The 'Some Days' When You're a Special Needs Family

06/02/2015 03:44 pm ET | Updated Jun 02, 2016

Some days, raising a child with significant special needs means witnessing miracles. Simple things that most parents would take for granted become landmarks. If Lizzy answers me when I ask her what dress she would like to wear, or spontaneously lets me know she likes the strawberry ice cream she is eating, that's a big deal.

Some days, it feels as if my heart is being torn out of me and all I can do is watch while she struggles to tell me what is bothering her. When she hides in a closet or under her bed because something is scaring her, but she doesn't know what it is or even how to let me in her very complicated mind, that's when I feel most lost with her.

Some days, I watch my kids at the table, laughing and enjoying each other, and I know in my soul that there was a higher power at work that made us a family. Each of our personalities is the perfect match for one another.

Some days, I doubt the existence of that same higher power, and I'm sad that my once-unshaken faith has small cracks in it. I worry about what the future will hold. Will the boys resent the time and energy their sister required? What will they have to deal with when my husband and I are no longer here? Who will take care of Lizzy when we can't do it ourselves?

Some days, I am so grateful that my husband and I have not only survived, but have thrived raising a child with significant needs. Scary phone calls and tense doctor appointments are made better because we are a team, and can help each other deal with our unique family. Laughter is a huge part of everyday life whether things are going great or not.

Some days, I miss the "old days" when all we had to worry about was ourselves. Our biggest decision was what movie to see or restaurant to have dinner at together.

Some days, I am glad that I have found a platform and can share the struggles that being a special needs family can bring.

Some days, I wish I had nothing to share on the topic.

Life is funny that way. One minute I can be so grateful for everything I have, and the next I can feel like the world is toppling on my head.

I thought of this today when I was sitting at the kitchen table with my youngest son, Peter. He was eating soup, and we were chatting about earth-shattering topics like why there are no beans in the cajun soup, and how much we both loved cherries.

To be honest, at first I resented the time it was taking to sit with him. I was busy and had 1 million things on my to-do list. I was tired and cranky and having one of my harder "some days."

But as we were at the table, I was forced to stop rushing for a moment. I did my best to take in the sound of his 10-year-old voice, and the way he looked up at me, listening to my every word. He wanted my company, and I was so glad I could give it to him.

Lizzy came in from outside and gave me a big hug. And pretty soon, my teenager followed behind her with a question about a movie he was watching. All of sudden, my harried, stressful day stopped and I was enjoying my family.

I realized in that moment that it is these simple daily interactions that make up my life and when weaved together, they become the cloth I wrap myself in for all of my "some days."


This piece was previously published on Kathy's blog, My dishwasher's possessed!