Monday, January 2, 2017

Never leave a man behind

Josie was 2 years old when Owen was born. Two years and 10 days. When he was born, we wanted to make the transition from single child to big sister easy. On day number 2 of Owen's life, we were told he would be blind. Glaucoma - high intraoccular pressure - would damage his optic nerve and leave him without vision. On the third day of his life, Alecia and I took Owen to Boston to meet Dr. Walton. Josie stayed behind with Alecia's parents in Albany. Nice transition: here's your new brother. We're heading out. Good luck, kid.

Josie has always been resilient. She was fine, spending the day with my in-laws while we went to Boston to meet the doctor who would save our son's vision. And when traveling to Boston became a regular thing, she went along with no complaining or tantrums. Load up in the car, drive 3 hours, see the doctor, hit the aquarium, get a giant burrito, and head for home. She just rode along through it all.

Josie liked Sesame Street, and she adored Ernie, the little orange guy with the round head. She had a stuffed Ernie doll that would travel with us to Boston. On day trips, she would sit in her car seat as we scooted across Massachusettes, Ernie sitting in her lap.

And when we would spend the week in Boston for Owen's surgeries, Ernie would come along for the ride, hanging out in the hotel with Josie, offering her some comfort in a whirlwind of travel, doctors, and road food. She would sleep with that little guy tucked right up to her pillow. After surgery week, we would pack it all up and head home. All was good and easy with Josie.

Until Ernie got left behind.

Rule number one: Never leave a (stuffed) man behind. Never, ever. Ever.

After a week of hotel life, lobby food, surgery, crying, hoping, laughing, protecting, we headed home to Albany, arriving after dark to our little yellow house on West Lawrence Street. We pull in, unload, and start getting the kids up to bed. Diaper change, pajamas, teeth brushing. While getting things ready, Alecia was unpacking stuff when she realized there was a problem.

"We forgot Ernie." She said. "Crap."

Now, I consider myself a problem solver. I don't worry about problems too much. I just get into gear and make the best of situations.

Alecia and I formulate a plan: It's Thursday night, and the Toy Maker store is still open for another 45 minutes or so. I'll get Josie ready for bed, keeping her attention away from the missing Ernie doll. Alecia will head out to the toy store, and hopefully find a replacement Ernie so Josie has her companion to cuddle with while she sleeps. Easy peasy, lemon squeezy.

Alecia heads out to the store, arriving just before closing time. She comes home.

With Bert.

No Ernie dolls were available, so she got the next best thing. She bought a Bert doll. A yellow, cone headed, unibrowed, wild haired Bert doll.

Our plan was working splendidly. Or failing miserably. You pick.

Josie is all ready for bed, in her PJ's and tucked in. We simply place Bert in bed next to her, like this is the doll she has been cuddling with all her life. Maybe she won't notice.

She looks at us with a "what the fuck is this face." Alecia explains that Ernie got left behind in the hotel in Boston, and his friend Bert was here to keep her company.

Now, Josie is pretty smart. She once questioned how Santa can actually deliver gifts to our house because the pitch of the roof was too great to safely land a sleigh. Seriously.

And she wasn't having anything to do with Bert. There were tears and consoling. It took some time, but we finally got Josie to settle down. Luckily, it was Thursday, and although we had just endured 4 days and nights in Boston, we were heading back on Saturday for a follow up appointment with Dr. Walton. We would simply stop at the hotel and see if they found our pal Ernie.

Saturday comes, and we swing by the Holiday Inn on Blossom Street and check with housekeeping. Guess what? They had Ernie. We got him back. He still sleeps next to Josie, some 9 years later.

Never leave a man behind.

Sunday, January 1, 2017

Clogged tube

Autumn 2007: We travel to boston on a regular basis - at least once per week - for pressure checks for Owen's eyes. He was born with glaucoma, and he requires frequent monitoring of his eye pressure to preserve his sight. If the pressure goes up, Owen has surgery.

So far, Owen has had two surgeries on his right eye. The first was to place a small tube in his right eye to control the draining of fluid from his eye. The second was to reform the shape of his eye after too much fluid drained out. Owen was 21 days old for his first surgery. His first few months of life have been a whirlwind of travel to Boston, hotel rooms, road food, and close family time. Getting poked in the eyes is his normal.

We have some fun times as we go. After Owen's appointments with Dr. Walton, we often go to the New England Aquarium. Josie, Owen's big sister, loves the jellyfish exhibit, and she enjoys watching the penguins.

We find restaurants we like. Fast food, and small little places that we can grab something quick. A burrito place near Dr. Walton's office, Viva Burrito, is where we purchased the burrito that Josie was holding in the famous "I Like My Burrito" video. (It's famous only in our family.) To this day, it's fun to go to Viva, get burritos, and have Josie say in her baby voice, "It's not very hot. I like my burrito."

There are moments of magic. Quiet times that are shared only between Alecia and I while the kids are sleeping in the tandem stroller. We have snacks and coffee and tea at the Spotted Apron, chatting quietly while the children snooze and the snow falls outside. We occasionally stroll down Charles Street, checking out the shops and brownstones. Once as the kids slept in the stroller, we headed into a toy shop called the Red Wagon. We quietly and joyfully shopped for toys for the kids. Future Christmas presents. Occasionally, we would head over to the park and spend some time with the Make Way for Ducklings statues. Good times. Pure magic. Boston becomes our town. And to think none of it would have happened if poor Owen didn't draw his unfortunate lot and have glaucoma.

Early November, and we start to notice things are not going so well with Owen's right eye. It's red, swollen, and he keeps it closed much of the time. But one day, things are particularly bad. Things are looking cloudy in his eye, a sign the pressure may be increasing. We head to Boston for an appointment wtih Dr. Walton. Sure enough, pressure has increased, and Owen's third eye surgery is scheduled for the next week.

We're prepared. My wife has the hotel room already booked, as she always has 4 weeks of hotel rooms reserved during Owen's first year. Alecia's parents take the week off work. We know the drill: head to Boston on Monday morning while I stay in Albany and work. After work on Monday, I drive to Boston, picking up road food on the way and hoping to make it by 10 pm.

The morning of surgery, Tuesday, we rise early and get Owen in the stroller. Alecia's mom sneaks over to our room to keep an eye on Josie, and Alecia and I sneak off to the quiet streets of Boston with Owen in the stroller. Past the parking garage, the Yawkey pavillion, the bike racks. Into the Mass Eye and Ear Infirmary. Floor number 8.

We push the call button, and the nurse buzzes us in. Familiar faces lead us to the prep room, and Owen dons the world's tiniest hospital gown once again. We wait, nervously chatting about everything and nothing, and holding our son who will have his third eye surgery in as many months.

Finally, the transport guy arrives and leads my wife, holding Owen, down to surgery. She knows the drill. Dr. Walton takes the boy, and Alecia says her goodbyes. No need for mom to stay and watch her son being put under general anesthesia, once again.

Alecia returns to the hospital room, and we get a pager and head to the cafeteria. We sit by the window with our coffee and tea and chat as doctors, nurses, and other folks get their morning food. The wait is now just the wait. We are anxious, but we've been down this road before, and the routine of it all makes it oddly comforting. We head back to the hospital room, and finally surgery is done.

Alecia takes the elevator to the surgery floor to get Owen. Dr. Walton informs her that the tube was clogged, and that's why his eye got cloudy. Pressure went up, cornea got cloudy. Stupid clog. When Owen is ready, he returns to the room with Alecia, his little eye covered with the metal protective patch. A small BandAid on his foot indicates the place where the IV was. After an hour or so, we are discharged. We remove the tiny gown from the boy, and head down the elevator. The Yawkey pavillian, bike racks, and parking garage. Hotel room. Food, rest, and family.

We follow up with Dr. Walton the next day. Surgery went well, and we are free to go. Follow up next week.

We remind Dr. Walton that next week is Thanksgiving. "Ok," he says, surprised that we would ever think he would consider taking some time off.  "See you then."

We have a son with glaucoma, and we're amazed with how much we have to be thankful for.