Community Submission by: Ameera Rey

One minute you are laying in bed. Eyes closed. Trying to go to sleep. Then you have an out-of-body experience.

You are in the hospital. A doctor has just walked in and told you the person you love so much is dead. You are sobbing. So extremely angry. Angry you couldn’t save him. Angry you couldn’t protect him. Angry his body was riddled with a disease that stole his life. You’re so angry that you are yelling, sobbing, and kicking the wall.

Then all of a sudden you are back. Back in your bed. You check the baby monitor. The person you love so much is still here. Alive.

Now I cherish each and every time he smiles.

But these thoughts and out-of-body experiences never go anyway. You treasure the time you have with him. But in the back of your mind you know he isn’t going to be here forever.

You worry and question yourself. “Is he suffering?” “Is he depressed?” “God, I just wish you could heal him.” I pray every day. I pray that God will protect my heart.

I’ve been grieving a death that hasn’t happened. Yes, that’s possible. It’s called anticipatory grief.

My brother has been on this earth for a decade and a half. Multiple times he’s knocked on death’s door, and each time he has been turned away. There will be a day that comes that he isn’t turned away from that door. I wish it was something I didn’t think about. But it comes with being a caregiver to someone who has a life-limiting illness.

Someday that smile will become a memory.

When these “episodes” happen it causes me to go back and think of those good days we have had together. The car rides holding hands and him smiling.  I recall the joy that radiates off of him. His infectious smile has become rare. I realized I took that smile for granted. Now I cherish each and every time he smiles.

I hope one day he will be able to meet my first born child. Regardless my children will know my brother, and how wonderful he was.

When he does die I never want him to be forgotten. I worry I will forget the little details about him when he’s gone. But then remember, I will never forget him. He’s made such a big impact in my life.

I have “episodes” of me being at his funeral. I’ve always imagined it being beautiful but so sad at the same time. But that’s a topic for another time.

Someday that smile will become a memory. I hate seeing him suffer, but every day that he is here I am grateful. But then that makes me think, “Am I selfish?” He doesn’t deserve to suffer but I never want my brother to leave me. 

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5 thoughts on “Anticipatory Grief: Sibling Perspective”

  1. Oh my dearest daughter. If I could give birth to 5 more of you I wouldn’t hesitate. Your brother and I love you more than you will ever know.. God is good all the time. I still have faith and believe we are witnesses to something grand our Heavenly Father has in store for us. Just keep your eyes wide open, be happy and don’t miss the best is yet to come!! I Love love love you Ameera Rey 🥰😘

  2. An open and tender sharing of how anticipatory grief can affect a caregiver’s experience. Ameera is a remarkably mindful participant in Tony’s life. We feel her love and terror, her acceptance and her fear. All this and more, shared with a kind heart from a rare human! Thank you Ameera, for expressing so lovingly that which haunts many our lives.

  3. Ameera I am in tears. This is so beautiful and heart-wrenching. I pray for you and Tony constantly and I know that God is always watching over him and over you. You do so much for Tony and he loves you so much. One day he’ll be able to tell you that himself.

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