Jacob and I traveled almost literally all the way to across the country this month to meet 16 year old Connor, who also has Carpenter Syndrome. Like them, we had never met another person with the condition.
We arrived at Washington-Dulles airport in Virginia at around 5:30 AM on July 20th. We picked up our rental car, a brand new Nissan Frontier pickup, and were on our way. Bad timing, I know, but it occurred to me at that point that I probably should have picked up a road map or two and checked local traffic rules! Oh well... too late at that point. Luckily, with a bit of common sense, an excellent driving record, GPS, and Jacob with me, we were fine! We got turned around a couple of times as we neared our destination, and then stopped for breakfast at Bob Evans diner, but eventually found our way.
We spent a good part of 6 days with Connor, his mom, dad, and various other family members and friends. We attended two birthday parties for him. At the second of which a photographer and reporter from their local newspaper were putting together a great article. We went to church with them in an amazing old building that had been used as a hospital during the civil war. After visiting the National Aquarium in Baltimore, MD we ate at Bubba Gump and took pictures with a giant Optimus Prime at the Ripley's Believe It or Not museum. On the way to the National Zoo in Washington DC Jacob dropped his IPod! We stopped at the MARC security booth on the way back out and to our utter disbelief, the guard had found it, remembered seeing Jacob with it and gave it back! We decided to visit the Smithsonian Air and Space Museum in Chantilly VA, instead of the White House. There we saw our first IMAX movie, the space shuttle Discovery, Enola Gay, a SR71 Blackbird, and so many other amazing things. All that with some miniature golf, multiple shared meals, lots of visiting, and showing of baby pictures in between.
Jacob had never flown before and was really excited about it. He loved that huge thrust of power at takeoff, best. He has the most amazing sense of direction (which is good, since I don't seem to have any). This was something Connor's mother and I both got a kick out of because Connor is also a great navigator, and like me, his mother is easily lost! The boys spent much of their time together playing on their IPods and watching movies, with an occasional tickle fight or wrestling match over the TV remote breaking out.
Finally, we had to say goodbye and headed back to our motel to get ready for a very early flight. We were exhausted when we landed at the Sacramento International Airport, where we were met by daddy and the other kids, but the trip was one amazing experience after another!
We hope to get together again next year, maybe traveling to the mid-west to meet another child with CS.
As much as I really intended to keep up on this blog better than I have, it just hasn't worked out that way! With homeschooling a houseful of kids (the oldest of which has behavioral issues, Jacob with his medical issues, the youngest has legal issues, and the other two have ADHD!), a big, old, house and semi self-sustaining farm to take care of, and several old car restoration projects, there just doesn't seem to be any time to dedicate to this website and blog, as much fun as it has been!
I do find myself with a little more free time these days, though, as we now have a chore system set up! I entered all of the most important things I want/need done every day (make beds, laundry, put clothes away, water plants/trees, chicken scraps, feed/water pets, meal prep, garbage, tidy bedroom, vacuum, set/wipe table, dishes, etc., and my personal favorite... 1/2 hour of homework!) onto a free, online, Bingo card maker, which randomly placed each chore in a different location on each card, which I printed about 50 of, to have a different one randomly assigned each kid, every day! They get to choose which Bingo they want to try for on their card (by doing those chores), as long as it includes the MAKE BED square! Each Bingo gets them 1/2 hour (supervised, of course,) use of the of computer, TV, WII, Nintendo, Ipod, etc., with only 1 Bingo allowed on the days we have to go out, and two allowed on the days we will be staying home. They all love the fact that they have some control over which chores they will to do everyday, which keeps it interesting. It's pretty funny watching how hard they work at coordinating their chores like tidy bedroom with vacuum, or laundry with put clothes away (with each pair being counted as TWO chores!), and avoiding the unpleasant ones like clean the bathroom and pooper scooper! We are always tickled when we hear something like our 11 year old son saying "Thanks mom, for letting me clean your bathroom!" After the other kids had already cleaned the other two! Now, that one just makes me all sorts of happy!!
And speaking of amusing, we had a pretty odd situation here a couple of days ago. Our house sits on a hill and the master bedroom is on the 2nd floor, facing our neighbor's property, so we have a pretty good view of what goes on over there. Well, that house, which sits on 6 acres at the end of a private road, has been empty for a couple of months now, but there's still been a fair amount of traffic in and out. My husband had gone to take a mid day rest and had only been gone a few minutes when he came trotting back down the hall asking for a pencil and paper. After nearly 32 years of marriage, I could tell he had something on his mind, so I knew better than to even ask what was up, at that point, so he wouldn't lose his train of thought, whatever that was! He got his shoes on and headed out the door, hopping into his truck and taking off! He got back about 20 minutes later, saying that he had heard a lot of racket and looked out the window to see two men unceremoniously unloading a pickup and trailer full of trash, next door! He thought they must have seen him when they jumped back into the truck and took off, with only half of it dumped. He followed their trail of trash, catching up to them about 6 miles away, took down their license plate number and description of the vehicle, before passing and forcing them to stop. He got out and told them that they had two choices... to get their you-know-what's back there and clean up their mess, or he was calling the Sheriff's office with their information! After a few lame excuses and a little grumbling, he followed them back in, where they cleaned it all up! The kids were all in AWE of their dad's bravery and insight!!
I'm not much into suspense or drama, so here's a quick run-down of Jacob's current state: He has had a total of 10 surgeries, so far, but is scheduled for oral surgery in a few days, to remove some of those pesky baby teeth that just won't come out on their own. He has an artificial lens in one eye but with glasses his vision is near normal, and was recently diagnosed with mild scoliosis. In June, 2012, at 12 years + 1 month, he was in about the 85th percentile for height :) and about 30 lbs above the 95th percentile for weight :(. Mild developmental delays plague him in the areas of reading and language arts, but he is fairly strong in math, is working at grade level in all subjects with some modifications, and LOVES all things techie! Several of his classes are online this year, which he is really enjoying (and doing incredibly well at).
I am also very proud to say that chivalry lives on in my son! He always rushes ahead to open doors for me, and is happy to stand there as long as necessary for everyone else to pass, too. He is the first to volunteer for anything that needs to be done at church and is now working in the nursery with the toddlers! He is loving and generous, and one of the most beautiful beings God has ever created, in my absolutely unbiased opinion! :)
Jacob was born in a small northern California hospital, in 2000, but was transferred shortly thereafter to UC Davis Medical Center in Sacramento. He spent 13 days there but unlike the experience many families have, because of the big city staffing, he had a positive diagnosis within days. Although many of the manifestations were quite obvious, numerous examinations and tests were performed, finding among other things, amblyopia or a lazy eye (like Paris Hilton), undescended testes, a horseshoe kidney (like Mel Gibson) which has never given him any trouble, extra fingers and toes, many of which were webbed, a minor heart defect, and craniosynostosis (no "soft spots", like baseball player Jorge Posada's son).
Between the Carpenter Syndrome and other unrelated issues, his prognosis for any sort of productive life, was bleak.
As my first blog and starting nearly 12 years late for a running monolog of life with Jacob, I'll just start with this... this child is my pride and joy!
One thing that has always struck me as a bit.... hmmm... unexpected, is that going anywhere with Jacob, especially when he was little, was like traveling with a rock star! No one ever, EVER, forgets his face, no matter how much time has passed since they've seen him, or how brief their contact. When he was about 8 we met a woman at a homeschool playgroup who said she knew Jacob from somewhere. We brainstormed for about an hour trying to figure out all of the people, places, and things we had in common, before it occurred to her where she had seen him. It turned out that she had been at the county courthouse at the same time as we had been... a couple of months before his third birthday! She even had pics with him in the background to prove it!!
Around the same time we were on vacation in another state when a woman who had worked at his school years before, but whom neither my husband or I knew, recognized him and stopped us to say "hi"! Complete strangers still approach on occasion asking about his condition or his many surgical scars, though it should be noted that he now has a full head of hair and doesn't mind keeping his clothing on these days, so those scars aren't nearly as visible as they once were!