Chapter Three: Friday

That's right... serious me in charge :)

Eva going down the
slide in PlayScape

 

Friday was finally here and I knew we were going to be busy with a capital B.  I had all of my girls excused from school and we left from home just before eight to head to the hotel.  It seemed that everyone was either in the lobby or eating breakfast.  I was starting to collect money for admissions to the Children's Museum when it seemed that I had a situation in place of "organized chaos".  We left out about five minutes late getting there but all was good.  When we arrived everyone's attention was on Bumblebee, the largest Transformer in Indiana.  I got all the tickets taken care of and released everyone to enjoy the museum.  They played with dinosaurs, went down slides, rode a carrousel, served ice cream, learned about Ryan White and Ruby Bridges, visited Egypt, Looked at beautiful glass sculpture within the middle of the museum, learned about a humongous water clock, made boats, played in water, became a temporary archeologist, ate a pretty decent but expensive lunch, and then did it again.  It was extremely gratifying to see so many C17 kids enjoying every minute.  We left the museum to head home for a much needed nap for Eva and was going to meet up with everyone at Hollyhock Hill for dinner.

Eva and Austin, she did not want to sit
with her mom or dad, just took the
Needham's space :)

She obviously
loves the camera

Scott

We arrived for our six o'clock, dinner.  I walked into the restaurant and Dean met me at the doorway.  He said they were all ready for us.  I looked around at the two adjoining rooms and saw six very long banquet tables and then just up two stairs into another room was two more long tables set.  I was very surprised and asked him if he had to many place settings.  He said "No, you said 105 guests".  Then, it hit me, like a brick.  Looking at all these chairs, folded napkins, shiny flatware, all of these families were here and there were so many!  It was now becoming reality.  I went back outside and took a deep breath and stood there at the entrance, welcoming everyone again.    Fried chicken, green beans, potatoes, salad, cottage cheese, freshly squeezed tomato juice, and of course dessert joined with over one hundred C17 families: Priceless.   After our dinner was just about over, I made a few announcements for tomorrow.  I also introduced UuBee (aka Uncle Brian) to everyone in regards to the survey.  Then somebody (JB) threw in his two sense to give an 'ataboy to me for all the work.  It was surely paying off and will only be the icing on the cake tomorrow, at the largest, 4th Annual, C17 Gathering.
To Be Continued...

Gathering: Chapter Two

Eva and Robert just as focused on
Dr. Koolen as their parents

So we will continue with Thursday afternoon.  I had just picked up Dr. Koolen from the airport and we took him back to the house.  I had asked two different families to come to the house to meet with Dr. Koolen that afternoon for an informal discussion time.  When we all were together, I was noticing that he was so genuine, patient and obviously knowledgeable to any  question that was asked.  His demeanor was so softly spoken yet had everyone's ears of complete undivided attention.  He talked about the differences between KANSL-1 gene, mutations, and deletions.  I found out that children can have only one of these when it comes to a specific diagnosis.  For example, if you have the C17 deletion, you can not also have the KANSL-1 as well.  We all also discussed parental genetic testing.  I was told by our genetic doctor that either Scott or I must be a carrier of this "deformed" gene and that it would be beneficial to do a blood test to see who the carrier was as well as the other girls to make certain for their future family.  We opted not to do the testing and knew that when the girls were old enough to have them be tested.  Dr. Koolen completely trumped that by saying that neither one of us could be a carrier.  It was just a "chance" that this chromosome had the deletion.  He also stated that there is no way possible that the other girls would be a carrier and there is no need to get testing for them.  Here was another wow moment for me that day: It was just before four and the older two were coming into the front door.  Elizabeth entered first.  Dr. Koolen, turned and looked to see who was coming into the door and from his mid-stride genetic sentence he was in stood up, walked toward her, held his hand out and said "Hello Elizabeth, I am Dr. Koolen. It is wonderful to finally meet you in person."  Then Victoria walks in behind her and he also held his hand out and said after she was closed the door, "Victoria, your just as beautiful in person as your are in your pictures, it is so nice to meet you."  Not only did my heart jump a beat but now he had reached my respect for him on a much higher level.  Wow.  Just, Wow.  Our other families left around six and our sitter was here so that we could take Dr. Koolen out for dinner.  He decided on Italian.  Yummy of course. 
Now we're at dinner and I had to just put this out there so I said "OK, enough shop talk, lets just get to know each other".  So, that is what we did.  No medical discussions what so ever.  We learned all about the Netherlands, the size, the culture, the laws of course, more of a compare/contrast between the two countries.  We also found out a little about his family, his hobbies, and of course his favorite is going on holidays.  On thing that sticks with me is that he has never been to Australia.  Maybe one Australian Gathering we could promote it large enough for many families to attend, including Dr. Koolen and his staff.  Dreaming big but it just might happen. 
After dinner we took him to the hotel.  We arrived, walked into the doors and about 30 people from our group was standing in the lobby area.  Some were in awe, others cried, many hugs were exchanged, and finally after introductions and an hour of socializing, Scott and I had to get back to our girls and relieve our sitter.  I know deep down I wanted to stay all night, just get to know so many more families, their children, the siblings.  Find out how parallel our lives really are but, we left, with sore cheeks from laughing and smiling so much and our eyes were completely teared out.  I took the sitter home and went to bed.  Scott and I could not stop talking but we finally gave up.  We had so much adrenaline for what was coming for tomorrow.  Who were we going to meet? How many new families could I introduce to each other? 
To Be Continued...

Much Needed Gathering Post

Well, we survived.  Our Gathering weekend was two weeks ago and I have completely neglected posting updates.  I have to admit, our family was extremely busy in our preparation.  It really started back in February when I volunteered to host.  I signed contracts, talked with many managers, general managers and sales persons.  I made some great decisions with some venues and not the so great with others, but I am human. :) 

Drag Car at DSR

On Wednesday, I had made a special meeting with the Glatt family.  We met  at ORP (O'Reilly Raceway Park).  We were given a "back of the house" tour of the Park, drag strip, and racetrack.  I am someone that lives in one of the biggest racing capitals of the world and I have no interest in cars but the Park was really exciting.  Craig, our tourguide, showed us all the specific details of each track, what everything is, why it is, and where it all happens.  The Mr. Glatt was very excited and Christopher loved the tractor.  It was exhilarating watching their son's excitement.  After we finished our tour, we came to pick up Eva and Abigail and then I surprised everyone with an in house tour of Don Schumacher Racing Team's warehouse.  We arrived and Amy, our tour guide, took us to a behind the scenes of the cars.  There were so many cars of different stages of life there, from just the frames, just engines, the fiberglass cases, a brake shop, mechanic trailers, pink cars, yellow cars, stacks of tires, mufflers hanging from the walls, and so much more in at least 30,000 square feet of space.  It was almost overwhelming.  When we were leaving, there was two drag cars in the lobby that I just overlooked.  It was really something.  We left the warehouse and headed to the hotels.  I had a few more welcome bags to deliver and wanted to make sure the hotels were ready for arrivals.  That night, we met at Stone Creek Dining Company for the early families.  There were eight families that joined us.  It was just amazing to have already eight families!  We chatted, cried, hugged and talked some more, oh and dinner was awesome. 

Eva and Dr. Koolen

Feeling a bit guilty without the girls but,
we had a great time!

Thursday was waterpark day. Scott and I were feeling guilty because we were kid free but we were able to enjoy the other families that were there.  Because the hotel's waterpark was closed, we went to Monon Park.  I have to admit, it was far better than what the hotel could offer.  There was this really cool surf wave.  I sat there watching so many of our Kool Kids surf.  Just amazing!  I left about just after twelve to pick up Dr. Koolen from the airport.  Just before he came through the security gate, I noticed a cute little boy in a stroller that looked familiar.  Sure enough, it was Ox!  I was thrilled to meet the Cooper family and felt like a Gathering welcome crew.  I didn't need to do say much to convince them to wait on Dr. Koolen's arrival so we all waited about 5 minutes and there he was.  He pointed out at me, gave introductions, and went for luggage.  This moment for me was surreal.  It was all happening.  I had a moment and I was loving every minute of it and then knowing that it was only going to get better. 
To be continued...

First day of school

Watch out kids, Eva is now your classmate!  We started our morning with the normal milk and toast and then we walked out of the house to catch the bus and sure enough, just like last year, it was early.  So of course, everyone on the blocked panicked only because the regular elementary bus comes 15 later than the pre-k bus.  When we approached the bus, Eva was in a bit of shock.  She whined and pulled a small tantrum because that big yellow bus was loud, muffley, and humongous.  I finally scooped her up and put her in her seat, a three point harness built into the bus seats.  Abigail on the other hand was buckled in before anybody noticed.


Later in the morning, I received a message from our PT that just so happens works for our school district stating that she loves the gross motor room, go figure.

After a few more updates, she was getting off the bus on her own. After her last big step onto the pavement, she turned around, looked at the driver and the assistant and signed thank you and said bye bye. It was adorable.
Success for yet another Ralph girl starting her long trip on the education highway.

Our trip to St. Louis

What a wonderful trip we made. Our drive was somewhat flawless. Eva was a little uneasy when she was thirsty or even hungry but other than that, it was smooth.

We arrived early at our lunch location and decided to go to a nearby bookstore. My little Eva was so enthusiastic about being in a bookstore that we decided to camp out on the floor for about twenty minutes while she was showing me books.  

We then went across the street to meet Keith for lunch.  After our delicious pizza, I signed paperwork to be filed for the IRS. A huge accomplishment. Then my friend Bob showed up. He seemed very engaged with learning about Eva, her challenges, her success stories, her health issues, everything normal that another Koolen parent would want to know. 

I then went to my cousins house and visited with them for a few hours.  We played a much needed catch up while i was attemping to protect her beautiful home from my rambunctious three year old. Oh and if you haven't noticed Debbie, the chocolate on your couch is from our visit...I tried my best. 



Eva and Aggie

After that, we then met Bob and went to dinner with his family.  I was so excited to meet his very beautiful and gracious family.  Their daughter was to adorable and so much reminded me of Eva when she was younger.  Her facial expressions, her eyes, her shyness around new people. I really loved how real the boys were with her. They don't seem to hold back their energy for anyone. 

All in all, I know that going on our trip had far more meaning to me than just the drive.  My hopes that our relationship will grow even stronger and on a more personal level which obviously shows far more respect than just letters on a screen or a voice over the phone.  

Thank you Bob and Mary for your wonderful hospitality and as I had said many if times in person and in writing, you have such a beautiful family. I can only hope we can spend more time together in the future.