I know that Troy and I have talked about this before but it came up again when reading someone else’s story. Throughout Ky’s life… EVEN during the Amnio, the birth, the no anus, the open heart, the month long stay after open heart, the SECOND open heart, the infection, the butt surgeries, the spinal cord surgeries, the central line surgeries… it never NEVER occured to me that my kid could die. Maybe I have the adrenaline glands of God but somehow when we are in the thick of things I just never look at her and SEE a critically ill child. I see someone who challenges all thinking and modern medicine. I am upset and stressed when we have trouble controlling her pain but do I physically sit and think that … this could be the last day I spend with her? NO.
So its either i am completely ignorant or I must just have blind faith.
Call me an optimist but I just have never honestly thought that Kyleigh would die. Not now anyhow… now it scares me that I don’t SEE her in dreams. I wonder if she will make it to prom, to her graduation, to her wedding… but did I ever think she would die in the NICU, PICU, CICU?? Not once. I don’t ever even remember asking the docs if she was going to be ok.
I do find that I am very ritualistic. She MUST have a surgery dress. She MUST have her monkey and blanket (and back then her passy). We NEED our anesthesiologist and our favorite surgeon… I guess those are my coping methods. My crutches, if you will.
I also watch other people and I struggle. I will be 100% honest. I have to ask God to give me kindness and patience. Their children may end up in the NICU for one day and they are freaking out. I just think to myself… 15 sugeries later… it is NOT that big a deal. I know in THEIR world it is probably the worst thing they have ever dealt with but on the grand scheme of life … this too shall pass. Just like when we were in the CICU and they had to intubate her right in front of us… there was no time for them to ask us to leave the room… I remember thinking… well… THAT was exciting. I did cry or have some nervous breakdown. I was even on Xanax. I guess these things are just such a part of our life that they are, dare I say it, normal.
One thing that I notice is that I have started to get these protective feelings. People give me the “Did you KNOW she was going to be this way?” Well knowing or not knowing (which no we didn’t) is that supposed to make things better?? Because my kid has a “syndrome” that is supposed to mean I am fine with everything. So your child had an accident in life… mine had an accident before she was even born. There is no better or worse in these situations… only worse. And yes… I know the sting of have an “perfect” child who just isn’t. I remember the relief I felt when Dr. Y pulled Ky out and proclaimed she was PERFECT. All of us… whether young or old, black or white, 1st child or 15th child… the hurt and loss is still the same. I think I hate THAT question more than any other one that has ever been posed. Its as if you say… well you KNEW that she was going to be like this… you CHOSE this. NO. I didn’t choose this and neither did she.
So… if you are praying… pray for peace for me today. I find myself a little worked up and I don’t want to be. I just want to be thankful and appreciative.
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