Grief

I don't know why, but I woke up filled with grief today. Nothing happened. Gwendolyn is fine. But some days it is just hard not to feel the heaviness of grief...not to feel overwhelmed with sadness. No matter how many we have met, I've never become used to meeting another sweet family newly impacted by SMA -- knowing what they will face. No matter how many funerals I've witnessed, I've never become used to hearing another darling baby lost their fight to SMA. And while I try to only see Gwendolyn's smiles, I've never become used to watching my baby degenerate.

Yet, on days like today, the days that are the hardest, most painful days, the days of worry and fear, the days I am forced to see my daughter's abilities decline, the days I feel tortured with the knowledge that the disease is progressing and will eventually leave me without her, childless -- on those days, I know my heavy heart is nothing compared to what I will face when I no longer have Gwendolyn. Right now I can fear the hypothetical -- and believe me it is beyond painful. But, I know it is a fraction of the emptiness I will feel when the loss of Gwendolyn is a reality. And I am petrified. I often attempt to avoid it, but Gwendolyn has a TERMINAL illness and as much as I try, that ugly reality always looms somewhere. My heart broke on the day of Gwendolyn's SMA diagnosis, but with each smile, each funny thing she does, Gwendolyn helps to heal it. When I lose her there will be a chasm in my heart so large it will never fully heal -- never. And I know that somehow I will have to learn to live with a fraction of myself. And I'm not sure how to do that.

Below I have posted one of the most honest, poignant pieces I have ever read about grief. It was written by an SMA mother, Monica English, who lost her daughter to SMA.

 

What I Have Learned About Grief

What I have learned about grief is that I knew nothing of grief before I was thrust into it.

What I have learned about grief is that experiencing the loss of a child through other parents gave me no real insight into what I feel now.

What I have learned of grief is that it is inconsistent - some moments/hours/days I am fine - really! But some moments/hours/days I feel as if someone is sitting in the middle of my chest making it impossible to breathe.

What I have learned about grief is that it doesn't make it impossible to function in some arenas - I go to work, go out with my husband, go grocery shopping as well as I always have.

What I have learned about grief is that it does make it impossible to function in other arenas, going to church was unbearably difficult, attending a family dinner was almost impossible, and the thought of attending a family reunion has turned me into a scared little child.

What I have learned about grief is that it hits often without warning or any provocation.

What I have learned about grief is that "milestones" are so difficult to cross not because I am remembering "one week ago" or "two weeks ago" but because every milestone seems to make her more dead.

What I have learned about grief is that family pictures both soothe and hurt my heart. I appreciate and treasure those pictures with all of us together, but I also know when I look, that every person in that picture will change but that child.

What I have learned about grief is that it freezes that person in time. My child will never be older than four, for me she will always be a little girl who loves Wizard of Oz and princesses and wears size 6 dresses. Even when my other children have babies of their own she will be four years old.

What I have learned about grief is that it is impossible not to replay my actions that day over and over again.

What I have learned about grief is that it is also impossible not to take the responsibility for her death on my shoulders - even if that isn't logical.

What I have learned about grief is that the things I thought would be difficult, like giving medical equipment and wheelchairs away, explaining death to the other children, or explaining to someone who was unaware of her death isn't and things that I would have thought would be easy, like washing her clothes for the last time, going to the movies with just three kids, or sleeping without her sounds in the the next room almost crush me.

What I have learned about grief is that it makes everything bigger than they were before she died. My kitchen table is bigger, my van has more seats, my living room has so much more space, my house is enormous.

What I have learned about grief is that it gives so much unwanted empty time. I have no therapies to do, no insurance companies to fight, no wheelchairs to lug around, no therapists to meet with.

What I have learned about grief is that it makes me question my dearest friendships. After all, if our connection was our children with their specific diagnosis and my child is gone, where does that leave us?

What I have learned about grief is that it makes insincerity such a slap in the face.

What I have learned about grief is that I don't want to answer "How are you doing?" to people who expect that every day I'm doing better - I'm not. Every day I am the mother of a dead child, that will never get better.

What I have learned about grief is that it makes the love I have for that sweet child poignantly, achingly, beautiful.

What I have learned about grief is that it colors every activity of every moment of every day.

What I have learned about grief is that the hardest situation in which to grieve, is among those who don't know grief.

My child has been gone two weeks and two days. Tomorrow will be two weeks and three days, and then two weeks and four days, and then two weeks and five days. There is nothing new. It used to be when I would joy or sorrow over something in her life I could call someone and say "Let me tell you about my daughter." If I experienced sadness during her life there was always a reason to share, to discuss. Now there is nothing new. How many times can you say, "My child died, and my heart hurts." It gets monotonous, even to me. But the pain is so big, so very, very big and always for the very same reason. My sweet little girl is dead, that will never change. I will never hold her again, I will never look into her eyes again, I will never take another picture of her, or hear her say "Mom" again. My son will grow up with no memories of his sister. My own memories of her will fade, I'm clinging as tightly as I can, but realistically they will fade.

Sooner or later I'm expected to move forward, but how do I do that without leaving her behind?

--Monica English, August 2004

Mother to Taleah English 7/24/00 - 7/22/04

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