Care and Feeding

My Daughter’s Doctors Are in Uncharted Territory

How do I help them treat her better?

A 17-year-old in a medical gown.
Photo illustration by Slate. Photo by Getty Images Plus.

Care and Feeding is Slate’s parenting advice column. Have a question for Care and Feeding? Submit it here or post it in the Slate Parenting Facebook group.

Dear Care and Feeding,

Our 17-year-old daughter has a chronic illness that kids rarely used to survive. We’re so happy that medicine is catching up rapidly and now there are starting to be lots of people who are living in remission well into adulthood, but it’s very new.

Advertisement

With medication and monitoring, she’s hitting all the normal milestones for her age. Unfortunately, her care isn’t. Her hospital team is made up of pediatric specialists, her primary doctor is a pediatrician, etc. These are all the people who have a deep understanding of her illness, and there isn’t an adult team to transition her to because adults haven’t historically survived. When she wanted sexual healthcare, we couldn’t find an adult doctor comfortable taking her on with her illness.

Advertisement
Advertisement
Advertisement

In the coming two years, her peers will get a lot of freedom that she won’t. How do I help my daughter feel like she’s an adult, even when she will have to be in kid spaces for the foreseeable future? She tries to laugh it off when things get weird, but she’s mentioned multiple times that she feels like she’ll never be a “real adult.” Between pediatric doctors, limited college choices because she will need to live at home, and being treated like her normal late-teenage dating and experimenting is somehow wrong (because her doctors are used to working with 11-year-olds), I just don’t know how to help her feel unstuck.

Advertisement
Advertisement

— From Surviving to Thriving?

Dear Thriving,

I’m happy to hear about your daughter’s health prospects. Medical miracles aside, though, it‘s very hard to be a trailblazer when you weren’t planning to be one.

It’s hard to give precise advice without knowing the specifics of your daughter’s situation, but based on what you say here I’d say the best thing you can do is aim to give her a tailored version of the things that teens and young adults naturally crave: independence, risk, social relationships, a sense of identity, etc. For instance, if it’s safe for her to do so and if she’s able, encourage her to get a job or a volunteer position. That will allow her to participate in her community and practice her independence. Looking ahead, when she is 10 minutes away at college, act as if she is four hours away instead. In terms of her medical care, can you talk to these doctors and reinforce your daughter’s desire to not be infantilized? (I am a little concerned at your intimation that they will not be able or willing to adapt their caregiving to her age.) These small adjustments and advocacy from you all can help ensure that her ongoing medical care will simply be part of her story, not her defining characteristic.

Advertisement
Advertisement
Advertisement
Advertisement

I’m not sure your letter is seeking any advice on the medical side of things, but I took the liberty of picking the brain of a doctor friend of mine. For what it’s worth, he noted that doctors are increasingly willing to conduct care through telemedicine, though they often require seeing the patient in person first before they transition to telemed. So, if there is any chance you can find other children who are surviving this condition into adulthood (I know it’s rare, but even one or two might help), do you have the financial resources to seek out these same doctors to care for your daughter? Even if they wouldn’t be willing to take on your daughter permanently, maybe they could do so while you keep up your search, or they might be willing to consult with someone more local to you. Additionally, he wondered whether there might be a society for your daughter’s condition, or even for her condition’s medical specialty (i.e.  National Brain Tumor Society, Orthopaedic Research Society)? You might be able to find doctors through them. If you’ve already tried all these angles, I’m afraid you might just have to meet a bunch of doctors through trial-and-error to find one who has the attitude, collaboration, and creativity that your daughter needs. I’m sorry, it probably will be far from easy, but it is worth it if it helps your daughter feel she has a doctor who will advocate for her in the long run.

Advertisement
Advertisement
Advertisement
Advertisement

Catch Up on Care and Feeding

• If you missed Sunday’s column, read it here.
• Discuss this column in the Slate Parenting Facebook group!

Dear Care and Feeding,

I live in Europe, and I have a longtime childhood friend who is a former refugee. She’s not a refugee anymore, but she spends all her free time volunteering, translating and being as helpful as she can for current refugees.  She eventually collapses, usually for a day or so, and then gets up and gets right back to it. Her personal relationships have taken a hit, and her home is overrun with people who she cannot in good conscience kick out. Her life is hellish but if she wasn’t doing what she was doing, she’d be even worse.

Advertisement
Advertisement

I am trying to help. I’ve offered to take in extra people (causing friction between me and my partner and kids), I always answer the phone when she calls, and I never fail to find what I can when she asks for something she needs.

But I can’t take the stories anymore. I know the world is full of pain and suffering, and I know that it has always been thus, but I am literally throwing up almost every other day after sitting through some horrible description or reading something she needs edited for documentation (she’s helping document war crimes, and these are the most horrible, awful things to have to write up and sift through; I’m almost sick thinking of them). I’m a shell of the person I once was and my partner is not furious but he is reasonably irritated with me and sad that I’m so depressed in private. (I try to fake cheerfulness when others are around.) But I know it is worse for my friend, so why should I be able to turn off when she can’t?

Advertisement
Advertisement

What is the balance here? How can I be there for my friend, who works until she physically falls to the floor in some sort of seizure, and not just want to kill myself? I am skinnier from the vomiting in a not nice way, but I find it somehow the only way to push through after editing some of these horrible accounts. It’s like I have to get it out of me somehow, like an exorcism on myself before I keep going.

Thanks for any formula on balance you can offer. I can’t keep this up (but then, if not me, then who? It’s not like these tragedies are going to stop).

Advertisement
Advertisement

— Vomiting Out the Bad Stuff

Advertisement

Dear Vomiting,

My dear letter writer, you aren’t the first person to experience intense trauma from their work in human rights, but you need to seek professional help for yourself immediately. It is so very admirable that you are pitching in on this critical, heartbreaking work, but you cannot lose yourself to it. You alone cannot stop the awful things that humans do to other humans, but you can stop it from taking this large a toll on you.

Advertisement
Advertisement

You keep comparing yourself to your friend; that is unfair. You are two different people with very different backgrounds and demeanors. Why should her supposed fortitude mean you must have the same strength? She may see this work as her calling, while you do not. You have children; does she? Perhaps she can give so much of herself because she doesn’t have others who also need her focus and presence. You can’t. You have kids who need you to be well, and a husband who needs his partner back. And your body needs you to stop vomiting.

Advertisement

Pause your refugee work immediately and find a therapist who can offer you some intensive therapy about what you have seen, heard, and read. Do not return to volunteering unless under a therapist’s guidance, though you might consider not returning at all. Work with this therapist to figure out how best to support your friend. Again, it is so admirable that you want to help, but it cannot be to this level of detriment to you. Remember, no matter your privilege relative to the people you are helping, you matter, and your wellness matters, and you are allowed to take care of yourself.

Want Advice From Care and Feeding?

Submit your questions about parenting and family life here. It’s anonymous! (Questions may be edited for publication.)

Advertisement
Advertisement

Dear Care and Feeding,

My husband and I recently had our first child after undergoing infertility treatments and IVF. This is the first grandchild on all sides of the family. We live a few hours away from my family and each set of my husband’s divorced parents. I understand that they aren’t close enough to visit as often as they’d like, and, given our fertility issues, they understand that this might be their only grandchild. However, the demands for photos of our child is driving me insane. At first, it was fairly easy to catch some sleepy newborn snaps and send them along, but now it seems like I’m either cleaning up a dirty diaper or trying to soothe a screaming fit every time I get a message that asks “any new cute pics today?” and it fills me with anger and frustration. We don’t use social media and have asked that they don’t post pictures of our family without our consent (we’ve heard that they do anyway), and one of the grandmas constantly forwards us pictures of other children on her side of the family that we barely know, so we can safely assume she’s distributing what we send to her as well. I will also point out that no one asks my husband to send pictures, just me.

Advertisement
Advertisement
Advertisement

— Not a Photographer

Dear Not a Photographer,

There is no hunger greater than a grandparent’s desire for grandkid photos and videos (and fair enough, because our kids are adorable, right?) But it’s also maddening to answer their beck and call when your immediate surroundings are taking up all your attention and energy. So, I get it. But I get them, too.

It’s really important to remember that this is all coming from a place of love and joy, even if it’s driving you completely bonkers. It is unfair to get upset at them for wanting to soak in as much “grandparenthood” as they can, which naturally involves watching the grandchild explore their world and bragging on the kiddo to their friends, so your job (sorry, you have yet another job, welcome to parenthood) is to find the ways they can have those moments in a way that puts the smallest burden on you.

Advertisement
Advertisement

Think about how can you manage the photos in a way that keeps you sane and them connected. Perhaps you can start a “grandparents” group text so that you can send the photos once for everyone—and also so they can see when someone has already asked for photos and thus avoid piling on. If that’s cumbersome, you could try a photo sharing website like TinyBeans (which is specifically geared toward sharing photos and stories of babies as they grow) or a simple Google Photo shared album. You could set yourself a reminder every night (or every Wednesday and Sunday, or whatever) to upload photos there. As to your husband, make sure he is included in any of these solutions too, so that there is the opportunity for him to share the responsibility.

Advertisement
Advertisement

Regarding your suspicion that they are sharing images with their friends, again the question you’ll have to ask yourself is how you can let them enjoy the spoils of grandparenthood in a way that makes you comfortable. Personally, I’ve never felt the “don’t share pictures” directives were particularly fair or realistic, and I sense from your letter that you really don’t want to be replying to a dozen “is this ok to share” texts. So again, are there compromises you can ask them to observe? Maybe you can ask them to limit the number of photos, or maybe you ensure their social media profiles are private so that photos are only shown to known contacts.

The digital landscape has made boundaries really hard to navigate, and there is no right answer on how to operate on that front. But I think finding a way to meet their needs within the boundaries that make you comfortable is your best shot at preserving your own sanity while also sharing the joy. Good luck.

Advertisement
Advertisement

Dear Care and Feeding,

I’m not a parent, but I provide my mother with a lot of free childcare for my much younger siblings (I’m in my mid-20s, they’re 10, 8, and 5 years old). The kids are great for the most part, and I’ve gotten to the point where I know what works with them. The problem is other people’s kids.

Advertisement
Advertisement

Lately we’ve really been emphasizing using “kind words” with each other to cut down on sibling fights. It’s been working! But the kids who live behind my mother’s house, who are also 10 and 8, are just not nice. They’ve always picked on my younger two siblings, and this often ends in tears and various kids getting grounded. I thought it had gotten better, until this weekend, when my 5-year-old sibling came in saying ’[Neighbors] and [Sisters] aren’t using kind words!” Things escalated (more unkind words, they climbed the tree in our yard and started throwing mulberries) until the neighbor kid’s mom came out and yelled at her kids, which I also felt bad about.

Advertisement

How should I have handled things? In the past, these children have ignored my interventions, saying “You’re not anyone’s mom!” What are some strategies for dealing with unkind, unreasonable peers that I can impart to my siblings while I’m their main babysitter, without encouraging them to be sassy or mean? Also, how do I diffuse the neighbor kid situation? It’s not fair that our kids can’t use the yard because their so-called friends will be mean to them.

— How Nice is Too Nice

Dear How Nice,

First off, if the yard in question is your family’s property, these kids need to learn that just because there isn’t a fence doesn’t mean they can come in anytime they want. And they definitely shouldn’t be climbing the trees without your permission, lest they fall (hello, lawsuit). If it’s a shared yard space, then unfortunately you have less ground (pun intended) to stand on in terms of enforcing boundaries.

Advertisement
Advertisement

It doesn’t matter if you are anyone’s mom or not. You are an adult and in charge of your siblings and thus an authority figure. However, you might need the help of an “actual mom” to get that across to the neighbor kids. Your mom needs to talk to their mom and ask her to establish firmly with her kids that you are a caretaker and someone to be listened to. (Since you mention the neighbor kids getting disciplined, it sounds like the neighbor parent might be a willing ally here.) Once that is done, you might be able to get through most of the kids’ conflicts with the classic “I will call your mom” threat.

Advertisement
Advertisement

That won’t be a silver bullet though, so you also need to establish with your siblings that as soon as anyone is being mean to others or not respecting people’s play wishes, they all come inside. Yes, it stinks that they may have to stop their preferred play because someone else was ruining it, but that is a life lesson for dealing with people that they may as well learn now. I suspect, though, that it may have another benefit, in that it will rob the neighbor kids of what they most likely want: social interaction. With consistency, the neighbor kids may very well get the message that they catch more flies with honey, so to speak. And if they don’t, your siblings will at least learn that they don’t need to stick around with anyone who disrespects them.

—Allison

For More Parenting Coverage, Listen to Mom and Dad Are Fighting

MEGAPHONE with most recent ep codes (can be found on most recent episode page; just open to edit in Clay and open the player component there and copy the codes over).

Advertisement