Lately, I have really felt alone. I feel like people just don't understand my situation. I don't expect people to. In fact, I think unless you are living it, there is no way to understand what its like. I know I used to look at parents of a disabled child and I never thought about what they were going through. I didn't know the exhaustion it took to raise such a child. I can tell you that I am physically, mentally, emotionally and financially exhausted. I love Georgia with all my heart and wouldn't change a thing about her. She is truly a gift from God. But I feel like no one understands. Unless you live it, you have no idea what it is like to constantly worry that your child might die. You have no clue the heartache it causes to see other younger children doing things your child should be doing. You have no idea the ache of not hearing your child laugh. You don't know the loneliness of unintentionally being excluded from activites because there is no way to take your child. Generally people just don't think of the impact this child has on my life and my family. Don't plan activities such as ice skating and hiking because guess what we can't go. My child doesn't like big crowds so often we have to miss events so as to not irritate her. We have to protect her at all costs from illnesses because even a cold can be fatal. When I act ornery or cranky its because I've been holding a fussy whining crying child for hours and maybe even days. That wears on any one. I haven't slept in 20 months, I'm tired. I worry constantly about every thing. I worry about things you don't even have to think about. You have no idea and most of the time you don't even try. I often hear "if there's anything I can do, call me." Please don't put the burden on me, I have enough of a burden, just do it. I can't tell you the number of times a day I cry. I put on a brave front but slowly I'm falling apart. It may seem selfish and I may seem brash but right now my one and only concern is my child and not your feelings. I don't want to feel alone any more. Fortunately, I've "met" people who live similar lives and get it. The sad part is the people closest to me don't. Before the twins were born I heard a lot of lip service of people saying they would be there to help, they've let me down. I know they haven't meant to and that life gets busy, I get that. I love my child, but sometimes I need to get away and feel normal. The thoughts that scare me are always there, I never get to get away from those. My life is different from yours not because I want it to be but because that is the path God has chosen for me. I will gladly take the journey if it means having my daughter in my life but I don't want to feel alone on this journey. Please just try to understand.
{T: three year pictures}
1 day ago