Sunday, December 27, 2015

"I Wouldn't Want Her Any Other Way"

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.


  1. Kate -- I hear you and know the very point where you're writing from. I wish I could tell you that it will miraculously get better, but that wouldn't be true, and I appreciate your honesty in this post. What I can share with you is that while I will never be one of the parents who says "I wouldn't want her/him any other way" I sincerely say that I would not have missed my son for all the world, even with all the pain, loss, and futility.

    I think this time of year can be especially poignant for us as special needs families, and our losses and isolation are all the more evident when it seems like every other family is enjoying blissfully normal holidays. Please be extra gentle and nurturing of yourself. And reach out to those sources of strength that you have in your life. It's wonderful that you are often the inspiration and support-giver, but now is maybe the time to be a recipient and to call on those who can offer you help, both tangible hands-on assistance and words of encouragement.

    Best wishes, and God bless you and your sweet girl with some good sleep and refreshing rest.

  2. I find it is much easier to be positive and be a support for others when my child is doing well. Unfortunately, "well" might just mean not living in hospital and not actively suffering. When you have a child who struggles every day and this is the only life they will ever have, it is really really really hard to be that positive person all the time. And people want you to be positive. "You were chosen." "You are so strong." "Your child was given to you because you can handle it." etc. No one wants to hear the difficult side to all of this. There is truth in the celebration as well as the grieving and sadness. I appreciate your honestly. It is never good or bad, it just is. This is the life you were given. And we all find ways of coping. And we all cope better at some times and not so good at other times.

    Lately, I have taken stock of the things I had to give up for this life that has chosen me. I did not chose this life. I was given this life. And yes, this life is wonderful in so many ways. And on good days, I can see that and celebrate it. But on harder days the reality of what all this means in the long term sets in. The reality is, having a child like Anabelle has a very high cost. You, your marriage, your children, your finances, your health, your mental sanity, everything and everyone pays the price. Recognising that cost and grieving that cost is part of your life.

    I find one of the hardest things is that we don't get the choice of having our daughters any other way. We get them as they are or we don't get them at all. When your child has a life limiting disease there is no light at the end of this tunnel. And what good mother would ever chose this life for their child?

    Thank you for sharing. I am almost 9 years in to this special needs life and I hear what you are saying.

    Take care,

    1. Thank you so much for your words. It always helps to know we aren't alone, in the good and the hard xoxo