August 17, 2012

Looking in the Mirror

Have you ever seen a Dwarf Blue Sheep?

Me neither.

A Nothern Muriqui?


Seen a Malatan Large Spotted Civet?

Don't even know what animal family that might resemble.

Another Bridger?

Nope.  Until just recently.

All of those critically endangered species have populations larger than the occurrence of Congenital Disorder of Glycosylation in the U.S.  Less than 200 "Bridgers" in the United States, and I just saw a whole beautiful room full.

We recently headed to Chicago to the Congenital Disorder of Glycosylation Family Convention.  Not many people have that on their summer itinerary.  I can only imagine what the obligatory back to school essay of "What I Did This Summer" will say that will soon be written by my children.

We made record time driving across there in one day with our signature prize buckets that the kids could pick a new item from every two hours.  We arrived late at night and creatively configured our sleeping arrangement in our adjoining hotel rooms.

The closet was the perfect size for Eliza.  She was a little unsure of what her crazy parents were subjecting her to until we called it her "nest".  We made her nest full of fluffy things and told the little bird to get in.  She immediately assumed the roll and chirped into her nest where she happily slept the rest of our trip.

Sleeping arrangements on the road with Bridger become a little more complex.  He can't sleep in a regular bed and would never understand the concept of staying put in a sleeping bag.  My brilliant $19 solution has served us well for the past 3 years.  His little car tent - which is just the right size for an air mattress or extra blankets to pad and clear top and see-thru sides so he doesn't get anxious fit perfectly in the accessible bathroom. . .er, uh, I mean the attached suite.  Unfortunately, this trip he learned how to unzip the sides and get out.  Must applaud those skills, I suppose.  But I quickly thwarted them when I wrapped a twist tie around the interior and exterior zippers to keep him safely inside.  Quite proud of myself for thinking on the fly like that.

We came down to the restaurant to breakfast the next morning, I turned the corner and froze.  In front of me was the only CDG child I had ever seen.  I couldn't help but cry as I looked at his beautiful face, charming smile, long slender fingers softly shaking in the air and those amazing eyes that stare at you yet through you at the same time.  I hugged the mom.  I felt like I was hugging a long lost sister.  We made the introductions.  Cried some more.  Then we met another beautiful girl with CDG and her mother.  My kids were excited to see a brother just like theirs.  They were also excited to meet some typical children that had a brother or sister just like them.  Just as breakfast wrapped up and I had gained composure, we turned the corner to go and there was another CDG family with a boy just Bridger's age.  I lost it again as I hugged his mom.  This is my long lost sorority of women.

a new friend sharing her communication device with Bridger
We spent that day touring Chicago. The bucket list: Sear's Tower and Gino's famous deep dish pizza.  The girls were tickled to be someplace that they could actually write on the walls.  Hopefully Eliza won't bring any ideas home with her.

We had a private consult with a geneticist and then prepared for the Family Meet and Greet that night.  I couldn't ever prepare for such a sight. I walked in the convention room doors with my crew and then came those tears again.  Beautiful families, just like ours.  Little boys in wheelchairs and blue jeans with worn out holes from scooting.  Grandparents eagerly smiling to see the support that exists for their children and grandchild in an otherwise lonely existence.  Parents that had an extra smile of softness from understanding - because they have been doing this for decades more than me.  Moms that had my same weighted heart.  A room full of a lot of love.

I smiled as I watched my other children who felt quite at home.  While Lance was waiting in the buffet line, he was being kicked from behind by a boy in his wheelchair.  The mother apologized to Lance, who then exclaimed with a smile, "That's OK, I'm already SO used to feeling THAT!"

We met this beautiful baby and his sweet parents that reminded us of Bridger just a few years ago.  I couldn't get enough of him, nor could Bridger.

Bridger, always smitten with blondes, found this little cutie almost immediately and was vying for her attention every chance he had.

Then there was this sweet boy - Bridger's playmate for the evening.  Typical boys. They didn't want to be in the party, they wanted to be outside playing where the boy used Bridger's wheelchair for support as he pushed him around the courtyard.  I laughed until I cried. . . or maybe I cried until I laughed.  Whatever the order, it was the most beautiful sight.

The next couple days were workshops in genetics, research, neurology and a host of other mind-numbing lectures using big words that have become such an all too familiar part of my vocabulary.

We spent our final night at the famous Navy Pier.  Ferris wheel, carousel, greasy treats.  So much fun.

Bridger on the ferris wheel with his beloved Katie and her beloved Lake Michigan
Time to go home.  Time for lots more tears.  We packed up in the car and started our trek Eastward.  I was overwhelmed with love and gratitude.  What a beautiful experience we were all able to share and heartstrings connected with other families that will continue with me forever.

Bridger trying to drive this sweet and very tolerant boy's chair.

Then an hour into the journey home I was smacked back into reality as Bridger started throwing up somewhere mid-Ohio.  As Alan and I were anxiously watching for signs indicating an approaching gas station, one of the three oblivious children in the back announced her startling discovery, "Mom, it doesn't SMELL good in here!"

We found a truck stop that only had a hose with a nozzle the equivalent of a power washer and water so cold it must have been from Lake Michigan.  So we stripped Bridger down and started the Arctic power wash of him and his entire section of the car.  Yes, it was everywhere.  That plague accompanied us all the way home, only interrupted by the excitement of hitting a large bird smack in the middle of our windshield and the remaining bird guts that we couldn't scrub off to save our life.  He remained sick for the next 30 days - complete with all the doctor and hospital visits that accompany such illnesses for him.  Just a day in the life.

Nevertheless, we were glad to be home and in our own beds once again and are savoring the sweet memories of our opportunity to finally look in the mirror and see a reflection of ourselves.