I have been mulling the contents of this posts over in my mind for the past week and a half, almost. Several times over, I have decided against even writing this due to the fact that grief paralyzes any writing skill I possess. I hate to even risk cheapening the way I feel with some words that spill out of some part of me. There is no objectivity here, there is no sarcastic defense for me to fall back on. But I think it is necessary that I write about this, because I can think of nothing more important. So here I am, trying.
For those who know me, they know that I had a child named Zoe. Although she was the product of something violent and without-consent, she was beautiful and I would have had her no other way. Zoe had a severe birth defect called Hydranencephaly, a defect where one's cerebellum and brain stem were intact, but the cerebrum was missing and in it's place was cerebro-spinal fluid. Upon prenatal diagnosis, my family was informed that this defect was incompatible with life, and she was sure to die before birth.
When she was born, we were told that she would not live past a few days, and did not have the ability to suck a bottle, or even learn at all. But Zoe was always a bit of a stubborn girl and learned how to suck a bottle, and although she was only expected to live a week, she lived nearly a year and five months.
Zoe passed away last tuesday in her grandfather's arms.
And the grief, at times, is overwhelming to the point of surreality.
Since then several friends have asked me how I feel. I have lost my child, sometimes I feel as if I could not be truly happy ever again. I know that this is the dynamics of grief, but that does not make it seem any less honest. I am inconsolable, and I miss her. I miss her crooked smile, playing the hands game with her, watching ER on the couch every morning with her, watching her yawn, seeing her grimace every time I fed her a green colored baby food.. I miss putting on her pajamas, and her powdery smell.
And even though there were times that loving her meant accepting a part of my life that was hurtful and nightmarish, I loved her like any mother would love their baby.
She was the closest thing to perfect I have ever touched, or loved.. and she taught me how to love myself in spite of my guilt and faults.
Zoe taught me that somethings things happen in our lives that are unexpected, and unasked for, but these things shape us in every definable, tangible, and intangible way.
And sometimes I do not even know what I feel. I just feel... Mostly I am just grief-stricken, or angry. Anger is a funny thing when it becomes a result of loss. But we are all wild when we take to another arms.. later realizing we would have it no other way.
I am devastated, and I am furious... but I am thankful. I am thankful she was ours..
The days do not get easier, there are just bad days and good days.. It has not reached a progressive stage yet. Sometimes I come across a sock, or a bonnet, or a little plastic spoon..or even a baby food label, and I weep because sometimes it feels so unfair... And sometimes I miss her so much, I can hardly stand it. I miss her chubby toes, and multiple chins. I miss her crazy red hair (the shark fin) and her pretty blue eyes. My god, she was so pretty.
I just wish this were more coherent.. and explained half of the enormity of what I feel. I am less without her.
i love you more than these stupid words.. I love you more than anything, my littlest girl.
4 comments:
Your Zoe is beautiful. I too am the mom of a child with Hydranencephaly who has died. My Kayda lived 11 1/2 years. We have a website and support group for families of children with Hydranencephaly at: www.hydranencephaly.com I would love to post a candle and quilt square in memory of Zoe if you'd like. Please contact me via angelbearmom@shaw.ca if you're interested. You'd also be very welcome on either our main list or the angels list. Please know you're not alone in your grief.
Barb
You're right. Zoe was perfect, and is perfect now. I used to think I had a gift for words, but mine was only a small talent. Yours is a gift, Dina. All words are useless, now, but they have been, always, when it comes to the expression of true love and truly painful loss. I grieve for your loss, Dina. I grieve for your Mother's loss, your Sister's, and all who were touched deep in their soul by Zoe's life on this earth, and the way she lived it. I cannot imagine the extent of the sacrifices you and your Mother and your family made to make Zoe's time here as rich and secure as possible. Even though she was worth every one of them, many would not have made those sacrifices. It is to be admired, and should be emulated by all. For myself, and all those who were not blessed to know Zoe the way you did, but kept you both in our thoughts and prayers, thank you for giving us a glimpse of the miracle that she was, and the love and legacy that she leaves behind. I know she was and is proud to be your daughter, as I am proud that you are mine. I love you, Dina, and am here if you need me, as is the rest of your family.
I am so sorry to hear about Zoe. I had a child with hydranencephaly who passed away early in 2005. He was three and a half years old - stubborn like your Zoe because he wasn't supposed to live more than a few months. I live near you if you wish to talk. Please contact me through Barb or through our support group. Barb will know who I am. I definitely feel your pain in addition to my own. It never completely goes away.
Zoe's pictures are beautiful. Thank you for sharing them with the world.
My granddaughter has Hydranencephaly. Our online support group (hydranencephaly.com) has helped us learn more about taking care of our little ones. There are also people there that can help the grieving parents of those that have lost their precious children.
Most of us have visited your website and are touched by your loving words for Zoe.
You are not alone.
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