Sunshine Girls

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

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

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

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

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

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

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

This year, we're back in our groove.  

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

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

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

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

Proof (and scenes from the month of June):

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

Heard Recently Around Our House

Bridget, when she hears the microwave beep: “Mommy! Poppy ready!” (your coffee is ready!) “Oh, what that ‘mell?  'Mell like poppy. ‘Mell good!” (What’s that smell?  It smells like coffee. It smells good!)

Bridget, after seeing butterflies on the potty seat: “Butterflies fly...sky ” (flapping arms, looking upward) “Angels fly!”

Me: “I don’t want to see anyone naked in our family room. And I am especially talking to anyone who is three or four!” (The three and four year olds must not have been listening.)

Bridget (heard often): 

“Not cool!” 

“No way!”

“Stop it!”

“Oh, you’re right!”

“Oh, that is soooo silly!”

“Oh, ache you!” (Oh, thank you!)

"No Happy"

Me: "Bridget, would you like something to eat?"  

Bridget: "Oh! Ache you, mommy! Yes, a piece a cake!!"



Me:  "Bridget, what are you doing?" (after I saw that Little Bear had ended and she was still glued to the t.v.).  

Bridget:  “I watchin’ Pungebobs!" (Spongebob). "I wike it!"

(Bridget and Alina don't watch Spongebob.  But obviously, Bridget knows who that is!) 

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

For Alina

I've posted this before, but it has new meaning now...since we have our blonde, blue-eyed girl.  


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.

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.

A New Year

And some new pictures to go with it :).

She's from Ukraine alright :), this girl loves high heels!
And can walk in them!

Alina is obsessed with Alphie the Learning Robot
(she dresses him with any clothing that is laying around and loves
to put stretchy headbands with big bows on him!)

Doctor Alina listening to the robot's chest (in backwards
footy sleeper and hot pink cowboy boots)

Bridget talking to her dollies

Sisters, enjoying popsicles in bright afternoon sunlight

I have no idea what was so interesting out there,
but look at those cute little bodies :)

Two little girls, not feeling well, but laughing anyway :)

Moments Like These

...more than make up for the moments of chaos around here ;).  

Waiting for the bus

New dress-up outfits from Nana

Chef Bridget

Chef Alina

We are busy with holiday preparations and activities, celebrating the season and helping others in need.  We are giving thanks for all of our blessings each and every day.

This is a magical time of the year.  It is also a season of miracles.

Do you remember beautiful Elizabeth? 

 

She is getting a family for Christmas--she is being rescued!!

Amazing things have also been happening over at A Perfect Lily! Thank you so much to everyone who has donated, advocated or prayed for sweet Olga.  Patti has already raised over $12,000 from the iPod giveaway for Olga's adoption fund!  This is a HUGE amount, and should be an enormous incentive for a family to come forward for her.  I know it will happen, I just hope it is soon!

Patti has been so successful in raising money and awareness for Olga, that Andrea at Reece's Rainbow has asked her to advocate for a second child, beautiful little Kareen (who is also nearing imminent transfer to an institution).  You might have guessed what this means...it means that TWO children are going to be saved, and there is a new giveaway to make that happen sooner than later! 

Please go here to learn more about how you can have the chance to win a brand new iPad, AND be part of a Christmas miracle for Olga and Kareen :)!  

There are many, many other children who are in desperate need of families.  If your heart is leading you to it, please visit Reece's Rainbow and do whatever you can to help.

My Little Patient

Bridget was diagnosed with strep for the first time the week after Alina came home.  Since then, she's had it six times, and her tonsils were staying huge. 

Waiting, watching Little Bear

Each time she began to get sick with strep, her tonsils would become even more swollen and she'd have trouble breathing at night because of it :(.  So, we did some research, had a consult with her ENT and made the decision to have them removed.  

Last Tuesday morning, Bridget and I packed our bags and drove to Nationwide Children's Hospital.  We valet parked (thank goodness for that option, since I packed like we were going on the Amazing Race) and went straight to the surgical floor for check- in.  

Pre-op, Ready to Go

Before long, we were called into pre-op, where Bridget was given a quick check-up and where we met with each member of her operating room team.  Well, I met with the doctors and specialists while Bridget watched Little Bear ;).

A nurse brought Bridget two handmade dolls (one for her, and one for Alina) and a play doctor's kit.  Another nurse brought the mask they planned to use to put her to sleep, and it was strawberry scented, which Bridget thought was "Yummy!".  She kept sniffing it and placing it on her doll's nose :). 

She was then given Versed, a medication to make her sleepy and to ease the anxiety of separating from me and being in the operating room with a bunch of strangers.  I wish they had given me some, too.  Watching her being rolled away in a hospital bed was hard for mommy :(.

But the surgery only took about 20 minutes and went very well.  

After Surgery, Little Bear again :)

While Bridget was in the recovery area, I went to get my parent badge and a keycard to access her unit (she stayed overnight in the hospital, as is typically recommended for kids with Down syndrome or other health issues).

I took our bags to her room and ate a quick lunch before they brought her in.  She was awake and alert.  She even eeked out a hoarse, Hi, Mommy :).

Bridget was such a little trooper in the hospital.  She was very polite, saying a sweet little thank you to anyone who brought her a popsicle or ice, and shouting a hearty NO THANK YOU when she didn't want something (like pain medicine by mouth, or having her blood pressure taken).

After surgery, Enjoying a Popsicle

Overall, she seemed to be in very little pain that first day and night (she was stuffy, a little warm and a little restless, though).  

She kept wanting to get up and walk around the floor, and so we did.  Lots and lots of times.  We played in the play room on her floor, checked out the vending machines in the waiting room and visited each of the four nurse's stations (several times each).

She ate a full dinner and drank so much that she peed the bed in which we were both sleeping.  

Bridget caught on to me using the nurse's call button and began leaning over randomly, speaking into it saying, Um, red.  Okay.  Thank you. (I'd like a red popsicle) and, Juice.  Ice.  Thank you.  Okay, bye!

She also was quite fond of having her blankets straightened and having her pillow fluffed :).  She kept climbing out of bed trying to do it herself.

All of this (walking, requesting popsicles, straightening the bed) went on through the night.  The nurses kept telling me that Bridget would be "sleep off" the anesthesia.  But she didn't.  When she finally fell asleep, the shift changed and her new nurse came in to check her vital signs. Then she fell back to sleep and a fire alarm went off (a false alarm, but still...seriously?).  Between all of those things, beeping monitors and sharing a bed, the two of us rolled around, walked around and watched Little Bear through the night.

There's a reason they say that you don't get any sleep in the hospital...because you don't! 

Bridget's doctor showed up at 6:25 a.m. to check on her (I was awake and dressed) and cleared us to leave.  It's a good thing...we were both ready!

From her Preschool Classmates

I have a few other notes, details and tips from Bridget's surgery and recovery experience that I will post here soon.  Check back for those if you are interested.  And if other parents of kids with Ds have questions, please ask! 

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.

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 ;).

Sunday Morning Glories

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.