Most of my fondest memories of my parents come from when I was sick-sick, or in the hospital, or the doctor’s office.
I mean, Dad did that “typical father” stuff, like teaching me Shakespeare at 8 and preparing me for the SAT at 9.
Mom and I had great conversations in the car going to school or running errands. And she used to buy writing journals back in PA, and we would sit at Presque Isle State Park or just in our house and write, and sometimes if I was lucky, she’d share her poems with me.
Yet the first thing that comes to mind of my childhood in general, and certainly with my parents, was doctors’ offices, tests, hospitals, or just in bed with a cold or flu. After all, that was the time when it was just me with Mom and/or Dad: nothing and no one else in the way.
I have a collection of “Mary Pictures.” I keep it on my phone, my laptop, and all the desktops. I made a video of it. One of my favorite pictures was taken at my nephew’s birthday when we were engaged, and I was having chestpain, and Mary was still in the “this is all new to me, so I’m gonna panic every time he has pain” stage. I was laying there on the sofa having chest pain.
It’s something that, prior to Mary, I did quite often, but it was always one of my deep emotional pains that my body kept me from participating in so much of the “basics” of life, and I spent so much time alone in the other room. So Mary was sitting there next to me on the couch, holding my hand, and someone took a picture, and I love that picture.
So, as a husband and a father, I feel like it’s my chance to “give back” when someone’s sick. Sadly, especially in the past couple years, I’m not much use to Mary when she’s sick, especially if I’m sick at the same time. But she also might not even know about certain underlying health conditions she has if we weren’t so aware of those matters because of me.
Her POTS, mitral valve prolapse and afibrillation would still be “just laziness” or “just fatigue” if she didn’t have me to confirm, “Yeah, that pain you’re having sounds cardiological. Go to the hospital.” Ironically, just a month before she went to the hospital and found out about her heart condition 2 years ago, I had been laying my head on her chest and thinking how nice it was to hear a “normal” heart beat. I felt like I cursed her.
Allie picked up very quickly on what a bonding experience the doctor’s office is, especially since I presented it to her that way.
She had her first echocardiogram (discounting one when she was a newborn) a month or so before Mary’s first sonogram with Gianna. They let her sit in on the sonogram since she’d already had an echo (for those who don’t know; it’s the same machine; just pointed in a different spot), and she already knew how to behave at a doctor’s office. After watching her sister’s sonograms, it also made her more comfortable with her echo.
She often accompanies me when I take her siblings to the doctor or the hospital and, with one exception, she’s always been a big help, and she’s always impressed the doctors.
Then there’s Gianna, the little nurse. She’s not as adamant about her life plans as she used to be, but we still tell her she’d be a great nurse if that’s what she chooses to do.
I will always remember Allie’s first major stomach bug when she was a one year old, which was I think the first time I took her to the pediatrician for a “sick visit.” I will always remember having to give the pediatrician a detailed description of what was in her diaper–never in a million years thought I’d be able to tackle that task. When she was born, the nurse laughed at me for wearing a mask and gloves while learning how to change a diaper (of course, in addition to the whole “grossed out” thing, I was also extremely paranoid at the time about my valve and infection).
I’ve always said my real “parental boot camp” came when Allie was a little over a year old. We all slept in the same room, and we kept the baby gate up in case she woke up. She knew how to walk, and she had just learned how to take off her own diaper. I woke up to discover that she had already woken up, taken off her diaper, and made a big mess with what was inside it. I had to clean the bed, the bedclothes, the carpet and the kid.
I was also used to being able to call the cavalry in such situations. I called Mary’s aunt. I called her parents. No one answered. When I finally got in touch with someone, it was her sister: “I can’t come over; I’m at the hospital because Mom’s had a heart attack.–But dad says not to tell Mary at school.” So now I had to clean all that stuff up on my own without Allie getting into further trouble *and* get her dressed so we could go to the hospital and find out what was happening with my mother in law.
Somehow, I did it, and I felt like I’d “arrived.”
Then Gianna and Joe came along with their severe food sensitivities. . . . Another permanent memory is the time when Gianna had some kind of accident on Allie’s favorite doll, “Gillian”–which she had received from my sister the previous Christmas. Mary was like, “The doll is ruined. Throw it out!” Allie was crying. I put it in the bathroom, cleaned up the rest of the mess, threw stuff in the wash, then went back to the bathroom and used shampoo, baking soda, Oxy-Clean and elbow grease till Gillian looked like a bright new doll.
Then there was her first stomach bug as a preschooler. I was working my job in Springfield at the time, and I had to go in on Saturday morning. They’d said it was OK to bring your kids on those Saturdays, and Allie had been looking forward to it.
So Friday night, woke up in the middle of the night, throwing up. I slept on the couch; she slept on the recliner. Mary and the other two at the time stayed upstairs. Next day, she went with me to work and mostly hid under my desk. Late in the morning, she was hungry, so I got her some crackers and pretzels from the vending machine, but I insisted she try ginger ale. “I’ve already drank water,” she said. “When did you do that?” I asked. “I got up in the middle of the night and got myself a glass of water, and I held it down OK.” That’s Allie.
Three eye surgeries for Allie. A broken arm for Gianna. Another broken arm for Joe. The common cold, influenza, bronchitis, allergies, etc. Gianna’s gastroenterological tests. Allie’s various physicians. Helping Allie through her “Marfan milestones”: her first knee dislocation, her first chest pain, . . . And the thing she has that I don’t have, that worries her mother and me to death, her pectus excavatum. Every year, they test it and tell us it’s “fine” (meaning they don’t want to operate yet). Yet when you put your arms around the kid, you can feel how frail her little ribs are. She doesn’t like being hugged because it hurts. Sometimes, I lay my hand on her chest, and I feel that indentation so deep I can put my fist through it, and I wonder how there’s any room in her chest at all, and I just want to cry for her.
Then there was the time Mary called me in a panic. Allie had said, matter of factly, as she so often does these things, that she couldn’t see anything in her right eye. I came rushing home, fearing retinal detachment. I did some informal tests. I called her cardiologist and her ophthalmologist. I ruled out retinal detachment, but I got her an emergency visit to the ophthalmologist, and he said the zonules on her right lens were so loose that, while the lens wasn’t dislocated, it wasn’t focusing at all anymore, so it was completely obscuring her vision. It took three surgeries and two years to get that lens out of the way, and by then it was almost too late.
I have a problem where Allie’s care is concerned: I’m the first to want to get whatever the best things for her I can get. Technology has improved a lot in the last 20 years, and I want her to have the opportunities I didn’t for care that didn’t exist then. However, I also know what it’s like to be a “guinea pig,” and I know what it’s like to suffer side effects and complications that are sometimes worse than the problem. And I know what the stress of all this stuff is like, and how all the different things going inside the Marfan body come together to drive one crazy.
Being a Marfan is like being a patient on “House”. They give you a drug for your heart, and the drug, in conjunction with the Marfan, screws up your intestines and lungs. They give you a physical therapy method for your hips, and it makes your knees dislocate. They give you at therapy for your knees, and it makes your back hurt. They give you a therapy for your back, and it makes your hips hurt. . . .
I’m very cautious about giving her cures that may be worse than disease, or putting her through therapies that might give her undue stress, because, on the one hand, I know exactly what she’s going through. On the other, unlike her father, the kid never complains . She only complains when she’s about ready for the hospital, and if she’s not feeling well, the only way she ever shows it is by lashing out.
We used to have a regular thing. We get into the habit and then somehow get out of it. It’s called, “If a kid’s being exceptionally crabby, give ’em some Tylenol.” Allie has headaches all the time, because of her vision, and everything else, and she doesn’t stop to say, “Hey, Mom and Dad. I have a headache.” She just gets crabby and uncooperative. When we’re smart, and we think, “Maybe she has a headache,” we offer her a Tylenol, she accepts it, and after a little while, she’s sweet and cooperative again.
Over the three years we lived in Columbia, I got to know several of the ER nurses, between my own visits, and the fact that I was always the designated parent for taking the kids. And nurses shift duties and hospitals. So, one time we have a nurse in triage who’s the room nurse the next time. Or we’re at a different hospital, and a nurse says, “Don’t I know you from somewhere! Oh, yeah! You’re the Marfan dad!” Or a nurse will say, “How’s Gianna’s arm?” “How’s Allie?”
I bring all this up because Joe fell this evening. It was pretty scary. We had gotten home from running errands. I was getting the grocery bags together. Mary and the kids ran in the house because the kids had to go to the bathroom (they sit all day and go hours on end between potty breaks; as soon as we leave the house, though, they need to go every 10 minutes). For some reason, Joe and Clara decided to run outside and play “Scooby Doo” in the dark. From inside the car, I heard them come running out, saw them run towards the front yard, and was just about to yell at them to go back in the house or get over to the car when
I saw and heard Joe take a bad fall.
He was crying. “Are you all right?” “No!” I came running over, and he was already on his feet. He toddled himself into the house and laid down on the futon. While everyone crowded around him, I unloaded the groceries. Then I knelt down beside him, cleaned his wounds, put on band aids, stroked his head, and talked to him gently. At first, all he said was that his arm hurt all over–and it was the arm he broke last year.
It didn’t look broken, and after talking to him about it, I got him to explain that his hand and wrist hurt, and he had fallen on his hand. I put ice on it for a while, and Mary took him to the ER, and she said they were great, and they said it’s probably not even a sprain but just a bruise.
But there was something special in that time. As terrifying as it was, it was also a special bonding moment for me, to kneel there in the den and tend to my little guy, stroking his head and talking to him. English 101 textbooks like to include an essay that E. B. White wrote about taking his son to the cabin that he used to go to with his father, and how the time seemed to blend and invert.
Something like that happens when I’m tending to my kids in their infirmities, especially the most drastic ones. It’s like I channel my mother. As I comfort my own child, I find myself a child again, being comforted by my Mom.