Fear is life.
Yesterday Ky watched TV for the first time. She watched- It's a Big Big World... they sing and there are lots of colors and she was mezmerized! As I watched her I realized that she might actually be enjoying it. And as happy as I was it made me cry.
Normal babies enjoy eating, and sleeping, and just being alive. It hurts Kyleigh to eat... it hurts her to sleep, she coughs and cries out in the middle of her sleep, it hurts her if you hold her the wrong way. I have to wonder. How much does she hurt, and does she hurt all the time? Does her chest hurt? Does her colostomy hurt? Does she really like being alive? Does she want to live?
When she doesn't eat it really takes a toll on us. You wonder does she stop eating because she just wants to die? And if she wants to die am I wrong to want to keep her here??? And it scares the life out of me to think that she doesn't want to be here... because I wanted her so badly... I wanted a perfect little princess to pamper and spoil. And i love her more than ANYONE including Troy can understand.
I fear that her brothers will resent her. I don't have time to even sit down and read them a book and the amount of guilt that I will carry around forever over this is nearly unbearable. As much as I fear the long term effects of things I fear more than anything that there will be no long term. I live it total breathtaking fear that she will not live to wear the gorgeous wardrobe in her closet. And I know people think I am obsessed with shopping... but somehow it is my way of telling myself that I believe she will be around to WEAR those clothes. I keep buying clothes that are size 12-18 mo. And I asked mom if I should have bought a really cute outfit that was size two... and you know what the next one I find I WILL BUY... I have to ... because I HAVE to belive that she will be here when she is two.
She watches light- anything that is light... and I joke about it - but i truly am scared to death that there is a reason why she is attracted to the light... I am more than afraid that one day she will go to the light and not come back.
Normal babies enjoy eating, and sleeping, and just being alive. It hurts Kyleigh to eat... it hurts her to sleep, she coughs and cries out in the middle of her sleep, it hurts her if you hold her the wrong way. I have to wonder. How much does she hurt, and does she hurt all the time? Does her chest hurt? Does her colostomy hurt? Does she really like being alive? Does she want to live?
When she doesn't eat it really takes a toll on us. You wonder does she stop eating because she just wants to die? And if she wants to die am I wrong to want to keep her here??? And it scares the life out of me to think that she doesn't want to be here... because I wanted her so badly... I wanted a perfect little princess to pamper and spoil. And i love her more than ANYONE including Troy can understand.
I fear that her brothers will resent her. I don't have time to even sit down and read them a book and the amount of guilt that I will carry around forever over this is nearly unbearable. As much as I fear the long term effects of things I fear more than anything that there will be no long term. I live it total breathtaking fear that she will not live to wear the gorgeous wardrobe in her closet. And I know people think I am obsessed with shopping... but somehow it is my way of telling myself that I believe she will be around to WEAR those clothes. I keep buying clothes that are size 12-18 mo. And I asked mom if I should have bought a really cute outfit that was size two... and you know what the next one I find I WILL BUY... I have to ... because I HAVE to belive that she will be here when she is two.
She watches light- anything that is light... and I joke about it - but i truly am scared to death that there is a reason why she is attracted to the light... I am more than afraid that one day she will go to the light and not come back.
2 Comments:
OH, honey, do I remember those times. My heart hurts for you all. I felt the way you do, too. It makes us look at our angels and learn patience and tolerance, but please don't let yourself think she won't be here long term. She is so beautiful. I am thankful she is going through all this as a baby instead of older because pain is a learned thing.When I had Sabrina, I wondered if Troy would resent her and the time away from him, too.But, he was such a big help and Ross and Owen will be, too. From all I have read over the years, this is the grieving process for the child you expected her to be, and this too shall pass. It is hard, but you have to learn to deal with the guilt and go on as if you were in Italy.When you do, it makes life so much easier and enjoyable and she sebses that from us.The world is cruel in that we are never taught to expect Holland, and when that is where we go,the "pros" don't know how to deal with it anymore than we do. It is different for everyone, but this is just one more process in the acceptance and getting rid of the guilt. My granddaughter Kyleigh will be one of the most beautiful girls you will have ever seen!(Not only because she looks like her Meha of which I am very proud). This is one big hump to get over, but we all will get over it together. I love you all. Mom
Amber...do I need to call you for a pep talk again?!? I know, I need to call regardless, and I will!
(AND YOU KNOW I MEAN THIS IN THE MOST COMPASSIONATE WAY!!)
Girl, I completely understand what you are feeling, but there comes a time when you just have to let it go. Just let it go and let it be. (easier said than done right?) BUT YOU HAVE TO, you CANNOT live your life in the fear of the unknown. Think today, this minute, this hour, beyond that you cannot control! Just let it go...this IS your life. You need to forget what life used to be like, or what you wished life would be, because this is your life now...for the time being at least. Most importantly, you have every right to feel this feelings, to be sad, pissed, mad, so angry that you could explode...all of those feelings are an important part of the grieving process. Even though you LOVE Ky more than anything...you need to let yourself grieve for the baby you were supposed to leave the hospital with. Instead, you got something MUCH more!
And I must say, don't you worry about those boys one bit! Kids are the most risilant little creatures around, I'm sure they just love and adore her to pieces. They will be more compassionate, and caring and sensitive for having Ky as a sister and YOU as a mother! You've got to let go of the guilt hon,...because every day there is going to be another thing to feel guilty about, you just won't ever escape it if you don't...let it go!
Love ya girlie, I'll call soon!
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