My dearest, most perfect, soulful little boy -
my one and only Griffin,
How do I count the ways I love you? How do I tell you enough how profoundly magnificent you are? How do I make time stop? Why can't I find the way to heal your broken heart and give you the long and beautiful life you deserve? How do I learn to let you go?
I just pressed the button and gave you your first doses of dilaudid through the self administering pump, and it felt like I was ripping my own heart out of my chest. I know this is loving you, but it feels like betrayal as I watched you fight the effects of the drugs because you still have so much fight in you, because I know you never want to miss a moment of anything. I don't want you to miss anything either.
The last three months have been an unspeakable rollercoaster: from sitting in this same room a floor down and being told there is no more hope and your time here with us is limited, to a highly risky and experimental cath procedure giving us some hope again, to finally making it to the stepdown unit after 8 1/2 months here and thinking we were finally on the brink of taking you home, to now being back in the ICU and being told once-and-for-all there is nothing left we can do for you. I do not know how to wrap my head around the fact that 3 days ago I was getting furniture for our new home here in CA to take you to, watching excitedly as the echos showed improvement on your function and giving us a little more hope each time, breathing a little easier each time - to trying to learn how to let you go, to being forced to embrace that this is what loving you looks like now.
I don't want to let you go my sweet boy.
I waited and prayed for 12 years for you. I thought this would all look so different, and when it didn't look how I thought it would, I embraced it and still believed I would have a lifetime of loving you at least. I thought if we just made it past your first birthday, if we just made it here to CA you would defy the odds and make a believer out of everyone with the miracles bestowed on you. I don't know how to let all of that go. I don't know how to let just 2 1/2 years be enough, because it's not enough. I want more, for you, for our family, for myself.
But it does not appear we will get more. And it is never "just" when it comes to you. You accomplished more and touched more people's lives in your short time here on earth so far, than most of us will ever achieve in five lifetimes. You healed me in ways I never knew I needed or thought possible. You taught me a kind of love so few people are privileged to know. Your smile lights up the entire room the way the sun does the sky. Your easy nature, gentle spirit, and freely shared joy makes everyone around you rise to the occasion and be the best version of themselves they can be. You are a cherub among sinners.
So as I press the button again and feel another piece of my heart break away from me, I hope you know I love you with every fiber of my being, and I always will. I hope you feel that in the last vestiges of what I have been left with to care for you and make it all better. I hope you know I would trade you places in an instant if God would allow me that. I hope you know mommy did all she could, and I will fight with you and for you until the very last step I am allowed to go. I hope you wait in heaven for me, and if feels like no time at all has passed for you until I am there with you - and I hope you come sprinting into my arms with your perfect, beautiful, giant smile and one of your heart melting hugs that never ends when I get there. I hope I have made your life magical and beautiful and as perfect as it could be. I hope I made your days as bright as you have mine. I hope I made you feel as special and incredibly loved as you are. I hope your life and my love was more than enough.
I wish so much I could keep you here with me. Life, as it seems to me now, will be profoundly long and painful without you. I don't want to do this, I don't want to say goodbye to you. You are my whole heart. I love you feels so small to say to you, but I love you, endlessly and for always.
I love you the most and the best in the whole wide world my Squish.
Mommy
Comments