Category: Family

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Disturbance at the Heron House: Volume 2

Quotation-Napoleon-Hill-failure-adversity-Meetville-Quotes-12088…and then the treatments began.

The night I brought my wife and daughter home from the hospital we were still in flux. Yes, the surgery was done, but in order to let them go home the treatments had to already be set up, the equipment had to be scheduled to arrive at our home, and both my wife and I would have to be trained on it. It was such a small window, but we dotted our i’s and crossed our t’s and were able to go home.

Alexa couldn’t go back to school for an entire week, though, so there was also a reshuffling of schedules to accomplish that. During this whole time, too, Madeline knew things were different, and she was incredibly needy. It was very tough for us dealing with Alexa and the new therapies, dealing with Madeline and her new clingy-ness, and trying to wrap our brains around what the future might hold for us as a family.

When the therapist showed up with the “vest,” there was a lot to learn: from plugging it in correctly, to connecting the tubes properly, to running the machine through its programs, to even breaking it down in order to put it back in the case. The program took 22 minutes to cycle through with each treatment, and Alexa kept saying that it bothered her by making her itch with its vibrations. But we knew it was necessary to try and get her lung healthy again. Continue reading “Disturbance at the Heron House: Volume 2”

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Disturbance at the Heron House: Volume 1

Look at those smiles.

I am constantly astounded by the resiliency of children, the way they can adjust to just about anything, no matter how odd it is or how much it differs from their previous pattern, even my children. Now, if you know my children at all you’ll realize that they are pretty rigid in the things they do and like. For example, my 5-year old, Madeline, likes to play CandyLand, followed by Chutes & Ladders, and it has to be in that order. She also likes to try and cheat at both, but we’re working on keeping her honest. My 7-year old, Alexa, refuses to eat homemade macaroni & cheese (unless bribed with the promise of some sort of desert at the end of the mac and cheese rainbow), but she absolutely adores boxed mac & cheese with the fake orange “cheese.”

They are both also relatively stubborn when it comes to activities to do. Alexa likes to be in charge, but Madeline is not your classic follower. If there’s something she doesn’t want to do, she just won’t do it, even if they’re in the middle of it already. So, when Alexa came home from the hospital after her bronchoscopy in November, it was interesting to note how quickly both of them adjusted to the new way of life around here. I’ll explain…

  • Alexa had to have two “vest” administrations per day, one in the morning and one at night. The “vest” is an actual vest that inflates using two tubes attached to a powerful little machine that pushes air into the vest. It operates on escalating levels of what equates to vigorous shaking of her body in order to break up whatever mucous remained in her left lung.
  • Alexa also needed to have various inhalants as treatments, all of which were designed to open up her airways so that when the mucous was broken up by the vigorous shaking it would come out of the lung altogether and she would aspirate it. These treatments were also twice a day, and generally took place at the same time as the vest treatments.
  • During all of these treatments Alexa was far and away our focal point, which was a massive change from how things had been to that point. Because Madeline has Down syndrome it had become routine to focus on her health more so than the health of Alexa, and the issues that sent Alexa to the emergency room and then to surgery woke us up to that.

While Alexa was in the hospital, my wife Heidi stayed with her for the entire five tumultuous days, and I was back and forth from the hospital, to home, to work, and back to the hospital. It was ironically reminiscent of when Alexa was born. We weren’t sure of the time of her operation, or even what we were really dealing with for a while, and during the whole back and forth Madeline was with me, and then with her grandmother, and then back with me. Continue reading “Disturbance at the Heron House: Volume 1”

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Those Strings of Tension

tumblr_l3x5vcFP271qzklmoo1_500Monday night couldn’t get here soon enough. First they told us probably Monday morning, then it was “sometime after four,” and we were hoping for four but we knew it wasn’t to be, and then the final time quoted us was six o’clock in the evening. We had been in and out of Alexa’s room all day, playing the waiting game, a game that no one wins. And it would have been easy to give in to the impatience that had been building all day long, but we held strong somehow, even if that strength happened to be a fragile one. They had given her no food since seven o’clock on Sunday night, in readiness for her procedure, but as the day stretched on and we found out the “four o’clock” timetable, we were definitely not pleased because it meant no food for the entire day, and Alexa was starving by lunchtime while everyone else was able to eat. I felt horrible for my little one.

Then the doctor came in at 4:30, while the strings of tension were stretched tautly, and told us the final aim was for six that night, and because it was the first time we had actually seen someone in scrubs who had obviously just been in the operating room, or because we were just all out of steam, we believed him. And like clockwork things were finally starting to happen as they should. The assistant came up with a wheelchair right around six to escort Alexa to the operating floor to get prepared for the procedure. Of course that didn’t sit well with Lex because she gets really anxious, so you can imagine even though everyone from nursing students, to nurses, to doctors told her she wouldn’t feel a thing, that she was going under general anesthesia, she still got so upset.

When I say upset, I mean upset, too. Continue reading “Those Strings of Tension”

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Looking For a Father

This trip was special because I was with my dad.

I know many others have had it a lot worse than I did growing up. Sure, I lived in a poor part of Southwest Philadelphia, in a row home where I could hear the neighbors whisper if I focused just a little bit. There were drive-bys only a few blocks over, and I realize now just how dangerous the area was back then. But at the time I didn’t think about any of that, and I also honestly didn’t think about the children starving in Ethiopia either, even though my mom always talked about shipping my leftover vegetables there. I didn’t even think about the crack house on the end of the block where Old Leroy would sell his wares, but more often than not just use them himself. We were always warned to stay away from Old Leroy. Instead, what I wondered about more often than anything else was where my father was.

At first it was just like any other family at that time, I guess. It was before the 50+% divorce rate, so if anyone in our school came from a “broken” home it was a huge topic of gossip, but single mother households were on a precipitous rise with more and more women having children out of wedlock. The church frowned on that, and I knew all about it because both of my parents were heavy into the church, my father being a preacher, and my mother a church leader. And at the start our little nuclear family seemed to be just that — containing a nucleus of both parents around which we kids hovered.

Things started to drift into fragments, though, because my dad didn’t have a “home” church. Instead, he was (and is) one of those itinerant preachers who was constantly traveling from church to church, often outside of the city of my birth, and often for long swaths of time. He was also heavily involved in prison ministry so he would be in the jails talking to inmates when he wasn’t doing extensive church tours. That of course left little to no time to continue being a part of the nucleus that helped to keep the family going, and it was obviously very difficult on my mother and on myself and my sister as well.

An old friend of mine from high school sent me a Facebook message a few months ago in which he told me that a man with the last name of McManus had preached an amazing sermon at his church on Saturday, and he asked me if I knew him. Instead of answering his question, I said, “That’s my dad.” Continue reading “Looking For a Father”

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Labor Day Present

My mother’s mother was in labor on Labor Day, an ironic coincidence if I’ve ever seen one. I never met my mother’s mother, but I hear she was a fascinating woman. It’s rare, of course, that my mother’s birthday actually falls on a Labor Day, since it’s one of those shifting holidays, but it’s still … Continue reading Labor Day Present

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Brotherly Love and Sisterly Affection

This one’s a classic.

When I was young, I couldn’t stand my sister, Joy, for a multitude of reasons. First, she was older than me, so she felt like she could lord it over me from sunup till sundown. Secondly, she was outgoing so she made friends easily, which was something I was hard-pressed to do. In fact, my only real friend from birth until eighth grade was one boy who I thought felt sorry for me, or some of my sister’s friends who also seemed to feel bad for me.

Because she was older than me (by fifteen months), Joy was always in the grade ahead of mine, and because we went to a small school where each grade level was taught by one teacher, she would always get the same teachers right before I got there. And saying that Joy was good in school was a massive understatement. I lost count of all the times, on the first day of each school year, when the teacher would look at me, look at my last name on the sheet, and have this look on his/her face that said, “Oh, you’re HER brother!” Then, when I wasn’t as motivated as she was, they would shake their heads and make tsking sounds, like I had disappointed them. Continue reading “Brotherly Love and Sisterly Affection”