On September 11, 2001 the world changed forever. Yesterday, September 11, 2012, my family’s world changed forever.
It was a beautiful, clear morning in Houston, not unlike what New Yorkers described eleven years ago before ugly black smoke filled the blue sky. I loaded Grayson in the car and headed to my parents’ house to pick up Hannah, my sister in law who had graciously agreed to go with us to G’s doctors appointment, which I had jokingly promised her would be an “adventure.”
We were seeing Grayson’s Mitochondrial Disease specialist, who you probably remember has been on maternity leave for several months. We had to discuss with her the results of the MRI, spinal tap and genetic testing. However, I have had copies of all of these and had even discussed the results with G’s neurologist. When Ryan asked if he should take off work and come with us to the appointment, I said no. I figured she would say basically the same things we’d heard before, but maybe with a little more clarity.
We talked to a med student, Grayson fussed, we changed his diaper- all “normal” things we do routinely at doctors appointments. Then the doctor came in, and the plane slammed into our building, although the doctor ended life as we knew it with kindness and gentleness. The news was devastating and shocking: Grayson has Leigh’s Disease.
Leigh’s Disease is a rare form of Mitochondrial Disease that is fatal. We do not know how long he will live, but Grayson will most likely not survive childhood.
In a second, I went from Special Needs Mom to Mom of Child with Terminal Illness. How am I supposed to process this? What I am supposed to do? A lot of real life people know the news already and are asking if we are ok and what they can do. No, we are not ok, and I have no idea what they can do. It’s just where I am right now.
Please know if you’ve called, emailed or texted and I haven’t responded it’s not because I don’t appreciate it or don’t want to talk to you- I’m just exhausted and emotionally overwhelmed right now. Bear with me- and know I am so grateful for your prayers and support.
I do know that we are more determined than ever to give Grayson the happiest life we can- however long or short it is. And this little guy certainly doesn’t know anything has changed. We just love him so, so much and will celebrate his life every day (and big time next Saturday when he turns TWO!).
Photos by Rebecca Kline Photography