OK. I want to think happy thoughts, but like every Sanfilippo parent will tell you, they are hard come birthday time. Birthdays now mark regression…or another year less you have with them…or closer to your number being called.
I started a tablecloth where Jut and I share all the things the kids each did that year, our favorite memories and then have people sign it. It is good to think back to all the happy things we remember and all we enjoyed with them, but it is sad to that Jayden likes fewer and fewer things and says fewer and fewer things….
It is sad that I wonder if we will get a chance to finish the tablecloth (it is marked for 18 years) and set it out at his graduation party….or I wonder if it’s more realistic that it will be displayed on a table at his funeral?
I hear you.
Don’t say that, you say. Don’t think that way, Stef.
But-happy thoughts don’t make statistics or a diagnosis go away. I don’t want to stay in this place but I would be ignorant if I tried to pretend that reality didn’t exist. And, yes, I hate it here and I am sure if you love our family, you don’t like thinking about it either.
Death sucks for us who are still alive. Even the thought of loosing a loved one. But, more and more…I am trying to see this life for what it is. And, the more I think of heaven, the more I want to go. I also don’t want my kids to stay here any longer than they have to. Heaven is a place that is BETTER THAN earth without sorrow, pain, separation, loss, hurt, death, or Sanfilippo. It's like someone saying, Jayden and Brooklyn can go to this place and be cured, let's say Hawaii, but you can visit...would I want them to go? Heaven has people you love, sunny days, no divorce, no gossip, no fights. Beautiful nature, streets with no pot holes, and maybe even cars that don’t rust. Houses with porches, with, I bet, neighbors you enjoy. A job and a boss you LOVE. Hours you like working, getting paid exactly what you need, and you want nothing more.
WHY do we sit here and hold onto this generic life?! Why can’t we trust what we can’t see?! We watch CRIBS, and know that there is “more” out there….but what if that isn’t what “prosperity” means? What would change if we lived with the expectation that Heaven was better than sex, better than chocolate, better than college, better than marriage, better than kids, better than growing old?
I want my kids to go to Heaven, not Harvard.
So, birthdays. Yeah, the idea of never touching them again, never hearing them again, never watching them get married, have a grandbaby, or just laughing with them once more this side of heaven is so painful…….I can only stay in this place awhile.
Just give me Jesus.
But-Sanfilippo has two sides. That is one, and in the same moment, my sad thoughts do this crazy thing...they actually enrich my everyday moments. You know, the ones we normally take for granted or miss? They get sweeter and more precious when I think they are numbered. Try it. For a moment, look at your child, or spouse and think what your life would be like if now was the last moment you could spend with them. See?
So, I rejoice again in all the wonderful things and times and laughs we DID have this year, and the great party we had with friends and family! What great memories!
