Today, I popped my head out of my hidey-hole for a little while to do a little bit of work that was important to me. It was tough - I’ve purposely left everything aside for a while as we all huddle together as a family and prep for Isaac’s surgery.
Which is tomorrow.
I purposely let my world stop turning. Perhaps in an attempt to make time stand still - just to give me a bit of time to breathe. Some time to cope. Some time to get ready for tomorrow.
I took part in a webinar with some legislative folks from the US, alongside my colleagues from NYU. I played a small part in our presentation but in the time I had, I wanted to speak up on behalf of the vulnerable patients out there looking for Hope. Lord knows I know how they feel. If I had the time today, I would have walked the people on the call through all that’s taken place in my world over the past few weeks, all while my world had stopped turning. I’d walk them through the fear and anger, desperation and loneliness. The waves of emotion that hit me, that hit my wife alongside me, as we try to come to terms with Tomorrow. But it’s not something I can do - living in a world battling against the odds, battling such a devastating rare disease - isn’t something I can show people. It’s an experience, and in times like these, one I wouldn’t wish on anyone.
It’s true, our journey has given us a unique perspective on life - one of priorities, one of love. First and always. But it’s also given us heartache and heartbreak.
Today, I wish I was able to convey to the legislators on our call how afraid I am at times like these. I wish I could convey the thoughts that run through my mind - thoughts like “is the the last bedtime story I’ll read to my son?” or “are we snuggling up together for the very last time?” Driving to the hospital today, I almost drowned in sorry and worry as I wondered whether we’d all go home together.
Today. I wish today could last forever, because I don’t want tomorrow to come.
Yesterday, I spoke with our neurosurgeon in prep for tomorrow’s surgery. In denial still, I asked if we really had to do this, if we really had to go ahead and see this through. His response was blunt and awakening - either we risk paralysis with the surgery, or we face certain paralysis if we don’t. He aptly put it - we’re in between a rock and a hard place on this, and there is only one way to get out.
Today, I was glad to take some time to do what I love most - standing up for those of you who are facing what we’re facing every day. For those of you who also get hit by the those waves, for those of you afraid. For those of you who only have Hope left to lean on. Hopefully some legislators on the call will have heard my words. And hopefully they’ll make a difference.
After my call, I came upstairs to give my boys a hug, to once again let them know I love them. When I asked Isaac how he was feeling about tomorrow, he bravely said to me something incredible, and something I’ll try to keep in mind always: “I don’t have to worry about tomorrow, Dad, because it’s not today.”
Today, we’re spending the rest of the day together. Isaac’s in the hospital and we’re going to try to spring him for the night before sneaking back tomorrow morning, long before dawn. Today, we’re going to celebrate his 13th birthday in our hotel room, just the four of us doing what we do best - being loving and happy together. Today we’re going to live and try to push our fears aside. Like Isaac says, we can worry about that, tomorrow.
Thanks for all of the notes and messages that have come our way. We’ve received them all, but have take some time away, as I said, to catch our breath. We’ll update as soon as we can. On this Easter Weekend, please keep our boy in your mind.
For Isaac, go out and hug the ones you love. Today. Call someone who means the world to you before that world stops turning. You only get one chance at this, make the most of it.
With lots of Love, and with thanks,