There is so much I have been wanting to write lately. So many emotions that have been swimming through my mind. I have spent hours. days. weeks. feeling out of control. Feeling like I am going crazy. Unable to really understand or make sense of these feelings. I push them out of my mind as often as possible because if they are there- I am drowning. I cant think about anything else. I cant function properly. My patience is minimal. My emotions are of either anger or tears. and I am just a mess.
As I try to make sense of what I am feeling. I feel its justified and I understand it. It makes sense to me. but I cant put it into the right words or emotions that anyone else could understand.
I put myself in their shoes and try to explain it so they can really get it. but it rarely works.
There are times I have said something. Expressed my feelings and it hurts someone elses feelings or they become upset with me. I am trying. I promise. I am getting through life and I am living with these emotions. I am trying not to make them interfere with anyone else but sometimes they do.
Feelings of jealously.
Feelings of frustration.
Feelings of betrayal.
Feelings of 'you just don't get it'.
Feelings of lonely.
Feelings of fear.
What are these feelings steaming back to?
That Makenzie died.
That I had a little girl. Who lived. Who breathed. Who started out healthy. Happy. and the absolute light of our life. and then she got sick. We saw her not act normal. We questioned doctors and ourselves. We followed advice. We didn't follow advice. We walked the road of first time parents. We held her as she declined in health. We knew her. We lived in a hospital room. We were given options of her life. We made decisions. We knew the day our daughter would die. We knew how many hours were left in her life. We had to say goodbye. We held our child as she took her last breath. We planned a funeral. We buried her. We picked out a headstone. We spend hours upon hours at her spot. The place her body would forever lay. and life has still continued. We have still woken up everyday. We have continued to breath. and we have spent the last 4 years. 1 month. and 14 days learning how to live with this. Learning how to live with a daughter who is dead. Learning how to live our life as if its okay. Learning to understand that we are now different. We see things differently. We talk different. We believe different. We love different. We see what it means to have life end. We understand the pain. Its not just a fear. A fear that every other parent has. Its now reality. and after all this time I still feel like I know nothing. Yet when I look back at the day after she died. I feel like an expert compared to that girl.
I guess everyday. every month. every year brings a new challenge. It brings a new person out of us. It brings new emotions and it brings new feelings. All that we don't understand. All that we cant explain. All that we are bracing to get through.
Every step of this road has been hard.
and even though I know how to get through the first year. the second year. and the third year. I have no fucking idea how to get through the forth year, fifth year, sixth year, seventh year, eighth year, ninth year, tenth year or any year beyond that. They will all bring new feelings. New challenges and we will have to figure out how to get through it.
Right now I am on year 4. I am only 1 month in and I feel I am failing. I spend many days. Many hours. In tears. Not able to function. and with a family and responsibilities to tend to. I cant live like that. This past month and half have been so confusing. They have been full of new obstacles.
and I might now be handling them the best.
or better yet. I might understand them as a beavered parent but I don't understand them as an everyday human being. and to try and explain them. is near impossible.
With year 4. My fears are of my Makenzie slipping further and further from the memory of not only myself but of everyone that knew her. Its been "awhile" now. It wasn't last year. or 2 years ago... Its been "awhile".
Awhile since she lived. Since she made a memory. Since she did something that we could talk about.
and its becoming clearer now more than ever. That this is only going to get worse. We are just getting further and further away from her. What she was. and what we all knew. We are meeting more people that never knew she existed and never will. We are around less people who held her. Smelled her. or made their own memory with her.
She had only so much that was her.
In our family.... If you hear or see leggings- most of us will think of her. That was a memory that was just for her. If you hear the song "Chicken Fried" by Zac Brown Band you will know that was the only song Ryan could play that would calm her down when he was alone with her for that hour everyday after work before I got home. and that is Kenzie's song. If you hear the word SMA/SMARD you think of Makenzie. because its rare. Its a rare disease that not a lot of people have heard of. When she was first diagnosed NONE of us had ever heard of it. so it was something that was JUST Makenzies.
In our family those are just a couple things that were just hers. It was something that no matter where you were or what you were doing it made you think of Makenzie. It made her real. It made her have a life and a story even for just a minute.
It was my life line. To know that Makenzie was still here. That she had a memory. That she would continue to have a memory and that she wouldn't be forgotten.
but we are going on year 4.
Leggings are more popular and more people wear them.
"Chicken Fried" has been played at various events where new memories are made so when that song comes on it makes you think of when so and so slip and fell instead of remembering how Ryan would desperately play that song to quiet a screaming baby.
and the advancements in SMARD/SMA are dramatic. Unfortunately many more little lives have been effected. Many more stories have been written. and research is being done. What was once so foreign is no longer.
Now all of these little examples are part of life. They are bound to happen and they are just apart of living. but for me they are and ending. They are an ending to what I have feared more than anything since the day we knew Makenzie would not share her life with us. and that is she will not be remembered. That her life will have to be reminded. That when you hear her name you will have to stop for a minute to dig out that memory of who she was.
This year. I am understand how real this is. Not that anyone is trying to forget. Not that anyone is doing anything but be normal. and for me to be angry. or upset. or jealous. or frustrated. or scared...
It all makes sense to me. It makes sense in my mind. The mind of a Mom who's daughter is buried in the ground. but its harder to explain. and its harder for someone else to understand why something "silly" hurts me so much.
and right now I am trying to figure out and work through how I can accept this and be okay. because I cant stop life from happening. I cant make the entire world keep a memory that is forever changing.
I know I need to continue writing. Because even if it doesn't make sense to you. Its helping me understand it. and its helping me figure out how I need to change. How I need to understand other people. How I cant place blame or anger. That those feelings shouldn't be involved with Makenzie.
At the end of the day it still hurts like hell.
I am still living every day without her. and There is not a day or an hour or sometimes a minute that goes by that I don't long to be with her again. That I don't catch a smell of her lotion, or hear a song we danced to, or feel a certain fabric that I remember holding.
My memories of her are very sacred to me. and when something happens to them. When they are changed. When a new memory is made with something that was JUST Makenzies. I sometimes don't know how to handle myself. I don't know how to react. and I don't always do the right thing. but I am trying. and learning. I hope to figure out how to make it through the fourth year. before its completely over with. but then the fifth year starts. and that will bring all new challenges. So please forgive me. Know that I am trying and I am learning and I wont always write things that will make sense I wont always say the right thing.
Sometimes I need to be called out. I need to be put in my place and I need to be reminded I am not thinking or acting rationally. and other times I need to just be told I am right (even if I am not).
I miss her. I miss my daughter. I miss being her mum. It hurts to have her life over. and to live the rest of my life on 5 months of life. Its not enough.
