Five years into Sanfilippo, the reality of “no treatment or no cure” has become a safe place for us. We aren’t scared of this world anymore.
Holland, is home.
We gathered our worldly dreams for Jayden and Brooklyn and mentally buried them 6ft. under.
Realizing time would eventually run out taught us to be present in every moment.
Accepting their fate made heaven all the more real.
In fact, it wasn’t until the birth of Ellie that I can honestly say I felt a desire to live again. It reminds me of Paul saying in Phil. 1:21-23, “For to me, to live is Christ, and to die is gain...having the desire to depart and be with Christ, for that is very much better”. I have started to crave Rev. 21:4, a real place where "He will wipe every tear from our eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away.”
To me, it is far safer to put my hope in eternity than a cure.
So with all this news about gene therapy, the Eliza video going viral, and the idea of a different future for Jayden and/or Brooklyn, has brought on a wreck of emotions.
My soul is restless again.
I feel like someone is trying to unbury the hopes and dreams I already laid to rest. And before you judge me for not wanting to fight, you have to walk 5 years in my shoes. Only people that have grieved the life of their children can understand.
Speaking with the O’Neills brought me back to the early days with Jayden, when we believed that treatment or a cure was around the corner. But over the years, that dream was placed the box, too. We started to settle in, and wait.
It’s the feeling of rest after a long fight, even if you've lost.
But this news of a cure, ever changing and diminishing as the days pass, has me frazzled. Only 9 children with MPSIIIA will even be eligible for the clinical trials. There is nothing I can do to get Brooklyn and Jayden to be one of those 9. Should I pick up the shovel and start digging? It is so dangerous to open that box of dreams.
All this reminds me how out of control I really am.
There is a real, honest part in us that doesn’t want to fight for a cure, only to be disappointed when it doesn't come. It is like watching your children die, twice.
But, I can’t deny that one little prayer I say everyday when I have surrender my babies to our heavenly Father…
I trust you, Lord…but please, not today. Don’t take them today. I’m not ready.
So it is with that simple prayer, I will fight for a cure. But not for one second, fooling myself that this is where my hope comes from. We will fight because that is what we do until the day we are all called home. We fight because it is in the fight, God is glorified in and through us.
And that box? It needs to stay buried. It’s full of the wrong dreams anyway.