I don't have the emotional energy to write a long post but I thought a quick update was needed. A few days ago Ollie started having major seizures again, despite the fact that he's on 3 different anti seizure medications. One episode was so intense that he completely stopped breathing. He almost died, we starred down at his sweet pale face, absolutely helpless and waited for him, begged him, to take a breath, he just laid there lifeless for nearly a minute. Until out of nowhere, something in his brain finally decided "No, I'm not ready yet, I'm going to keep on fighting" and he started breathing again.
His hospice team suggested we start discussing final arrangements for him, because although we could very well have years and months to love and hold him, we could also lose him at any moment. You just never know with MLD. Late infantile MLD takes children as young as 2.5 years old and as old as 9, the average is 4.8years old. Ollie's MLD is among the faster progressing mutations so we truly need to enjoy every minute we have with him.
But how do we plan final arrangements for our 3 year old son? Our sweet baby boy? How do we sit down and discuss the unthinkable? He just joined us in this world a few short years ago, how unfair that his journey should end so soon. How do we talk about him being in a cemetery as we rock him to sleep in our arms? No parent should ever, ever, have to do this. We're hurting right now, hearts, souls and bodies. Our hearts break a little more with each passing day.