This blog is based on an interview with Julia Robert for our Just Needs Podcast. You can listen here.
Tell us about your experience advocating for your children in the hospital and other medical settings.
My husband and I have been together 35 years. Our two adult children are 24 and 22. Both were born with a rare genetic disorder that includes a couple of kidney diseases, a liver disease, a vision disorder, and an underdeveloped cerebellum, which creates some processing disorders and affects their reading. So they’ve had IEPs since they were in school… We’ve had a lot of other meetings, reboot meetings, emergency meetings… And because of the medical issues, there has been a lot of childhood trauma. And so there were a lot of mental health issues that we needed to manage with them too.
My son was in dialysis, they both had kidney transplants when they were eight, and then recently they each had another transplants. My daughter, a year ago in July, had a kidney and liver transplant, and my son had a kidney transplant [last winter]… Now our daughter’s in school, and she works at a preschool, and our son is just getting over his transplant from the beginning of the year, and so he’s looking for his next step as well.
What have you learned about self-care while parenting medically complex children?
We have had A LOT of appointments…. more than 200 meetings at both of their schools over the years… and when they were teeny tiny, at one point we had 13 appointments a week between the two of them, between OT, PT, feeding and speech and vision. So I have some tips.
1. Find ways to take real breaks
We made one day sacred… I just never made an appointment on Thursdays. Thursdays we stayed in our pajamas. We didn’t go anywhere. If somebody wanted an appointment on the day, we would always say no. It not only gave me a break, but it really gave them a break, just a mental break in the middle of seven days to let them recharge.
2. Make things easier on yourself.
A few years into it, I just decided to try to make my life easier, and I started using paper plates. I really relaxed my rules and my standard of what I wanted, which was for us to sit around the table and have a dinner like June Cleaver. And it really wasn’t that. Our son had some behavioral issues because of the mental health situation, and we were just happy to even be in the same room sometimes. We didn’t need elaborate dinners. I was happy to have cheese, crackers, and some fruit, or soup and sandwiches if it was easy. And I decided that that was okay.
3. Ask for (and accept!) help
With medical and mental health issues, you can’t always say what your day’s going to be like. There could be… a three-hour behavioral situation. So you just triage. So I was never afraid to call in friends. I am a super asker for help. I don’t have any qualms about accepting help or asking for help.
If someone is in a situation where they have an intense life, an intense parenting life, that is probably the number one thing they should work on first, being okay with accepting help in whatever form that comes.
A friend of mine isn’t really a baby person… But she could do some grocery shopping and she could drop presents off in the mail and she could arrange a lawn guy to come take care of our lawn. So people can help in different ways. And I always had a little list handy of what I needed done.
My mom explained it to me once, she said, “Well, help and friendships are like a river. Sometimes it’s wide, sometimes it’s narrow. You have to throw [a raft] across. Sometimes you don’t need anything, so they can be far away. And you would want to help somebody if they were in need. And so you have to let people help you when you’re in need. It’s hypocritical to only do it one way.
4. Be open about your struggles – even when it’s hard to do.
I think all of my friends will tell you I’m a very good asker of help and accepter, because I often pull them into our lives. And I think that’s why I am so open, and that’s why the kids are so open. We just have a big group of people who care about us. And I think getting people involved in your life [means telling them] what’s going on. If they don’t know that you’re struggling then they don’t really know where to help.
And so we are not private. We don’t tell everything of course, there’s a lot people don’t know, but we have always been public. We started being public with the medical challenges. And then when the mental health turned into something, we really didn’t feel like we could hide that because then that would’ve been telling the kids that it was shameful and that it was something to hide.
This was 2010. And so a lot more is talked about right now about mental health. And so we were kind of on the front end of that, and it was difficult, but it also really taught a lot of people. I’ve had people in the last 10 or 15 years tell us that they think about our situation when they see a friend going through an issue. They don’t shy away from people who have traumatic mental health issues in their family, which is often isolating.
5. Keep your emotions on an even keel
I think we were really good about figuring out how to not let our emotions get too high or too low. With liver and kidney disease and mental health there’s always a lot happening.
So for us, that means we don’t get too depressed when things don’t go our way, because a lot of times they don’t. And we don’t get super excited when things are going great. We really try to keep our emotions even keel. It’s a long haul when you’re talking about… being an advocate for your child for the next 20 or 30 or sometimes 40 years.
6. Pace yourself
To me, this really means taking it one day at a time. We have to look for fun, beautiful things because your kid and your family still need birthday parties and celebrations and holidays and get togethers and family picnics. So you can’t let [illness] overwhelm your life, even though it is overwhelming. It certainly has been for us, but the reason we are able to deal with it is because we’ve been able to accept help from family and friends.
7. Try not to let trauma stop everything else
I think some people have been shocked by the way we’ve been able to handle trauma, but it has helped for us to keep moving. For example, when our son was 10, he had to be admitted into a mental health facility, and it was really traumatic for all of us. And my husband was supposed to leave the next day for a business trip, he was supposed to leave the next day, and he’s like, “I don’t think I should leave.” And I said, “That’s not how we do it. We keep moving. You have to still earn a living. We have another child. We have to keep moving.” And so we just keep putting one foot in front of the other.
We try not to let the trauma halt things personally for our relationship, for our own personal growth and our own personal satisfaction and reward. I remember I was in a therapy session maybe 19 years ago and I was talking about some of the volunteer things I do and the therapist said, “Why do you do so much volunteer work? You can give some of that up. Your life is so stressful.” And I said, “I’m not willing to give up what I want to do for what I have to do. I still want to do what I want to do.”
And so my job is to find out how to make that possible and cut the corners where I can so that we can still have a life of meaning, a life of purpose, and also make it so everybody in the family has what they need to be adjusted nice humans. We’re in it for the long haul and we figure out the things that are life sustaining.
It’s okay to be somebody outside mom, advocate, activist, IEP meeting leader, all of those things. Boo-boo kisser, med dispenser, all of those things are super important. And I find those extremely rewarding because my kids are doing well, but I still want to be Julia who likes to sew and see movies and see her friends and go to the beach.
As your kids have gotten older, how have they started to advocate for themselves?
I would say we started really letting them be in the decision-making early, but definitely talking to doctors at 10, 12, I would leave the room, let the doctor talk. So really just trying to give them some autonomy. A lot of times we would do appointments together, because they have the same kidney doctors, same liver doctors, et cetera. So the two of them had appointments together, and I would insist on separate rooms for them because I just wanted them to be able to feel like they were each one person with a doctor.
Also, I let them take the lead and I help them where they need help. They have 20, 25 meds twice a day. They have multiple appointments a week. They manage two different portals for their healthcare, multiple lab appointments… I would say the hardest part is the appointments and insurance. And they prefer for me to get those calls and then include them.
They’ve just moved from Children’s Healthcare… to adult hospitals. That means a whole new system, a whole new team. All new numbers, all new hospitals, all new way to do things. And so I was new at it too. And so we’re learning together.
