When I Found an Online Support Group for Families Like Mine

I honestly did not feel the need to seek a support group, let alone a support group on Facebook, but then I received an invitation to join one group and then another. Soon I was hooked. I can easily now spend an hour reading and replying to posts about children with needs similar to my son’s.

For the first time, I was looking at pictures of families like mine. I saw posts about challenging moments, illness and death. I saw honesty and vulnerability, pain and sadness, and I liked that because to me that is reality I frequently see that where I work. I have cried over children lost, and I’ve been filled with fear for what might come our way. I have also rejoiced for the happy moments and the recoveries. There is a time to cry and a time to laugh.

In our group, families whose children are doing well share their progress and victories to encourage others and to push back the negativity and prejudice permeating the medical community in the world of trisomy 13 and 18, particularly full trisomy. The goal is to send a message loud and clear, which is in sharp contrast with the doom and gloom often forecasted by doctors because of the severity of the health problems and the developmental delays that accompany both diagnoses.

This message is absolutely necessary as I believe many have been encouraged or even pressured to terminate their pregnancies. Many have been assured their children won’t have “quality of life” when, in fact, a parent’s definition of “quality” often times differs greatly from that of a doctor’s.

If doctors could look at our pictures and our videos, but more than anything, if they could read our posts, they would see that we cherish our children’s lives no matter how short and how limited. They’d be surprised to see quite a few kids doing remarkably well developmentally, beyond many doctors’ imaginations kids sitting, crawling, starting to walk and saying a few words. Reaching these milestones is a big deal for our kids.

To be fair and honest, I do believe that every now and then we get carried away in our attempt to offer hope and to counterbalance the doom-and-gloom message. We can swing to the other extreme. We can start to ignore the spectrum. We can start generalizing and painting all doctors with the same brush, making it hard to expect anything good from them, making us suspicious of their motives. Unintentionally, the message seems to become “because our child can or did, so can yours,” as if it were a matter of sheer determination.

Our group is formed of people whose children are long-term survivors and of people whose kids died in utero, shortly after birth or a long time ago. Many women turn to our group after a prenatal diagnosis, and I can say with all confidence that we become a lifeline for them. I know they would have been for me, had I found out prenatally that my son had full trisomy 13. Yet this is not without risk. Both the seeker and the giver of advice walk a fine line. We are always taking a chance when we expose our lives.

I used to think Facebook was not for me. People looked too happy and pretty, always smiling against beautiful backgrounds, having fun surrounded by friends, while I felt lonely, anxious and exhausted. Being part of an online support group has allowed me to meet others whose lives look more like mine. Even though the experience isn’t always safe, and we have our moments when opinions clash, I am grateful for the opportunity to grieve and celebrate with others; I am grateful for the opportunity to learn and to be challenged by the example of perseverance and determination. And believe it or not, it has eased my entrance into the world of “mainstream” Facebook, too.

Follow this journey on New Eyes.

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