A Special Reunion

Over 12 years ago I met a group of women who became instant friends... all because of a chromosomal abnormality.  Within a period of about 6 months, we had collectively given birth to 5 baby boys and 5 baby girls who happened to have an extra 21st chromosome.  We found each other and began to navigate the path of raising a child with Down syndrome together.  We had playdates, Mom's nights' out together, and lots of  phone conversations as we cried and laughed our way through our babies' first years of life.

  We needed each other, we depended on one another, and through it all we developed a bond that has lasted for over 12yrs. now.  Our times together are way more infrequent than they were back then (although we do have 2 more get togethers on the calendar already--right Kate???) but that bond remains strong.  Do you know why? 

Because no one else can laugh with you at the things your child does that are actually quite bizarre ,and not offend you. But THEY can, because they LIVE it, and they too have learned to LAUGH about it rather than stare and point fingers like others may choose to do. 

 They can truly be excited about your child's accomplishments because they too have lived through the work they KNOW it took to get your child to that milestone.  

We totally "get" each other even though we rarely get to see each other.  We can pick up where we left off even if it's been 2yrs. since the last reunion.  We are not just a special group of friends because our kids are labelled "special needs".  We are special because we are bonded by our fierce and unwavering love and advocacy for our children that society still deems as second class. 

So tonight was one of those rare occasions when most of our schedules lined up to get together to enjoy a night of laughter and catching up.  I enjoyed every minute of it and can't wait for the next reunion!

Mom's of kids with Ds are a pretty good-looking bunch don't you think? :)

Quick Nadia Update:  Nadia's ear tube surgery has been moved to Thursday morning instead of tomorrow morning.  Thanks ahead of time for your prayers!

I'm FIRST!!!

...in putting up this blog post that is!  You know when you get together with 2 wonderful friends who happen to blog, there's always a race to see whose blog the  photos will show up on first.  Or maybe it's just because I like to be first.  Either way...I win! :)

Adeye drove  south from Richmond, VA, and Lisa and I drove north from Raleigh, NC to have a park date halfway in-between with all 16 of our kiddos (if you're doing the math and get confused,  I had my niece along as well) :)

Here was Nadia's take on getting together with her Ukrainian Playmates:

"Hey Hailee!  Remember me?  We met a few weeks ago at your house."  "Whatcha got in that bottle?"  "Can I have some?"

"What's that you hear Hailee?  I think it's a song I really like."

"Care to sing along with me, Hailee?"

"Um...ok...if you don't like that song, we could do something else."

"Hey, come back here!  Really, we don't have to sing, we could just hang out!"

"How about you Harper? Do you like to sing?  It helps if you do these puckering exercises ahead of time to get your mouth warmed up."

"I'm still puckering...but let me know what song you want to sing first."

"Oh, I like the "so big" song."  "Let's do that one when I'm finished with my exercises."

"OK, so now that we're all together, we can harmonize." 

 "I think your Mommy told you girls to keep your hands to yourselves, though."

"Um...Hailee, I'm not sure Harper wants you holding onto her arm like that and we really need to get this music practice going so could you please stop?"

"OK, now we can get started. Don't forget your tongue exercises.  That helps with singing too."

"I think your Mommy probably  meant no kicking either."

"MRS. SALEM!  Hailee's not listening to me and we're trying to practice our song!!!"

"Now that I have you two separated, I think we can finally get this practice underway." "I have my directing stick so all we need to do now is pick a song."

(Harper--"Boy this girl is a bit of a control freak."  "Wonder where she gets that from?")

"I give up.  I'm going to take a nap now."

Tubes to the Rescue--We Hope!

Ever since we met Nadia we've been pleasantly surprised with how healthy she is, how well she is walking, and just her overall development.  Our only concern has been her hearing.  At first we didn't think she was hearing anything at all.  She never responded to our voices, calling her name, loud noises...nothing!

However, now that she's been part of our family for 3 weeks, we've noticed more responses to our voices--especially Jim's deeper voice.  We can still clap loudly behind her and she won't turn or blink, but the subtle differences in her responses have been encouraging although not very consistent. 

Today I had her evaluated by our ENT and Audiologist.  I was very eager for this evaluation and prayed for wisdom for both professionals. 

The ENT said that her ear drums were thickened and she flat-lined for both ears on her tympanogram which basically means that her ear drums aren't responding to noise.  The audiological exam was a little trickier and didn't give any conclusive evidence of lack of hearing or hearing.  It's hard to tell at this age if they're responding or not responding for age and/or behavioral reasons.  We truly believe that Nadia has some learned "tuning out" behaviors that developed from orphanage life.

                           (Wish I could use that reasoning when my other kids tune me out-ha ha!)

So, the bottom line is that we're going to have tubes put in her ears to relieve the pressure of the fluid that has most likely been building up for quite awhile.  We are hoping and praying that this will resolve the possible hearing issue, but if it doesn't, we'll go to Plan B--whatever that may be.  Her surgery is scheduled for next Tuesday, July 13th.  We need to be there at 7:30am for a 9:30am surgery time.  We'd appreciate your prayers for this surgery as well as positive results from the procedure. 

We want to make sure Nadia is hearing all of us say "I love you" so she knows how much she means to our family!!!

Why We Love the Lake!

Nadia's first trip to the lake has been a huge success.  So much so, that instead of napping, I hear her in the other room laughing and throwing blankets around in her port-a-crib.  Here are some of the things we love about the lake:

Paddle Boat Rides!  Nadia isn't sure she's digging the G.I. Joe life vest that all of her siblings wore at her age.  Heck, I think G.I. himself wore it--this thing has been a fixture at the lake house since Jim's parents started coming up here. (at least 30yrs. ago)

Fishing!  The boys have caught some nice sized catfish and bass off of our dock. No, I haven't cooked them...there's a limit to my "lake house" duties you know.

Golf Cart Rides!  Our dock is at the bottom of a pretty steep hill so this wonderful set of wheels gets us up and down when we're not in the mood for a turbo-leg workout!

Boat Rides!  All the kids get to sit in The Captain's lap at this age!  Nadia was still getting used to the wind blowing in her face in this picture.

Enjoying The Ride!

Hanging Out With the Dog At The Helm!

Nadia is liking this whole boat ride thing.

TUBING!!!  The fast the better for these girls!

The boys like it rough and rowdy!

But the best part of all is splashing and cooling off in the water. Pure Joy!

Nadia is definitely a water girl which makes her a terrific fit for this water family!

The Cost of Freedom

Happy 4th of July!!!

  I couldn't help but take a moment as we celebrate our Independence Day, to consider what it cost so many for the freedom we all enjoy.  If you've watched any programs on the History Channel over the weekend you've gotten a good taste of the many hardships that our soldiers endured as they fought the British for the right to be an Independent Country. 

 The cost of freedom is always an expensive one!

 Our Independence cost the lives of over 25,000 soldiers.  Not to mention the families who were permanently affected due to the loss of loved ones.

Some have asked us about the high cost of adopting.  Yes, it is very expensive to adopt (domestically or internationally).  Ours cost well over $24,000.  Is that too high a cost for the freedom of a life?  Most people don't have that much money sitting around in their bank account...but God does. 

 Remember, he gave his ALL so that you and I could have freedom from death. 

He blessed our country with its limited resources and rag-tag soldiers, to defeat the Biggest World Power at the time just so that His name could be glorified and people could worship Him.  Because really, that's why we're here isn't it? 

The cost of adoption doesn't end with court day and "gotcha" day.  Sacrifices will need to be made, schedules re-arranged, yes, financial sacrifices will continue with extra therapies, doctor's appointments, clothing, food, etc. 

But, with Christ as our ultimate example on paying the highest price for our freedom...

How could we not take a little girl from this...

...To the freedom of life in a family?

The freedom to play and experience things she never would have imagined.

And yes, the freedom to express her individuality while having a family who loves and understands her and will allow her to grow and learn at her own pace with patience and understanding.

As you remember the freedom you have as an American, and all who paid the HIGH cost for you to have it, I pray that this Independence Day will be one where you thank God for your freedom, and perhaps ask Him how you can be a part of allowing someone else to experience those same rights you enjoy.

Now go out and light some sparklers but remember not to put them on the ground when  you're finished where someone in bare feet will inevitably step on them. :(

Our Adoption---Article in the Reading Eagle

Here is a link to a story that appeared in the Reading Eagle this morning.  I grew up in Shillington, PA and while we were visiting my parents, a reporter came to interview us about our adoption of Nadia.

 My prayer is that God will use this article to plant seeds in others about adopting--especially children with special needs who have a much lower chance of being adopted before they "age out".

http://readingeagle.com/article.aspx?id=232347     

A Little Slice of Heaven

This first week home with Nadia has been a dream come true.  She is delightful, curious, playful, cuddly, and already loved by her entire family! (OK, A.J. the dog is still checking her out but he's getting there). :)

She is starting to express her needs and her likes and dislikes.

She is sleeping great and wakes up happy and ready to join in whatever the family is doing.

In the last 2 days she has actually started reaching her arms up to Jim and I to hold her--especially if someone is visiting!  This is HUGE to us because in the beginning it seemed like she was pretty much comfortable with anyone.  To know that she's already distinguishing between strangers and us has been heartwarming to say the least!!!

Josi is taking her big sister role quite seriously and helps me with feeding, dressing, and playing with Nadia.

She is even enjoying having her teeth brushed which was a little bit of a challenge in the beginning.

We are so thankful with how well she is doing and I am still in awe that God allowed us to take part in such an amazing part of His Story for Nadia.  I am eternally grateful for this opportunity and humbled at the same time.