Liquid Hope

In 6 days we’ll hold in our hands liquid hope. 

How we have longed for this day. Our hearts swollen with gratitude that we get this chance. 

Thankful to find our son, sweet Oliver counted among the 125 small ones with access to this medication. 

What do we hope for? What are the stakes exactly? 

If we could hear “mama” tumble out of those beautiful red lips. Might we hear an “I love you” just one.more.time. in my whole life? I promise myself that I will record it and I will cling to it when he can so no words. When the seizures make him goes deep within and we can’t find the boy we love in that body. 

We know anytime he says those three words, could be the last; we’ve lived with that horror everyday. 

We know what it is to have and have taken away. Repeatedly. 

It can break one’s spirit, and yet it has not broken ours; for we know we are entitled to nothing. 

All is grace. 

Our unique boy with bright eyes and sloppy kisses. 

We can only pray that the liquid hope runs through his body like healing lava. That it somehow restores, unlocks and sets free the child we once knew so well...