Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

I Suppose It Could Have Been Worse

In the grand scheme of travel days, there is a gradual continuum between smooth trouble-free airline travel, and frustration-fraught, delayed travel. Also on the continuum are accident-complicated and outright emergency situations, which of course, lurk on the horrible dark end of the travel continuum.

As some of you may know, my family embarked upon an airline trip to California to visit Jeremy’s parents. Our itinerary was moderately convenient, leaving at a very early 7 a.m. from Akron. A connection in Atlanta would lead us to Orange County, where we would arrive in time for lunch. We hustled our very sleepy toddler out the door and made it within a comfortable time frame to buy coffee at the terminal, find our gate, and enjoy some snacks we had preparedly packed in our carry-on bag. We were literally next in line to early board with a young child, when the word came down the jet bridge to hold up, there was a problem. The lady in a wheelchair who had already boarded even deplaned as well. Turns out there was a problem with a “non-critical” item of machinery, some small generator that powers the a/c and ventilation. The maintenance team would try a couple things and hopefully we would be on our way shortly.

Well, non of the ideas worked, so they decided to fly in a replacement part from Atlanta. They apologized for the delay, and began rebooking everyone’s connections from Atlanta. We got a later connection from Atlanta, but we had to switch our ultimate destination to LAX rather than Orange County. They sent Jeremy out to the check-in ticket counter to switch our luggage to arrive at LAX.

The replacement part arrived. Guess what? It didn’t work. So they decided to drive in yet another replacement part from Detroit. I could have told them that if two of the same part don’t work, the problem is probably somewhere else in the plane, but they didn’t ask me for my opinion. Meanwhile, the airline agents supplied drinks, snacks, and pizza in the gate area.

As the flight departure time continued to creep later and later, we decided to rebook again. This time we opted to abandon Akron and depart from Cleveland. We were able to book an itinerary with a different airline, departing from Cleveland to Chicago O’Hare departing at 5:20 p.m, and from there on to Orange County. It would be a late arrival time, but at least still a Sunday arrival. We went back to the ticket counter to retrieve our luggage, only to discover that it was already in Atlanta, on its way to Orange County. Despite Jeremy having switched it to LAX, but whatever. We also copped major ‘tude from the airline agent who was obviously very put out by all the changing travel plans. Still, she had no excuse. Silver lining, at least we could go on our way with carry-ons only, which would make things a bit more streamlined.

In the midst of all this toil and strife, and my increasing feeling that I no longer even desired to travel on this day, but rather go home and sleep instead, it is important to remember that it could have been worse. Maybe not a lot worse, but it could have been.

My parents graciously agreed to shepherd us to Cleveland, which meant we could leave our cars at home and avoid paying long term parking fees at the airport. We arrived in due time to board our flight to O’Hare. We ate some dinner(ish) and found our way to the gate. It began to rain while we walked through the concourse. No problem, airplanes can fly in the rain. Oh, and then we heard thunder. And saw lightning. And heard the announcement: the incoming flight that was to be our plane was diverted to Pittsburgh because of the weather. One hour delay. We needed to rebook our connection, which we were able to do, thank God, and back into Orange County! Plus the agent was even able to sit two of the seats together which meant a three-year-old didn’t need to sit alone. Hah. So we were ready.

After a couple more delays (the storm was heading east, so the plane was late leaving Pittsburgh), our plane arrived! We boarded, and miracle of miracles, we flew to Chicago. Whew. We had just enough time to change a diaper and get to the gate. The flight was on time, boarding on time, taking off on time. Big win. Things were looking up and we started to think that maybe our troubles were over.

And then this was my flight.

courtesy of twitter

Seriously, at this point I was so beaten down by the ordeal of my travel day, that this did very little to phase me. I just felt like, “I told you so,” when they announced that we were diverting to Wichita for an emergency landing. That was pretty dramatic, actually. We descended so quickly, my ears hurt. Luckily, Stephen slept through the entire thing. When we landed in Wichita, the fire trucks flanked both sides of the plane as we taxied toward the terminal. The plane stopped a few hundred feet from the end of the terminal, and we all waited to learn what was going on. The cabin pressure was fine, no one was injured, we were all just bemused. Many of us had had long travel days, so we were just trying to roll with the punches. When we landed, the flight attendant announced, “Welcome to Wichita.”

We waited and waited while the fire fighters and maintenance people assessed the problem, then we were told we much overnight in Wichita. The airline was kind enough to comp everyone a hotel room for the night, including vouchers to pay for breakfast. Good on them. See, even though we were venturing dangerously close to dark, horrible “it can’t be worse” end of the travel continuum, it really could have been worse. Really. Perspective must be maintained in all situations.

So we booked in to a hotel at midnight local time Wichita, KS. The “do-over” flight would be accomplished in the morning, TBA, using a plane that would be flown to Wichita empty for the sole purpose of taking us all to Orange County. We set an early alarm to check the flight status: 9:15 a.m. Score another 90 minutes of sleep. We enjoyed a lovely mostly-comped breakfast in the hotel restaurant and made our way back to the airport. Check in. Piece of cake. Kill some time purchasing “Wichita” t-shirt memorial souvenir. Done. Find our gate.

Flight delayed. Man oh man. Weather delay.

And folks, here is the true cherry on the top of our travel day banana split. Guess where the special plane was flying in from?

Cleveland. Man oh man.

So, to wrap up this chapter book of a travel tale, we did make it onto our special plane where the airline comped us snacks and drinks and in-flight entertainment. The flight this morning was totally uneventful, we enjoyed free and delicious airline snack boxes and movies, we managed to track down our luggage at the Orange County airport, and we are now comfortably ensconced in Jeremy’s parent’s living room. Even though the whole experience averages out to be IT SUCKED!!!, I have to say the airline agents and flight crews were all very accommodating and helpful, except for that one girl at the ticket counter. The airlines were very generous in comping materials to help make up for the inconvenience of interrupted travel.

Our day should have been, “we checked in, we flew, we arrived,” but instead we got an experience and a story. I hope you enjoyed reading about it.

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Happy Earthly Birthday

Today is Agnes’ first birthday. She would be one year old. I remember the day of her birth vividly, the anxiety, the fear of the unknown, the discomfort, and the excitement at the end of the labor when Agnes decided she had to be born Right Now. The pain. The anger that I couldn’t see her right away. Asking again and again when would I get to see my baby.

This past year has been a roller coaster of extreme highs and extreme lows. Caring for Agnes at home was fraught with high pressure need for attention to detail. Caring for Agnes in the hospital often became our routine. The hospital was our second home. The medical and social work staffs became like family for us.

The past week leading up to this date have been difficult for us; we have been sad and dreading today. Now that it’s here, I’m not sure how I feel. Maybe I’m relieved that the day is actually here and I don’t have to anticipate it any more. We made a loose plan to have a party to commemorate this day. We are buying an ice cream cake and my parents will come over. Today is a day to be simply endured; I can not hope to enjoy it. But I’m sure this first one will be the most difficult to endure. I know it will get easier with time.

In remembrance of Agnes, here is a link to her birth story.

Agnes will always be a huge part of our lives, and we will continue to mark her anniversaries of birth, on earth and into the heavenly kingdom. Agnes changed our lives, and her legacy continues to flourish through us and through all the people whose lives were affected by our little saint.

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Merry Christmas from Agnes in her cute booties.

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Other People’s Babies

You know it’s spring time when all the ladies you know start having their babies. Several of my facebook acquaintances recently gave birth to their beautiful new babies, and the newborn photos are adorable. The kiddos are so cute, and sleepy, and they have sweet little hands, and I could just eat them up. The little boys wear hats with an owl face and the little girls are in cute pink ruffles. I really like seeing these children of my friends. I am happy for the families who welcome these babies.

When Agnes was born, I joined a couple online networking groups for support. Mommies of Miracles and Moms of Trach Babies are the two main groups that I joined. I am still linked to these groups since they encourage the moms whose children have passed away to stay in touch with the community. I have been able to comment on a couple questions that have come to the discussion board, and it does help me feel connected to a community. The members of these groups submit charming photos of their “miracle” children with complex and often debilitating medical needs. Children in wheelchairs, children who can’t talk or see or hear, children who are dependent on feeding tubes, trachs, regular I.V. treatments, children who require multiply surgeries and hospital stays. Beautiful children who are always the light of mommy’s eye, and she loves this child so much, and she would do whatever and anything to help this child have a better life.

I love to see pictures of these children, too, the children who are alive despite grim diagnoses and shortened life expectancies. I love reading about how these children have overcome difficult circumstances in order to thrive in their own special way.

It does get really hard for me, though, to read about these miracle children. Harder than reading about healthy babies. My friends’ healthy babies are beautiful but it’s the stories of the medically complex babies that break my heart.

Earlier this week I saw some absolutely gorgeous photos of a little boy in┬áthe Mommies of Miracles group, and he has a very similar genetic condition to Agnes. Not the same, but very similar. His story was full of uncertainty, but he now appears to be thriving with the help of a feeding tube, and that’s it. His eyes were so big and blue, and he looked so alert, and he looked like Agnes would have looked if she ever opened her eyes. And he’s still alive. And doing well. With a condition so similar to what Agnes had. And it’s stories like his that are so hard for me to see. I am happy for that little boy and his family; he is a beautiful child. But I am also intensely sad and a little bit jealous.

This experience makes me wonder if I should still stay connected to these groups. Is the connection helpful for me or does it simply bring heartache? I don’t know. I love seeing the photos of miracle babies, but each one is a reminder that my miracle baby is not here anymore. I can cheer on these children and pray that they continue to beat the odds, but at the same time I am painfully aware that my child did not beat the odds.

Baby Agnes, pray for me.

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