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

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

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.

Saving Normal

A new, less-invasive and accurate blood test to detect Down syndrome early in a pregnancy will be available to the masses before long.

It is being billed as a test "which has the potential to reduce the number of women referred for invasive testing for Down syndrome by 98 percent". It is a test that will "save women from losing normal children just because of a procedure".

New Down Syndrome Test Could Cut Healthy Baby Deaths:  Non-Invasive Blood Test Could Eliminate Miscarriage Risk of Amniocentesis

This story was run widely in newspapers, on t.v. and on the internet. News anchors reported the story with enthusiasm. "Exciting!" and "Fantastic!" were just a few of the exclamations heard in the clips.

Amidst all of the excitement, there was little discussion in the news reports about the consequences and implications of the test. (The comments sections on-line are a different story--as anyone who has a personal stake in this issue is already aware).

One expectant mother who had the test (and it was negative) was so relieved to know that her baby "would be safe". A punch in the stomach would have felt better than hearing that statement. The message: Down syndrome is to be avoided at all costs. Saving "normal" babies is the goal.

I've been around this debate long enough to know that there will never be a last word.

"Personal choice", "burden", "cost to society", "quality of life"....are all issues which come around and around again. But what we are really debating is the value of human life.

If we value Life as a whole, we don't put qualifiers on it. We don't reason and rationalize lives out of existence.

More than 9 out of 10 expectant parents who learn that their unborn baby has Down syndrome will choose to terminate. This statistic is hard to process. It says plainly: to most people, individuals with Down syndrome are not worthy of life.

Loving two little girls with Down syndrome, its something I can't even begin to process.

Because our experience is not a hypothetical one.

Our daughters with Down syndrome are real. They are vibrant, beautiful people who are as worthy of life as anyone else. They are people. They are my children. They are my cherished daughters.

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. 

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.

Darkness and Light, Revisited

I will love the light for it shows me the way.

Yet I will endure the darkness for it shows me the stars.

~Og Mandino

It is hard not to be hopeful when you've "seen the light"--when you have learned that the darkest moments illuminate.

I've covered it before on this blog, how we came through the darkness of early diagnosis into the light...Bridget's Light, Alina's Hope...

When Bridget was born and I was in the phase of trying to figure it all out, I was unsure of many things. I felt off-balance, and a little scared. I spent the first 24 hours after Bridget's birth without her. She needed surgery and was taken to another hospital. I don't like thinking about that first day, there was so much sadness.

But an epiphany came despite the darkness--or more likely, because of it. I can tell you the moment it all started to swing, the moment I felt awe instead of fear about our new life with Bridget. She was sleeping peacefully, recovering from her surgery. Chris and I were standing together, studying her, completely absorbed in her and in that moment. We'd been so quiet following her birth, not knowing how to console each other or how to sort it all out. I've said it before, how it occurred to us at the same time, how we looked at each other and smiled. We had the same realization at the same time:  Bridget is ours, she is whole and she is perfect. There are no mistakes, we are all perfectly made.

We are all perfect and imperfect at the same time. Bridget has given us the gift of seeing both our own potential and our own limits, and of seeing people without distinction by side-stepping artificial boundaries which separate and belittle. She's given us a lesson in reverence, in understanding that there is something greater while celebrating the life that is ours.

Begin challenging your own assumptions. 

Your assumptions are
your windows on the world. 

Scrub them off every once in a while,

or the light won't come in.

~Alan Alda

Each day comes bearing its own gifts.

Untie the ribbons.

~ Ruth Ann Schabacker

A Choice?

Last December, when Chris and I told the kids about Alina and her need for a home, they were shocked that her parents were willing to "give her away"--in particular because they are aware of the stereotypes about Down syndrome and how Bridget defies them.

Chris and I did not truly understand, until we traveled, that people with disabilities do not have a place in the world in Eastern Europe. Scratch that. They do have a place--and unfortunately, it is behind a closed door. There is no support for parents wanting to raise children with special needs, and society does not condone raising them in public.

I am not making a value judgment. Twenty-five years ago, it was the same situation in the United States.

When we had court, we heard details about Alina's parents--their names, their address--that they were married when she was born and that they are still together. We saw their signatures on the abandonment decree they signed in the presence of a notary when Alina was two months old (per Ukrainian law--they had left her at the hospital when she was two days old, but waited until the last minute to sign, after blood tests came back confirming that she did have Down syndrome).

I sobbed in the quiet of the court room as we heard details about them.

Alina's full name was absolutely beautiful. Her middle name was the female version of her dad's name.

Her parents were both in their mid-twenties when they had her, and her mom had two miscarriages before Alina was born (full term, weighing about 7 lbs and measuring 22 inches).

They wanted her. They did. We are sure of it. I should clarify. We are sure they wanted her before they knew she had Down syndrome. We have no idea how they felt when they found out--but it meant that they could not keep the baby they had wanted--and we can guess that they were devastated.

We ache for them. As a mom, I can only imagine the pain her birth mom feels having her gone. Even if she was able to rationalize the decision to release Alina for adoption, and even if she would never want to raise a child with Ds, her mom has to feel the physical absence of her daughter.

And she has to wonder what happened to her little girl.

We look at Alina and we see a child who is so worthy of love, who would have surprised and elated her parents on a daily basis. We see a little girl who would have made a great big sister, a great daughter, a great grand-daughter.

We have to assume that her mom and dad would have been as blown away with her as we are...

Making a Difference

The Starfish Story

adapted from The Star Thrower
by Loren Eiseley (1907-1977)

Loren Eiseley was an anthropologist who wrote extensively. This story has appeared all over the web in various forms, usually without credit given. Sometimes it is a little girl throwing the starfish into the ocean, sometimes a young man, once even an elderly Indian. In any form, it is a beautiful story and one that resonates with people all over the world.

Once upon a time, there was a wise man who used to go to the ocean to do his writing. He had a habit of walking on the beach before he began his work.

One day, as he was walking along the shore, he looked down the beach and saw a human figure moving like a dancer. He smiled to himself at the thought of someone who would dance to the day, and so, he walked faster to catch up.

As he got closer, he noticed that the figure was that of a young man, and that what he was doing was not dancing at all. The young man was reaching down to the shore, picking up small objects, and throwing them into the ocean.

He came closer still and called out "Good morning! May I ask what it is that you are doing?"

The young man paused, looked up, and replied "Throwing starfish into the ocean."

"I must ask, then, why are you throwing starfish into the ocean?" asked the somewhat startled wise man.

To this, the young man replied, "The sun is up and the tide is going out. If I don't throw them in, they'll die."

Upon hearing this, the wise man commented, "But, young man, do you not realize that there are miles and miles of beach and there are starfish all along every mile? You can't possibly make a difference!"

At this, the young man bent down, picked up yet another starfish, and threw it into the ocean. As it met the water, he said, "It made a difference for that one."

Our Little Blondie...

...needs us. Soon. Look at this sweet little face. We are lucky to have a new picture of Alina. Her head is still shaved, but from the little bit that has grown out, it appears she is a blonde...something new for our family :).

Pictures of orphans are functional in nature, for the purposes of documentation. I can't wait to photograph her through a parent's loving eyes, taking care to capture an expression that reveals a little bit about who she is. (I hope she doesn't mind having her picture taken, because I am sure it will be like having the paparazzi over here when she comes home.)

Right now, Alina is an orphan, with nothing of her own--no family of her own, dressed in someone's old clothes. She hasn't known what it means to be able to trust that someone will always be there for her. She hasn't known what it means to be valued as an individual. It breaks my heart to see that in this picture, even though we already knew it.

We cannot wait to hold her and love her and tell her she's finally home. We cannot wait to get her into our arms and begin to restore her to the child she should always have been.

We are ready to begin our new journey. I hope she is ready for us :)...

Happy Birthday Alina! We're coming for you soon...

Blink

It is amazing how much a person can process in the blink of an eye. When we react quickly to something, we often say we are acting on instinct. We also use the word intuition. But it's more than that.

When you blink something, your subconscious mind assesses, calculates and concludes something, and then alerts your conscious mind to a decision--thoughts, emotion, knowledge and experience all come together to give you direction, or to give you an answer.

We've been asked how we came so quickly to the decision to adopt Alina.

Did we fall in love at first sight? What was it about her that tugged so strongly at our hearts? Did we thoroughly discuss all aspects of adding another child to our family before committing to adopt her? Did we mull over the pros and cons of international adoption? Did we consider what impact adopting another child with special needs would have on our family, and on our other children?

I knew as soon as I saw her sweet little face that we were going to be Alina's forever family. I couldn't imagine having her ornament on our Christmas tree each year, always wondering if she was healthy, or warm, or smiling, or feeling loved. Chris was drawn to her, too. But the short and most complete answer to the question of how we arrived at our decision: we blinked it.

Without sorting out each issue individually, Chris and I both synthesized a large amount of information in a very short period of time. We knew our hearts--and our instincts--were telling us to bring Alina home to us. Luckily, we came to the same conclusion and neither of us felt the need to consider our options for an extended period of time. We both knew that the blink was right.

We have talked since about all of the things which we both knew when we decided that we would be Alina's yes.

Her picture--the only one we have of her, still:

The version on the left is what we saw on Reece's Rainbow. It is not a good picture, quality or otherwise. Alina's expression is blank, her head is shaved and her little lips are really chapped. But through that picture, we both saw a diamond in the rough. We took that picture and mentally dusted it off. And what we saw beneath was a beautiful, amazing and able little girl.

It was an absolute blessing that the picture looked yellowed and grainy. It made us stop and notice her.

This little girl needs a family and she will be overlooked because of this picture, was all I could think when I first saw it, so I went to work right away on color correcting and lightly editing the photo (version #2, on the right).

Chris and I were looking at a picture of a little girl who is considered "severely disabled" in her society simply because she has Down syndrome, and we know that she was most likely abandoned because of that diagnosis. We both saw so much potential in Alina and know that she deserves opportunity and happiness as much as anyone else. We have the desire and ability to offer her the chance to pursue her dreams.

We have no idea what she is able to do at this point in her life, and it really doesn't matter how independent she is, or how she is limited. We aren't looking at her thinking, What can she do for us? We're focused on what we can do for her. We know she will add her own light to our group and enrich us all in ways we could never imagine. Love adds--it never takes away. We both firmly believe that.

We have a first-hand example--in Bridget--and know that people with Down syndrome have many abilities. Alina is sure to have her own set of challenges and skills. We all do.

Alina is just a little bit younger than Bridget. We have researched therapies, medical care, financial planning, education, nutrition, etc. for Bridget and have already found our way through many aspects of having a child with Down syndrome.

We have a wonderful pediatrician and school system. We are surrounded with people who care about our family and who believe in us--and in our commitment to living a life filled with love.

We already have a house full. What is one more :)? And we already have a child with Ds. That's no big deal for us.

We have the benefit of knowing that having Bridget as a sibling has only enhanced the lives of our other children. They adore her. They all quickly agreed that Alina would be welcome and well-loved here, with us.

In the blink of an eye, all of these things came to mind. We knew right away that we we're taking a gigantic leap of faith.

We know now that it is also a giant leap of love.

A Leap of Faith

Having a child is always a leap of faith. We never really know what the future holds for any of our children, whether they are our biological children or adopted children. We can't plan for future diagnoses, illnesses, accidents, surgeries, and so on. We also can't plan for the untold joys and rewards of knowing, loving or raising any child.

Granted, there are some things we can do to reduce our risk of heartache, but the reality is that we either live in constant fear and uncertainty of the unknown and unwanted, or we can choose to live in peace, understanding that there is good in every person and every circumstance--even when we might not first see it there.

We have not yet met Alina, and we have been asked a few times whether we think this process is worth the risk. Chris and I both feel that she is absolutely worth the risk. We are not just offering Alina a life with a loving family, we are saving her life. We are not concerned about facing uncertainty and don't fear hardship in bringing her into our family. We don't need to know all the details of the future to know that every person has worth and much to offer--and that we are absolutely prepared to care for Alina and to welcome her as our own.

What we do know is that Alina is almost three years old and has Down syndrome. We know she was most likely abandoned because of her diagnosis. We know very little else about her. We have just the one picture we first saw on Reece's Rainbow (RR), where her head has been shaved and her sweet little face shows no expression.

We don't know details about her parents yet, or why they chose to give her up. We don’t know anything about her personality or habits, or what condition we’ll find her in when we arrive in her country in a few months.

We are hoping for the best, but are preparing for every possible scenario.

We know that Alina needs the love, comfort and security of a family. We know that she will need good medical care and good nutrition when she comes home. She will most likely also need extra developmental support.

We know that she should be somewhere where her hair is never again shaved for convenience. We know that she deserves opportunities, and that she should be smiling, and laughing, and safe in the arms of her family.

We realize that we will be meeting Alina in her “raw” form—without having had the benefit of a loving home, early intervention, good nutrition, etc., and that her potential is huge.

We have loved learning about Bridget and getting to experience life through a "different" lens. Her Ds diagnosis means that some things are unique to her because of that diagnosis, but parenting Bridget is very much like raising any of our other children.

When we found RR and saw all of the children who have been abandoned because of a diagnosis of Down syndrome, our hearts broke. We see so much potential in ALL of these children. Knowing what we know now (through Bridget) we see diamonds in the rough in every little face on RR.

We are not expecting that Alina will be just like Bridget. We really have no idea how healthy she will be, what her personality is like, or what she will be able to do. As is true with life in general, there are no guarantees for us in the adoption process.

And while we don't know what we will find when we finally get to meet Alina, we do know that while others may sell her short because she has Down syndrome, we will not. She is a human being with dignity and worth. She deserves to have the same opportunities and care as anyone else--and we plan to offer her the world.

Where There is Light, There is Love

***

And where there is darkness, there is also light.

There need only be a tiny sliver of an opening

for the light to enter and envelop all in its path.

***

Take My Hand...

So An Open Letter to Parents Facing a Diagnosis of Down Syndrome by Lisa Morguess of Finnian's Journey is now available on Mamapedia. For all the parents who are raising children with Down syndrome, and for all the parents who will be walking in our footsteps, this is awesome news. Please read it if you haven't already, and pass it along.

I was struck by one of the comments about Lisa's letter on the Mamapedia site:

Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.

And this made me think about how we are all reaching--out for our children, and toward one another--finding our way along this entangled and enchanted path.

I'm giving thanks, too, for all of it.

Here's an excerpt from the piece mentioned above (click here to read the rest of the story):

Thoughts From the Middle of the Night
Pamela Wilson

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend...

Take My Hand...

So An Open Letter to Parents Facing a Diagnosis of Down Syndrome by Lisa Morguess of Finnian's Journey is now available on Mamapedia. For all the parents who are raising children with Down syndrome, and for all the parents who will be walking in our footsteps, this is awesome news. Please read it if you haven't already, and pass it along.

I was struck by one of the comments about Lisa's letter on the Mamapedia site:

Thank you, Lisa, for writing this. It is one of the most accurate articles about Down syndrome I have ever read. I have a grown son who was born with Down syndrome 26 years ago and wish I could have read your words when he was brand new. My son was in kindergarten when I wrote "Thoughts from the Middle of the Night" - It was meant to be a Thank You note to families who paved the way for the opportunities they created so he could show us his true potential. This Thanksgiving I will keep your words in mind as I celebrate the gratitude I feel among friends and family for my life and his. I feel so thankful for all our sons and daughters, and for mothers like you who reach out to us all.

And this made me think about how we are all reaching--out for our children, and toward one another--finding our way along this entangled and enchanted path.

I'm giving thanks, too, for all of it.

Here's an excerpt from the piece mentioned above (click here to read the rest of the story):

Thoughts From the Middle of the Night
Pamela Wilson

When my son was born and I was told he had Down syndrome, I did not cry for a long time. But when I saw a girl walking hand in hand with her little brother to the viewing window of the hospital nursery, I could not hold back my tears. I knew my daughter would never walk with her little brother that way. I knew he would never experience the small pleasures of life I always took for granted. In those minutes my heart was broken and I was overcome with sadness for both my children.

Now, almost six years later, I am filled with pity for the misinformed, heartbroken woman who sat crying in that cold hospital corridor, without hopes, dreams, or fight in her. She was wrong about so many things. That part of me continues to be reeducated: I am grateful for every new lesson I learn.

I am thankful to that woman. She found she did have some fight in her. She was not the first mother to fall in love with her newly-diagnosed child. She learned of brave and stubborn mothers who put themselves forward in the media to spread a message of hope. She let the memories of those mothers stir her into action. I shall always revere the mothers and fathers who reached out a hand, and who built a foundation of support, information, and resources for women like me to draw upon. What they did for their children transformed my son's life. They continue, still looking forward, always reaching back to help others.

I still reach back to the woman I was. I hold her gently and wish that in her grief she could hear me. "It's not like that. Please don't lose yourself in that sadness. Hold on, wait and see. So much of that grief is over things that are just not true." I know she has to sit there crying, and I don't know how long. I will wait with her and be a friend...

Our Fragile Emissary--A Poem

Our Fragile Emissary
by Nancy Tupper Ling

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.