Grieving ;;
- M.Soto
- Oct 14, 2020
- 3 min read
I heard that #grieving a lost one is really tough, and I always hear the death of a child is just a horrific thing to go through. For the parents that have had to endure that Im not going to say sorry because when I hear sorry now it kinda bothers me. Im going to tell you you are so damn strong. So with this disease right what it comes down too is life said "I'm going to hand you a task so huge that its meant to break you but it won't break you because you will learn to be #strong". Stronger than you ever imagined. Everyday I am grieving my child whom is still alive. Some days the grieving process is harder than others. Those days that we are in the hospital or get test results back that aren't great to hear those are harder days. I feel like my life is a whole grieving rollercoaster ride, and Ive had to learn how to ride it. I can tell you that I still don't think I'm doing it correctly but for goodness sake should anyone know how to grieve correctly. I get internally upset to the point of just wanting to be left alone and not wanting to repeat what I just had to go through but when I'm ready to speak I want my loved ones to listen. Man, even writing that I feel so selfish. I just want to lay around when I'm going through it. Cleaning, cooking, working, kids, boyfriend, school, life I don't want to deal with it when I'm going through it. As the years pass my son is getting worse. I everyday watch his body just fail him slowly and I know one day it will fail him completely and I know I will have to deal with that. oh man I can't tell you how hard it has been these last couple weeks. With his cognitive abilities declining soo rapidly we are afraid that we have maybe another 5 cognitive years with him. Wait let me put that in simple English! We have about 5 more years of him knowing and understanding before it all becomes machines and medication and well him just not all there. We don't know how much more time we have with him in general and no one has that answer but we hope to make the best of the next 10 years because we hope we get that much time more with him. When we first were diagnosed we were told he was going to be one of the more severe cases but the first couple years didn't really show that well now its showing that and as yearly we hear about the other kids passing and their ages I am so damn scared. I have sat with my boyfriend as we plan out our future and have had to be brutally honest with him about certain situations and I can see that not even he knows how I'm going to get through those times. We see about 9 different specialist but that's a post for another day! Ive been avoiding it for long enough but with us having declines that happen out of no where and they can be pretty scary I have been asked to start writing his living will. Even typing that brought tears to my eyes. Umm, how, do, I, even, start. I meet with the team here soon who will help me complete it and have it saved within his medical chart and oh man that is hard. I have learned to be grateful for the wonderful moments. I have learned to be more affectionate because that one was a struggle for me and I'm learning to just live day by day more because that's all I can do. I can't tell you all that I'm going to be okay but I can tell you that I will try. Even now I can't tell you that I've been okay but I can tell you that I've been trying. For those grieving what are some positive things you have found to help you?
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