I am weak. I am vulnerable. I do cry. I do scream. I’m tired. I do feel anger. I do feel resentment. I am not perfect. I never will be perfect. I love with a love so strong that I’m not sure anyone else has ever felt. I am blessed. I’m lonely. I’m happy. I’m grateful. I’m real. Writing all of this down makes me feel good.
This is all still so new to me. How can it be new, because it’s so old? I feel I’m not supposed to feel any more feelings about everything that’s happened in my life because it’s been too long. I shouldn’t, couldn’t, still possibly feel the same feelings. Why do I? Am I weak? It will never be okay, it will never go away.
I’m sad. So very sad. No matter how long ago I heard the words Mitochondrial Disease they won’t go away. The words There Is No Cure, There is No Treatment still echo in my mind every day. I have tried so hard to beat it – but it keeps winning. Why can’t I win? I’m scared.
I’m angry. I feel guilt because of my anger. Why do I feel guilty for feeling angry? It makes me feel terrible that I feel anger. I should never let anger get in the way of happiness. So I try not to let it overcome happiness. I try. I focus on happiness and joy. I focus on love. On hope. I focus on the courage to fight each day with a smile on my face. I have faith to help me through all of this.
I’m tired. So very tired. But not near as tired as he is. His little body fights so hard every day just to be here. I can’t be tired, I won’t. He fights so hard. How can I complain that he hasn’t let me sleep one single night in the last five years? He hasn’t slept one single night in the last five years either. It has to be so much harder for him. I can’t be tired. I’m so happy he’s still here with me to wake me up and feed him during the night.
I want to fix him. I can’t. It's the worse feeling. The sick truth – Mito will most likely take my sons life. A crash could happen at any time that he may not be able to bounce back from. Mito will be the reason my son leaves me to be with Him. That’s something no parent wants to hear. It has made me view life entirely in a new way. A better, more appreciative way. I never knew children who died before. I never thought of it happening to me. It’s the worst thing anyone could ever experience. I’m not saying losing a loved one is easy, it’s just horrific to lose your own child. I’ve seen too many little ones get their angel wings way too soon. Mito is life changing for the better and for the worse.
I try to be as proactive as I can when he is ill. It’s the only thing I can do to help him, but is it enough? Sometimes I wonder if I’m being too proactive, to the point I feel crazy. Should I take him to the hospital, should I not?? I pack a bag, I wait, and then we always end up going. When I get there I realize I shouldn’t have waited. I should have had him there sooner. If I did maybe his stay wouldn’t have been so long. I blame myself. Always, everytime. A simple thing as vomiting twice in 4 hours can dehydrate my child for 23 hours. I wish I could give fluids at home to keep him out of the hospital. Who says that? What is sane or even close to normal about that? Nothing. I have another child who vomited for 2 days straight and never even got close to being in the hospital. Her body can fight back. My son is there every single time he gets the smallest illness. I have to face the reality it is the best place for him. No matter how many sticks he has to endure. It’s worth it in the end to help him get better. He can’t get better on his own. He has to have help and it’s my job to make sure he gets it. I know I can make it through his tears, his screams. Because at the end of it all, he looks at me and I see how much love he has for me. He always hugs me. I am his mom and I just helped him feel better at his worse. It’s truly rewarding, even in the worse of circumstances.
He fights for his life. Every day he should receive a gold medal for dealing with “his normal”. Every child with Mito should. Every special needs child should. Life should be fun. His fun is so different. But he does have fun. He has accomplished so many things I really didn’t think would be possible when he was diagnosed. He gives me hope. His smile lights up my world. His life is hard, but he just doesn’t seem to let it get him down. He is an example of extreme joy. I am here to make every single day the best I can for him. No matter what. No matter how hard it is. No matter how many doses of meds he fights, no matter how abnormal it really is. No matter how much he cries. No matter how hard I cry. I will make it the best I can.
I pray. I have faith. I believe in the power of prayer. I believe God chose this life for our family. I have to. It helps me make sense of all of this craziness. I don’t blame God, I don’t blame myself. At least not anymore. Yes, I’m guilty of asking God why he would do this to my child, to anyone’s child. I have felt guilt that I had to have done something wrong to cause this horrible disease for my child. I didn’t do anything. God knew Trace could handle this. He knew his strength before he was born. He created him. He put him here for a much bigger purpose than playing baseball, running, talking or any other normal child things. I’m not downplaying those things. They are wonderful. I have a child without special needs. I push Peyton to excel in everything she has ever done. I will never stop being proud of all of her accomplishments. Peyton is just as special to me as Trace. Just as loved. I am so blessed to be her mother. I have received the greatest of gifts. I am a mother to a special child and a special needs child.
It’s not easy. Nothing as amazing and rewarding as being a mother should be though. I am not your typical mother, I am a Mother Warrior. I will fight until the end.
Happy Mother's Day to all Mother Warriors.
Hope, Love, Courage &Faith,