There comes a time a time in life where we have to say goodbye. It never is easy no, no matter the case. Sometimes it really is a “see ya later” situation. In my case this pending goodbye is a forever goodbye. This goodbye will happen when they close her tiny casket and that will be the last time I ever see her. I will weep with grief and be inconsolable. That will be my last goodbye to my baby.
My heart is shattered and my stomach in knots as I write this. I have watched my child continue to go backward for some time now, and it isn’t getting any easier. I just keep seeing sign after sign of her slipping away. She can’t even swallow her own saliva anymore. She doesn’t really want to eat anymore and all she does is sleep. The small amount of time she is awake, she is either too exhausted to interact, or she is crying. She no longer plays the way she would, and the sparkle in her eyes is slowly fading away. I will soon be saying goodbye to my baby.
It seems just like yesterday my whole world was shattered at the news of her terminal illness. I refused to believe it and was convinced she was going to beat this. I would continue to push her to her limits to see how far she would go. I surrounded her with so much love and prayed my heart out for her everyday. I still am in denial and I still think this is just a fluke thing she will bounce back from, and I still pray my heart out for her. The difference this time is her sparkle is fading quickly. I know I will soon say goodbye to my baby.
Her skin was a beautiful olive color and it was always glowing. She always looked like she had just left the tanning bed. Her hair was like black silk and it was so incredibly thick. I called her my little mermaid due to her “mermaid” hair and her love for the water. Today, her skin is pale and almost grey. Her once silky hair shiny hair is dull and rough. Instead of looking sun-kissed, she looks like death is dragging her down. Soon I will say goodbye to my baby.
She has the most contagious smile that lights up the room, and her laugh is so infectious. When anyone heard her deep belly laugh, you just couldn’t help but giggle with her. Her eyes shone so bright filled with so much hope and love. Today her bright eyes are dim, and she hasn’t laughed in such a long time. She rarely smiles and when she does, that little light is so dim.
Soon I sill say goodbye to my baby.
She would love playing on her tablet and interacting with her siblings. She would get so excited to be able to manipulate something on her own. She loved being just like everyone else. Today she just stares at it with no movements of her hands, looking blankly at the screen. No more, no more interacting, and no more of her really caring. It hurts so bad to see her lose interest in something she loves so much. Soon I will say goodbye to my baby.
She would love to splash around in the water. She would coo and laugh, she was finally free. She would fuss when I told her it was time to get out and give me the stink eye. She loved her bath time, especially with bubbles, but things have changed. Today she doesn’t care much if she is in the water. She doesn’t really even enjoy the water like she once did. Bath time has become more of a routine and less of a fun thing. Her once loud giggles for bath time have disappeared. I now carry her limp tired body and carefully place her in the water. I carefully and quickly wash her hair and body and then she is out. I carry her wet limp body to get dressed and she really doesn’t babble much at all. I try to get clothes on her, but her body is so limp, it becomes so hard and I can just tell she hurts. I will soon be saying goodbye to my baby.
Aurora, you have given us three amazing years! You have taught us more than I could ever imagine. You have shown us what an amazing fighter you are and taught us to never give up. I know you are tired my dear and that is ok, I will carry you as far as you need me to. I will hold you until you take your last breath, I will love you beyond the grave, I am your mother and you have a piece of my heart that I can never get back. I know your days are truly numbered, but I was in denial and never wanted to let you go. I can see you slowly slipping away, I know in the past you would bounce back, but this time feels so different. This time I don’t think you will bounce back. I want you to, but I know it is not up to me. I will still pray my heart out, I will never give up! The day I will give up on you coming back from this is the day I tell you goodbye for the last time. I love you Aurora forever and ever, here on earth, and until we meet in heaven. I will whisper mommy loves you over and over until you are no longer here. I will rock you and love on you until you slip away. I will make sure feel love, until you tell me goodbye. I will soon say goodbye to my baby.
As always thank you for reading and supporting us through this difficult journey. Feel free to share my story, but please make sure you only share the link - https://aurorasjourneywithpch.wordpress.com/ - and don’t copy and paste. Thank you
Bobbi Jo Schnathorst is the granddaughter of Roger Kasa and, with her husband Skip, are the parents of six children, including daughter Aurora. Aurora was born with a rare genetic disease called Pontocerebellar Hypoplasia and has exceeded all expectations for life expectancy.
