Feelings

Feelings
Tuesday, September 18, 2012 by Pam

Can I say this? I hate being the parent of a special needs child. It never ends. It goes on and on and on. I want my life back. I don't want to do this anymore!!!! I'm sick and tired of the constant worry and frustration. I'm always on call. I never, EVER rest. And I'm SO tired, when I do stay in bed after Anna gets out, she inevitably has a seizure, falls down and gets hurts. I'm sick of doctor's offices, hospitals, blood work and ER runs. I'm tired of fighting with the school and child study team. I can't bear the thought she might outlive me. I can't stand cleaning up her messes, feeding her, brushing her teeth, getting her bathed and dressed and taking her to the potty.

Oh, and let's not forget her constant babbling. Sometimes, she'll say something I can understand, like, "aw, Mommy," (which she'll say 25 times before I tell her to stop) but most of the time it's words from a video or simply repetitive sounds. It's like Chinese water torture. I don’t want to do this for ONE MORE MINUTE.

SIGH.

Where is the blessing in a child with autism? Where is the blessing in a child so self absorbed, she doesn't even care about her own safety? All she knows is what she wants when she wants it. She cares nothing for anyone's feelings. She gives nothing back, except for an occasional hug – and that carries little weight when the responsibility and problems seem insurmountable. I want my life back. I want my life back. I want my life back!!

And on the heels of the frustration and pain comes guilt. You know what? I'm sick and tired of feeling guilty, too. I'm so tired of beating myself up over what I determine is a failure on my part to be a good Christian mommy. I'm tired of feeling judged by people who don't have a child like Anna. And I'm tired of the condescending attitude of parents who do – and seem to enjoy every minute with their child. Are they for real? I mean, I'm not putting them down. I wish I could get there. THAT would be a blessing.

Worry, stress, exhaustion, frustration, guilt. All these things rule most of my days. I get very little relief from them. When I do get a break, it doesn't last long before it all comes crashing back with a vengeance. Dear God, please help me!

The cry for help is where it starts. What you've just read is not how I feel every day, but there are times when it overwhelms me and I throw my head back and wail. It helps to get it out.

Where are you today? Share with us, if you want. The burden will grow lighter, and while the circumstances of your life won't change, you'll know someone has heard you.

Comments

pam From At 9/19/2012 10:58:56 AM

This is what I want - a safe place to be able to express how we feel. Sure, not everyone feels the same and not everyone struggles to the same degree. But for those of us who do struggle, we need someone who understands and won't judge. Thanks for taking the time to read my blog!

Sara Goff From New York (living in London) At 9/19/2012 8:51:12 AM

I really admire your honesty, Pam. Thanks.

Carol From NJ At 9/18/2012 8:53:39 PM

Pam this is a really great thing you have done for the parents and caretakers of special needs children.Talking to me over the years has helped me to get it out to someone that truly understands.Not everyone has it to the same degree but the feelings of helplessness are still there.Thank you,

Chris Harper From Pittsburgh, PA At 9/18/2012 8:11:35 PM

Hi Pam. Thank you for sharing and for putting this blog online. So often we take much in our lives for granted, while others struggle and no one knows. You are not alone. I love your picture of you and Anna. I am praying for you and your family. Chris Harper

Carolyn Ruch From Hatfield, Pa At 9/18/2012 6:57:08 PM

That old fear rose up in me just the other day again. Who will take care of her when I'm gone. Who will love her like I do? Who will know what she needs like I DO? You don't want your child to die young, but you don't want them to out live you. It's maddening!

pam From At 9/18/2012 6:08:04 PM

Thanks, girls!

Londa Hayden From Memphis, TN At 9/18/2012 1:47:03 PM

Great blog. So glad you got it up and running. There is a very real need for parents of special needs children to have places they can communicate safely. My child is soon to be 19. We have been down a long and hard road with him, but we are coming out on the other side now. I'll pop in again soon.

Julie From Gettysburg, PA At 9/18/2012 1:24:51 PM

It is so important for parents to know we are not alone. Equally as important is to know that what we are feeling is perfectly natural and okay! You've given a voice, Pam, to what parents have been whispering to each other for years. Thanks for making us all feel normal.

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