The 5 Places I Found My Tribe After My Daughter's Diagnosis

They saved my life.

Although we had just met, we all belonged to a club that no one wanted to join — parents of a child with a chronic health problem. These parents understood my fears about my daughter’s future because they had the same fears. They understood my anxiety that came from constant worries about my daughter’s health because they too, had similar worries. They understood the loneliness and grief I felt after my infant daughter was diagnosed with a congenital heart defect (CHD) because they had experienced the same feelings. These parents pulled me from a pit of despair.

They were my tribe.

Finding Support
Early on, I found it was really important to surround myself with people who understood the seriousness of my daughter’s health issues as well as my own struggles. No one in my existing circle had faced a big health crisis similar to my daughter’s heart issues, and it was hard for them to understand. They did their best to support our family, but what I needed was to connect with parents whose child had the same sort of illness. I searched for my tribe and was fortunate to find more than one. I had an immediate bond with these new friends. They each had a different story, and yet it was similar to mine. We could discuss the hard parts of our journey, but we found time for laughter as well.

1. Online Support Groups
When my daughter was diagnosed with her genetic disorder in 1999, there was not much support online. However, I found a Listserv (an application that distributes messages to subscribers on an electronic mailing list) of parents (mostly moms) who had a daughter with Turner syndrome (TS). Listserv allowed us to create a group discussion via email. I spent a couple of hours every day asking and answering questions about TS. It was an incredibly smart, creative group of women. They kept me sane, especially in the first couple of years after my daughter’s diagnosis. We talked about everything related to our daughters, the good and bad. We poured our hearts out. We shared our deepest fears that we didn’t tell many others. What would our daughter’s future hold? Would she have a “normal” life? Would she have a long life? All the things a parent of a child with a lifelong illness asks themselves. We discussed treatment options, the pros and cons. We shared our research. It felt like a college study group where one mom was an expert on one symptom, while another mom researched a different one. I am grateful for this group. It became a shelter of sorts from the storm of our daughters’ diagnoses. After 19 years, many of us from this Listserv are still friends to this day.

2. Facebook Online Support Groups
Facebook (FB) is a very good example of a technology platform that makes it easy to join and participate in online support groups. These days, there are FB groups on just about every health condition and I belong to a number of them. They are especially useful if you don’t have the time, availability or inclination to attend a local support group. I spent a lot of my time in those early days on the computer almost every night after my kids went to bed. You can sit in the privacy of your own home and find support on your computer in your jammies! Check out a good number of them, some may be a better fit than others. If it is a closed or private group, you may need to send an email to an administrator to join.

Unfortunately, there can be misinformation exchanged through online support groups. A good process is to cross-reference information you receive from a support group with information from a reputable site such as an official advocacy group, the clinical practice guidelines specific to your situation or Mayo Clinic. Since my daughter has the most serious heart issues associated with TS, other moms will tag me when someone has a question that is heart-related. I answer to the best of my knowledge and encourage them to talk to their daughter’s cardiologist.

3. In-Person Support Groups
As my daughter was recovering from her first open-heart surgery, I found a newsletter in the family waiting room about a support group called Parents For Heart (PFH). I remember reading about a young woman, a heart surgery survivor, who had just gotten married. I burst into tears…happy tears! It was exactly the story I needed to read. Babies with heart defects do grow up and do typical things like getting married!

I attended the PFH support group meetings for a number of years until my daughter was diagnosed with TS. It was wonderful to meet with other parents who understood what it was like raising a child with a heart condition. We had holiday parties with the kids, went to Major League baseball games and met for support every month. The group met at the local Children’s Hospital, and the Sibling Play Area volunteers watched our kids while we attended the meeting. Since I had two other kids, having a built-in babysitter made it that much easier. I had never been part of a support group, and it became a very important part of relieving my stress and anxiety.

Whether you attend the meetings or just join them online, local support groups are great for connecting with other parents who live near you. There is nothing like meeting with another parent one-on-one who understands the challenges in your life. This can be a good time for your child to find new friends as well.

4. Advocacy Groups
Almost immediately after my daughter was diagnosed, I found the Turner Syndrome Society of the United States (TSSUS) which is an advocacy group for those living with or loving someone with Turner syndrome. Advocacy groups are a great place to find out about events or fundraising associated with your child’s health issue. We’ve all seen the colored ribbons for awareness of certain health issues as well as dedicated awareness months. You can find lots of information about how to advocate on your own Facebook page, facts to share, local events and more. For example, February is Turner Syndrome Awareness Month. April is National Autism Awareness Month. May is Neurofibromatosis Awareness Month. And November is the National Diabetes Awareness Month (NDAM).

Look online and find one associated with your child’s diagnosis. Advocacy websites have a ton of information. I’ve seen such an improvement on these sites over the years as well. In the beginning, the TSSUS website didn’t have nearly as much information available as it has today. That’s why so many of the moms I know became so good at research, we had to dig to get the correct information.

5. National Educational Conferences
I have attended over 10 TSSUS Educational Conferences with or without my daughter because they were so informative. It was an opportunity to meet other parents who “got it,” no explanation needed. Parents would gather at the end of a long informative day to share what we learned and more importantly, to laugh! My daughter made some friends early on, and they would meet up at the conference every year. I called it the most expensive play date ever!

At these conferences, I met many medical experts within the TS community. I also met some of the online moms in person at the TSSUS Educational Conferences for the first time. I felt like I was seeing a long-time friend. Those connections have lasted as our girls have grown up.

Finding your tribe is the key to self-care as a caregiver. Every medical parent understands how finding your tribe is important to self-care. I have a long list of people I can contact if I need support. It is a list I refer to and often.

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