when it comes to your child's life I'm not sure if you can ever really feel peace or 100% certainty in what your decision is. when your child's future is in your hands and you have to make a decision on what kind of life they will lead it leaves you totally helpless. i cant let my makenzie go but i also cant see watching her live the life she could lead. i understand she could be the exception and the miracle but I'm scared to death to see what could happen if she wasn't the exception. i think about how long i may or may not have with makenzie and i ask myself, if i was to trach and vent her and bring her home would that be for me or for her? would i be able to give her the life she deserves to have? i will always learn from kenzie, no matter how long she is here i know i will learn from her. she has already taught me so much. her eyes tell me story's and her strength and determination to just breath inspire me. i think about life if she was to come home with us, i would treasure everyday. i would hold her and love her and give her everything i could possibly give her. if i was to let her go to heaven now, i would be setting her free. i would be giving her a voice, i would be letting her run and play and breath. there will be so much heartache either way i go. ryan and i feel like we have made a decision, we will feel peace then out of now where i will change my mind. i will freak out, hate the world, yell at God and just cry.
i should really write when i feel peace, right now, not so much. i did earlier today though.
i sit next to kenzie in that bed, she is not happy, she hates her treatments, she hates these tubes, she hates not being held. every time they come in it seems something else is wrong. something new.
i was looking at our video camera today, seeing her just a few weeks ago let alone a few months ago breaks my heart. you look back and can see the change. i can see the change in just the few weeks we have been here. my heart hurts more than i can describe. I'm scared that when she is gone i will not be able to breath. ryan and i are leaning on each other so much right now and i couldn't do this without him. my dreams of our family are changing again. I'm still in denial. i still think she will be here for forever. i shouldn't have to plan my child's death. i shouldn't have to say the day when her life will end. i have never relayed on prayer much, until now. I'm praying to God, yelling at God, crying to God. I'm asking the angels to hold my daughter. there are moments i cant comfort her. she looks at me and i can see in her eyes she is tired. i see her perfect body now and wish i could hold onto it forever. just sit and rock her. kiss her face. hold her hand. i hate knowing i wont have that much longer. i hold her hand every chance i get, i look at her fingers and put her tiny palm in mine. i stroke her arms and legs, i kiss every part of her body. on a daily basis usually many times a day i collapse over her. we cry together sometimes, sometimes i cry alone while she smiles, sometimes i cry while she looks at me like I'm crazy. i don't let the nurses change her butt, its one thing that makes me still feel like her mom. i have so little control right now.
I'm the only one that changes her gtube dressing, i paint her nails, i change her leggins, i bathe her. i hold onto anything i can. i know i will not be able to do or see many of the things mom's should be promised to do with their children such as watch them get their first tooth, crawl, clap, walk, laugh, talk or dance. I'm overjoyed i got the time i did with her. I'm glad those first 2 months were perfect. she was perfect. I'm glad that in these last 2.5 months i have been able to comfort her and help her. i know she loves me, i know she loves her daddy, i know she loves harley, i know she loves every aunt, uncle, cousin and her amazing grandparents. she loves everyone she sees. i know she would have made big changes to this world and changed many lives.