I hated it. Of course the transplant itself was wonderful for my family; it strengthened my parents’ relationship immeasurably, highlighted for us how loved and supported we were by our community, and gave my father a chance to live a longer, healthier life. For thirteen-year-old me, it was hell; I missed weeks of school, had to single-handedly sift through piles of well-intentioned but high-maintenance “helpers” and well-wishers, felt responsible for my parents as they healed and my then six-year-old brother as he struggled to understand everything. Insult of insults: the TV was half-hidden behind the rented hospital beds my parents had set up in the living room, so I couldn’t even watch The X-Files. To have that one traumatic, stressful, and generally awful event used to identify me was a slap to the face, however positive the outcome. I disdained ribbons to show support, and was occasionally flat-out nasty with people from support groups and benefit organizations.
Through college, I subtly concealed my dark medical past to all but my closest friends. I felt like strangers could smell the antiseptic of a hospital if I ever brought it up, so even after I went out into the “real world,” I rarely brought it up. I recreated myself as “that pottery chick” or “the girl with the big vocabulary” and sometimes “you know…the one who went to that weird hippie college.” Eventually, I became “R’s girlfriend,” and eventually “R’s wife,” and I was perfectly happy to be known that way. We got pregnant, and I was all geared up to be identified as a mom, hopefully a pretty awesome one.
Then we had our 19-week ultrasound. Our son — who was otherwise perfect in every way — had so many congenital heart defects that the doctor who made the initial assessment wasn’t even willing to guess which we would have to address first. In the time it took for our expressions to shift from excitement over the little boy squirming on the monitor to paralyzed terror, we became “a cardiac family.” Again and again, our son was referred to as a “hypoplast,” or a “single ventricle,” and only with repeated prompting did many medical professionals refer to him as a boy, a baby, or after birth, even by his name: Hudson.
To make a very, VERY long story short, Hudson did not do well after birth, and when he was two months old we were rushed out-of-state to Children’s Hospital in Boston where he was listed for a heart transplant. Suddenly, I was part of “the transplant family” again. I would have a “transplant kid” who would forever bear the label “cardiac,” no matter who he turned out to be. Thankfully, we had a short wait, a successful transplant, and he has had a pretty smooth road since then. Hudson is eight months old this week, and we are fully entrenched in the horrors of helping him find a healthy sleep pattern. No labels fully apply other than “happy baby.”
I started a new job recently, and made a very concrete decision. I would not let myself be labeled with the one awful thing that has dominated my life for the last year, because I want to be labeled according to the things I love. I’m a mother, and I love my son; being his Mom is the most amazing thing I have ever done. I’m a wife, and I love my husband; being his partner, even a sleep-deprived and cranky one, is a constant source of joy. I’m an English teacher, and I love my job; yes, I even mostly love my high school students, even when they are total pains in the butt. I will never escape from the fact that we are a transplant family, and that Hudson is a cardiac kid, but rather than let those be the defining features of who we are, I will simply accept them as part of the background. My new coworkers know who and what I love, and that is what I think matters most.
Raising Hudson to identify himself as himself first will be a challenge; he will always need to be aware of safety restrictions and all that jazz, but on that first day of school, I want him to say “Hi, I’m Hudson and I love books!” or “Hi, I’m Hudson and this one time, I ate a bug!” or something like that instead of “Hi, I’m Hudson and I had a heart transplant.” He is — and we all are — more than data on a hospital chart.
YES! Love love love this post 🙂
I’m a nurse and I have to correct members of staff (and sometimes myself) from refering to patients as the “perforated bowel” “the super allergic” or (worst of all) “Bed number X”
Hugs and happiness for your family 😀
I can relate to this. My daughter was born with an interrupted aortic arch and had to have open heart surgery when she was 5 days old. It was a horrible, traumatic time. We are all forever changed by that experience. She’s 18 months now, and in some ways I feel like we have moved beyond it because she is so incredibly healthy now. We also moved cross country when she was just over a year old. So now the only people who know are the people we have told. And we have not told many here. I do wonder how it will shape who she is as she grows. But for now she is the ridiculously cute, sweet, smart, funny 18 month old, not the cardiac kid.
I vividly remember the first time someone said, “oh, your the preemie mom.” And its nearly daily that my twins are refereed to as “the preemies” or “the heart babies”. It’s usually followed with a pitied “I don’t know how you do it.” Or a worst case scenario fear of “god, I could not even imagine.”
I usually try to redirect the conversation away from the “oh those poor babies, look what they had to endure” to the “look at everything my kiddos can do, my babies are awesome and strong.” Sometimes it works and sometimes it doesn’t.
Unfortunately, my 10-year-old sister has failed to escape being the Leukemia kid, even though she’s been in remission for 5 years. And now she’s essentially dropped out of school. I wish my parents had done a better job of handling it and being aware like you are.
As an expectant mom of a baby with Down syndrome, we’re already known as “the Down syndrome family” and our little one hasn’t even been born yet. I can’t even begin to imagine what types of labels will be placed on my youngest with this diagnosis, or even his older brother, for that matter. People will forever know my first-born as the “brother to the Down syndrome boy,” a double-dose of labels for my family. Unfortunately, the medical community hasn’t been any more supportive of our son’s individuality than they were for you. Thank you for this post and your honesty regarding your frustrations…it makes me feel a hell of a lot better knowing that I’m not being, as one person told me when I voiced my concerns, “overly-sensitive.”
I am so thankful that Hudson is recovering and has a chance to be known for his own identity, not a condition or diagnosis.
I find this article very interesting, as my own experience is quite a bit different. My family had to deal with labels from our community, but in a different way. I was never known as ‘the brain tumor kid’ or the ‘cancer kid’ or the ‘kidney transplant kid’. I was ‘the miracle baby’, or at the very least, ‘the lucky one’. Labels for my family have generally been positive. In a way, all of those things are a part of my identity, in a good way. I like sharing all of my unfortunate health problems, since they are all huge obstacles that I’ve had to overcome (with the help of doctors and my family of course), and I’m proud of it, in a way. A lot of people don’t meet many other people with poor health, and by sharing my story, I think it can help them understand, or at least appreciate that for some people, through no fault of their own, things aren’t as easy.
However, labels, no matter what their form, aren’t helpful to anyone. They group you in a single category and do not express the complexities of being a person with feelings and interests outside of whatever that label may be.
I’m sorry that people don’t always look past what your family has gone through, but maybe we, as people with health problems, or parents with children with health problems, can at least try to change the views of others. We can help them get past the ‘oh, poor you’ pity that we get so often, and put a positive spin on things.
Just my thoughts!
This is a fascinating perspective; I have struggled for years with how much my mother, in particular, embraces positive labels (“miraculous,” “lucky” and “survivor” being her favorites), and I think this comment has helped me wrap my head around some of her motivations. I know we have an amazing opportunity to positively impact others, especially those totally unfamiliar with such medical horrors, and I suppose I need to be more graceful about acknowledging their epithets for the power they carry.
Thank you so much SarahKat for sharing your experience. I may not be a parent, but I am dealing with life after cancer. People keep telling me I need to get over it, and I think your post helped me get there and stop being “the cancer girl”.
Having my daughter pass away from a very rare form of pediatric cancer I know that I am now, “that poor woman who lost her daughter to cancer.” I will forever be the mother to my Zoë, but there are days where I wish I could meet people, or hang out, and not have her death as a focus of conversation.
It is also hard because my husband and I are advocates for her cause, so much of the time I am identifying myself as someone who lost a child. I just wish that there were ways to show that I am off the clock, even though I know I never will be.
I am now surrounded by people who have children with heart defects, cancer, and other rare pediatric conditions both curable, and terminal. When ever speaking to others going through these challenges I make sure not to label them, and try my best to have “normal” conversations based on other mutual interests.
My daughter, Olivia, is a “Transplant kid”. She received her heart at 71/2 months old and will be 6 in January. I have done my best in her school community to not be identified as “Transplant mom” and “transplant kid”. It is a part of our lives and we do openly share our story though. We celebrate her “Heart Day” in the classroom and in doing so educate her classmates about organ donation.
It has never defined her though. She is an amazing, bright and very charismatic child. She knows about her heart and her donor, but it is not the first thing she tells people when they meet. I take her to ballet and unless it somehow comes up, I don’t say a word.
Thanks for your article I really enjoyed reading!
I can sympathize with the fear of having labels define you – it’s so much better when you choose the labels you want to be defined by… As a migraine sufferer, I literally have a Medic Alert bracelet labeling me as such… but for me, the chronic part (while a complete and total bitch that it will always come back and never go away completely) I actually forget that others don’t live that way – unless someone asks about the bracelet, or unless I am in the throws and about to vomit on someone’s shoes, I don’t bring it up. I don’t consciously avoid it, I just kinda forget that others may not know to expect that about me. It’s not something I put forward as my identity, it’s just part of how I live. OK, rambling, but this post relating labels and medical conditions clearly gave me thoughts to process – so good work! And thanks – I love brain food!!
I just had this issue brought to my attention in the ER. In for an asthma attack, nurse asked about medical history, and I skipped a few things. When they came up as being relevant later, she asked why I didn’t mention them earlier and I just kind of blinked at her! I said, “Sorry, they’re just such a part of my daily life I don’t really think about labeling myself with them until they become relevant!” Fortunately she understood and just laughed it off. But it happens to me all the time!
When we were first discharged from the hospital, a friend of my husband’s decided to give us a preemie foot key chain to remind us of our little one. I wanted to chuck the damn thing across the yard. When people see us now, their first comments are along the lines of, “wasn’t your son born, like, two months early?” This is the point when I have to bite my tongue and smile.
My son is more than premature: he has a personality and a huge smile. At four months old, it is already clear that he is learning to love. He laughs in his sleep, sometimes waking himself up. When he’s hungry, his cry sounds like a resounding “hey!” Once his diaper is off, he will take the first opportunity to pee all over his body, his blanket and my clean sweater. And each time I am as unsuspecting as the last.
He is not, and will never be, a “preemie baby.” He is my heart, my love, my son.
While I am in agreeance that it must be difficult to be labelled, I don’t think that all people inquiring about a specific condition are being mean spirited. I am sure I make internal labels when I see certain families. Not making this vocal is important though. It’s unfortunate that other aspects of the person being labelled aren’t asked about first to make things more comfortable. While there may be a label I bet a lot of people may label and then think about how lucky and strong the affected family is.
I think this is a double-edged knife. I didn’t and don’t want to be labelled as “the fibro girl,” or “the girl who used to be a dancer but almost broke her back/knee and can barely walk anymore” or any of the other issues I have, but sometimes I wish that people would stop behaving as if I’m totally normal. I want to feel normal, but I want my limitations taken into consideration! And I think when people try so hard to move past the parts that are weird and different and uncomfortable, they start to forget or avoid those things about me instead of normalize them. And that makes them avoid ME instead of normalizing me. It’s very lonely.
But these are chronic, life-altering things. When you can put it behind you, it’s totally different, and much more understandable to just want to let it go and not have people keep bringing it up. Heck, I’d get annoyed if all I talked about was my medical issues, too!
I am so with you. My husband has kidney disease, something that went from unknown to full-blown when we were in our early twenties. We got married soon after, but any questions about life as a newlywed were completely overshadowed by health questions. We are “the kidney family” and even three years in, I still sometimes feel invisible, as if being healthy isn’t interesting enough to give me any worth.
Thanks so much for posting this. It really means a lot to know I’m not the only one struggling with this type of identity crisis.
A little off-topic, but did you ever get any information on Hudson’s heart donor?
If they want to be in touch, we can contact them after the one-year anniversary of the transplant. I really hope they do; I’m terrified because I know it will be painful, but desperate to make a connection with the people who saved our son’s life. It feels really strange not knowing for so long, but it’s a rule per the National Organ database.
My son is the “Aspergers kid” no where near as traumatic as a heart defect, but he was picked on for it for years. We finally overcame it when we moved to a new school district and kids just saw him as “that gamer kid” and he has his own band of cohorts.
One of our kids had sleep apnea (ie. revive at least twice a night for 7 months), and the other had double duplex kidneys (blockages, operations etc) – the kidneys one had some stuff she had to do differently at school and had daily medication for a while, but to her those things are routine (and I treat it as part of the routine). Having said that, when prompted, she was able to explain to the teacher, but then that conversation was over and she was back to talking about what she did on the weekend.
Judging by our experience, your child will not define himself by the medical stuff, because that’s not an interest of his. It’s important for him to be able to define any medical needs clearly, but it doesn’t mean it needs to be an obsession, for sure.
THIS! SO MUCH THIS! My son had a heart transplant when he was five days old and I relate to this so hard. He’s going to turn two next week and we’re still dancing that line because constantly worrying about his ongoing medical care and keeping him from being solely defined by his heart transplant.