Traveling home: Part One

What follows in this post is a reflection a few days after the fact on the very long Saturday of bringing Mira (and the rest of us) home.

All week long we'd been watching Mira transforming before our eyes. the changes were all small, but they were definite, and steadily moving in a beautiful direction. Her body was gradually relaxing. She was becoming familiar with all of our voices. I had been moving from very delicate, gentle, light touches in just a few areas (her hair and her back) to holding her hands, stroking her legs and her cheek, brushing kisses across her face, and allowing the weight of my hand and arm to rest on her as I sat near her. She was tolerating (and perhaps even enjoying??) all of that beautifully.

Remember, this is the child who we were told ought not to be touched because touching her causes her to have seizures.

This both turns my stomach and breaks by heart at the same time. Humans are designed, created, to need the touch of others. It make me sick to think that for years, Mira's doctor has provided a medical excuse to her caregivers to deprive her of this most basic human need. We know that she was not the only one deprived of human touch during those long years of laying alone, for days, weeks, years of nothing. It makes me sick to think that although her caregivers had no issue depriving all of the children in their care of the kindness and affection that they needed, but that they likely felt medically justified in doing so to Mira.

My mind simply can not fathom the loneliness that these little ones have endured! My heart is broken knowing that although, yes, touch may have been a seizure trigger for Tsvetomira, and, oh, as I type this, the anger in me at the injustice of this forces tears from my eyes - it is more likely that it was not touch itself that was triggering seizures, but the stress caused by a sort of touch that was always rough, never kind, touch that was not intended to nurture, but to complete a task in the most efficient way possible, and with no consideration of the tender human life that was on the receiving end of that touch.

This is a scan of the photograph of Krassimir on his official referral paperwork. Everything about this photo is painful for me - the way he is being handled like an object, the look of terror not only in his face, but his posture...

There is no way you can convince me, or anyone else who was with me that week, that she can not tell the difference. She absolutely does not have a seizure response to touch. Far from it, she is calmed by the combination of her mommy's gentle touch and kind words. And who is surprised by that?

She was also beginning to move on her own by Friday. How surprised I was when, sitting next to her, I noticed her moving her arm!! I'd thought I'd seen a few leg movements, but since we'd had her snuggled under her blanket to keep her warm, it was harder to tell. There was no doubt about that movement of her arm, though. Incredible. In only a matter of days the healing power of gentle words and loving touch was manifesting itself in her.

So, we started our day of travel early Saturday morning with high hopes. Not only were there many visible cues that she was doing well, but all of Adam's work watching her, both internally and externally, and adjusting her routines over the week had done exactly what we had hoped for - given us the best possible Mira we could have to be ready for a very long, hopefully very boring day of travel.

After Mira's midnight feeding, I slept fitfully, dreaming that I'd gotten to the airport before realizing I'd forgotten to pay for the hotel! After waking fully at 3am (Sofia time) to give her the last feeding in the hotel room, it wasn't really worth trying to go back to sleep. I showered, packed up the last few things that we'd been using overnight, and then it was time to wake the big girls. I was greeted with plenty of resistance, but we managed to get up and going and dressed before our men came over to check on us and help load up the luggage cart so we could begin the three elevator trips it would take to get us all down to the hotel lobby.

After remember to pay for the hotel (phew!) we asked if we could purchase some washcloths to bring home with us - we were so well prepared for Mira's needs in so many ways, but did NOT have something nice to put under Mira's cheek to catch her drool. At 5 leva each we splurged - I had enough cash on me for two, and Adam pitched in to get us three more. I plan to send him one as a souvenir. ;)

Our taxi driver on the way to the airport was marvelous, very attentive to taking it easy for Mira's sake, and one of the first taxi drivers I'd met in Bulgaria who spoke quite good English.

Leah snapped a photo of the terminal, sparkling beautifully in its holiday decorations in the early morning darkness.

Adam's done this a few times before, and knows to bypass the lines, and go right to special services to ask for someone to help us navigate through security checkpoints.

There's my big girls, half asleep, trying to pound a few muffins before we go through security.

Mira's looking good! Alert and calm. Dad and I tease Adam that maybe we don't need him along after all. We're all well aware that this is purely teasing, and we have a lot of day ahead of us, with plenty of unknowns, but we're feeling pretty good about the start we've had.

We have made Adam's bag a part of Mira's chair on purpose - there's no doubt that there are medical supplies for a very sick little "baby." Everything we have brought in that bag, sharp things, liquids, opened and unopened, in sizes much greater than three ounces, all get through security (including our home made saline!)

So far so good - we wait for a bit inside the gate checkpoint in a quiet, semi-private area. Our seats are all six of the second row of the plane - not quite as nice as the first row, but sufficient for this shorter flight to Amsterdam. We are given permission to board, and roll Bogomila and Tsvetomira down the jet-way to the small Bulgaria Air plane. Bogomila gets the window seat by Leah and Grandpa, and Mira gets the window seat with me and Adam.

Carefully studying the safety information! Bogomila, of course, can read it. I remember my own uncertainty on my first plane ride when Matt and I were in graduate school, and can see that in her, and have no easy way to comfort her. But she is brave!

Mira lays across her seat and my lap supported by her memory foam cushion with an extra liquid positioner also placed within the pillowcase. Adam's stepped it up a notch, wearing not only his scrubs, but also his badge and his Amazing Vest with Twenty-Seven Pockets.

We start feeding Tsvetomira before takeoff, taking it even slower than we usually do, because, really, what else is there to do? We're just sitting on the plane for the next few hours! And we know that avoiding reflux is in her best interests for many reasons. Everyone handles the flight beautifully, and we land in Amsterdam. There's no way we're getting off that plane before everyone else is off, though, no matter how close we are to the door! When we finally get off the plane and climb down the stairs to the tarmac and onto the waiting handicap bus...which is surprised to see us. They were expecting to only be assisting the older man waiting behind us. We are so grateful that man was on the plane. They were somehow not anticipating our complicated crew (despite previous paperwork we'd filled out), and if he had not been there, the shuttle would not have been, either, and we would have had to wait (in the cold) or take the bus! Neither girl's chair has been brought around for us; we are very grateful for the shuttle. Adam has carried Bogomila down the stairs to get off the plane, and after the shuttle drops us off, he carries her into the terminal. I am carrying Tsvetomira. Bogomila, who has been accustomed to being able to talk to anyone except for us, asks a question of the airport personnel,,,and realizes she's truly not in Bulgaria anymore! It's either Dutch or English from here on out. By this time, we have only a short amount of time to get to our connecting flight. We are given the assistance we need and brought to our gate where there is a question regarding our seat assignments. We knew Adam's was not next to ours originally because we purchased his tickets at a later date, but we were NOT expecting to be told that the most seats we could get together were two. That's not enough. At a bare minimum, we told them, we need three - Mom, the sick child, and the nurse need to be seated together. The mom in me is deeply hoping that at least the two sisters will get to sit next to each other as well, even if they're not with us, and if Grandpa has to go by himself somewhere, we could make that work. We were even talking of having Grandpa fly standby on the next plane!

After a bit of finagling, we get onto the plane, as some of the last people to board. We make our way down to the center row of four where Adam, Mira, and I are supposed to sit...and there are only two seats open. A little shuffling, and one person who had moved himself up there moves back to his spot, so at least the three of us are together. Six rows in front of us on the window side of the right aisle are Bogomila and Leah's seats. As I am shuffling between settling Mira on the seat with Adam and trying to help my girls get into their seats, the kind people sitting directly across the aisle from me pick up on the situation and offer to switch with the girls so they are close to me. There is still no seat for Dad until he is offered one in first class - the speed with which the lady sitting in the fourth seat of my, Mira, and Adam's row decides to switch with Dad is incredible. ;) So, shortly before takeoff, we were finally all seated in six seats all in a row. We settle in for the long ride, Adam lining up all of his supplies for feeding in the seat backs in front of us (and some of his Twenty-Seven Pockets), Mira's head on his lap, and me trying to engage a bit with Bogomila across the aisle with an iPad app that doesn't do voice intake on the plane. Typing everything is much slower, and the concepts we're trying to get across are getting more complex. But she loves the in-flight screen on the back of the seat in front of her (though is disappointed that "Bulgarian" is NOT one of the language options!) and is thrilled by the juice, peanuts, and pretzels.

We settle in for a long boring flight, and once again joke with Adam about how he did such a good job all week that we're now feeling a little over-prepared for the trip. He diligently measures Grandpa's hand-crafted saline with four scoops of baby formula, shakes it up, and puts the prepared bottle into one of his pockets to wait for the time for her next feeding.

[You can read Part Two HERE.]