Meeting Family We Never Knew We Had

Just before Keziah received her first expanders placed on her forehead and cheek, we were introduced to the Facebook Group: Nevus Outreach, Inc. Very quickly after joining, we were welcomed with arms wide open to a family we never knew we were missing - nevus owners and their families. This Facebook group, as well as the Giant Removal Facebook Group, has been such a support and place of comfort - a place to go to for any question or concern at all, because guaranteed someone has already dealt with it.

Often, while dealing not only with the affects of birth but also with a newborn baby with an obvious "mark", we turn to the specialists - dermatologists and surgeons. Unfortunately, there are too many horror birth stories due to the lack of knowledge from the derms and doctors:  the baby being whisked out of the room and put into isolation and the family told that their precious little one will probably not live too long.

That is why it is SO important to join up with a support group - a group filled with the real experts: the nevus owners and their families. And for the past 2.5 years, we have had the privilege of being a part of this group and have "met" so many amazing people.

So when a family wanted to see if other families were wanting to get together, we jumped at the idea! It did mean a 7.5 hour drive, but we didn't mind. We couldn't wait to actually meet some people we have come to see as family.

And so, that is what we did. Last Thursday, we dropped Lincoln off at my parents and headed down, down, down. All the way to Cincinnati, Ohio. Keziah was an absolute trooper the whole way there and back (4 days later). Not a single complaint out of this girl!

Ah! Finally! We have arrived in our room. And first things first? You just have to test out the bed:

Once we settled in, we headed to the pool. The hotel was quite a large one, but other than one other family, I believe we were the only ones there! Yay! Pool to ourselves!

The other reason we didn't mind to drive 7.5 hours is because that meant we could meet up with a surgeon that did all of Keziah's fills the first time around: Dr. Sitzman. He was working under Dr. Zuker, did all the fills, but then his internship/fellowship was up just before Keziah's first removal surgery. So he never got to see the results of his fillings until this trip - 2.5 years later! He took an hour+ out of his day to spend with us, which we so appreciated!

But our visit to the Cincinnati's Children's Hospital was two-fold. We took the elevators up to meet one of the bravest little boys we have ever known. Meet Christian and his ever-strong mama, Tanya. Christian was also born with the same birthmark as Kez, except larger and in a different area. Unfortunately, he was diagnosed with melanoma (which is a slight risk in having a nevus) at 2.5 months old, recovered, and then again this past spring. While his story is absolutely heart-breaking, what mends the heart back together is knowing Who Tanya and little Christian put their trust in: our God.

Keziah was so good with Christian, making him laugh and smile despite the pain he is in. I know Keziah has always said she would like to be a teacher when she grows up but in these pictures I see her being a Child Life Specialist :o)

After an emotional visit, yet strengthened by finally meeting (as well as by reading some of the Bible verses that are all over his room), we quickly met another little tyke, Dylan, who had just had expanders placed for removal of his nevus. We didn't stay too long as he was recovering but it was nice to meet this handsome boy as well. We then left to meet up with some more families at the Newport Aquarium, in Kentucky.

That is when we met up with Addyson and her family, as well as Sophia and her family. All three girls are around the same age and all of them have a nevus. They hit it off right away! In fact, about 10 minutes after meeting, Addyson and Keziah were already holding hands :o)

We saw some pretty amazing sea creatures!

 ^^ two albino alligators!

This poor tortoise - looks like things got out of control "in the bedroom". He found himself in a position that made him lose his dignity by the second. A biologist had to come and rescue him. I wonder if tortoises blush.....:o)

Saturday was a fun-filled day at the Waterpark, where we met up with a few more nevus owners and their families. I have pictures, but all of them are blurry and somewhat foggy due to how hot it was in there. Oh well! It left lots of time to enjoy the waterslides - which we did!

Later that afternoon, we headed to Walmart to pick up some groceries for the ride home on Sunday. Not only do the prices of things shock us here, so does what is actually sold in regular stores!! A whole isle of alcohol! Right there in Walmart!

And if we weren't shocked enough by how cheap the groceries were, we were stunned when we had to fill up for gas: $3.15 a gallon. A gallon!!! We pay $5.20 a gallon up here!

Funny story - Saturday night was going to be our last night altogether, and so we wanted to meet up at a restaurant and eat dinner together. We forgot that we were with Americans (who have accents :o), and so when we were told where to go, we looked everywhere for it: Red Rabbit. It wasn't until we came upon a Red Robin that we realized that is what we were supposed to be looking for! We forgot that all the "o's" are pronounced as an "a" sound ;)

The girls were thrilled to be have a table all to themselves!

Who knew that even at this age, a girl can't go to the bathroom by herself?!?!

Keziah with Sophia

All the proud nevus owners!!

And their families (one family is missing - we met them at the waterpark but then left before I could take a picture with them).

Sunday came - the day to head home. On the way, we stopped and met with one other family. This family just welcomed a beautiful baby girl into the family just 6 days earlier. She was born with a nevus as well, so it was so great to meet with them. Not only were we able to spend some time answering questions, I was spoiled in being able to hold such a precious little blessing!!

Back at home, we are proud to wear our "We love Christian" "We hate cancer" shirt, as we daily pray for Christian and his family.

Overall this trip was a.maz.ing. We met some wonderful families and made some memories. It was so nice to spend this time also with our darling Keziah. If it wasn't for her, we would not be a part of the nevus family.

We are so thankful for the relationships that have formed over the past two plus years, and we look forward to being a source of encouragement to new nevus families, as well as continuing in gaining knowledge from others' experiences with a nevus.