advice for the medically-complex sibling experience
July 17, 2015 9:07 AM   Subscribe

Did you grow up with a chronically-ill sibling? Were you the chronically-ill child? Or the parent to this type of sibling set? How did it affect you growing up? I'd love to hear more about your experiences.

This was us 2.5 years ago. The first year of our son's life was so terrifying that my husband and I decided to stop at one kid and just focus on taking the best care of him possible. But Toddler Maarika is doing so well, and life with him is so fun right now, that my ovaries and my brain keep thinking about MORE BABIES. This is crazy because there is a 25% chance of future offspring having the same genetic disorder, and I can't fathom taking care of two medically-complex children (and there's also the chance that another child would have entirely different, possibly worse medical issues).

But I am curious about what life would be like for my son if he had a "healthy" sibling, and what life would be like for that sibling. Toddler Maarika's metabolic disorder means that we have to navigate and track a very strict diet, administer two medications with each meal (one refrigerated, one room-temperature, which makes traveling a pain), and run him into the ER for every illness that involves fever/vomiting/dehydration/loss of appetite. I could picture a younger sibling resenting the attention that their older sibling was getting. I could picture the older sibling resenting the freedom that younger sibling had with food/meds/life. I can picture all sorts of nightmare scenarios with a dangerously ill child in in the hospital and a breastfed baby (or sick kid) at home. It seems stupid to borrow trouble by adding another child to the mix, let alone adding another child's germs to the home petri dish.

Did you live through this growing up? Or were you a parent in this scenario? [And what did you decide about additional kids?] I've read all the "only child" threads on this site trying to seek some comfort in stopping with one child, but none have the medical slant that I'm looking for. I know a couple other families who have one or more kids with the same genetic disorder as my son, but they are all super religious and/or have a lot more faith in the universe than I do.
posted by Maarika to Human Relations (16 answers total) 8 users marked this as a favorite
My four-years-younger sister went through quite a bit of medical complexity while I was in high school, and, while her experience was obviously way worse, I had a pretty shitty time of it. My parents were basically absent for my junior and senior year (often literally, as my sister had to live in another state for a couple of months to see a specialist,) and she spent the winter vacation having surgery two or three years in a row. For at least ten or fifteen years after, I had a PTSD-ish reaction to the Christmas season. (I still hate it, but it's less life-disrupting now.) Fortunately her issues were more or less solvable (or, at least, the recent hip replacement should mitigate them for another twenty or thirty years) but it was not a good experience even as an independent older sibling. I can't even imagine what it would have been like to be the younger one.

The short version: life as the sibling in the situation sucked hard for me, and I'm talking about a *vastly* less pervasive and serious situation.
posted by restless_nomad at 9:26 AM on July 17, 2015 [1 favorite]

I was born with eye problems in one eye and my younger brother did not have health problems. I did get more attention than he did growing up, and acted like a spoiled brat as a young adult for longer than I should have. I don't know if these two things are related.

When I got pregnant, the maternity hospital suggested I have an anomaly scan, because of my congenital issues - before that moment, it didn't occur to me that I would be 'responsible' for passing down a painful condition to my child.

It turns out I have a mild collagen disorder which could be the root cause of my eye problems as well as hip dysplasia.

I'm not sure this answers your question, which was specifically about siblings. But I would not want for my child to suffer the pain I have, if I could avoid it.

We stopped at one, even though I have sometimes wanted another one.

Having said all that, this is your family's decision, not anyone else's. I wish you the best.
posted by mgrrl at 9:34 AM on July 17, 2015

I don't know how helpful this really is, but I grew up with an older sister with profound mental and physical handicaps. It was extraordinarily difficult and had an enormous impact on who I am as a person, I really have no idea who I would be if my sister had been healthy. Better or worse, I would have been someone else entirely.

I never resented the attention/care that my sister got, or her being the reason we couldn't do certain fun things (and there were quite a lot of those). I remember not really understanding adults who asked me if I felt this way.

It made me reject from a very young age any ideas about the world being a just place, which I suppose is a good thing. That probably led to me having a bit of a chip on my shoulder about people who I thought had it easier than I did, which wasn't helpful.

Socially it made me very reticent to talk about my life because I really disliked people feeling sorry for us, and feeling different than everyone else who had "normal" lives.

It made things easier on my parents and my sister as I got old enough to help and they aged into their 40's and 50's, not that I was super eager or gracious about helping.

Anyway, it's such a big subject, I could write a hundred pages about it and still maybe not say anything that would be directly on point. I wonder how things might have been different, but mostly now that she's gone I just miss her and wish she had the same chance that everyone else had.
posted by skewed at 9:47 AM on July 17, 2015 [4 favorites]

I was a late life surprise--born 10 years (almost to the date) after my mom was told she physically couldn't have kids anymore. Uh, surprise mom. I have two siblings, both more than a decade older than me.

I was a complicated, sickly kid, and it made me withdrawn and uncomfortable being away from the comfort and routine of home. I was diagnosed with Crohn's disease when I was 11 and that at least made things clearer. Medical therapies then sucked, though, and for a few years I think I was worse off in some ways--very sun sensitive, body and mind warped by megadoses of steroids, constant endo-/colonoscopies and various clinical strangers poking my butt in rooms full of medical students, no counseling on the role of diet so always nauseated and waifishly thin, and so on. I was not made particularly humble by all this--if anything, I resented my healthy family members. I think I made life hell on them intentionally for a while there.

When I was around 13/14, I sought out a doctor who was also a registered dietician who helped me put together a food diary and taught me all about my condition and my role in it. I went vegetarian, and then vegan, and omg things got much better. I slowly emerged from the hole I'd grown up in. My siblings had been long out of the house by then, but they had responded differently. My brother more or less vanished from my life (and that's totally ok), but my sister became a second mom/caretaker and is today one of my closest friends.

That'd be my takeaway: people in every family deal with complex health issues, and people will respond differently. One can't anticipate how these things will go, and I don't think you should worry to much about trying to do so.

I would encourage you to seek amnio (etc.) so you have a full complement of info going into making another baby. Whatever you do with that info is up to you, but even knowing in advance that you need to be prepared in a specific way for your next young 'un is a help. The most terrifying part of my upbringing was the years of not knowing what was happening, but also being trapped inside a kid brain that has a very naive level of understanding about adults and their capacity for honesty, dishonesty, preparedness, unpreparedness, etc. This is all stuff that is formative for adult personas, and since I can't change how it played out I've learned to appreciate it for the role it played in making me the well-adjusted person I am today. I think my siblings and parents would probably agree with that assessment.
posted by late afternoon dreaming hotel at 10:18 AM on July 17, 2015 [1 favorite]

It didn't do me a lot of good. I did have some resentment that things we could do as a family were limited by my older sibling's disabilities. But more serious was that I was somewhat traumatized by his continual medical crises, and grew up feeling that it wasn't OK to make my needs known, because I didn't want to add to the family's troubles. That was also due to our father's early death, though, and it's hard to say how much came from what.

On balance though I'm fairly happy to have been born.
posted by thelonius at 10:37 AM on July 17, 2015 [2 favorites]

My situation was not exactly similar to what you're asking, but perhaps will be helpful. My older sister was "fragile", both physically and emotionally. Even though I was 2.5 years younger, people could understand me speaking better than they could her. As a child, I resented the hell out of how she sucked up all the oxygen and attention, so I was probably difficult and tantrum-y far beyond the age when that stuff usually dies out.

Looking back on it now, as a (ahem) mature adult I realize that the experience really fostered a sense of independence in me. I learned early on that I couldn't necessarily count on my parents or anyone else, for that matter, for support. It also drove me into pursuing psychology as a career and drew me into self-awareness workshops which has paid off in spades. And she's *still* fragile both physically and emotionally, although I tend to refer to her as being "prickly".

The other consequence, now that I think about it, is that I connect easily with, and have tremendous empathy for, other children who grew up in the shadow of a needy sibling.
posted by DrGail at 12:19 PM on July 17, 2015

I'm the much younger sister (by 10 and 13 years) of two older brothers whose substance use disorders began very early in their lives and escalated as they got older (as these things do). So my situation is different, but I think there are some things it might have in common with your toddler's hypothetical younger sibling.

My parents were always hyper focused on my brothers and their troubles. They worried constantly about my brothers, talked constantly about my brothers, and gave the bulk of their attention to my brothers. They loved me, don't get me wrong. But I always felt like I was less important than my brothers.

Plus, I felt like competing with them for my parents' resources would be wrong/unfair. My brothers were clearly way worse off than I was. I was a good kid, and from a young age I was fairly good at taking care of myself (probably out of necessity). If I wanted money for something, it was like... for spending a day hanging out at the mall, or going skating with my friends, or going out for pizza with my little clique. If my brothers wanted money, it was for clothes to wear to a job interview, or to make their rent, or to bail them out of jail.

Every holiday was disrupted because my brothers' issues made them highly disruptive people. No matter how perfect I tried to be -- and believe me, I tried to be really perfect -- there would be a point every Thanksgiving or Christmas when the family dynamic would break down and there would be fighting and yelling and anger and crying and it was just awful. As soon as I got to college, I stopped going home for holidays altogether, and have made lame excuses not to go home for holidays ever since (and it's been a lot of years since college at this point). Instead I visit before or after the actual holiday, so I can stay out of that angry fight-soup atmosphere.

I remember calling my parents out one time while I was in college; they kept demanding to know why I couldn't be home on Christmas day, and I finally snapped and told them. I told them basically everything I've said here - which probably comes down to feeling like I was always in third place in the family because my brothers were always tied for first. It came as a total shock for them, probably because a lot of the attention my brothers got was negative. But it was still attention, you know?

Based on my experience, I think this could be key for you. Because it was never about not understanding my parents reasons for giving my brothers all their attention. The reasons made sense to me. But my brothers having big major needs didn't make *my* normal kid needs any less real. It just meant my needs didn't get met as often in this particular family, and that had a big effect on me. And it still does.
posted by kythuen at 1:23 PM on July 17, 2015 [7 favorites]

I have a homozygous recessive genetic disorder. My oldest son has the same thing. My youngest does not. When I was having kids, I did not know I had it and my oldest son was diagnosed because I was finally diagnosed in my mid thirties. Unlike when two carriers reproduce, when a person with the disorder reproduces with a carrier, the odds are 50-50, not 1 in 4, of having a child with the disorder. I knew none of this when I was making reproductive choices.

My oldest son was really needy and I was extremely inclined to dote. This worked well, given his health problems. My younger son is an introvert who would have put an axe through my face if I had doted on him the way I doted on this brother. This was a hard thing to adjust to, that he was so much less needy and also wanted me out of his hair, by god. It was a lot harder for me respect his boundaries and give him his space than it had been to go all in with dutifully caring for a sickly child.

For unrelated reasons, I later ended up homeschooling both sons. This gave us a lot of flexibility to accommodate the needs of both kids. I was fortunate in that I was able to be a full time mom and homemaker for about two decades and my husband's military career made most medical care free (or extremely cheap).

I did work hard at making sure to meet the needs of each child and to recognize that they had very different needs. I did at times point out that I made an effort with my youngest since that effort was a lot less apparent. For example, he is lactose intolerant but loves milk. I made an effort to make sure there was always lactose reduced milk at home, something mostly consumed by him and bought specially for him.

My sons have a good relationship with each other. They are in their twenties and very close. We all three get along well and I don't regret having them both. In fact, I had the second child in part because I felt strongly my first child really needed a sibling. He is not good with the social stuff and does not readily bond with other people. He has a strong relationship with me and his brother and that's about it. I think he would be a lot less functional had he not had a sibling and his life would be a lot more problematic. He would also make me a lot crazier. He seems to never shut up and it helps that he has two people to talk with so it is okay for one of us to go "Yeah, I can't take this anymore. I need a break. K? Thanks."

This kind of question comes up a fair amount on discussion forums for the genetic disorder I have. People really wrestle with questions like whether or not it is ethical to have another child now that they know they are both carriers and there is a 25% chance that any child they have will have the disorder. FWIW, I have come to believe that, in some sense, that aspect is given too much weight. Historically, having children was so much more likely to result in mom dying or a child with a big problem being born or simply being a high burden on a family in a subsistence culture because there were just too many kids. We have kind of arrived at a point where we have this unrealistic expectation that all children should be healthy and "perfect" or something, as if that is baseline "normal," and it just is not and never was.

Of course, that's easy for me to say. My reproductive choices were made in a state of "ignorance is bliss." I originally wanted three kids and stopped at two because I was always sick and my oldest was a big burden to raise and I didn't feel there was enough to go around to have and raise a third child. So it is not like the health issues did not impact my reproductive choices. But it was a pragmatic choice, informed by the reality that there was only so much time, energy and money and we were already stretched thin. It did not have this extra layer of having a scary label attached to our medical problems and the knowledge that the odds were 50-50 that another child would also qualify for the same scary label.

Best of luck.
posted by Michele in California at 2:03 PM on July 17, 2015 [3 favorites]

Best answer: As a sibling of someone with special needs (rare, life-threatening cardiovascular disease + intellectual disability) who has also been an active participant in the support community, I think this paper would be extremely valuable for you to read: What Siblings Would Like Parents and Service Providers to Know (PDF).

Some sibling experiences leave deeper imprints than others, but one thing's for sure: we will always grapple with a swirl of inner conflict that rotates guilt, starvation, sadness, resentment, gratitude, joy, isolation, anger, and profound meaning. It's important that you give the sibling(s) healthy ways to cope with their demons, peers to relate to, and information about the looming future. Things will get harder as the "healthy" or "neurotypical" child grows into an adult, reaching milestones that their siblings may never hit, and they may end up internalizing the struggle altogether. My parents are amazing but they didn't do this part very well so it was hard, and I don't knock them for it and have since tried to individuate. They had so much going against them.

Another thing that I learned from therapists was that when one child is struggling with a serious illness or condition, sometimes the other healthy sibling develops symptoms as well (mentally, physically, emotionally). I can attest to this. Whether these health ramifications are phantom/psychosomatic conditions, manifestations of stress, survival mechanisms to cope with a lack of care, or legitimate issues that would've surfaced either way, I can't say. I'm no professional and this is hearsay. But I also studied resilience theory back in college and for the most part, I remember the outlook is pretty promising. The upside is that we are immensely resilient and weathered (in a good way). We have perspective, we are independent (sometimes too much), we are more self-aware and perceptive, and we are more grounded about realities of life.

I began therapy quite late (early 20's) and am always astonished at how many unrelated issues stem being a sibling. It affects my career, my love life, my friendships, my self-esteem, my relationship with my parents, my health...everything. I vacillate between feeling like I grew up as an only child, a third parent, and a sibling in the shadows. Like many others, I definitely needed more support than I got. But at the end of the day, I consider myself immensely lucky because my sister is the light of my life and I truly don't think I'd be the kind of layered, dynamic person I am today without her influence. However, I do have a lot more muck to wade through than the average sibling, and that gets burdensome.

I know of a few parents who were overwhelmed with their first special needs child and decided against more, but the "what-ifs" do haunt them. I also know of a couple in your position who kept having children, only to discover that all three were born with disabilities. They're a rambunctious bunch and the parents struggle with depression, but they make it work. I also know 100% healthy families who are really dysfunctional, where absolutely no one is happy and they don't have a need to be a united team. There's just no clear answer to this one -- especially if you're not inclined to make a faith-based decision. You guys are already so conscientious. That's a good sign. I can promise there will be beautiful, hope-giving, surreal, moving moments if you have more kids, but it will not be smooth sailing for anyone involved. So maybe it's a matter of how big your plate is. Are you ready to embrace all hypothetical scenarios? Are you considering a second to soothe yourselves? Are you and your partner confident that you can provide a loving home and do everything in your power to give your next child the attention s/he needs and deserves?

Either way, keep us posted. Wish you the best for your budding family.
posted by doctordrey at 2:11 PM on July 17, 2015 [4 favorites]

I was the sick sibling in my family and also the youngest of 3. Starting at around 3 years old (when I was diagnosed with seizures), my childhood was very sheltered and largely spent in military base hospitals getting blood draws, MRIs, CT scans, doing med trials, etc. Naturally, this ate up more of my parents' attention/resources the first few years of my life and led to incredible resentment on both of my siblings' parts. Both siblings acted out -- one sought attention by making boys an early priority in life (which quickly redirected my parents' attention as they placed high importance/value on chastity); the other sibling turned her ire towards me and became physically/emotionally abusive -- a dynamic that my young, inexperienced parents seemed powerless to stop and that continued until I was in my mid-teens (and capable of physically stopping it). The same sibling was abusive outside the home as well -- often times getting in trouble at school over it. Bad attention was still attention after all and since my parents also placed high importance/value on a HS education, her behavior redirected their attention rather quickly.

Neither of my siblings ever adopted a 'caretaker' or 'supportive' role in the slightest nor tried to help out the home in any way -- both were always blinded by hate/jealousy over the fact that, while they were in school, I got to go 'places' they didn't (ie: the hospital; sometimes the park after an MRI or CT scan), got to have 'things' they didn't (ie: various awful-tasting medications; cookies from the hospital staff after a blood draw), and got extra alone time with my mother (ie: reading magazines in the hospital waiting room). Trying to explain that none of these things were 'fun' didn't matter -- they simply perceived that I was getting 'stuff' they weren't and that wasn't fair. Even if my parents tried to placate them by buying them things, it was never enough unless they got something and I didn't. Often times they wanted nothing at all to do with me unless it was to bully/insult me about my seizures (they perceived me as mentally handicapped because of them -- when I got straight A's it infuriated them; report card day usually resulted in physical altercations), my weight (med switches caused weight gain in my pre-teens), my appearance (I felt like shit a lot and didn't care about being a dressed up like a girly girl or being 'pretty' like they did) and my perceived sexual orientation (my closer friends were often girls -- theirs were boys). When I was 10ish or so their acting out eventually escalated to the point where it consumed ALL of my parents' attention and resources -- and it has remained that way ever since. It left me to navigate life on my own starting at a really young age and has certainly contributed to my withdrawn personality. I didn't have anyone else's help or guidance in some very formative years -- the couple of times I tried to seek any kind of guidance or help from my parents, I was turned down because their attention and energy had already been fully-tapped by my siblings. Since I was the 'good' kid (ie: sheltered and obedient), I was expected to be understanding -- and to not need their help anyway. I stopped thinking their help/guidance was an option for me long ago and have been fiercely independent ever since.

It'll come as no surprise that I don't have a relationship with either of my siblings at this point. We do not talk. We haven't seen each other in nearly 2 decades. I am perfectly OK with this and have felt no desire to seek out any kind of relationship with them. My relationship with my parents remains intact but strained for various reasons. Despite keeping in touch fairly regularly, they know very little about me or my life over the past decade. Not from a lack of trying/sharing -- but because my parents quickly steer the conversation back to themselves or my siblings.

That all said, home for many people is a place where you can be yourself, deriving a warm, fuzzy-like comfort from the knowledge that you're loved, supported and safe as you grow up, make mistakes, learn, etc. For me, home didn't really offer any of that; the impact that had on me is monumental -- every facet of my being can be tied to the various coping strategies I developed in order to survive in such a turbulent environment. And the climate of that environment can overwhelmingly be attributed to the actions/behaviors my siblings engaged in as a response to my illness.
posted by stubbehtail at 4:01 PM on July 17, 2015 [4 favorites]

My family was close friends with another family that had a situation like this - they had three kids, and one was "medically-complex." I actually think it was WAY easier that there were two other healthy/normal kids, because they had each other for comfort, entertainment, to vent to, to sympathize with. I can't imagine how lonely it would be to be the other sibling if there were only two of you. So -- if you have another, maybe have two more?
posted by amaire at 5:22 PM on July 17, 2015

Response by poster: Thanks so much for sharing your stories, each and every one of you. I really appreciate you being willing to share such personal details.
posted by Maarika at 6:11 PM on July 17, 2015 [1 favorite]

Hey! I was the medically complex kid in a family of three (fine now, but was in and out of hospitals very often from between ages 3 and 13).

For my older sister, it was not as difficult - she understood everything that was happening, and, once my other sister was born had a buddy who she could hang out with while I was in the hospital. For my younger sister, it was much, much more difficult - she would get jealous of my "special doctor" and how much time I got to spend with my parents going in and out of children's hospitals, especially when she was very young. As she got older, she had a better understanding of all the medical stuff I was going through but still had a hard time with it. Our relationship definitely had a lot less tension when I stopped needing so much medical care, but I do think it was hard on her.
posted by superlibby at 6:11 PM on July 17, 2015

Our younger child was medically complex for a few months this winter, though we are lucky that she's stabilized after receiving the correct diagnosis. The thing that helped the most for our elder (aged 4) was having a dedicated adult to care for him while his sister was in the hospital. Being handed off from one parent to the other at the hospital (so the hospital parent could go home and shower and sleep in a real bed) was very upsetting to him, especially as he wasn't allowed in her room. Having a trusted sitter take him to preschool, pick him up, feed him, bathe him, and dress him for bed was life altering for all of us. Parents traded off at the hospital in peace, exchanged relevant information, and went home to a relaxed happy kid. It wasn't so hard to muster the energy to cheerfully put him to bed like nothing was wrong if we didn't have to do all the other stuff and he wasn't overtired, hungry, and screaming. It's expensive as hell to pay for full time daycare plus a nearly full time after school/evening sitter, but we have her on call for sick days and it means we can handle hospitalizations.

We were mostly able to shield Micropanda from our stress, but it certainly helps that he's young and doesn't know there's any possible outcome of going to the hospital besides 'you get well and come home'. An older kid might have objected to Valentines day lunch in the hospital cafeteria, but he didn't; and he politely agreed to reschedule Easter for sometime in June. (That said, the donated Easter baskets - for baby AND big brother - we got from the hospital were amazing for the kids and SUCH a relief for us because I just did not have it in me to do anything for him. I am so grateful to the people who donated those silly amazing Easter baskets. It made his month that the Easter bunny was so proud of him for being considerate that he left this overflowing Easter basket at the hospital, full of all kinds of things he would never in a million years be allowed to have, but eat up, we are just so grateful. Which is a convoluted way of saying that some of your holidays will get messed up and you'll all have to learn to roll with the punches. Easter in June was lovely, by the way; a perfect warm morning to hunt eggs in the garden.
posted by telepanda at 8:39 PM on July 17, 2015 [2 favorites]

My little brother had kidney deformities that put him in hospital for extended periods and he was catheterized through his obdomen for his early childhood. The worry and strain was hard on all of us. I put a lot of pressure on myself to behave impeccably and this era was certainly the root of my obsessive compulsive issues (walk around the "proper" side of a phone pole -or else he gets sicker). That said, I believe a great deal of induvidual personality is genetically hardwired, so I think I'd have turned out this way regardless. Still, it's still difficult to talk about sometimes. Took my parents' attention away during an important time.
posted by bonobothegreat at 10:43 PM on July 17, 2015

This book (I Have Needs Too) is based on interviews asking school age siblings what they wished their parents knew about their experience, along with advice from a therapist about what parents can do.

You can find more sibling related stuff at the Sibling Support Project although they seem to have discontinued their curated reading list. (SSP published the paper that doctordrey linked to above)
posted by metahawk at 5:44 PM on July 29, 2015

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