Am I a Better Person Now? No, Not Really...

Amanda is disabled.  And, yes, I used the politically incorrect term deliberately. Amanda is essentially a 120 pound baby. She walks only with assistance. She doesn't talk. She needs help feeding herself, dressing herself, bathing herself. She still wears diapers. While she has special needs, she needs so much more than that simple term encompasses.

I am a different parent than I would have been if I hadn't had a child with a disability.

I am not a different person, however. I am no more patient than I was before her birth. I have simply learned to act patiently because losing my temper gets me nowhere.

I am just as vain as I ever was. However, I have put myself second to her needs for 14 years. I rarely have the time to put on makeup or the energy to exercise. That doesn't mean that I have achieved some deep inner peace that allows me to be okay with the way I look.

I am still selfish. I want more than anything to do the things I did before she was born - go out with friends, ride horses, work. I just don't have the luxury of acting selfishly.

Parenting requires sacrifice. Anyone with a child knows that. It doesn't matter if your child is a healthy, typical child or one with special needs.

However, parenting a child with a disability changes your life in ways you might never expect. I am always surprised when people compliment me, saying things like "You have such strength." No, I don't. I am weak and vain and selfish. I'm apparently just a really good actor.

Sometimes I think parenting a child with special needs must be a little like alcoholism. The hardest part is accepting that there is a problem. You have to confront the reality that your child and your life will not be like most people's.

 

You have to learn that it's okay to ask for help - financial, educational, emotional... And, its okay to accept help you didn't ask for. For me, one of the hardest things was learning to let someone else give me a break sometimes.

 

I remember struggling with the concept of accepting aid when Amanda was little and I first considered applying for Medicaid. A combination of pride and the sense of permanence -the idea that if I put it on paper it would be real - prevented me from filing the forms initially. I finally decided that it was no different from accepting a HOPE scholarship - especially as I knew she was unlikely to ever attend college.

I remember sitting in the Welfare Office with my then 2 year old, waiting to be interviewed. It was winter and the room was filled with people waiting for heating assistance and food stamps. I almost walked away. Not because I didn't want to be near them, but because I hated the idea that if Amanda got Medicaid someone else might be cold or go hungry.

I'll never forget an elderly lady, dressed in clothes that were clearly cast offs asking me if she could pray for my baby. There she was, cold, tired, possibly hungry - and she wanted to pray for us. I was stunned by her generosity. That was the moment that I knew it was okay to accept help.

I am not a better person because of Amanda's disability, but I do think I'm a better parent than I would have been.