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.

Must.Find.Home.For.ANNA

Look at this darling little girl!  She needs a home.  Could it be yours?

 

You may remember beautiful Anna.  Her story reached--and touched--many people earlier this year.  And a family had committed to her.  But sadly, they could not complete the adoption and she is back on the waiting child listings on Reece's Rainbow.  

Anna is from the same orphanage as Sofia and Zoya.  Jen, Sofia's mom, took the above photograph and her husband, Hector, wrote about seeing Anna and her mother in May.  Zoya's mom, Sarah, saw Anna this spring and wrote about it here (she initially thought Anna was a boy, but the mother and child she saw--and describes in her post--was Anna and her mom).

It is a huge benefit for adoptive parents to know of others who have seen a waiting child and have adopted from the same orphanage or region.  Jen and Sarah can share other observations of Anna as well as of the baby home and city where Anna lives.  They will be a great resource for the family who steps forward for little Anna.

Someone, please, give Anna a chance, a home and a family.  I hope her mama and papa are reading this and will make the decision to go get her and love her forever!

Anna

Girl, Born January 4, 2008

Anna has dark hair and dark eyes.  She is so pretty!  She was born with a minor heart murmur, and should be seen by a cardiologist once home.

From one of our adopting families who visited with her in April 2010:  “I met Anna’s mother today….a beautiful young woman….she LOVES Anna and visits her often…brings diapers and soap…takes her for walks, kisses her, and picks flowers for her.   They are BEAUTIFUL together.   It breaks my heart.   She wants her child but can’t care for her.   We need to find Anna a home so this mother can know her daughter will be ok…she would probably love to stay in contact too…oh how complicated she must feel.   Anna is ADORABLE!”  

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!

Bridget - October

Bridget is four now, and she is definitely the Big Sister :).  She's still pretty tiny (at 37 inches and 31 pounds), but is a mighty little thing.  

She's very socially aware and can name each student in her preschool class.  She's playing with other kids this year and seems to be enjoying her new friendships.

At home, Bridget wants to dictate what activities take place, who participates and how they will play.  She likes to rule help Alina.  She loves to pin her down and pretend to take her blood pressure take care of her with their pretend doctor's kit.  (Alina is a usually a good sport about it, but will also protest when she's really not happy with what is going on.)

Bridget loves and looks after her little sister.  She will pat Alina on the back gently if Alina is sad, and will let me know if Alina seems to be needing anything.  If she wants a particular doll or toy, she will first make sure Alina has a different, satisfactory one ;)--which accomplishes two things:  looking out for her sister and getting what she wants.  Pretty clever, that one.

Bridget is our resident Hugger. 

She greets people with hugs, says good-bye with hugs and gives hugs when people are sad or mad.  She'll often tilt her head to the side and ask in a sweet, little voice, "A hug?"  (Yes, please.  A hug from Bridget is usually just what the doctor ordered :).)

Each day, I give her a big hug right before she gets on the bus.  And each day, she climbs the steps, turns around and shouts (HUG!) with her arms outstretched.  (One More Hug should become a common practice.  What a great way to start the day!) 

Last year at this time, Bridget was talking very little.  She was signing quite a bit and saying one word at a time.  She is talking a lot more now!  She keeps us laughing with her expressions (My word, Oh Goodness!, Give it!) along with some of her other requests, like asking for a paper towel--rather than toilet paper--when she's done using the potty, or shouting, TISSUE! when Alina needs her nose wiped.  

Bridget has started adding an "ee" sound to the ends of words, just because she thinks its funny--"cup" becomes "cup-py", "sock" is "sock-y".  I have no idea why she started doing this, but it sounds hilarious coming out of her little mouth.

Oh, and she is no longer Jibby.  She's "Ji-jit", "Me, Ji-jit" or "Brrr...Ji-jit".

Right now her favorite things include:  riding the bus, taking care of baby dolls, laughing and having tea parties with Alina, dancing with her siblings and watching Little Bear.

She's matured so much in this past year.  I guess that's what happens when you become a Big Sister ;).

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.

Sunday Morning Glories

Common Threads, Namesakes & Blessings

“The Red Thread” is a Chinese proverb which says that the people who are meant to know one another in this life are connected by an invisible thread. The thread may twist and tangle, but it will never break.  It is not affected by time, place or circumstance. Those connected by it will find each other, one way or another.

It is impossible to predict which people and circumstances will be significant in our lives and which will pass quickly through. 

Sitting across from Sara's third grade teacher at fall conferences six years ago, I had no idea that one day Sara and I together would lead her to her daughter. 

The following is a fairly long post, but it tells a story you will want to hear--of the "red thread" which connects Sara and I (and Bridget and Alina, as well as a few other people you may know) to Sara's teacher and her family. 

This is a story of love and light, of faith and fate, of hope and fulfillment of destiny.  It is a story about taking chances, giving thanks for blessings, and making a difference.

* * *

Fifteen years ago on this day, October 22, 1995, we welcomed a precious little girl into our lives.  (We were--and still are--such proud parents.)

Sara is the oldest of our six children.  She is wise beyond her years and has the kindest heart.  She's my right arm, helping wherever and whenever I need it.

Sara has always adored Bridget, and even though she was only ten when Bridget was born, she saw "the bigger picture" very quickly--that people with Down syndrome are people first.  She was excited about life with her new little sister and envisioned the wonderful relationship they now share.

When we discovered Reece's Rainbow Down Syndrome Adoption Ministry (RR) last December, Sara was deeply moved.  She saw beauty and potential in the waiting children.  I remember her talking about all the ways Bridget has added to our lives, and about how much it hurt to think of all of the children who are without homes simply because they were born with Down syndrome. 

I told her we would do whatever we could to help the children on RR.  Sara is often my sounding board, and I confided in her that I was going to talk to her dad about saving Alina.  She was in.  Immediately.



Fast forward to one day in early June, after Alina was already home.  I was going through the waiting child listings on RR, and came across a picture of this little girl (right), which stopped me in my tracks. How had I never noticed her before?  She grabbed my attention, and my heart.  And her birthday was the same day as Sara's.  I felt myself starting to ask the question...Is there any way...?

I sat down and wrote about her here, with the hopes that she would capture the heart of a family who was in a better postition to go get her and bring her home. 

Little did we know, there was a family--a family we knew--who was looking to make a difference in the world, and whose hearts were being moved toward adopting a child with Down syndrome. 

Right before school started, I received an email from Sara's third grade teacher, Shelly Archer.  The message came as a surprise, as we had only crossed paths and exchanged hellos in the halls at school from time to time since Sara was in her class.  But she'd heard about Bridget's diagnosis four years ago, and had also heard of our decision to adopt Alina.  It was her family who had been talking about ways to give back.

The Archer's had discovered Reece's Rainbow through Loving Alina.  They began reading Bridget's blog and several other blogs from our blogrolls, and had learned all about Down syndrome and the plight of orphans with Ds in Eastern Europe.  Like us, Shelly and Andy had not been planning on adding to their family.  But also like us, they felt the pull towards adoption.

I'll let Shelly's post fill in all the details, but the short version is that the Archer Family is bringing home the beautiful little girl with the brown eyes in the pink dress :), so she will be living in our community.  And they will be naming her...Sarah. 

There is so much significance in the name they chose for their little girl--it brings me to tears any time I think about it.  Our Sara and Sarah Ely (a young adult with Ds who blogs about her life and also lives in Ohio) were instrumental in the Archer's decision to bring their daughter home.  Shelly and Andy also followed Sarah B's blog (Angel Eyes, about adopting Zoya). 

Sara, Bridget and I met Joyce and Sarah Ely last March.  At the time, none of us had any idea that--together--we'd inspire another adoption. I'm smiling thinking of the five of us (Bridget, Sara, me, Joyce & Sarah) talking and laughing & enjoying the moment, yet having no clue that we would play a huge role in saving the life of another child with Down syndrome. 

Sarah and Shawn B. were in Ukraine to get Zoya at the same time we were there to get Alina.  We almost connected in Kiev, but the volcano threw things off.  We ended up coming home the day after they came home. 

There is a common thread that connects all of our families.

Beyond the name Sara(h), there are so many meaningful connections.

There are blessings beyond belief.

Happy Birthday TODAY to Sara & Sarah (and some other very special people: Pops, Uncle Sid and my dear friend Sally--whose given name is...Sarah!)

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.

Wordless Wednesday--Oldest and Youngest

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.

Keeping it Real

I have taken some heat recently for my “positive and hopeful” blogging style--either for not being completely honest, or for not having covered enough of the dark side to raising children with Down syndrome (?).

This is an advocacy blog. Beyond that, I don't see a "dark side" to raising children with Ds.  Yes, it is tough at times to parent a child with Down syndrome. It is also tough at times to parent children without Down syndrome. I expect to feel challenged sometimes.

I'll willingly mull over difficult topics or feelings, but I don't linger in the dark places. And I don't focus on them. Maybe that is part of facing life-threatening illness--a desire to live in the light as opposed to rolling around in the dark, a conscious intention to be grateful, as well as to figure things out and move on.

While I love the network of support and idea-sharing that has come through blogging, I didn't set out to find it.

This blog is a way to help others see that a diagnosis of Down syndrome is not the end of the world. It is not a place for me to vent, complain or garner support.  It is a way to open doors for Bridget, Alina and other people with Ds, and to help parents with a new diagnosis.

"Keeping it Real" is the phrase that has been used to suggest that certain bloggers (myself included) are not being honest.  And I am left wondering exactly what the phrase really means, because I think it means different things for different people.

I hope that what people are looking for is depth and truth within reality, whether that is sunny or rocky. We all have a bunch of both of those things--the blissful moments and the ones that just plain stink.

As with any family, things are less sparkly over here sometimes :), but we are truly thriving and enjoying life. 

We enjoy and value our girls with Down syndrome.  We think they're both awesome, and we believe in them wholeheartedly. 

If you visit here, I hope that is what you'll take away.  I can't apologize for that.  That is the whole point of this blog ;). 

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...

My Sister, Alina (by Kyle)

Alina has made an impact on not only our lives, but other people's too. Alina and our family have been completely different than before we found her. She has made us understand that adopting a child like Alina is saving her life and giving her a group of people that she can finally call a family. I would not be able to imagine what life would be without her, or if nobody decided to take her in and she ended up dying without a family. Right now Alina can't thank us with words, but when she gets older she will understand what we did, and she will always know that we are there for her like she will also be for us.

Her Name was Anya



Anya, when she was little

...though she was known as
"Anne Marie" on Reece's Rainbow. 

Anya was a beautiful little girl, born in the wrong place at the wrong time--November 25, 2005 in Eastern Europe.

Although she was full of potential, just as all people, Anya had Down syndrome and was therefore abandonded and placed in an orphanage. 

This precious little girl was underestimated from the day she was born. 

Anya died recently, just weeks before her fifth birthday, and before her imminent transfer to a mental institution. She died alone, without ever having known the love of a family, despite the fact that many were advocating for her. 

She was much loved by the Reece's Rainbow community, and I can't say exactly why no one came forward for her specifically.  I know there were plenty of families "considering" her, but either the timing wasn't right or the funds weren't there.

Anya was in the same baby home as Alina, and was listed along with her on Reece's Rainbow.  The two girls were not in the same groupa, and we don't know if they ever crossed paths at the orphanage.  But we know that they were both there at the same time, in that complex of buildings behind the fence--in the place known as Solnishko.  When we went for Alina, we had hoped to see "Anne Marie" and tell others all about her.

We did not get the chance to meet her in person, although several other families who traveled to our orphanage were able to see Anya and spend time with her. She was said to be inquisitive, sweet and innocent.

From Gretchen's blog: 

Born with a heart defect, which likely could have been repaired had she been born in the the U.S. or a healthier society, Anya entered a low-stimulation room and stayed there day after day. Her days and nights were spent in a crib. Mostly likely she slept in one crib and played in another. In the warm months she made frequent trips to the doctor's office in the orphanage to get IV hydration. She was not allowed to walk because "it was too hard on her heart." When families would ask about her she was waved off as a piece of filth. The caretakers, who seemed very kind, would point to her heart, draw a heart on their own chest, scowl, and wave their hand at her as if to "shoo" her away, and let me know she wasn't worth taking. Their hand gesture let us know that she wasn't even worth our inquiry.

One warm summer day...we brought lotion, baby bath and baby powder to Anya and Taya's group. We saw their group once or twice a day sitting outside under the tree in little umbrella strollers. Many lay in portable cribs or buggies. Their room was on a lower level by an outside door which allowed them to bring strollers and cribs outside for fresher air. Feeling a little brazen, I put lotion on my hands and started giving some mini-massages. First to Taya and then to Anya....oh, that felt so good....for me. It was fascinating to see little Anya come to life after that massage. Her senses were awakened. She craved attention. Every time we walked by she watched our every step. Every picture we have, with her in the background, she was watching intently.

Anya, with Gretchen's daughter Lizzy in June

My daughter Lizzy spent some nice time with her and has some beautiful pictures with her playing "patty cake", "peek-a-boo", and giving her a little hand massage. I'm glad she got to experience this little innocent soul. Anya touched her deeply.

Anya represents every other child in Eastern Europe with Down syndrome or any other disability whose life here on earth will be snuffed out because they were not born "typical." They were born into a post-communist society that is repressed and unable to care for the "least among them." The society doesn't know what to do with these children/people. In communism, the focus was on productivity, and from a work-force perspective, they weren't productive. So...they got sent away. There are those in Eastern Europe who advocate for their own children or others with special needs and we can pray that someday they welcome these precious children and learn that they are the best teachers we have....

 

Between the age of 4-6 years old (depending on the region and the country), children in Eastern Europe with special needs are transferred to mental institutions. Their prognosis is bleak. Around 80% of these children die within the first year of transfer. The life expectancy for a person with Down syndrome in the United States is 65. In Eastern Europe, if a child is institutionalized, it's 5-6.

Anya left this world as an orphan.  She's found her forever home in Heaven, but much too soon.  Share her story to celebrate and remember her short life, and to help the others find homes here on earth.

Can you help?  Can you bring a child into your home?  Pray, advocate, donate?  Every little bit helps.  

**Donations for waiting children EXPONENTIALLY and directly increase a child's chances of finding his or her "forever family". Go to Reece's Rainbow to donate to a child's grant fund, or to learn more about how to adopt any of the beautiful children waiting for a home.

Making a Difference

Every ounce of effort to understand DS and address it produces a pound of cure for many of its most tragic aspects. ~ Kathy Ireland, whose niece has Down syndrome

NIH funding for Down syndrome research is significantly lacking.  Those of us who live with--and love--someone with Ds, have a powerful voice.  We need to keep using it!  (Please follow the above link to read Kathy Ireland's article.)

Advocacy comes in different forms.  For blogging advocates, Down Syndrome Awareness Month brings 31 for 21--a challenge to post each day of the month, in honor of Trisomy 21.

Each blogger has his or her own goals for the month.  For some, that means finding something (anything) to write about and post, even if it doesn't have much to do with Down syndrome.  For others, the goal is to post information each day about Down syndrome specifically.  (Pictures, links, and re-posts are all easy ways to accomplish both missions.)

Most of us struggle to write or post something meaningful each and every day of the month, but we hope to do just that.  We hope to help others understand Down syndrome itself a little bit better.  We hope to share not only statistics, photos, descriptions and links, but also some of our own hearts and minds.

The larger goal for the month--31 for 21 in particular--is to increase traffic to all of our blogs, which in turn will increase awareness of life with Ds.  If each of us makes it a point to post something each day (or as often as we can) through the month, it increases visibility for the cause.

If each of us makes a point to publish even one post during the month that will help others to understand Down syndrome more clearly, or shows others how much we value our loved ones with Ds, we can make a difference.  You never know, your words (or photo, or link) might be seen by someone making a decision about a program which helps people with Ds, or they might help a parent with a new diagnosis, or even help an orphan with Down syndrome to find a home.

Blogging each day is a challenge.  If you are doing 31 for 21 and have posted each day:  keep going.  If you haven't posted each day:  don't feel guilty about it--and don't give up on it--just post when you can. Even if you are not participating in 31 for 21, please consider writing and sharing. 

Together, we can help change minds and improve life for people with Ds.  We can make a difference.  We are making a difference.

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

The Missing Piece, by Brian

Bridget and Alina have changed a lot since the spring when we brought Alina home. Alina has been changing, like her laugh when we first met her was bland and did not express her self.   But with a little bit of love, it has changed.  It is full of feeling and full of joy.  She's been given a second chance.  It was our destiny to adopt her.  And now Bridget has a buddy.  The empty spot in her life has filled in.  She has someone she can relate to, grow up with and love.

Sunday Morning Sunshine

 

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.

Each day comes bearing its own gifts.

Untie the ribbons.

~ Ruth Ann Schabacker

My Little Sisters, by Emmy

Bridget and Alina are funny and cute.When Alina grows up I think she is going do gymnastics.When Bridget grows up I think she is going to be a hair stylist.They both like Blues Clues, Little Bear,Max and Ruby and Dora. They both like to get on the bus and Alina likes to push the mini shoping cart at school. At school befor I go to my classroom I go to Bridget and Alinas classroom.Alina is very good at puzzles Bridget is good at coloring.They are both good at jumping and kicking high.

Alina, Kitchen Diva

Oh My Goodness...

Look what we have here:



Two cute preschoolers!

Buddy Walk

I checked the weather forecast before we left for our local Buddy Walk yesterday:  "44 degrees.  Feels like 41 degrees.  Showers.  Fitness comfort:  uncomfortable."

That pretty much sums it up.  Uncomfortable.  (I hope next year's walk falls on a day that is 75 and sunny!!)

Bridget woke up at 6 a.m., and was not in a particularly celebratory mood, despite the looks of the first few pictures below which were taken immediately after we got there :). 

We did get to see a few old friends and meet some new ones :).

We spent most of our time at the Reece's Rainbow table (with the Smith and Jobes families--who did all the work!)  The Smiths are working on saving Yana, and Faith and Evan Jobes are making their way to Robyn.  Please visit their blogs and sponsorship pages and help support their adoption journeys! 

We also enjoyed talking to several other families with questions about adopting children with Ds and seeing some precious, little new babies with Ds and meeting their families :)!

Our time was cut short at the event due to a couple of little girls who were pretty unhappy with the wind, cold weather and rain ;).  A few pictures from the morning:

"Yea! We're at the Buddy Walk!"

Alina:  "Hmm.  What's over there?"  Bridget:  "Yea!"

Alina:  "I'm outta here!"  Bridget:  "Woot!  I'm still cheering!" (How quickly the tides turn when you are 4!)

Alina looking at the poster with her Before & After pictures on it :)

Sara trying to console Bridget

It didn't work.  Sara is faking it ;).  Bridget is not.

Mommy trying to get Bridget to smile.  It didn't work ;).

Alina saying "GO BUCKS!" to Ethan Smith.  (Her Daddy is so proud!)

Happy Down Syndrome Awareness Month!