I know this will embarrass them, but I regard Kristen Davis and Marc Cerabona much as I see marathoners and professional musicians. They take something that many of us do — parenting — and elevate it to a whole different level. Watch Jesse Costa’s beautiful video above to see them in action.
This is the final — for now — installment in WBUR’s multi-media series, “The Life of Riley: A Rare Girl, A Rare Disease.” Riley, Kristen and Marc’s 9-year-old daughter, has CLOVES Syndrome, which makes “lumps and bumps” grow on and inside her body — from benign but big tumors to potentially life-threatening blood vessel malformations. We’ve explored the joys and difficulties of Riley’s life; the science behind her diagnosis; and the experimental drug that may offer an alternative to repeated risky surgeries. The full series will live on here, and be occasionally updated in the coming months.
The American Academy of Pediatrics estimates that 15% of American children — about 11 million in all — have “special health care needs.” Special needs tend to demand special caregivers. Today, we look at the virtuoso parenting that has inspired such admiration in Riley’s doctors that they hope the family can be studied in order to share their resilience lessons with others.
How do they do it? I pestered Kristen and Marc with this question in a dozen different forms. How do they bear the fear and anxiety? How do they suffer the sleep deprivation of getting up at night to help Riley with her breathing machine or her blood sugar? How do they divide the unforgiving labor? How do they keep a family — endlessly demanding even under ideal circumstances — afloat and even frequently laughing through one medical crisis after another?
I asked as a parenting wimp who freaks out at every fever and drags through the day if woken even once at night. I sat at their feet, grateful for their candor, and came away with a dozen lessons. Our conversation, edited and distilled.
1. Accept your lack of control
This has been the hardest part of parenting for me. I was never an anxious person, largely because I figured that whatever happened to me, I’d somehow handle it emotionally. But that’s no consolation when the wellbeing of my child is at stake. It’s not about me. I just want the kid to be okay. What matters most to me in the world is out of my control. How, how, how, I asked Kristen, do you handle the perpetual medical limbo in which you’ve lived?
Kristen: That’s been a whole process, because my natural place to go is to be very organized and type A. So that’s been a whole relearning process for me about how not to be that way and just kind of go with the flow.
I think I’m way better than I used to be at that, but it’s really, really hard. If it were just me, it would be easier, but there are multiple people who are impacted by the limbo. So it’s a struggle — a struggle not to know what’s going to happen.
I think I’ve become much better able to identify what I can control and what I can’t, and when I just have to kind of see what happens. I don’t feel like that’s defeatist or anything. I feel like that just makes sense.
So how do you cope with the fact that something that you can’t control means everything to you?
I don’t have an answer for that. We’re living it.
Do you get used to the drama and fear, or does it get worse?
We’re used to the drama, and I think in some ways that makes it easier. In some ways it’s just really depressing that we know what that’s like and we have a repertoire to deal with that when it comes up.
We are absolutely conditioned to it. And I think a little numb to it. I always say that like six months after the last crisis is when I have my own meltdown and regroup, and say, ‘Oh, yeah, that really sucked and here’s why it sucked and I wonder if we can do this other thing next time.”
Marc, how do you deal with the uncertainty?
Marc: The only way I can answer that is that I just kind put it aside, and wrap it up in a little box and try not to think about it too much. And I’ve probably gotten much better at that, having Riley as a kid. And even when we’re sitting on those long surgery days, I try not to think about what’s going on and just kind of pass the time, pass the hours.
2. Accept that people cope in different ways
Kristen: There are ways that Marc and I deal with things really differently. I think we’ve learned a lot from each other about how to get through this. We both have our own set of coping skills.
What have you learned from Marc?
Sometimes you just have to let things be. He’s a way better compartmentalizer than I am. I think that’s a good skill to have in the toolbox.
I think he helps me when I want to go into crazy mama bear mode. He helps me tone that down. I think I’ve toned that down in some ways for myself as well, because it’s not always helpful to go into crazy mama bear mode, although I want to some of the time.
What does ‘crazy mama bear mode’ look like?
Just to be really demanding of doctors or care providers or school. One of the things we’ve done well is develop long-time, relatively healthy relationships with medical providers, school providers and friends and family and community, which is invaluable.
Marc: I think most of the time we’re a pretty good yin and yang for each other.
I sort of internalize it all and compartmentalize it all. I’m more likely to wait until we have all the news. I don’t make as many of the leaps as Kristen does. I’m not as likely to be the over-Googler, finding out all the terrible things that could come from what we just found out.
So while she gets that sort of reserve from me, I would never have caught what she caught in the MRI report. [While going through Riley’s medical records in 2010, Kristen picked up an MRI finding of a new growth that Riley’s doctors had failed to mention.]
She’s also much more able to express her feelings, and that’s something I’ve learned is valuable, to help let go of some of the anxiety and the pain of experiencing all this for Riley, what she has to deal with. That’s something Kristen models very well for all of us, for the kids and me: That your feelings are okay to have.
3. Call on help
Kristen: We have a great support system. When we call, they all kind of rally, and I can’t imagine not having that.
Our approach is to talk about things and to put things out in the open and ask your helpers for help, be it your spouse or your mom or your grammy or whatever, but everybody needs help. We’re really upfront about that, and I model that. Riley’s learned a lot of that.4. Openness and honesty
Kristen: What we’ve taught Riley is that it sucks that this happened to her, and that there’s no reason, nobody did anything wrong to have this happen to her — to take the blame off, or anticipated blame. She went through a period of ‘It’s all your fault, Mom.’
We acknowledge that it’s hard. We acknowledge that it’s unfair. And then we also talk about what’s good still. That’s how we have tried to model that.
When Riley was four, she had major surgery that left her confined to a metal “halo” screwed into her skull for weeks. She explained it openly to her preschool-mates.
Marc: She was in a fantastic preschool, Cocoons, that allowed her to do everything she could do while keeping her safe. They were not afraid of the halo at all, which was great. They had a special time where she could sit and tell everybody –
Kristen: — ‘Why I’m wearing this metal device now.’ And they could ask her questions.
Marc: A lesson Riley and we learned early on is that it’s better just to talk about it with your friends and classmates, so we get rid of all the questions and weirdness. She’s done that over the years whenever she comes to new classrooms or a new group of friends: ‘This is why my arm doesn’t work.’ She’s very upfront about talking about it. We’d always rather have people talk about it than having people wondering.
Kristen: ‘Do you still have dreams in the halo?’ That was one of the questions she got.
What have you seen Riley learn about handling her feelings?
Marc: It’s interesting because she gets very angry, and Kristen bears the brunt of her being angry about the things that happen to her.
Kristen: I think it’s so interesting you started with that, but keep going!
Marc: But at the same time, it’s like, once she has expressed that anger in that situation, then she’s very good at going on and doing whatever she needs to do. I’d never say she’s compliant, because she definitely makes you work for it, but by and large she has done everything we’ve asked her to do. If you have to do physical therapy, she may not like it but she does it. And that’s really been a big part of how she’s recovered.
How about Cole, Riley’s older brother?
Kristen: He’s the one who gets left behind, and he says that.
Marc: That’s a recurrent theme for him, he gets left behind.
Kristen: But he’s turned out to be a lovely human being. And there have been many points in this process that I’ve been anxious that we’re going to break him. Just because he’s missed out on a lot.
5. Divide and share: Labor, support, appreciation
Marc: I’ve often said that I think Riley’s incredibly lucky to have Kristen as a mother.
I said once to Kristen that I think she was made to be Riley’s mother. Because while she can certainly get frustrated and upset and as she likes to joke — at least I think she’s joking! — that she’s ready to leave for New Mexico at any minute, she provides exactly what Riley needs to get through this. And sometimes that’s being tough and sometimes that’s being caring and that’s always being on top of the medical stuff.
She does all that incredibly well. I think a lot of people kind of look at her and think, ‘Wow, how does she do that? How does she manage to do all that?’ And I think for her, it’s just what you have to do.
You just don’t think about how much more care goes into a medically involved child. For me, I’d say there’s nothing like a trip to Children’s to make you realize that no matter how bad you think you have it, somebody always has it worse. You see parents dealing with things I think would be very difficult.
We’ve always been thankful that through all of this, Riley has been verbal. Whether she’s mad or sad or happy, she can tell us what she’s feeling. I’ve always thought it would be incredibly difficult to do this with a kid who’s nonverbal and couldn’t express that.
Riley missed out on a lot of things when she was younger: She never played T ball, she never played youth soccer because she was trying to learn how to walk again for the third time or in a halo. It’s really nice to be able to watch her be able to do those things now, and enjoy that.
How much do you take turns at things?
Kristen: Sometimes I say, ‘I’m going to have a meltdown now so you need to not have a meltdown.’
Marc: I think we do a good job kind of sensing where one of us needs to step back and where the other person needs to step forward. Both in terms of providing care but also in dealing with the doctors, and mental health breaks.
When Riley was in the hospital for a really long time we’d switch off every few days. By and large it’s because we’ve had the support that we could do this. We’ve done all of Riley’s really big medical stuff together. If there’s a surgery, we’re both there for the whole surgery, we’re both there for however long she needs to be there. We have somebody to watch Cole [Riley’s older brother] and bring him down.
During Riley’s biggest surgery, in 2008, she was in the Children’s ICU for five weeks, and then in rehabilitation at Spaulding for another five.
Kristen: I know it was hard for Marc and me, for our relationship, because we were essentially passing in the night a lot of the time and a lot of shifts. It just felt like continuing to get hit by bad news. Eventually it turned around, but it was a rough, rough period.6. Offer the child choices to counter feelings of powerlessness
Kristen: I think she’s on to us now, but when she was younger there were always choices, even though they might not really be choices. Do you want a blanket in the MRI or not a blanker? Do you want mom or dad to come with you into the room?
Marc: Do you want to watch a movie in the MRI or do you not want to watch a movie?
Kristen: Do you want your treat before or after you get blood work taken?
It takes a huge amount of planning and energy and emotional reserves on our part. But there are always ways to let her have a choice and to let her feel like she has some power.
7. Accept occasional meltdowns
In 2010, when Kristen was going through Riley’s records and picked up a new growth on Riley’s spine that had somehow fallen through the medical cracks, it brought on what she calls a “royal meltdown.”
Kristen: What does my royal meltdown look like?
Marc: I think there was yelling and crying and screaming and emails in all caps and all of the above….I just want to point out again that 99 parents out of 100 would not catch that. First of all they wouldn’t have ordered the records to begin with; they wouldn’t have read it all; and they couldn’t have caught the significance.
Kristen: I really struggle with that. Is that my job? Is it their job? I want to have faith that they’re doing their job, but they didn’t do their job, so is it my job to be extra vigilant about that? I have enough to do besides reviewing record that I barely understand.
The trouble is that maybe even the best doctors in the world don’t care as much as you do…
Marc: No one’s ever going to care as much about everything being right…
8. Laugh, even if darkly
Humor — though often darkish — seems to lighten your way a great deal. You have your super-duper victory handshake after Riley gets through a procedure. You laugh about how horrible it was to get bad news. You have a secret method that I’m not at liberty to reveal about how to get the doctor to come when you’ve been waiting a long time…
Kristen: Laughter is therapeutic. Being silly makes things lighter and more fun. The dark humor we share is part of how Marc and I cope together, in a similar way.
9: Self-care, cut back on outside commitments if need be
Kristen: I do a lot of things that make me happy and that keep me grounded and sane. I take time to myself. I know that having time for myself is really important to me.
What’s hugely therapeutic for me right now is not being a social worker any more. I felt a huge shift in my ability to just kind of be present and not be trying to hyper-plan everything. And I think that’s just because I have more energy to focus on myself and my family. I’m not having to take care of all these other people, who are lovely people but it’s a hugely exhausting job and I did it for 12 years.
There was obviously a lot of negotiation with Marc about how to make that work, because he’s self-employed and my job had the health insurance. But we made the decision to do it because it was going to be better for our family.
So how do you make it work financially? Isn’t your health insurance through the roof? Co-pays? Deductibles?
Kristen: We have cut back on anything that isn’t a necessity. Marc takes any projects that he can and bears the brunt of the work load. I work part-time from home, which works for our flexibility needs. Honestly, it doesn’t work financially. There are bills that don’t get paid and our credit is in the hole. Riley is covered by MaineCare [Maine's Medicaid program] but it’s “secondary” insurance: The general rule is that as long as the primary insurer has paid for part of the cost, MaineCare will pick up the rest. And our primary health insurance is $1500 a month, pre-copays/deductibles. We have to make choices about who gets paid and who doesn’t. We have no savings….Not pretty, but the truth!
10. Keep searching
Kristen: We always continue to look for answers and other treatment options, even if it seems that there aren’t any. Right now we are looking for:
1) Options for paralyzed arm treatments (that haven’t been tried).
2) How to develop a prosthetic/robotic sleeve (For the silly left arm, like an amputee would use a prosthetic.)
3) I had a conversation with a doctor in Wisconsin who was recently awarded a huge amount of money from the NIH, as he accidentally discovered some of the gene mutations present in vascular anomalies like Riley’s. He is interested in developing additional treatments for kids with complex vascular anomaly syndromes. We are always thinking to the future.
You were the ones who got Riley into the Children’s clinical trial where she’s now trying an experimental drug, right?
Even with the best medical team for this syndrome, we were the ones who did the research that got us connected to the trial.11. Create the patient/family community you need
Marc: The Cloves community happened very organically. When people were new to this, and needed information, one of the things the Vascular Anomalies Center at Children’s did was refer them to Kristen. It became apparent that we should connect everyone together rather than have everybody connected to one person.
Kristen: Join with others facing similar struggles. There is power in community, support for families, and hope in our stories.
12. Never give up
I asked Riley what she would advise a younger child in a hospital who was in a position like hers. She replied: “I’d say, ‘You’re going to get through it, and you’re going to have to eventually do this at one point, so just relax and do it, and it’ll be over.”
The plot line of Riley’s medical problems seems to have a sort of crescendo: Things started out kind of small and then got worse and worse. It’s almost like you were in training. It reminds me of when people say, ‘God only gives you what you can handle.’
Marc: That goes down as one of my worst things you can say to a parent. It absolutely is.
We also sometimes have to catch ourselves in that all this has made us a little sensitive to people complaining about their own lives and how tough things are. If you’re going to feel sorry for yourself around us, you’ve really got to bring your ‘A Game,’ because we’re not going to let you off easy.
Kristen: Things don’t always get worse. I’m happy to report that we are (finally) building raised garden beds this weekend — something we’ve wanted to do for a while, but life got interrupted. We didn’t do it last spring because of Riley’s surgery, but we are doing it now. The box is built, the dirt and compost delivered, and the plants will be purchased…