Your support system will likely be composed of three categories: daily support (reminders, calendars), medical support (in-home services), and emotional support (groups, friends and family, self-care). Here are some questions to ask yourself while getting started:
Heather tells us that emotional support is a priority because it provides a sense of belonging. Having a “secret world” of medical families helps alleviate feelings of isolation, helps process emotions, and provides practical support for things like sharing supplies during shortages. Heather also emphasizes the importance of emotional support for the whole family, providing understanding, coping mechanisms, and a space for empathy and expressing feelings.
While having conversations with family and friends about your child is a next step in settling in, it may not be the easiest conversation. As Heather tells us, most people won’t be able to understand everything you’re going through, and some may even be offensive or judgmental — whether they intend to or not. “We went into it knowing that and expecting that and saying, ‘We're not going to get offended, they don't know what else to say…’ And just kind of stood our ground but also were aware that other people didn’t know how to deal with this kind of stuff… We had a lot of people say, ‘So this will be your last baby, then. You won't be having any more after this, right?’ That's hurtful. We wanted a big family, and this isn't the time to tell me that I shouldn't have any more children… But people just don't know how to react. They don't know what to say. And just knowing that I think will help you in the long run.”
Sometimes, it may take a long time for people to understand your child’s diagnosis, and with time, people may be more open to asking questions to understand. Gabi tells us that telling people about her child’s diagnosis has been empowering for everyone involved: “I can't even verbalize what a difference it has made for peers and cousins to understand her diagnosis and what her struggles are, and how much more aware, understanding, and encouraging they have been to include her or offer ways to support her so that she can join in with their help. It has really been eye-opening for them, empowering for my daughter, and amazing to see how much others truly care about her being able to join in.”
To keep everyone updated, you can make a Facebook page or group, create group chat, or use a Google Doc to easily relay information to family and friends (instead of updating them one by one). You can also use the website CaringBridge, where you can log and share health updates, photos, and videos with friends and family.
This doesn’t mean you have to tell everyone right away. Some families need time to process on their own before sharing, whether that’s a day, a week, or a month (or more), and that’s completely normal. What can be helpful, whether you choose to share early or wait, is to be forthcoming about the response you want to hear. For example, if you don’t want to hear the word “sorry,” write a letter you can share with people explaining, “Please don’t tell us you’re sorry.” You can even add a request, such as, “If you want to help, instead, send diapers.”
Having a child with a disability or medically complex needs doesn’t mean you and your family have to live in a bubble for the rest of your lives. There are many ways to resume “normal” life while also keeping your child safe, and one of those ways is by having firm boundaries. For example, you can limit the number of people who come to your home, ask visitors to wash their hands before touching your child, not allow people who are sick to visit, etc.
If you have a very social family or circle of friends, doing this may be harder than you think, but it will get easier with time. Heather tells us that because her daughter is immunocompromised and has a lot of medical equipment and oxygen, she won’t allow anybody to smoke near her. She also has told people that during cold and flu season, they may not attend family functions. “There were a lot of boundaries — we had to tell people, ‘Don't count on us because we may have to cancel at any time. If she gets sick or something happens, we may have to cancel. We don't have reliable childcare for her because she can't go to a daycare and she doesn't go to school. She has nurses, and nurses call in or don't show up. And if she can't go with us, then we're not coming, so don't don't expect us to be super predictable, because we might not be.’”
Another tip: If you’re attending a family function and your child has a nurse, remember to add them in with your head count. Heather adds that some people may not be comfortable with you bringing a nurse, but if that is what your child medically needs, it’s important to communicate and set boundaries around it.
If you have other children, it’s important to be creative in the ways you not only support them but also involve them in what’s happening with their sibling. For example, you can let them push the stroller as well as watch videos, play music, dance, or read together. “We try to find little ways where they can interact and we can do things as a family,” Heather says. “Every family is different; you've just got to find ways, no matter how small, to implement some kind of bonding. It could be drawing a picture and decorating the hospital room, sending a gift or a postcard, reading a message, doing a video chat. There are a lot of different little ways, if you have the ability to really think about it — sit down and pull it apart. Like what could make her smile today or make them smile today.” If the other kids are older and/or out of the house, Gabi likes to call, text, and check in often.
Heather also recommends signing up siblings for a class that hospitals offer on bringing home a new sibling. They learn things such as how to help give the baby a bath, change a diaper, or hold a bottle. Even if they don’t get to fully do those things at home, you can always adapt. For example, instead of actually changing a diaper, they can bring you a diaper when you need one or hold their sibling’s hand while you change the diaper.
You can even look into the Sibshops program, which the organization describes as “pedal-to-the-metal events” where kids meet other siblings, ”talk about the good and not-so-good parts of having a sib with special needs, play some great games, learn something about the services their brothers and sister receive,” and again, have fun. Find more information on this, and supporting siblings in our article Supporting Siblings of Kids with Disabilities.
Don’t be afraid to just talk to them. Heather explains, “I remember distinctly having to have this one particular discussion multiple times, where we had to basically say, ‘We're a family, we're a team, and we look out for each other. And it doesn't matter who is the one needing the help, we're going to help them… But really breaking it down for them that we're a team and [their sibling] is not taking attention away from the family. We are just taking care of each other because that's what families do.” Not sure how to start conversations? Gabi suggests reading books or watching TV shows/movies with characters who also have your child’s disability, and letting the kids ask questions.
Staying connected as a family can help everyone cope with the challenges. Heather tells us that her family always tries to find little ways where they can interact and do things as a family, such as going to theme parks — something other than medical stuff together. For Gabi, she prioritizes having dinner together as a way to foster connection. “Food is a huge thing that brings both of our extended families together, so we do the same in our home. We don't watch TV while eating and just chat with no devices.” Another tip Gabi shares is that siblings sharing bedrooms can help foster bonding as they learn how to help each other, clean together, and participate in nighttime chatting.
Your self-care toolbox isn't a physical thing but a collection of services and strategies — though you can create a physical one if you’d like! Care kits encompass services, a self-care plan, respite care, child care, and anything else that will help provide relief or comfort. Carefully monitor your energy and mood as you navigate this phase, making note of areas you’d like to find solutions for. Identify your needs and ways you can tend to them.
Taking a moment to pause and care for yourself is crucial. While it can be challenging to set aside personal time, small acts can help replenish your energy. To help you out, we’ve compiled a list of self-care suggestions and some words of support from our experts:
Take everything in baby steps (and don’t fear the setbacks). “Be kind, let yourself feel the things, then pick yourself up and move on to the next day,” Heather reminds us. “I would never say it's easy, but you'll get there, right? Like, I'm smiling now and I'm working for a company that helps other families and I love being the mom of my medically different children. But five, six years ago, when she was born, I was a puddle of tears, not knowing which way was up, not knowing what to expect, [thinking,] ‘How do I do this? Am I going to be able to do this? How do people do this?’ It's been a long journey but it's so worth it.”
It's going to be a full-time job. Give yourself patience, because you’re not going to get it all done in one day. Sometimes, there are curveballs thrown at you. Heather says, “It's very difficult, but I just laugh about most things now… Eventually you learn, after all the panic attacks and anxiety attacks… if you dwell on it too much, you start wanting somebody to blame or getting mad at doctors, which sometimes is accurate. But if you are not able to take a breath, and recenter yourself, you will lose your mind.”
You may not be able to figure out how to take care of yourself or take time for yourself right away, and that’s okay. You’re going to be busy; there will always be something going on with very little downtime, “and that's another thing that's hurtful to relationships, marriages, and family relationships and friendships — because you don't have a lot of [spare] time to go see a movie or go hang out with friends or get dinner or get a pedicure.” Heather explains. “It's hard to find that time and energy, and even when you do have the time, you may just want to sleep for half an hour. So it's kind of a running joke: We all need time for ourselves, that is important, but very few of us have figured out how to do it effectively.”
Don’t isolate yourself, especially if you have a significant other. Gabi tells us that her husband has been her biggest supporter, and likewise: “Since we are both going through the same things, but feeling things in different ways, it always helps to hear what the other is thinking and feeling to help support the other when things are feeling especially hard.”
Consider a personal therapist who has experience with your child's diagnosis and can really understand what you’re going through. You can also consider if therapy might be right for your children. Check your health benefits to see if it’s possible to start talking to somebody.
Join a parent support group (or three). As Gabi tells us, “Whether in person or virtual, to be able to listen and talk to others has been so helpful. Online groups are great, but I feel like people can truly discuss how difficult things are and express their frustrations more freely if it isn’t written.” And sometimes, those parents who you connect with online end up being in your inner circle because they know what you’re going through. Heather adds that sometimes, in the midst of this, you may find that many of the other friends you had previously “may fall away.” While that can be lonely, the new friends you find through your connections with other families can certainly ease the blow.
Participate in parent meetups. This way, you’ll have dedicated time to connect with other parents and feel supported as you facilitate play time for your child.
If you haven’t already, we encourage you to join our private Facebook group for parents, where you’ll find plenty of listening ears as well as resources for providing the best possible care for your child.
