Lurking

When I first found out about Anya’s CDH I combed the internet for stories of survivors. I grew increasingly frustrated that most blogs did not discuss clinical data, like MRI results or lung to head ratio. I was hoping to find a child with her severity that had survived.  Why didn’t everyone memorize their child’s stats?!?

After Anya’s path became clear, and after she was born, I stopped looking for a while. I was too involved in my child’s story to think about anyone else’s. Now that we are home I find myself looking again. I have liked several pages on Facebook that routinely ask for prayers of support for families affected by CDH. Prayers for babies to fight, babies who are undergoing surgery, or other complex issues. Sometimes babies that are being discharged home to thankful families.

More recently though there have been more and more prayers for healing of broken hearts. So many CDH’ers have recently died. More frightening to me is that some of these children were not infants, but toddlers, well past the age they should be ‘out of the woods.’ Over and over, like an unhealing sore I wonder why. What happened to that child? I watch Anya and feel a mixture of pride and dread. She is doing so well, gaining weight, reaching milestones, weaning off meds. Still there is no guarantee that she may need to be hospitalized at some point, and I fear that it could be our family that needs those prayers.

So I lurk on websites, on Facebook pages, trying to glean some snippet of information that will make me feel better. At the same time I know I will never find anything that will reassure me. I have had too many experiences in my life that have demonstrated how frail life is, how quick to change. Ever since my mother died I have been waiting for my life to be ‘normal’. I suffered through depression, infertility, balancing caring for my father and caring for a young child, Dad’s death, a miscarriage, and now a life threatening condition in my second child. I spent 100 days away from home and my preschooler to give that child a chance at life, and have now put my career on hold to give her the best shot at developing on track.

I need to quit lurking, and I need to quit waiting. It is obvious my life is not meant to be ‘normal,’ at least not the way I have defined it. For better or worse, this is what my life is. Worrying what might happen tomorrow is taking away from today.

My little Supergirl!
I have had my heart set on dressing her up as Supergirl
 since I called her that in the blog!