To the Loved Ones Trying to Help Us Care for Our Son With Congenital Heart Disease

The one thing I know for sure is that it really is the thought that counts. I may lose my temper, get frustrated with you, or I may just suddenly tune you out altogether. But at some point I will mentally return to the moment you tried to help, and I will be thankful and humbled by the fact that you are spending your time and energy trying your best to help us out.

The difficult part of caring for a parent of a child with a critical congenital heart disease (CCHD) is that the parent may not know what they need, or they may need one thing one minute, and the complete opposite the next. I may be grateful to enter into a conversation about comic books, then suddenly become immensely frustrated at having to put forth the energy to maintain a conversation and demand quiet. With this in mind, we’ve been putting together a list of the things that have worked to bring us comfort and the things that have caused us some consternation. We think of this list not as hard and fast rules, but as things that have been reasonably consistent during the last few weeks. As we learn to care for our son in the cardiac intensive care unit, we are also learning what we need from our friends, family and strangers who have overwhelmed us with their kindness.

1. Provide help rather than offer help.

Especially in the first few days, but also as the weeks wear on, it has been difficult for us to think about what we need. Vaguely we know we needed things like food, rest, to manage our personal lives away from the hospital (work, rent, bills, etc.) and distractions, but we are often so focused on the here and now that it becomes difficult to manage these otherwise mundane tasks. The greatest help, both physically and emotionally, has been when people have been able to intuit our needs and help us provide for them. When my wife Lyndsay’s parents (who had been taking care of our apartment and getting our mail) returned to Michigan, my stepmom jumped right in and said she would drive to our house to get the mail and pick up any items we find we may need. My sister practically made us move in to her spare bedroom so we could be close to the hospital. Friends have been coming to visit and will bring snacks for us, without us asking, and others who live too far away to visit have sent us care packages with snacks and welcome distractions. These gestures of support have been amazing, and they have made our lives here way less complicated.

This is not to say that we don’t appreciate people asking what they could do to help, it’s just that we’re often not in the mindset to give a good answer.

2. Be OK if we don’t want or use what you provide.

All that said, sometimes people intuit wrong (which is usually because we may want something one minute and don’t want it the next), and bring us something that we can’t use or don’t really want at the moment. Please be OK with us turning you down. This hasn’t happened a whole lot, but on occasion we will get something that we don’t want. A friend brought me a magazine one day. I looked at it briefly and said, “I don’t want it, but thanks.” My friend was awesome and just said, “That’s cool.” Maybe she returned it, maybe she kept it for herself, I don’t know. But I appreciated the ability to say no to help when it wasn’t something that would actually help. If you’re worried about spending money on something we may or may not use, consider getting something that’s easy to return, or something you’d be happy to have for yourself. Then you can give yourself a gift for being so thoughtful!

3. Visit, without asking.

Following the theme where we make as few decisions as possible, if you know that we’re going to be at the hospital, just plan on visiting and don’t worry about asking us if it’s OK for you to visit. For the most part, it’s always OK. You can text us to say that you’re planning on stopping by at a specific time, but you don’t really need to ask us which day will work better for us. Most of the days we’re just at the hospital, so that’s a decision we’re happy for you to make.

4. Be OK with a brief visit.

While we love having visitors, because our moods shift and because we want to spend time with our baby when he’s awake and moving around, our visits with you may be shorter than you and we would like. So even if the visit lasts only five minutes, we are so thankful to get to spend the time with you, and even more thankful when you understand how our attention span might prevent us from spending more than those five minutes.

5. Let us tell our story.

We’re learning a lot: about our son, his CCHD and our family. Telling personal narratives allows us to structure and give meaning to our lives. When you give us the time and space to explain our son’s condition, to talk about what it was like to find out about it, to express the feelings and sensations we travel through each day, you help us understand who we are and what we’re going through. The more time and space we have to tell these stories, the better we will understand who we are as a family. There are few gifts more powerful than a good listener during a tough time.

6. Talk about the weather.

OK, not really the weather, but something we find interesting and that we’ll find distracting. The toughest day we had was the day of our son’s surgery. We were both a wreck. The most unobtrusive statements caused me to lash out at someone or burst into tears. At one point, when it had been a while since we’d heard from the surgery team (they called us every hour or so to let us know their progress), my friend Joe asked what classes I had taught in the fall. I told him and he started asking me questions about them: what book did I use, what was my approach to teaching it, what was my favorite part about teaching it? For about 25 minutes, I left the stressful world of the surgery waiting room, and entered a world of two colleagues sharing teaching strategies. It was one of the most important moments of the surgery for me because it deleted some of the painful time of waiting and replaced it with the joy-filled time of an intellectually stimulating conversation.

7. Be OK with silence.

It can be hard to pick up on body language cues, but sometimes we just need to be left alone, and picking up on those cues helps us have the comfort of friends without the obligations that typically go along with them (e.g. conversation, reciprocation). That doesn’t mean that we want you to leave, but it may mean that we just want to be in a space where it’s OK for nothing to happen and for no one to have anything to say.

8. Help us provide care for our child in our way.

Our son’s CCHD is complicated, and as with any major medical condition, there are significant risks. As parents, these risks can feel crippling. On paper, a 90 percent success rate sounds awesome. As a parent, though, it means that one out of 10 kids who go through this operation won’t make it. And those odds are not good enough for any parent.

Friends and family know this, and they try to help. Getting information about how care is administered, what progress is being made in the field, how we can access more research on our son’s condition, and who treats cases like this and how, are integral pieces of information that will help us determine our son’s future. Just make sure that you give us the time and space to digest this information. We’ll be helping our son deal with his CCHD for the rest of his life, so his care will be a process that we figure out over time. While we appreciate all the bits of information we receive, ultimately we have to weigh them all together, so no single bit of information will ever stand on its own. Combined, we will figure out how all the information will help us provide a fulfilling day to day life for our child, and a productive and effective system of care for him and for our family.

9. Offer empathy if you can, or sympathy if you can’t.

This is simple, but important. Over the last couple of weeks, I have not been the stable person I usually am. It’s like I’m just waiting to get angry at someone. It’s not rational, and what I’m often looking for is just someone to recognize that I am emotionally distraught. The other day I received an email from a friend offering empathy. He told me about a similar, but different situation he had when his son was born. Emails and conversations like this remind me that I’m not alone, that others have made it through this and a lot more, and that I will, too. But often people don’t have an experience that is similar. In these instances, your lack of understanding of my feelings and emotions is one of the most helpful things I can hear. Just as empathy reminds me that I can get through this, sympathy confirms that my struggle is reasonable, and to be expected.

10. Don’t apologize for not visiting.

There is no bad reason for not visiting. I’ve heard people say they felt bad for not coming sooner, or at all. My thoughts on this are that if you love us and you want to support us, you will do so in whatever way makes the most sense to you. I’ve had friends tell me to text them the name of a restaurant that will deliver food to me so they can order me dinner. I’ve had friends send SmileGrams to our son’s room to let us know that they’re thinking of him and us. And we’ve had many people donate whatever works for them through our fundraising site. These donations will help us get through the many expenses that will arise as we continue to learn to take care of our son. All of these forms of care remind us that we have a support network that wants us to succeed and is going to do what they can to help make it possible.

Follow this journey on Baby Raphael.

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