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!

Stop the Presses!

We're not moving to a different blog address :).  Importing problem solved.  And I don't have to re-build my Down syndrome-related links.  All content from Loving Alina also appears here now as well.

Thank you so much for following!

What You Can Expect

...to see here during the month of October:

- Thoughts, quotes and links related to all aspects of life with Down syndrome

- A post about our new blog title :)

- A new blogroll on the sidebar with links to other blogs about International Special Needs Adoption.  I am also planning to add more blogs about Down syndrome.  (Please leave a comment if you have/know of a blog you'd like to suggest!)

- Video of our girls in action :)

- And of course, stories, pictures and written updates on both Bridget and Alina!

If you have questions you'd like answered, or would like me to cover a specific topic, leave a note in the comments section on this post or send me a private email. 

Our local Buddy Walk is tomorrow, and I will post pictures afterward. 

Happy Down Syndrome Awareness Month!