As a Down syndrome mom and a CF wife, I have sought out support via Facebook groups. These groups are made up of Down syndrome mom's of a variety of ages, those that have adopted children with Down syndrome, those with multiples, and those parenting little ones born the same year as Asher. I'm also part of CF wives groups, Project CF Spouse and Lung transplant groups. Each serves their own purpose and I tend to turn to different groups for different questions and different support.
These groups can be amazing when one needs support and has a million questions that others with other experiences can chime in on. They have equipped me with questions to ask Dr.'s and given me hope when it was fading.
At the same time, they can also come with pain. When you are part of a group of mom's with children who are more prone to illness, many of whom were born with heart defects, there can be a lot of pain, sickness and even death. Each time I read a story of a little one who has passed away from heart complications, pneumonia or a common, seemingly minor illness that turned fatal, my heart breaks. My heart breaks for their family and for their loss. For the loss of a little life that will leave a gaping hole.
As a CF wife and a transplant wife, these groups can also contain a lot of pain. Like the Down syndrome groups, there are amazing stories of hope, encouragement, laughter, victory and joy. At the same time there are a lot of stories of sickness, concern, fear, and even death. And again, even though I may not have ever met these individuals in real life, my heart breaks and aches for them and their families.
There is also another reason though that being part of these tribes can hurt so much when we hear of these losses, and it is because we are all acutely aware that it could be us and our families. Not that we ever want to make someone else's loss about us, because it's not about us. It's about them and their family and their loved one. At the same time we might be affected deeply, profoundly and personally because we know that we could be one illness away from standing in their shoes, making the same unthinkable announcement.
Asher did not have heart issues like many babies with Down syndrome and has been quite healthy. The stories of little ones passing away in my mom's groups affect me deeply because I can't imagine losing one of my babies, but I don't often feel like that could be me at any time. It could be, because there are no guarantees in life, but it's not something I have to stare in the face every day.
Elias on the other hand is a different story. I always thought he was a really healthy CF patient until last year when his health plummeted faster than I knew was possible. This week, the loss of a CF spouse has affected me deeply and profoundly. Maybe it's because there are similarities in their family to our family. Maybe it's because Elias was so close to not getting his lungs in time or maybe it's because I feel our future is less guaranteed than others. This family's loss is not about me and my grief or how I have been affected in ways that have surprised even me, it is about them and their grief and their loss and how they will be the ones that have to move forward, yet we still hurt for them, with them and sometimes for what that would look like if it was us.
Sometimes there is so much grief and pain and hurt in the "tribes" where we also find so much support, that we have to step away for awhile to keep ourselves mentally healthy. It's not healthy to live in fear of what if when one has a healthy, or mostly healthy, child or spouse at home. It's not healthy to frequently grieve possibilities that aren't happening or grieve a person that is alive and well.
Having these groups offer so much: hope, support, encouragement and understanding, but sometimes we have to also take care of ourselves and our mental health and take a step back for a bit.