Grandparents to the Rescue
You just found out fantastic news - you are going to be a grandparent! This may be a new experience for you, or maybe you already have several grandchildren, but either way, you are thrilled! That is until a few weeks or months later when you learn the heartbreaking news that your sweet grandbaby will be born with a life-threatening defect that you have likely never even heard of. Suddenly your child’s world is crashing down, and, as a result, so is yours. Many grandparents feel helpless as they watch their child struggle with the shocking news and wonder what they can do to help. We’ve put together some advice to help you navigate your new and difficult role because when handled with care, CDH has the potential to be an incredible bonding experience that only serves to bring families even closer together.
Be Available - As a parent and grandparent, one of the most important things you can do is be available. This will look different for every family based on the family’s dynamics; however, being present and available is key. Sometimes this might mean relocating alongside your child, sometimes it might mean caring for your other grandchild while your child is away, and sometimes it might mean being available for a call. No matter what this looks like for you, be sure your child knows you are present and eager to do what you can.
Do Your Research - One of the best things you can do during the first few days after diagnosis is a lot of research. It can be mentally exhausting for a new CDH parent to explain everything over and over again, so spend time educating yourself on CDH. Research and realize the seriousness of the situation. Understand why your child may decide to relocate away from family for better care. Understand that CDH is scary and hard, it’s emotional and exhausting, and it comes with a lot of unknowns. But also realize that there is hope, and your grandbaby can beat this. Understand the complexities of what your child is about to endure and what surgeries/care your grandchild will need. Furthermore, be willing to share the information you have learned with others so your child can spend more time preparing than explaining the situation or defending their choices.
Willingness to be Trained - With CDH comes a lot of acronyms, machines, medications, and therapies. By taking the time to learn the ins and outs of your grandchild, you will become someone your child can lean on for help or an extra pair of hands when their spouse is unavailable. CDH can be all-consuming for the first year, so having someone you love and trust to step in and provide date nights or time away for errands (or a nap) is so important. Also, be sure to brush up on infant CPR and first aid.
Take Time to Process - Your child is not the only one struggling and suffering as a result of the CDH diagnosis. You likely are, too, and that is to be expected! It is important that you find someone you can talk to about how you are feeling and find the time to process those feelings. Many families find hope by talking to families that have “been there” in the Tiny Hero Support Group, while others turn to the church, therapy, or a trusted friend. Remember, you cannot pour from an empty cup, so take time as needed to process the diagnosis. This will allow you to be more emotionally available for your child.
Understand Germs - Germs, especially right now during the pandemic, are scary. As CDH parents, it is our job to protect our Tiny Heroes, and we need grandparents to support this mission as well. All families have different approaches to germ safety, so be sure to talk to your child and determine what their expectations will be. This might mean they will require certain vaccines, masks, no shoes in the house, or a limited number of visitors. They will probably ask that you only come over if you are healthy and have not been around anyone who has been sick. Even if you feel it is overboard, respecting and complying with their wishes is one of the best things you can do for your child. It will give them confidence in you and help build trust as you all navigate your new roles!
Assist When Possible - Grandparents often want to help, but they do not always know how. Of course, things vary from relationship to relationship, and many factors will come into play (including things such as how far away you live or whether or not you work), but when you talk with your child about how you can help, be specific. Instead of saying, “how can I help?” or “what can I do for you?” Simply tell them what you want to do or give them a few options. Saying things like “we’d like to start a meal train for you” or “I would love to throw a virtual baby shower for you” will show your child that you really do want to help. You can also say you want to help clean their house before they return home with the baby, do their laundry, sort through baby clothes, start a GoFundMe, let their other kids stay with you while the baby is in the hospital, or even that you would like to relocate with them and care for the other kids or help with the day to day in their new temporary home. You might opt to help with grocery shopping, laundry, cooking, or staying overnight so that your child can sleep. Some things seem too big to ever ask of someone, but, when offered, can make a world of difference. Figure out what you can do, and then let your child know exactly what you would like to do to help support them through the journey.
Be Supportive - It is so important to remember that having a medically complex baby is likely a new experience for everyone. There aren’t manuals for navigating CDH (although at Tiny Hero, we do our best to provide advice), but for the most part, everyone is learning as they go along. It requires a lot of trial and error, and everyone is just doing the best they can. Your child may make mistakes, you may make mistakes, and the things they do might not always make sense to you. However, remember to support their decisions, let them know they are doing a great job, and remind them of how proud you are of them, even when the things they do may not always make sense to you. Supporting your child during this challenging time in both of your lives will only serve to bring you closer together.
Be a Shoulder - As parents, we naturally want to fix things. We want to take the pain and hurt away from our kids, and we definitely do not want to see them struggle or deal with big things. These feelings are amplified when you have to watch both your child and grandchild conquer hard things. But remember that your child needs a shoulder to cry on and an ear that listens without judgment. Remember, you can’t solve this problem, and they do not expect that you will. You cannot take the pain away, and you cannot fix it — that is okay! What you can do is simply be there to listen, let them vent, and provide comfort during the hard days. You can take things off their plate, you can be fully involved in the journey, and you can help them navigate this new journey.