SADLY, IT IS REALLY TRUE

We have often told people that if Ben hadn’t been adopted, he would have been transferred to an adult mental institution in his country.  He most likely would have spent the rest of his life there because children become very hard to access for adoption after that transfer.

Sometimes I can’t even believe that truth.  What kind of life would a 5-6 year old boy have in a mental institution?  How sad, how bleak, how devastating.  

I can’t imagine what Ben would be like today if the past 3 years he had been in that institution versus where he is now after being home in America for 3 years.  He has come so far!  I’m afraid he would have lost so much if he had been forced to move from the orphanage to the institution.

But this is the truth.  

I was reminded of this when I read a FB post from a family who adopted a year before us from the same orphanage.  Because their child had a good friend at the orphanage that had been transferred out, this couple asked to visit the mental institution during their time in country.  They visited with the children at the institution, including their son’s friend.  They have photos.  

Sadly, the fact of transfer at 5-6 years old to a mental institution is really true.

Thank you Lord for rescuing Ben from this terrible reality.  Thank you he is home with us: happy, safe, and flourishing!  It is truly a miracle!

PLEASE REMEMBER WHY

A day off from school and work...a three day weekend...day to plant flowers...fun with family and friends...burgers and brats...

Please remember Memorial Day 

is more than these things.

HAPPY!

  

First, Happy Ben!  

Ben and Jonah went on a field trip with their 2nd grade class this week.  

We debated whether we should even send the boys on the field trip because we worried the museum might be a hard place for them to stay engaged (and out of trouble-haha!).  

However, because we have such great faith in our amazing school staff, we knew that some how these wonderful women would make the field trip work for our boys.  And they did!  

The boys had so much fun!  From the bus ride to the museum, to the horse carriage ride, to the picnic for lunch, and just hanging out with their peers, the boys rocked this field trip!  

As you know from reading this blog, the boys have very different personalities.  Jonah tends to always be pretty happy and excited about life.  Ben tends to hold back a little, often acting mad rather than let his guard down and being happy.  That is why I am sharing this photo of Ben from the bus trip to the museum.  The look of pure joy and happiness on his face is one he doesn't let us see often.  I think this photo is soooo beautiful because it shows Happy Ben!

I included this next photo because it shows how wonderful kids can be.  The two classmates on either side of Ben are holding Ben's hands while they ride on the horse carriage.  Isn't this sweet?  I wish I could show you the entire photo because it would show all three kids smiling and laughing and having FUN!  Ben and Jonah are very blessed that they have a peer group that is getting to know them and love them and support them.  

That is the blessing of inclusiveness!

Now for the second happy:  

HAPPY 21st Birthday to our Abigail!  

From this amazingly cute little baby girl

 

To this amazingly beautiful, kind, smart, and wonderful daughter and big sister:

 

We love you so much and are so proud of all your hard work at college the past 3 years.  You have a bright future ahead of you because you are such a bright and incredible person!

Happy 21st Birthday!

Photos from the birthday party for Abigail.  We celebrated with my mom and dad at the rehab center.

Our two Happies!

YOU COULD DO THIS!

As I wrote the previous post giving a shout out to some amazing people, this thought came to me:
If you feel the Lord is calling you to adopt a child with Down syndrome, YOU COULD DO THIS!

I am not trying to minimize the responsibility and magnitude of adopting a child with special needs.  I understand it is a huge decision that requires much prayerful consideration and thought.  I know that because we went through the decision twice :)

We put a lot of thought into the matter.  

What I want to offer is a list of resources that I feel are very important to have access to in order to help you with parenting a child with special needs.  Sometimes good practical advice is as important as the deep spiritual advice and insight you need in making this decision.

Here are some resources that have been life-savers for us:

1. Great family and friend support.

2. Great community support: church, playgroups, Facebook groups, etc.

3. Great pediatrician who is knowledgeable and comfortable about Down syndrome.

4. Great Birth to 3 Program through your county.

5. Great Children's Hospital close by (ours is 45 minutes away).

6. Great school system that is knowledgeable and comfortable about Down syndrome.

7. Great Down Syndrome association.  Ours is the Down Syndrome Association of WI (DSAW).  They offer education, advice, and even financial assistance for respite care etc.

8. Great County programs that offer financial assistance for programs such as therapeutic horse riding, bike riding lessons, etc.

If you have these 8 resources, that is an amazing support basis for parenting a child with Down syndrome!  In other words, YOU CAN DO THIS!

Link to Information Reece's Rainbow and Special Needs International Adoption

Information about Bethany Christian Services if interested in Special Needs Domestic or International Adoption

SHOUT OUT!

I want to give a shout out to a few organizations that have really served our family in amazing ways!

First, Children's Hospital of Wisconsin.  We have been dealing with Children's since Jonah was 3 weeks old, and even before that with one of our foster babies. 

They are an amazing facility!  In the 10 years we have "visited" them, we have never, NOT ONCE, had anyone not be helpful, friendly, and respectful to us and our kiddos.  They go above and beyond to give our children the best medical care available.  

For Jonah, we have worked with Urology, Cardiology, ENT, Pulmonology, and Endocrinology.  

For Ben, we have worked with Cardiology and Endocrinology.  

In other words, we are quite frequent flyers to this facility, but we have always had an amazingly positive experiences.  Even to the point of yesterday, having a flat tire while at Ben's appointment- the Security department was super friendly and helpful!

Working hand in hand with Children's, we also want to give a shout out to our amazing pediatrician!  He is super and always willing to check on our boys anytime we need him!

Next, as mentioned above, we had a flat tire while at our appointment at Children's yesterday.  Praise the Lord for Roadside Assistance through our auto insurance State Farm!  After notifying hospital security that I was parked illegally, I got the ok to still bring Ben to his endocrine appointment.  While in the waiting room, I contacted State Farm Roadside Assistance online.  In LESS THAN 10 MINUTES, I had a service scheduled to come to the hospital in 50 minutes to put my spare tire on.  I was able to get through Ben's appointment and then walk back out to our van where the mechanic pulled up and put my spare on in FIVE MINUTES!  So super easy and convenient and nice!  Definitely worth the money we pay for that coverage.

And last, but certainly not least, a shout out to our school!  We have said this before, but we are so blessed to have amazing teachers and staff to help our boys.  They go above and beyond to make sure our boys have the best opportunities and best learning environment.  They care about our boys beyond just their education.   

On that note, the boys teachers are doing a 4 week trial with a speech device for Jonah because they are wondering if this might be a great help for Jonah in being able to communicate better with his peers and others in the community.  We are excited to see how this might work for our Jonah.  Here is a link to the company who makes the device:

What is a speech device?

This was fun post to write!  It's always tempting to complain about what isn't working out in our life, but it's far better to think about the positives!

MY MOM IS THE BEST!

This quote describes my mom perfectly.  

She always puts her family first.  

Her love and care for us five kids, in-laws, grandchildren, and great grandchildren over the years is amazing!  Her faith and trust in Lord over the years is an inspiration!  

Thank you Mom.  I love you so much!

I am so thankful my kids have these two wonderful people in their lives.

When I was little, I wrote I wanted to be a mom someday.  It's because I admired my Mom and Grandma so much that I wanted to be just like them.

I am so thankful I get to be mom to this beautiful bunch!

So sweet- my kids sent me flowers!

Best Mother's Day gift for all of us: 

my mom came home for a visit this afternoon!

I am so happy for them!

ONLY GOD CAN DO

I will let the photos make this point:

Jonah

Small town in Wisconsin 

Kostas

Orphanage in Vilnius, Lithuania 

Wisconsin to Vilnius, Lithuania

4610 miles

Benjamin Kostas and Jonah, 

8 1/2 years old, at school

Small town in Wisconsin

IF LIFE GIVES YOU LEMONS...

Jonah reminded me of an important life lesson during our night at the hospital last night.

As mentioned in a previous post, Jonah had his thyroid removed on Tuesday.  Prior to his surgery date, Jonah was very excited about his hospital visit.  Oddly enough, Jonah has always loved interacting with doctors and nurses.  He is very familiar and comfortable with Children's Hospital because he's always treated so nicely.  So Jonah had really built up his upcoming visit to the hospital.  

While the surgery was very successful, recovery these past 2 days has been hard. Jonah was very uncomfortable after surgery and very groggy and sleepy for a long time after coming out of recovery. He needed oxygen because he wasn't taking good breaths because of being so groggy.

Then Tuesday night/early Wednesday morning, his O2 levels dropped to low 80s.  He was put on up to 3-4 liters of oxygen.  Then he started throwing up and running a 101.9 fever.  Then wheezing, very bad cough, and very labored breathing.  Suddenly our hospital room was filling up with on call surgeons, respitory therapy consults, and a portable chest X-ray.  Our little guy didn't look good.  

Discharge on Wednesday was off the table.  We would be staying a 2nd night for sure.

Not the hospital experience any of us were planning on, especially our little eternal optimist.

The doctors feel Jonah didn't clear his lungs good enough post surgery because of being so groggy that junk just sort of settled in the lungs making it hard for him to breath.  A fever can be quite common after surgery so at this point, they are not thinking Jonah has pneumonia or some other type of respitory infection. 

They felt with better breathing, getting up and walking, and regular albuterol puffs, he would get better!

And better he did!  Yesterday Jonah's fever was 99 and then down to normal.  They took him off oxygen at 10 am to see what he would do, and he was in the high 90s all day!  We took many walks and played in the playroom.  He was mostly himself besides tiring kind of easy and rather unsteady walking/moving.

From this Tuesday night

To this Wednesday!

Then during the night Wednesday, Jonah's oxygen levels while sleeping dropped to 86-89.  It was decided to put him back on oxygen at 1 liter.  Jonah fought this and kept grabbing the O2 out of his nose.  Nurses decided to tape it on his face.  Jonah got very angry and upset over this.  I think it was a combination of not liking the feeling of the O2 line in his nose, the tape on his face, and just overall frustration that nothing about this hospital visit was meeting his expectations. 

I watched him laying in his hospital bed, very upset and agitated.  Slowly he calmed down on his own. Then he just layed there, and I was thinking he was going to go back to sleep.  It was 1am after all 😊  Instead all of a sudden, in his sweet Jonah voice (although a bit hoarse right now), Jonah started "telling"/signing the nurse and I about Two Face from Batman.  In Jonah's mind, he felt the tape on his face made him look like Two Face.  From being really angry, Jonah now had imagined he could be Two Face and suddenly life was fun and exciting again!

I was so impressed by this little fellow's resiliency!  He just doesn't let life get him down.  When oxygen was the last thing we wanted him to need, he made it into a game of his favorite super hero.  

So yes, when life gives you lemons, make and ENJOY the lemonade!

I love this sweet boy with all my heart!

Just a note to end this post:  We got to come home on Thursday!  Bye Children's Hospital!

HAPPY SWEET 16 LYDIA!

Not the best timing because of Jonah having surgery today, but today is our Lydia's 16th birthday!

Lydia is a beautiful, sweet, smart and talented young lady.  We are so blessed to have her as our daughter!

We had Lydia's birthday meal on Sunday because we knew we would not all be home today.

Her sweet aunties threw her a surprise party tonight for supper!

This morning at 6am