Luke
Luke,
I sat at your bedside tonight, like I always do, and marveled how beautiful you are. You have perfect features. Your eyes sparkle when you smile. Your temperament is happy. And yet I just ache when I think of where you "should" be. Talking, playing hand games, pointing at stuff, and doing other 2 almost 3 year old things
I sat there and silently cried knowing how grossly inadequate I am at addressing your needs, or even figuring them out. I offered yet another earnest, fervent, pleading prayer to our Father in Heaven on your behalf. It's not my first, and I'm sure it won't be the last.
I guess I just wanted to tell you Luke that I love you so much it hurts. And to say I'm so sorry that you have to be a guinea pig. I wish I could be 100% consistent and know exactly what to do, but I don't.
I have had feelings of comfort that everything will turn out alright, whether that means you grow and progress normally, or not. It will be alright. I can't say this is a trial of my faith, because it's not. I know where we've come from and where we're going and that we will be made perfect. I'm just sorry I'm not better for you now.
I'm not giving up. I try to implement more of your therapy everyday. I'm now going to tackle the daunting task of altering your diet to see if that can't help improve toxicity levels in your system and therefore your brain function. I've been purposefully avoiding it because cooking for your siblings has never been easy. We have lots of complaining and gagging and it's a huge trigger for me to just lose it. I've told your Dad that I'm pretty sure I've developed PTSD from cooking and then serving food to my children. I feel so much anxiety just doing it.
But I will do it and make change for you. It will be hard on everyone, but if you improve, it will be worth it.
Don't give up on your mom. We're going to figure this out. And in the end, it will all be okay.
I love you.
Mama
I sat at your bedside tonight, like I always do, and marveled how beautiful you are. You have perfect features. Your eyes sparkle when you smile. Your temperament is happy. And yet I just ache when I think of where you "should" be. Talking, playing hand games, pointing at stuff, and doing other 2 almost 3 year old things
I sat there and silently cried knowing how grossly inadequate I am at addressing your needs, or even figuring them out. I offered yet another earnest, fervent, pleading prayer to our Father in Heaven on your behalf. It's not my first, and I'm sure it won't be the last.
I guess I just wanted to tell you Luke that I love you so much it hurts. And to say I'm so sorry that you have to be a guinea pig. I wish I could be 100% consistent and know exactly what to do, but I don't.
I have had feelings of comfort that everything will turn out alright, whether that means you grow and progress normally, or not. It will be alright. I can't say this is a trial of my faith, because it's not. I know where we've come from and where we're going and that we will be made perfect. I'm just sorry I'm not better for you now.
I'm not giving up. I try to implement more of your therapy everyday. I'm now going to tackle the daunting task of altering your diet to see if that can't help improve toxicity levels in your system and therefore your brain function. I've been purposefully avoiding it because cooking for your siblings has never been easy. We have lots of complaining and gagging and it's a huge trigger for me to just lose it. I've told your Dad that I'm pretty sure I've developed PTSD from cooking and then serving food to my children. I feel so much anxiety just doing it.
But I will do it and make change for you. It will be hard on everyone, but if you improve, it will be worth it.
Don't give up on your mom. We're going to figure this out. And in the end, it will all be okay.
I love you.
Mama
Comments
It might be worth looking into hiring someone to help you with dinners. I know you are a super mom and very capable, but if it would save your sanity then it might be worth it.
This might be a good teaching opportunity for your older kids. I'm sure they love Luke very much and would want to help him. Teach him why it's so important for him to eat the right foods, and enlist their help. Let them help plan good food that will help Luke. Ask for their help in showing Luke that the food is yummy, etc.