I am home. I just made Ethan’s breakfast and I can only sit. Each day has gotten harder. I wonder when or if it will ever get easier. Everything about this morning is making me miss you so much I want to scream, punch, throw, puke and everything else. I just went to the fridge and said “oh shit, I am out of meals for Jake, I need to make more” but the thing is I don’t. I don’t ever need to measure out to the tenth of a gram your meals. I don’t need to buy avocados every other day. I don’t need to go to 4 seasons for coconut oil. And Wednesday came a whole new case of keto cal AND your poly citra. What the hell am I supposed to do with it? I can’t stand this. I want you here with me and I want to make your meals. And yes, I know I bitched but I want to bitch about it again. I want to have those crazy stressed out mornings when I need to wake you up and give you your keto by 7, change you, give you your meds and breakfast by 8:15 and get you out to Prospect. Never again. How can that be? Never to minor improvements, never to yoga, never waiting for Xavier, everything that was my life is gone. What am I going to do?
Jakey, please help me. Help all of us. Ethan just answered the TV with that commercial about lawyers and traumatic brain injury and said “yeah, head injuries – like Jake”. We are all suffering without you.
I talked to Erin at Dr. Grottkau’s office yesterday. They were so sad. She said that Dr. Grottkau had to leave when we learned about what happened. Do you know what else she told me though? I hope it makes you feel better too – it made me feel a lot better. She told me of another patient of Dr. Grottkau’s who had a leukodystrophy (not yet confirmed but pretty sure that was what you had – we would have met with Dr. Eichler on Wednesday). He also had a broken femur and spica cast. He made it out of the cast but died two weeks later and his mom said that in the days leading up to it he was sad too. It seems so unbelievable that another little boy with a leukodystrophy, broke his femur, and then died. Why do so many fucked up disorders/diseases exist?
Jakey, you were so sad. Dr. Hawthorne noticed. I told Daddy I was afraid you were depressed. It was like you already left. But the story of the little boy makes me feel less alone. You weren’t here as long as I wanted but maybe this was your destiny. I wish it wasn’t but I am trying to make sense of a life without you. Not sure it is working. Alright, Jakey. We are heading over to sit with you again soon. Our last day with private time with you. I am going to soak up every minute I can have. I love you more than you can ever know and miss you more than I can even imagine.