Sunday, August 26, 2012

A Mom Missing Out On Her Milestones - Children With Disabilities

“Well, this is all she’s ever known so it’s not like she’s sad about what she doesn’t have anymore”
“She was born like this so she doesn’t know any other way to be”
“Look at Sara. She was born like that and she’s always so happy” (Sara is my aunt who is now in her 60’s and deaf)

These were all things I would be told when I would get sad about my daughter being disabled. She can’t sit, walk, talk, feed herself or transfer herself from one spot to another. She will never go to sleepovers, drive, graduate from high school, or get married. Please don’t say ‘you never know’ because yes, it’s true, miracles do happen and I am a woman of faith but as things are right now, this is reality. I can say these things without breaking down at this moment but it hasn’t always been this way. (There are still days when I can’t think about these things without losing my mind but thankfully those days don’t happen as often.)

I am confident that the people telling me these things are only trying to help. I guess what I was supposed to see was that she hasn’t lost anything…she never had it to begin with. Okay, I can see the logic behind that thinking but it just doesn’t translate into real life. Not with me, anyway. I know for a fact that many people who were born with their disability are perfectly aware of what they don’t have. And believe you me, I was fully aware of what I didn’t get to have.

What I was supposed to have was a baby who would come home with me when I left the hospital. She was going to smile and sit and clap her hands. She was going to pull herself up to stand and walk across the kitchen floor. She was going to sit in a dining room chair and eat her cereal all by herself. She was going to reach up for mommy’s hand and bounce along beside her, crossing the parking lot of Target, pigtails bouncing, sneakers flashing.  She was going to kindergarten. She was going to make mommy breakfast in bed – crispy toast broken into pieces because the butter was tough to spread, a glass of OJ dripping onto the tray and a flower made from construction paper grandma helped her make. She was going to sit next to mommy’s head while mommy lay in bed on a sleepy Sunday morning and brush it and put all these crazy ponytails all over it because that’s what mommy did with grandma when she was a little girl. 

I was going to have a little girl who would call me mommy.

So maybe she doesn’t know what she doesn’t have. But I DO. So if I cry or am sad about the fact that I missed out on my milestones please understand that I am allowed to mourn for the child I thought I was going to have. The one I did get is smart, funny, confident, strong-willed, gorgeous, loving, strong, protective, a daredevil and an awesome kid to have around! And the truth is I would not be who I am right now if I wasn’t blessed with her. But that does not mean that I can’t mourn for the little girl I was expecting. 


  1. Yes, you got it! Mourn for what you have lost not what she has lost. It is your loss that she's not turned out how you dreamed. It's not her loss.
    Mommas dream all kinds of things for their kids that don't happen. Yours is just more extreme.

    The only important thing when you feel sad about what you think she might have been is that SHE knows you are sad for yourelf and not for her. That's why it's so important that you know it.

    As soon as she thinks you are sad for something she doesn't have, she'll begin to feel sad about it too.

    1. I agree, Skylight. I am very careful about not talking about her "can't"'s and my sadness regarding her disability in front of her. Here in my house we are always talking about what a great big sister she is, how she did so awesome at the dentist, how she was so patient at the doctor's get the point. I used "confident" as an adjective to describe and that's how I intend it to stay! Thanks for the comment.

    2. Your words are spot on and beautiful! You have the right to mourn. Some day in heaven I know you will have those moments with your beautiful daughter-- everything will be made right.

  2. Very well said Skylight!

  3. Very well and insightfully expressed! It is natural that we, parents of very impaired children, feel a deep existential angst .. there are these wounds which never heal and are deep, but they do not prevent us from loving fully.
    Our children are much purer spirits and the know the world at a very cellular level. They know love, dignity, worth and value because they are treated with the utmost care and compassion. In a sense we become one with them...and this deep oneness sustains both lives.
    Our lives are good and rich, in a way that most will never know. Good mothers and fathers are not warmest regards,

    1. Thanks, Phil. Your comment is very meaningful. I know wholeheartedly what you mean when you talk about "oneness". I have often said that I feel a very deep connection to my daughter. I'm convinced we've spent many of our past lives together ;-)

  4. Thank you for saying exactly how I feel!! When I try to express how I feel sometimes people make it into that I'm sad for what she doesn't have. I'm sad for what I am missing out on. I have more good days than bad but I still find myself thinking "What if" sometimes. Thanks for showing I'm not alone!!