Avleigh's Journey

I’m the type of person that will mostly roll with the punches. Life is hard and the only way to survive is to accept the hardship, learn from it and move on. But what happens when you don’t know how to move on? What happens when the feeling of moving on brings on guilt and grief? Raising a terminally ill child requires you to face the ugly reality and prepare your mind for that day when they will leave this world. You go through countless hours, days, months, years doing all that you can to protect her from what is just destined to happen. You fight. You cry. You pray. No matter how much you want it, no matter what you do, the ending is still harder than you could ever imagine. And maybe that’s the bigger issue… it’s the ending of the parts of your life that are the most valuable to you. It’s the parts of your life where such a special child has depended on you for support, advocacy, love and life. Then at the end of that fight it’s all just gone. Everything you’ve fought for in the last 6, or how ever many, years is now just a memory. Numb… that’s the best description for the feelings that you have in the first few months. You know it happened, you know she’s gone but the reality of life without her is still so surreal. You will lie in bed trying desperately to visualize her face, hear her laugh and to stare into her beautiful eyes. The memories of her last, trying days often tend to be stronger than the happy memories. Seeing her frail body, her inability to fully open her eyes and you begin to wonder was she really at peace or was she afraid. Did my presence and love give her enough comfort to know she was and always will be safe.

In the beginning, you have the feeling of wanting and needing to be alone. People don’t know what to say and neither do you. You try to distance yourself to not have that awkward moment. It’s not that you don’t want to see people, it’s just hard to face the reality when you know you will be reminded the reality when they give their condolences and offer up their prayers. It’s not that that is wrong, it’s just a hard thing to face in the beginning. As time goes by, it does get easier to be around others. It’s almost like everyone else begins to forget. Everyone else has moved on while you sit there stuck in this rut, quick sand, that feels like you will never be able to pull yourself out of.

Like I mentioned in the beginning, I’m one that rolls with it. I pick up my feelings, tuck them away and go out into the world. I returned to work only a few weeks after Avleigh’s passing. I needed it. I needed routine and to feel somewhat normal. Then at the end of each day you take care of your family, or on some days they take care of you, then you run down the day in your head as soon as it hits the pillow. Laying there seeing her there just like it was the night she passed. I can remember holding her until the only parts of her body that were still warm were the parts that were touching mine. You shake yourself from those thoughts and begin thinking of the good times. Her beautiful smile and excitement when she would see you. I will often fall back on the many videos that we have of her just to see the life in her once again. You do this back and forth until you finally fall asleep at night. Then you do it all over again the next day, and the next… and the next. Some days are a little easier than others. You begin to think that you are starting to get really good at being “normal” when in front of others. I mean I can really put on a good show when I need to. You bury it all in the back of your mind and focus on what’s in front of you. Then sometimes the smallest things could trigger you and that fake it image that you are putting on slowly fades away. Then you go back into isolation until you can pull yourself together again. You begin to feel guilt for moving on. Guilt enjoying yourself. Guilt for all the things you wanted to do to protect her that you had no control over. It’s such a sad and dark place to be because you know that you have no reason for guilt. So why does the mind take you there to begin with. She wouldn’t want this for me. We all know grieving is a long process and is different for everyone. I just pray that whatever lesson this experience was meant to teach me has been learned. Forgive, live life to the fullest and love hard.