Thursday, January 8, 2015
Staring fear in the face.
I look at Jonah and I see all the way to his soul. I love every bit of him. Sanfilippo is part of him it’s written in his DNA. So does that mean I love Sanfilippo too? I can’t. So I plan (with my scientists doing all the work) on rewriting his DNA and separating out the Sanfilippo, just the part that’s killing him. Like ripping off the morning-glory that has wrapped itself around and around my beautiful flower, chocking the life out of it. I want to see my flower grow and bloom without the weed cutting his life short.
It’s a relief thinking I can do that, but can I? I spend half of the weekend working, sending Jeremy out with Jonah so that I can try and get a head start on the week ahead. Jonah is used to our weekend routine, but Jeremy isn’t, he’s much braver then I am. Jeremy can play and play and play with Jonah, he looks past the diagnosis and lives in the present. I on the other hand am obsessed with the future.
Everyone says: “Oh Jill you’re so brave.” But I’m not, I’m scared beyond belief. Every moment I do something for myself I feel ashamed that I’m not working to save our children’s lives. It’s a constant battle. On days that I’m happy, I ask myself is it ok to be happy? Am I allowed to be happy? Something feels wrong, my son is dying, I should never be happy. My realization, Jonah want’s me to be happy, he wants all of us to be high on life! I’m thinking I should go ahead and let myself be happy- when I feel happy. I will try it more often.
Writing is actually one of the things that I do to take a moment for myself. I feel better this month, last month was awful, Jonah was out of his mind. Throwing major temper tantrums, his teacher said he’d go on for 20 minutes. Twenty minutes is a long time. So we got rid of the Pad and increased his dosage of Vyvanse. We have set new routines for after school- snack, homework, dinner, choice time, story time and off to bed. The evenings run so much more smoothly without the damn I-pad and Jonah’s behavior has improved substantially. Writing this and I’m scared that I’ll jinx it.
I’m bracing myself for February, the toughest month of my year. The one conference that I really can’t miss is WORLD, which happens over Valentines week. Then we have Rare Disease Day, which really lasts a week. We work with the RDLA and camp out on Capital Hill, lobbying for rare disease initiatives. JJB used to have fundraisers in February, but something had to be cut from my schedule. Instead JJB has been leaning on our Holiday Remit drive. Which didn’t go so hot this year. :( I’m not gonna fret. Moving on.
I’m really looking forward to rare disease day. No, I don’t plan on Jonny coming with me to D.C. He just came to D.C. with me to the EveryLife Foundations, Rare Voice Award ceremony and gala. Plus he came last year and bent the ear of our state legislators. This year, I was asked to speak at the NIH RDD summit, I’ll be speaking about my personal transition from creating JJB to founding Phoenix Nest. A few weeks ago an article came out in the WSJ, about the same topic... Parents creating their own biotech’s. I had been interviewed for the feature piece months ago, I was really anxious for it to come out. I was surprised and a little disappointed when my hour interview was cut to one quote. I assume my version of the road from non-profit to for-profit didn’t meet the editors of the WSJ’s vision. Next month when I talk live to a room full of advocates, bio industry leaders, NIH and FDA officials, I will be given the platform to tell the truth, uncensored and unedited. I can’t wait. I’m smiling right now.
I want to give all of Jonny’s fans something to smile about too. JLM’s fans, the Elementary crew and especially the directors, carried our Holiday Remit fundraiser. Thank’s so much for your support and generosity! So here’s a scene to envision. A while back I meet with Jonny and Kristine for lunch- to discuss our next gig. I got there early and took a seat at the bar. It was a nice, classy old-school restaurant. I ordered a drink and got to work. The door opened and the afternoon sun broke through, a man stood in the entry, he was silhouetted by the sun, he took off his sunglasses and scanned the room. He looked like a gunslinger, entering a saloon ready to kick some ass. His sunglasses were wicked cool, he was sharp and lean. He took off his glasses and scanned the room, looking for me. He saw me and I thought, wow this guy would make a great James Bond. We took our table and started talking about JJB’s agenda. The End.
This blog is dedicated to Shannon 1993- December, 21st 2014 and Hunter 1999- January 7th 2015.