who had already been adopted from her groupa, at the lace curtains and the tiny blue benches.  We wanted to take in everything about that moment.  Leaving felt as sacred as meeting face-to-face.

All the other times we visited, Alina came clipping out on her own, but that day one of the nannies we didn't know very well came to the door carrying Alina, who was wearing only a diaper.  The woman handed Alina to me, turned and walked back into the room, closing the door behind her. 

I took that as a cue to dress her.  We took our time, talking quietly to Alina as we put her new clothes on her.  She noticed, and I think she understood that the clothes and shoes and coat were hers.

We sat there for a few minutes trying to determine if we should peek our heads in and ask if they would like us to bring Alina back in the room to say goodbye to everyone, or if we could bring in the gifts we had for them.  We didn't know if there was a little party planned, or if there would be some other formal time to say our goodbyes.

Just then, two of the women who really seemed to like Alina came out into the locker room area.  They each gave her a long hug goodbye.  I picked up the bag of gifts and motioned that we would like to give them to the caregivers and the groupa, and one of the ladies motioned to the table, indicating that we should leave the bag there.  I hugged each of them before they went back into the groupa's main room.

As Chris put on his coat, one of the other nannies came into the hallway, patted Alina on the head and waved goodbye to her.  She turned back around and shut the door.

And that was goodbye.  

These are the moments directly following:

 

Images of the day we took Alina out of the orphanage...forever:

 

This was the beginning of Alina's new life.  From our adoption blog:

It was an exciting and emotional day.  And it all hit us at once last night. We have saved a life. This precious little ruby, this innocent child, has been hidden away since birth. What if we had not come for her?  Our hearts are so full and grateful for her and for this journey. At the same time they are aching for the life she has missed out on for three long years, and for all of the other little ones we had to leave behind yesterday--especially the ones with no families coming for them.

At this point, it is all too fresh to write about clearly. We are honestly moved beyond words...

 

In our hotel room that night