I could not get to the lab fast enough to begin Avery’s genetic testing. When we arrived, they told us to “come back tomorrow.” It was so discouraging. The following day, there we were, taking a number and waiting to give a small sample of Avery’s blood, the result of which could possibly change our lives forever.
We found out it would take 4 weeks to get the results back. This news unleashed a startling range of emotions and what felt like the complete unraveling of my rationality. Then I went and did the one thing that can completely derail any remaining rational thoughts when it comes to medical concerns. I’m sure you’ve guessed it…. I GOOGLE searched! Technology allows us to achieve amazing things (for example, the very fact that I’m sharing our story for complete strangers to read), but there is also such a thing as ‘information overload.’ When people are given access to the answers of just about any question they can think up, it’s become pretty clear that most of us will exhaustively search until we’ve dug up the worst-case scenario. I know I did.
Left to my own devices, I had conclusively diagnosed my son with multiple problems during that 4-week period and most of them held frightening prognoses. I remember telling a girlfriend the name of a particular diagnosis I had chosen to be “the one” that week. Her response was, “You literally found the rarest disease in the world, and I’m pretty sure Avery does not have it!” This made us both laugh out loud, and that break of laughter was so needed.
Laughter and support from friends and family during this time became our touchstones, but I also sought support from others going through similar situations. I became a member of a support group through Baby Center, and while it allowed me the space to feel “ok” about my ranging emotions, it also created fears of the unknown. The thought that the test could come back as inconclusive terrified both my husband and me. At the same time, the reality that something could be wrong in an incurable way terrified us just the same.
The following are photos taken during this time of waiting. Hindsight offers a unique perspective. Looking at these photos and knowing the internal struggles of my husband and I, it allows me to see the raw and innocent beauty that children possess even through the most difficult times. Avery’s wonderful disposition gave us so much joy. I realize now that he was our main source of strength, and no matter how great the fear, the love was greater.
“There are two basic motivating forces: fear and love. When we are afraid, we pull back from life. When we are in love, we open to all that life has to offer with passion, excitement, and acceptance.” ~John Lennon