The truth about being a special need’s mom

I use this blog as a way to get things off of my chest and to write things to help me remember how I feel in different stages of life.

normal3-e1314295148988Most days, I live our “normal” life…get up, clean house, run errands, cook dinner and some things included in our lives just because Korie has spina bifida…Things people don’t know or can’t even imagine. I am not complaining…it’s just the way things are. But it is a life that most don’t really understand….just as others live life’s that I don’t understand. We all have our “things” in life we have to adjust to.

But, there are days that I feel things that I don’t share. Today, I will say some of them out loud.

1. I lost a dream. Eh, it’s not a big thing in the light of eternity. But…as I grew up, I certainly had the American girl dream of a family, home, and love…I have all three!! But I didn’t dream of disabilities. I didn’t dream of doctor visits, surgeries, medicines, an aching heart or sometimes extreme sadness.Sad and upset woman deep in thought
Losing the dream of “family” that most people experience is something that I lost. My whole life changed the day I heard the word spina bifida. My whole life is different than I had ever imagined. Like David, in the Psalms, I sometimes totally mourn those dreams…but also, like him, I have learned that God is my Redeemer and He loves me and I can trust Him no matter what life brings my way.

2. I lie. I don’t do it intentionally. I don’t want people to think I am complaining or not “dealing” with my life. So sometimes when I am asked…”how are you?”…I reply, “fine.” And I’m not fine. But I doubt people really want to hear how I was up all night with Korie’s reflux and I am so tired. Or that if I have to go to another appointment I think I will cry through the whole thing. Or it may happen to be a day when I am feeling sorry for myself and have been on the urge of tears all day. So, I smile and I say that I am good. If I ever answer that way to you, if you ask “how are you REALLY doing”……maybe you will get an earful.

3. I feel left out.
alone-on-beach I know I am loved and I know I have people who really care and go out of their way, but most times, I feel like our family lives in a box. We don’t get invited to people’s homes much…maybe some are uncomfortable but mostly because Korie’s chair can’t fit in their homes. We need a portable ramp. And we will get one eventually. That will help and it is something I can fix. But there are some ways I feel left out that just can’t be helped. I love the water….Korie can’t get into the water…it’s too hard. I would live my life in the water if I could. But it’s something I gave up. When we go to a sports venue, wheelchairs only fit in certain places. I usually am at the bottom somewhere…alone with Korie and her chair. I have hurt for her, too, as her young friends hang at the top of the bleachers. There are many events or parties we go to but we are stuck in certain areas because of her limitations. I am almost always an observer. It’s hard but it’s life.

4. I can get jealous. This isn’t as bad as it used to be but sometimes there is a person who was born around the same time as Korie. I see their successes, their college years, their relationships…and I know that Korie doesn’t have that and never will. It breaks my heart. I can’t work out of the home nor be a counselor at camp…I have to give a lot of things up. I see other families going on vacations that we could never plan due to our limitations and sometimes, Steve and I just go alone instead of as a family because Korie can’t go and I mourn those lost moments.

5. Sometimes I feel like I am a failure. Yep, I do. 1307290853277943-5_life_lessons_i_have_learned_from_failureThere are so many things I wonder. Some examples… Would Korie’s legs be more flexible if I had done more PT on her when she was young? I remember being so exhausted with everything else that I just couldn’t do that every day…but I felt guilty. Why didn’t I notice that she was having shunt issues? Why didn’t the signs jump out at me? Do I do enough with her? Is she in her room too much? Should I expect more of her or do I do too much for her? Do I make her life interesting enough? What about Kristin? She missed out on a lot because her sister couldn’t go somewhere or do certain things…did she suffer for it? Does she resent it? Did I spend enough time with Kristin? Did I fail her in some way?

So, there is some HONESTY for you. I don’t feel like this all the time. And when I do, I know it isn’t right. God has blessed me more than I deserve. I have so much compared to some people. And I know my own selfish head arises and causes most of these feelings. I know that God has given me the life He planned for me. And I know He gives me all I need to live this life. He has given me a great family and a church family and more friends who go above and beyond.


The best part of all is that this life is so brief and eternity will right all the wrongs…for me and for others.

This entry was posted in Spina bifida and tagged , , . Bookmark the permalink.

Leave a Reply

Your email address will not be published. Required fields are marked *