As I sit here and reflect upon this past year my mind can easily take me in a million different directions. You see, we are nearing the one year anniversary of when we learned of Clara's diagnosis. It was about this time last year when we got the phone call from genetics (note: we were not actually expecting to hear back from them until January of 2014) stating Dr. L, Clara's geneticist, wanted to bring us in to speak with us. As in, they had an appointment scheduled for us on November 21st, and could we please make that work?
In that moment I knew. I knew they had found something. I knew they had an answer to all the questions that had been swirling in our head since Clara was four months old. I knew there was an actual reason for her delayed development and lack of social awareness. And in that moment my heart just kind of skipped a beat.
We walked into that appointment a few weeks later, with little 18 month old Clara, and heard words that will forever be etched into our mind.
"We received back your blood work results, and we now have a diagnosis for Clara. It's called Cohen Syndrome. It's very rare and . . . " her voice just kind of faded off for a moment as I took it all in.
Dr. L went on to explain how one becomes affected by Cohen Syndrome and how there is not a lot of research due to its rarity, but they did have some information for us. Words like developmental delay, extreme nearsightedness, intellectual disability, hyper mobility, neutropenia, and microcephaly were thrown out, and also possible degeneration of the tissue in the back of the eyes which could lead to retinal dystrophy and eventually, blindness. And she might learn to talk, but she might not. And later, looking down at my seven month pregnant belly Dr. L gently explains how any biological child has a one in four chance of also being affected by Cohens.
We walked out of that appointment with a packet of print outs and a mountain of information to mentally process.
And I knew in that moment I had a choice.
I could choose to let Satan enter my heart and slowly sink all the faith, hope, and peace I know to be true.
Or I could choose joy.
Joy in the midst of this new confusion. Joy in the midst of this new roller coaster of emotions that could take me straight down to the depths of despair or straight up to a constant source of life and hope.
I knew in that moment, for Clara's sake, I had to choose the latter. Her precious little 18 month old self deserved the latter.
As her mommy I knew that my reaction to this diagnosis would directly impact her prognosis.
Because joy is contagious is it not?
Psalm 16:11 "You have made known to me the path of life; you will fill me with joy in your presence."
Now choosing joy doesn't mean the path will instantly be easy. That is so far from the truth. This last year has been filled with some very hard moments for us as a family. Very hard moments mixed with lots of searching and begging God and unanswered prayers.
There is still so much of it to be found.
. . .
The women over at (in)courage just put out their new line of Letterpress Blocks, which are now available for viewing and purchasing. You can hop on over and play around with their interactive tool to create your own word or phrase, that can then be used as a daily reminder when displayed in your home. A perfect gift idea as we near the holidays. #wordsmatter
Disclosure: I was asked to write this post by the (in)courage team, but not compensated for it, nor am I receiving compensation for any links clicked or orders placed.