11 Ways to Support CDH Parents
Are you wondering how to help CDH parents? Here are several ways you can show support:
1. Accept us for who we become following the diagnosis: After a CDH diagnosis, the rug is pulled out from under us. Our entire world changes, our priorities change, and our carefree days come to an end in many cases. We now have to worry about germs, medicine, feeding schedules, and organizing it all-around therapy and doctor appointments. Accept and love us for the strong and resilient people we become thanks to CDH, even if it is drastically different than the person you have known for years.
2. Offer Specific Help: So often, well-meaning people say, "Let me know how I can help" or "Let me know if you need help." We know the intentions are great, but honestly, it feels empty. We don't know who truly wants to help and who is just saying it. We don't know what kind of help people are talking about, and we often don't even know what kind of help we need. Instead, offer something specific. Ask if you can watch the other kids while we go to a doctor's appointment, offer to bring a meal or come over and help fold clothes, or even offer to go pick up our grocery order when you pick up yours. Be specific and reassure us that you genuinely don't mind.
3. Check In On Us: During the first couple of years, CDH is tough. It can be isolating hiding out from germs. Many of us choose to stay home and aren't interacting with other adults beyond medical professionals, so it is lonely. But at the same time, life is busy. We are treading water trying to stay afloat, juggling so many things on our plates, and can't always think to pick up the phone. So please understand that we love you and want/NEED to talk to you. We just struggle to find the time to pick up the phone or know what to say since our world revolves around our Tiny Hero.
4. Ask how we are doing - So often, people ask, "How are you?" We instinctively reply, "Doing well, how are you?" But know that we likely aren't doing well. Things are likely hard. We are scared, tired, and struggling, but don't think anyone is interested in listening to the real answer. So really ask how we are doing and truly listen to the answer. If we give a quick "good, you?" response, dig deeper, we may need to talk.
5. Understand Germs: Once we have a CDH baby, we suddenly see the world as a giant germ. Show us that you respect these fears and our need to protect our baby by telling us you are healthy, showering beforehand, dousing yourself in sanitizer, and would like to leave your other kids with dad to come over to visit. Understand that due to germs, we will likely ask you to wash your hands often, refrain from kissing our baby, keep your fingers away from their mouth, and remove your shoes before entering the house. This isn't because we don't trust you. It's just what we need to do for our baby's protection and our peace of mind. Also, if you plan to come over, ask if it is a good time and reassure me that you are okay with a messy house, messy bun, pajamas, and me being in total mom-mode.
6. Encourage and Praise: So often, friends will say, "I don't know how you do it" or "you are stronger than I am." We know these comments are intended to be kind, but we do it because we love our kids and don't really have a choice. Meeting their needs doesn't make us strong. We probably breakdown a lot and don't feel very strong. Instead, tell us we are doing a great job and remind us that we are wonderful parents. Compliment the job we are doing instead of reminding us that our role as a CDH parent is challenging or that you are glad you aren't us.
7. Limit Unsolicited Advice: If you haven't had a child with CDH or a similar medical complexity, refrain from offering unsolicited advice or judgment. We have experts managing the care of our child. They see many doctors, therapists, and specialists, so when it comes to things such as learning to eat by mouth, we have probably tried everything you can think of and more. We probably have great reasons for the ways we do things, and it is hard to feel as though we need to constantly justify or explain those reasons to other people.
8. Be Sensitive: With CDH comes a lot of PTSD and loss of "typical" experiences. When you talk about things, please be sensitive to those feelings. Comments such as "As long as my baby's healthy, that's all that matters" may seem innocent, but they can hurt. Talking about how important immediate skin to skin is for bonding or how much you loved breastfeeding can be triggering.
9. Don't Show Pity: When you see our baby in the hospital, at home with a g-tube or oxygen, or failing to meet milestones on time, don't feel sorry for us. We are proud of our kids, every milestone they hit, and every machine that leaves the room. We know they may not be "normal" milestones or may not happen at the typical age, but we celebrate them all, and it is even more exciting when they happen. We love it when you celebrate with us!
10. Financial Assistance: We may have said we don't want a shower, that it would be too hard. But CDH can be very difficult financially, and there are other ways to help offset the cost! Things such as setting up a virtual baby shower (sharing an amazon registry on Facebook), setting up a go-fund-me, or arranging a meal train can really help. Another option is doing gift cards as a shower instead of gifts. It allows us to use them for food or items needed in the hospital or go shopping online once our baby is home, and we know what we need.
11. Space May Be Needed: We love you, your friendship, and your support in all the ways mentioned above, but there may be times when seeing other people is just too much or that we may need time to adjust to life with our new baby. We may have waited weeks to hold our baby and aren't ready to share snuggles just yet or may need privacy as we are recovering from birth and learning to pump. Upon arriving home, we may want and need help from others, or we may want and need a little time alone to build routines and establish a new normal. Ask if it is a good time to visit and try not to take offense if we tell you another day would be better. If we say it's not the best time, don't worry! We will find our new normal and look forward to visiting very soon!