A Heart Update

I love this little photo of Ella taking care of a baby doll.  The doll is a resident of her pediatric cardiologist's office.  Ella recently had her 6 month post surgery checkup to see how her heart was doing.  We were delighted to learn that not only did things appear to be functioning perfectly, but if things continue to look like this, she may  not need surgery to fix her leaking valve.  It has either improved or is putting much less stress on her body, and at this point appears to no longer be an issue.  She is scheduled for an echocardiogram in September and after that she should only need 2 year follow-up visits.  This is HUGE!  We have spent so much time and money at the clinic, we are looking forward to a break on both fronts.  We would like to thank everyone who has prayed for Ella.  Your prayers have meant more than you will ever know!

As Long as They're Healthy ...

I've heard it a million times ... when parents-to-be are expecting their bundle of joy, they often say they don't care if it's a boy or a girl, "as long as it's healthy."  I've grown to hate that phrase.  "As long as they're healthy ..." Well, what if they're not? What if your child is born with an illness, a heart condition or yes, even a chromosome abnormality?  What if your perfect child isn't so "perfect" after all?

When Greg and I were waiting on our child from China, we were on the track for a healthy child -- and then one day we felt the overwhelming compulsion to switch to the Waiting Child track.  We didn't know it at the time, but the very week we switched, was the very week our daughter was being added to the waiting child program.  The impeccable timing led us right to her.  But she was not "perfect" ... she had a big hole in her heart and a whole lot of question marks.  And yet something (or somebody dare I say) told us that she was the one for us.

A few months before we switched to the waiting child program, we were discussing it with one of our relatives.  This relative was pretty adamant about only accepting a healthy "normal" child.  "We don't need any freaks in our family," he said.  Those words have haunted me from that day to this.  What kind of acceptance will my child have?  Will the fact that she has special needs cause  her to face rejection -- even from those she should  have the most unconditional love?

18q- deletion is such a rare condition and there is so little known about it.  Our geneticist has never seen it. Our doctor has never seen it.  There is really no clear answer to what we can expect.  We know her health issues are effected -- we have seen that.  But the delays and speech etc. is anybody's guess.  For today there are definitely challenges.  She is simply not developing like other children.  She is not speaking like them. She is far behind, and making very slow progress. I worry about her, and yes, sometimes I get frustrated.  And yet, she is our little girl ... and for some reason God wanted her to be with  us.  And so we trust and hope and pray that she will develop and that whatever her potential is that she will be viewed as a beautiful, happy, precious girl that is worthy of our love and unconditional acceptance. 

Muffins with Mom

Today was a special day at Ella's school ... "Muffins with Mom" ... kids got to bring their Moms to school to enjoy breakfast in the cafeteria with them.  I don't know who was more excited -- me or Ella.  I was super excited to be part of my little girl's day in the place where I literally feel "out of touch".

Seriously, she has this whole circle of friends that I know nothing about!  We walk down the halls and everyone says, "Hi Ella" ...  and she gets so excited when she sees her friends and seems to know all the teachers and aides.  I know this is normal, but my goodness, she is only 4 years old and she has this whole other world ...!

When we got to school, I asked her to take me to her locker so we could put her stuff away before breakfast, and she did just that.  Walked me right where we needed to go.

After we hung up her coat, she showed me her classroom and some of the exciting pictures in the hall ... and "Mommy" got all misty eyed, because I remembered how long we waited to be parents and the gift our little girl is.  Plus, I remember going to this very school when I was in 4th grade, and I have my own memories of those hallways ... to think that my little girl is now walking those same hallways just makes me very nostalgic.

After our little tour of her classroom area, I asked her to take me to the cafeteria so we could have breakfast, and she proudly grabbed my hand and walked me there.  And then she "took over" showing me where I check in with the cafeteria lady, where I get my plate and milk and food ... and NO "Mama" couldn't carry it for her.  She would carry her own plate, thank you very much :)  Then she found a spot to sit by some of her friends and their Moms and we enjoyed a delicious breakfast.

After breakfast, it was time to clean up, and once again she carried her own plate to the garbage and cleaned up her spot at the table.  She was so proud to show me the ropes of what I had to do.  And I also was so proud of my little girl.  She may be behind her peers ... but she has not been left in the dust ... she is getting there.  

We then headed to the gym to meet  up with her classmates and teachers.  There were so many kids who rode the bus and whose parents did not take part in the special day.  I felt kind of bad for them.  I know it is not possible for all parents due to work schedules etc., but it sure was a treat for me to have this peek into Ella's day.  

Here's where it got tricky though ... she did NOT want me to go.  She wanted me to stay and got very sad when I had to leave.  Of course that made me sad too ... but it also made me feel loved.  I know there will come a day when Ella is not quite as proud of her Mom, and so for today I am enjoying the fact that she still wants me around ... and I'm loving being a Mom.  Not just any Mom though, I'm loving being Ella's Mom!

The Many Faces of Ella

When I was a teenager I used to stand in front of the mirror and practice my facial expressions.  Those of  you who know me know that acting has been in my blood  for as long as I can remember.

I was bit by the "show biz" bug when I was six years old and was given the only "speaking part" in our first grade Christmas Program.  I still remember the line, "Come on everybody!  Let's sing!"  I was so proud that I was chosen to deliver that line ... the teacher said it was because I was the loudest ... (come to think of it maybe that wasn't such a compliment) ... but I did have the ability to project.

When I was ten years old I auditioned for a bicentennial play at my grade school, and I got the role of Lady Cornwallis.  You would have thought I'd made it on Broadway.  I was so excited!  I practiced non-stop, "How do you like my new wig ladies?  'Tis the latest fashion ... all puffed and powdered like a summer cloud!"

There were many church plays, high school dramas, and musicals before I went on to perform with the Stained Glass Theatre in Springfield, Missouri and eventually with the Mighty Carlson Art Players in Mauston where I met my extremely talented husband. Drama remains a big part of our lives in Karmen & Greg Ministries.

Today as I drove to work I was practicing a monologue I am working on for the upcoming Women's Conference at our church, and I caught myself staring in the mirror on my visor, practicing my facial expressions ... some things never change.  

All that to say ... you gotta know how proud I am of my daughter's unique talents. She is the queen of facial expressions ... and she knows how to work it! Just 4 years old ... I wonder what's next for her.  Hollywood, Broadway?  Or maybe just her grade school play?  Whatever it is you can bet we'll be sitting in the audience cheering her on!  Or maybe, just maybe ... she'll use those facial expressions to get whatever she wants from this Mama ... (yep, she has my number for sure!)

New Blog Home

I started blogging in 2006 as we were first setting out to adopt our daughter Ella from China.  I wanted her to have a written record of everything we went through on our journey to her.  It was also an opportunity for us to share that journey with our friends and family. 

Ella has been home for two years now, and I have decided to transition our blog away from the www.babybernacchi.com site to this new location where we will focus more on our everyday journey as a family. 

The name "Especially Bright" was chosen because it was a promise God gave me early on in our journey to adopt Ella.  I was praying -- complaining really -- to God about how He promised Abraham his seed would outnumber the stars in the sky, and yet at this rate we'd be lucky if we even had one.  And it just wasn't fair.  And I heard him speak to my heart, "Maybe not ... but the one I give you will be especially bright."

We waited for almost 5-1/2 years in the non-special needs (NSN) line of China adoption and were quickly approaching the time when we would have received our NSN referral, when we felt strongly that we were supposed to get in the special needs line.  In the natural, this didn't make a lot of sense.  After waiting all that time, and being so close to a healthy child, it seemed a little hasty.  But of course we know now, that there was a reason for it.  You see the little girl God had planned for us was in the other line, and the only way we would find her was if we switched to that line. 

Ella came to us with multiple special needs.  She had a hole in her heart (this has since been repaired), an undeveloped lung with unusual complications (this has since been miraculously healed), developmental delays and several other special needs that had the doctors convinced she had an underlying genetic issue. After much study of her chromosomes, and several misdiagnoses, it was determined that she has a rare condition called 18q- deletion syndrome. 

When we learned of the 18q- deletion syndrome my first thought was, "NO!  God you promised us our child would be 'especially bright'.  How can this be?  And yet, if you have met Ella you know that she is without a doubt a bright shining star, and she is the light of our lives. God has had His hand on this little girl from the time she was conceived.  Her story is nothing short of a miracle.  And we believe God is continuing to write her story with each and every passing day. 

"Especially bright?"  You better believe it!  We are holding on to God's promises for our daughter, and believing that she will continue to baffle the experts with her ongoing testimony.  No label can define her.  No chromosome deletion can delete her value.  She is a joy and we are honored to be her parents.

We invite  you to join us as we enjoy God's faithfulness in our everyday lives!