Inclusion and the Dignity of Risk, Summer Lovin,' Part 2

continued from Part 1

Over the summer I put the 5” binder in the closet.  We celebrated Sophie’s 5^th birthday on the 4^th of July with our 2^nd annual parade watching party.  (see 2011 party HERE) Friends joined us on a sweltering morning to enjoy a sangria fountain, a punch fountain for the kids, good old fashioned American patriotism, and enormous rented bounce house.  That afternoon Mark left on British Airways with a layover in London, (a treasonous way to celebrate Independence Day) on his way to teach a summer abroad course in Prague.  I joined him for 10 days where we also visited Budapest and found a diamond ring on the ground, seriously.  I arrived on our 11^th wedding anniversary (Bastille Day) with a layover in Paris, which I thought was quite fitting.  The kids stayed home with Grandma Paula and soaked up her love. 

This summer we camped in the back yard, went to the beach, worked on potty training and slowly began prepping for the big K.  Sophie would ride the same bus to and from school as her big brother and all of the other kids in the neighborhood.  She would have a seat similar to a car seat but designed for a bus for her safety, but no bus aid would be present.  I talked with Alexander about being a good big brother, sitting with her and keeping her company.  When the Director of Transportation Services called to offer her an alternative bus with all of the other kids with disabilities, I thanked him and gently gave him his first lesson on inclusion.  I bought school supplies, including an enormous wheeled back pack with her initials.  I spoke with the principal a few times and was a reference for the PCA that Sophie had in preschool.  Miss A is an over qualified kind, wonderful gift. Sophie’s new school agreed with me because they hired her.  Knowing that Sophie would have Miss A as she joined the ranks of the big kids in elementary school was a source of strength and relief for us.

Our school year starts after Labor Day and goes through mid-June, which we really enjoy.  Summer stretched on as I tried to prepare my heart for letting go a little more.  The IEP, placement, and staff were lined up and it was time for me to allow her the dignity of taking a risk on inclusion.  This thrilled and scared me at the same time.

to be continued

October Down syndrome

Weekend Blog Hop

Welcome to the October Down syndrome Weekend Blog Hop, in which we all try to raise awareness regarding Down syndrome, connect the Down syndrome blogging community and to inspire our blogging selves with the our collective awesomeness! 

 

Russia's Forgotten Children - ROOF

Years ago when Mark was studying at Georgetown under the brilliant Dr. Murray Feshbach, I first learned of the conditions of the Russian orphanage system. A story on 60 Minutes stuck in my heart and mind that featured Murray who spoke about Russian demographics and orphanages. When Mark and I began planning a trip to Russia in 2003, I knew I wanted to do...something. I began researching on the internet and found Russian Orphan Opportunity Fund - ROOF.

After a couple of hours of devouring their website, I discovered that their US office was located in Racine, WI. We were living in Madison, WI at the time and I just about fell out of my chair. It seemed Divine Providence that we would find them and get involved. We had our first experience raising funds from friends and family to help support the work of ROOF at Podol'sk Orphanage. We were in contact with Karen and Peter Jansson (parents to Georgia) and met with them to turn over the money raised from our generous friends, co-workers, and family. It was enough to support programming in Podol'sk for 3 months.

Though we have remained supportive of ROOF through the years, it is Mark and I who have most benefited from our relationship. Our lives have been forever changed and inspired by the staff, volunteers and the orphans we've met. During a research trip to Russia, Mark lived with the family that co-founded ROOF and we remain in touch with Andrew and Georgia.

I could go on and on, but their website has a wealth of information, including a brand new brochure called Russia's Forgotten Children. I strongly encourage you to check out their website and brochure. Click the image below for the brochure or visit http://www.roofnet.org/forgotten


embedded video from our trips to ROOF in Moscow below. if you do not see the video, refresh the page or click HERE

Make video montages at www.OneTrueMedia.com

Thanksgiving Trip in One Minute or Less

We drove a long way. My laptop died as soon as we rolled into town (not good). Then on Thursday at lunch we ate a lot at Mark's parent's house. It was good.

A few hours later we went to my cousin Michelle's house. We ate a lot. It was good.

That night Mark and Kent went gambling after the kids went to bed. He did not return with any winnings. At least it was good that he got out.

Friday morning me and my BFF Darcy went toy shopping (with Helena in tow) and then to lunch and Vicky's (without Helena). Mark got a new suit for his job interview. That night the extended family (Mark's dad's side) all began pouring into town. We all congregated at his Aunt Mary's house. They noticed that Mark and I have lost weight. After the kids went to bed, I headed out with Darcy. It was good. (no pics)

Saturday there was lots more hanging out with family and eating, and eating, and shopping. Mark's uncle Bill fixed my computer and I got into trouble for having too much stuff on my desktop (which I had no idea was a bad thing). I saw my grandpa in the nursing home. We exchanged Christmas gifts with Mark's brothers. Alexander really, really liked his gift.


Then we headed back to Mark's Aunt Mary's house for Thanksmas. We ate a lot. Gifts were exchanged in a white elephant kind of way. It was good. (no pics)

Sunday afternoon we headed to my baby sister Kate's new house. We ate a lot. At my request, we all had our Slankets that were given to us by my parents for Christmas last year. Slankets and Snuggies are goofy. They make us feel as if we're in a Slanket cult. The men all tried to get out of taking pictures. Unfortunately my dad was the only guy not to make it out. We took goofy pictures in our slankets for no other reason than for fun. It was good.

We drove a long way and then slept in our own beds and it was good.

click the pictures to enlarge

Great American Pit Stop

or Good Bye Mt. Zubba Bubba. It's been fun!

On our journey home yesterday we made an unusual (but planned pit stop). Having lived in WI (booooo Brett's a Jet Favre) for many years, we are Brewers fans. They were playing in Cincinnati against the Reds in the Great American Ball Park yesterday at 12:35 and we just so happened to be driving through there then (nice grammar, I know). So, we stopped, got a couple of cheap nose bleed seats (but still a good view of the field), the requisite popcorn, hot dogs, ice water and took our places. At one point a man with Down syndrome passed us by and I mentioned this to Mark. His reply was, 'ya, they all have Ds.' I looked again and the man was with a few friends who all had Ds. A few minutes later I looked up and over a few rows, and lo and behold, there were even more people with Ds. We bought our tickets at the gate but managed to sit with our people. How cool and unplanned!

I say we were in our seats for 40 minutes. Mark says 20. It was long enough to eat the dogs and slather everyone in spf 50 sunscreen. (which I should have done in the car). Although I had on a Brewers shirt, Soph was in red and white and her skin was the bright tomato red of her outfit. Her lethargy and coloring freaked me out so we boot scooted to the first aid station. Despite our Brewer apparel, they let us in. We all cooled off in the air conditioning and watched the game on a 14 inch screen. After a little while the boys took off while Soph rested. Eventually her skin color returned to normal and after a nap she woke up with her usual personality and a decent temp. Whew. We caught the last 10 minutes of the game and headed back to the car. Here's what the temp gage in the car read:

If there had been even a slight breeze or 1 spot with shade, I think we would have been ok. It was just too hot with that direct sun. We did have a little fun though. Alexander and Mark found the mister thing and cooled off. Not sure how much of the actual game we watched. But, the Brewers won 6-3 and Soph was OK. That's all that matters in the end.

King Smellsalot

Today we drove to our family's summer residence in Asheville, NC. It was built in 1895, has 250 rooms, and thousands of acres. More about the castle can be found here.

When we arrived, Alexander announced that there would be a purple dragon and the king was named King Smellsalot. I wonder what George Vanderbilt would think about that?

After a long day, our limo arrived to take us on a tour of the grounds and then we headed back to our real summer home on Mt. Zubba Bubba at Papa and Grandma Paula's.

Mt. Zubba Bubba Day 1, or Lions & Tigers & Bears, Oh My

Day 1 on vacation at Mark's folks new home in Tennessee.

In the morning on Mount Zubba Bubba (the name Alexander gave to the mountain his grandparents live on) the fog is thick. Basically, this shot is in the clouds off of the back porch.

Mark stayed at home to work and Papa and Grandma Paula treated us to the Knoxville Zoo.

It was HOT. And I do mean HOT! Ice cream sandwiches and raspberry slushies that stained my mouth blue saved us all.

By the end of the day, I wanted to be carried too.

Visit to the 'loo

RETRO POST:

It was a whirl wind tour of Iowa. We stayed with my baby sis Kate (thanks again) during our time in Waterloo. Days were filled with family, college friends (or in the case of my BFF Darcy - middle schools friends), lots of cook outs, birthday parties and swimming. Good times.

Home Messy Home

There's nothing like sleeping in your own bed after being out of town. We got home very late last night after spending more than a week in good ole Iowa.

The trip in summary:
Waterloo: 5 nights. Urbandale: 1 night. Ankeney: 2 nights. Gas $ (don't want to think about that). We stayed with family, saw old friends and finally met new ones in person (Isabelle, Brigette, & Josie)! There were; 2 birthday parties (baked 40 cup cakes), 4 cook outs, gallons of sunscreen, mosquitos the size of Cessnas, a trip to Parkersburg and New Hartford to see the tornado damage, a trip to Iowa City/Coralville to visit with our college friend Amy and her gorgeous daughter Isabelle~who is already 2, a trip to Train Land train museum in Colfax, visit to the Cedar River (sand bags in Cedar Falls, broken train bridge in Waterloo), 2 malls, 2 pools, 1 trampoline (lots of bruises on Alexander), 3 serious potty/diaper - car seat issues (Alexander had 2, Sophie just 1). Good thing they are both easy seats to clean, yuck!, 1 set of lost keys (car and house), 2 bonfires, many s'mores, mojitos, and a bazillion pictures taken.

Today we have to unpack, clean up the cat messes (clumps of fur all over the carpet and a hairball on MY Bed/Blanket that I was too tired to do more than take off the bed last night). My Google Reader is Full. Yes, Iowa does have internet access so stop making jokes about not having electricity. They got electricity and running water at least 50 years ago people! Need to reschedule Sophie's ST and PT today as both kids have colds. Oh, and we're leaving again in a week for Tennessee.

More pictures to come. In the meantime, here is what the sky in Iowa looked like as we approached Waterloo. Ya, I took car photos of clouds. What?

Avenue of the Saints

1. Sophia's biopsy for Hirschprung's disease was negative!
(her new diet with more fruit, Yo Baby yogurt, and no bananas is working wonders!)
2. Sophia had surgery on her eyes today. (both eyes - tear duct probe, left eye - Strabismus muscle surgery) We are finally at home, resting.

We spent the weekend at a Bed and Breakfast in the Amana Colonies (Middle Amana) Iowa in celebration of M's little brother's graduation from the University of Iowa. After no internet access for days, and a huge change of plans, Sophie and I drove from IA City to St. Louis on Sunday by ourselves {on the Avenue of the Saints} and stayed overnight in the Parkview Hotel. As her surgery was in the morning we set our alarm and woke up in the middle of the night for a sweet potato picnic (as she was not allowed to eat after 1:30 AM). This morning RK and Braska Bear met us at St. Louis Children's Hospital and spent the day being our cheerleaders/gopher/chauffeur. They are staying with us for a few days, so its turned into a slumber party! We are blessed with wonderful friends. According to the docs the surgery went well. We won't know for 3 months if the Strabismus surgery was a success and we return in a week or so for a follow up appointment.

That Toddlin Town

Thursday we drove to Chicago for the BEST date night ever. We stayed at the Marriot Renaissance which was just across the street from the Chicago Theatre where M and I had tickets to see Eddie Izzard. It was a swank joint, the nicest place we've been as a family. It had a little something for everyone. M's mom joined us on the trip as our sitter. We all enjoyed a dip in the 4th floor pool (Sophie's first swim & she loved it), tangerine smoothies, & very nice digs on the 13th floor, plus it overlooked the El. The window in our room was huge and Alexander spent much of his time standing in it with his forehead pressed to the glass looking down on the trains. We were so close to the theatre that M and I didn't leave our room until 10 minutes before showtime. Eddie was amazing, of course.
We wrapped the night up near by at the Emerald Loop.
Best date night ever!

Meet Me in St. Louis Part 2

St. Louis Children's Hospital is really an amazing place. From the time you walk in the doors you are greeted with smiles. The security guard asks if he can help you find your way. Everyone is patient and they all seem to really care about the children and their families. Everywhere you look there are things to help take your mind off of the reason for your visit. On the outside of the building, there is a giant metal down spout shaped like an elephant's head whose trunk whisks the rain water away. The awning is a blue butterfly. Inside there are fish tanks, a magical ball machine, and colorful paintings on the walls, all done with the utmost attention to detail. A child's voice announces each floor in the elevators. Alexander's favorite place is the 2nd floor hallway where large model train tracks are hoisted around the perimeter of the ceiling encased in plexi glass. He's spent quite a bit of time there already chasing the 3 sets of trains that chug above his head.

On our first visit to Children's we saw 3 doctors and one therapist. Our time was spent in colorful office spaces and waiting rooms. The HD biopsy, however was a little different. For this visit Sophie was admitted and was fitted with a wrist band. We all needed name badges (Sophie's Mom, Sophie's Dad, Sophie's Brother). I expected to be taken into an office like the others we had been in. As Nurse Charlie escorted us, my heart stopped as a very, very premature baby was wheeled by in an incubator. My breath actually caught in my throat and I found myself choking up. I hadn't expected to see anything like that. I think I actually stopped walking for a second. Charlie gently touched my shoulder and whispered, "There but for the grace of God. Ok Mom, take a big breath in...now let it out. You've been there before haven't you?" Now Sophie wasn't that small when she was born, but she was in an incubator, naked, hooked up to tubes and beeping machines that look like fish finders.

To get to our room we passed by a busy nurses station (just like in our NICU) and saw lots of other children in beds with tubes and parents with worried looks and beeping fish finders (just like our NICU). I was surprised to feel so off kilter. It was a relief to get into our room and shut the door.

Nurse Charlie was lovely. She took her time explaining the procedure. She asked if we had any questions and let Sophie and I examine the instrument that they would be using to do the HD biopsy.

It looks complicated and scary, but only the silver part is inserted. The syringe-like part gets pulled back to create the suction and the trigger is pulled snipping off a small piece of tissue that has been sucked into the side of the silver part (hence the name, rectal suction biopsy).

Sophie's doctor was Australian and had a lovely accent and bedside manner. He took 3 samples and was done in a matter of moments. As the tissue is taken from an area that doesn't have pain receptors, Sophie barley fussed at all. We'll get the results in 7-10 days.

That night for dinner we visited Blueberry Hill in the Loop. M was in heaven as they had his favorite childhood pinball game "the Twilight Zone" AND Fat Tire on tap.
Alexander made lollipops out of cheddar cheese balls and then started eating the rest of his dinner with a toothpick.

On the way back to the car we popped into Vintage Vinyl Records and stepped back in time. M and I met in college while working for an independent record store. We both thought these stores had gone the way of the dinosaur and were so happy to find this place. As we perused the CDs encased in plastic shucks (those darn things broke many a fingernail back in the day) and records (as in actual vinyl - the only real way to listen to music) we were near giddy. The clerks with scenester clothes and bored expressions made me smile. There was even a live "performance" of local rap artist Ruka Puff promoting a mixed tape of St. Louis rappers. It was quite loud and the kids looked confused as to why we would be there. We figured a few minutes wouldn't do any real hearing damage. The best part was when M discovered a cash of Blowfly CDs. It wasn't just that they had at least 10 copies that cracked us up, but that they were filed next to Kids Corner CDs. {For those who are unaware, Blowfly's bio reads, "Before there was Kool Keith, Old Dirty Bastard or 2 Live Crew - before there was hip hop, for that matter - there was Blowfly, performing X-rated songs with a funky groove." I can't even list titles of his songs here. Goggle him, you'll see.} Only an independent store like this and the one we worked at stock this type of... art?

Alexander got a special treat as we came upon an old trolley car nearby which promptly became his favorite. M has decided that it would be amazing to get a job at Wash U just so he could shop at Vintage and stop by Blueberry Hill for the beer and games.

Then today was Sophie's pre-op appointment with opthomology.

Marlo retested her eyes and its true, her left eye is turning in a bit more than during our last visit (I thought so and should have trusted my Momologist instincts). But, she got even better measurements this time and we will proceed with Strabismus surgery on her left eye and nasal lacrimal tear duct surgery on both eyes on May 19th.

All things considered, it was not a bad trip.

Random Information

Tomorrow is Sophie's biopsy for Hirschprung's disease at St. Louis Children's Hospital. We're staying the night as she has her pre-surgery appointment for Strabismus and tear duct surgeries (scheduled for 5/19) with the opthomologist on Friday. Prayers welcomed, updates forthcoming.

The credit union finally reimbursed us the funds that were "withdrawn" in London. Bout time.

Today Sophie had her 1/month Developmental Therapy with Judy. We both agreed that she is a smart cookie. So is Judy. Plus, she has great toys.

According to my dear friend Amy, it's Wordless Wednesday, but rules are meant to be broken. That said, this dorky pic is a shot out to my BFF Darcy - Queen of the self portrait.

(post dental cleaning cell phone self portrait)

Good Lord Willing and the Creek Don't Rise...

...we'll sell our house on Thursday, 11am. We listed it mid-June 2007 and moved out of state in July. That's a load of Benjamin's paid in 2 house payments and double utilities. A month ago the 1st buyer walked away with cold feet 4 days prior to closing. A phone call tonight from our realtor informed us that "all systems are Go" with the current buyers. As we pack an overnight bag and prepare for the trip back to Madison, WI tomorrow, it's hard not to worry about that darned creek, especially as my home town is actually flooded.

If you're in the market to buy or sell a home in Madison, WI, I STRONGLY urge you to look into the services of Jessica Spotts with Stark. She joined our efforts in January and has been amazing. If you need a new roof, our experience with Crest Homes has been great as well.

UPDATE: The unlawful withdrawal from an ATM in the UK finally showed up today. We'll see just how quickly we actually get the $ back from our credit union. Brilliant!

London Calling

New Scotland Yard

Yesterday we received an early morning phone call from New Scotland Yard. An Inspector of Crimes from the London Metropolitan Police was calling to follow up on M's ATM card debacle.

Maybe I should back up. Wednesday (April 23) M received a phone call from the fraud security company associated with our credit union about a suspicious charge. The charge happened on April 23, or 3 days after his return from Europe. According to the security company, "M" withdrew about $400 from an ATM in Dagenham (East London) somewhere between using his card at the Post Office and the grocery store in the States. What!!!? Uh, no.

M's card was not stolen. M's card was never out of his possession as he has it in a Harley wallet with chain. M is careful and is aware of the ATM card reader scams. So how could this be?

As best as he can tell, his card was copied when he used an ATM in Heathrow Airport where he transferred to a flight to Cologne, Germany. He wanted to buy our son a post card of a Flying Scotsman train. The value of the dollar is so bad (ex: $20 bought £8, the postcard was £1 or $2.50 - yikes!) The ATM he used was next to a cash exchange place, it had no external card slider, but was the type that you insert your card. It seemed safe. His card did not get stuck or captured. However, after attempting to withdraw money, he received an error message (something about being unable to process his VISA card). He went on his way and thought nothing more about it.

Immediately after the call from the security company we cancelled his card, we put a fraud alert on his credit reports, we contacted the London Police via email, and the next day we got new accounts. Thursday I received an email reply from the London Police that Heathrow was out of their jurisdiction and they had forwarded our information to New Scotland Yard - Metropolitan Police.

Back to 7:45 am Friday morning. My cell rang and Inspector M was calling from London to follow up and complete a police report. We are very impressed with how quickly they got back to us. Inspector M was very nice, thorough, and had a very strong accent. Both M and I had a hard time not giggling as he reminded us of characters from Monty Python or Wallace and Gromit.

Play the movie above for a quick snippet of W&G

Hopefully it's all over. In fact, so far the funds have not actually been taken out of our account. It is unclear as to whether or not the thieves actually received money, or just attempted the withdrawal. If it does show up, we've already filled out the papers to contest it. That and with the police report, we would get the money back. Nevertheless, we will be nervous and check our credit reports regularly.

It does leave us scratching our heads. How did they copy his card? What newfangled technology has been developed to copy cards that are inserted (but not captured or stuck)? Will the thieves simply toss out his copied card now that it doesn't work?

Lastly, according to the police website, this type of crime tends to be perpetrated by Eastern European organized crime types vs. Brits themselves. So, did M fly all the way to London to get ripped off by the Russian Mob? We will likely never know.

Willkommen Home!

After nearly a week in Köln (or Cologne), Germany - M is home! He was there for a conference but managed to do a bit of sight seeing and dust off his German. Of course a visit to the cathedral was a must. It has 2 spires, is 515 ft tall, and took 632 years to complete.

There was also the unusual beer bike (which since it has 4 wheels is really not exactly a bike, but still), and roaming the streets with Conan O'Brien-esque names like Filzengraben. We're so happy to have him home. To see more of what it is really like in Germany, click here.