There is no greater pain a person can endure than watching their child suffer and struggle every day and know that they will continue to suffer and struggle all the days of their life. There are ways in which having a special needs child have made me a better person, but none of them are worth what she goes through on a daily basis, and to say I wouldn't have her any other way would be the height of selfishness.
They say it takes a special parent to raise a special needs child, but I don't feel special. Special is the people I know who knowingly took on a special needs kid: foster parents, adoptive parents, step parents. I parent the kid I was given because she is mine, I would never have willingly taken on this role. Not only do I not feel special, most of the time I feel wholly and woefully inadequate.
I love my daughter, but 5 years into the special needs life and I am becoming so jaded. The sleep deprivation, the isolation, the constant financial struggles, having to watch my other kids go without: it just compounds and compounds.
I have been sitting on saying this for awhile, because I know that at one time or another, many of you have looked to me for support and hope. I'm so sorry I can't keep delivering hope. I can only deliver truth. I have tried to accept my lot with grace and live in such a way as to be an inspiration to my children, but reality is that my special needs child suffers every day and then will die, I am physically and emotionally exhausted, my body is aging at a rapid rate that I cannot stem, many of my relationships have suffered, I see experiences rushing by me that I cannot grasp because of my obligations, and every day I see the ill effects this life has on my oldest daughter and I fear so much for her future.
So, yes, you want the truth? I DO want my daughter another way. I want her in a body that doesn't fight her and with a mind that helps her form and reach her dreams. I want a sister for my other children who plays and fights and collaborates and challenges. None of the positives brought to everyone she touches are worth what she has to endure and I would trade every single one of them to give her the opportunity to lead a typical life and make her own mistakes and achieve her own successes.
I do not speak for all special needs parents. Many of them have accepted this life more gracefully than I have. Many of them really wouldn't change the experience they have had with their child and feel blessed by it. I can only speak for myself, and that is not the way I can see it. And I guess that's all I really have to say.