About forty minutes ago, I received an email from Kiran’s genetic counselor (well, our family’s genetic counselor, I suppose) saying she was ready to set up a conference call this afternoon to discuss Kiran’s genetic test results.
The call will be around 3:30 this afternoon.
My anxiety is at an all-time high. This test was sent in at the end of September, and we knew we would be waiting months for the results. Waiting over the weekend proved to be challenging – thankfully, I had a very busy weekend, both work-related and personal-life-related. Waiting the next two hours and forty-two minutes? Yikes.
I keep reminding my brain – and my heart – that none of this is actually new. Kiran’s genetic code was written in the womb – maybe even designed before he was, as they say, a sparkle (twinkle?) in my eye. He is and has always been Kiran, this child with this body and this heart and this mind and this genetic code. Every diagnoses has been who he is before, during, and after receiving it on his medical chart.
I WANT a diagnosis here. That’s the interesting thing about this particular test. With the MRI, I wished it would be a boring result – oh, his brain is normal. I knew it wasn’t. But my hope would have been for a “negative” result: no added diagnoses, normal brain scan.
I don’t want the whole exome sequencing to come back negative. I want him to be in that very small 15% that actually gets a significant result back. Because this would help us. Not only would it help us in the daily as we talk about who Kiran is when people ask questions…but it would help us in knowing what to expect for his life. It would help us in finding other people like him for support and encouragement. It would help my brain so, so much, to be able to plan and prepare for his future, getting to actually understand and know more about what it could hold.
I am very emotional with the waiting. My body in these situations immediately goes into a fight-or-flight, PTSD-induced, emotionally charged, anxious ball of stress mode. The waiting is hard. The news will be hard, either way, just in different ways. And the processing to come will be hard.