Don’t forget to sing

We’ve had a let’s-just-hold-on-and-try-to-survive kind of a week.

It’s been physically painful with lots of restraining of a raging twelve-year-old, and emotionally grueling in a way that’s difficult to describe. I couldn’t get out of bed the other day. I just couldn’t do it. I literally¬†called and cancelled a doctor’s appointment because I could not make my brain propel my body out of bed. When they asked why, I wanted to say, “because my mentally-disabled son is beating up me and the rest of the family every day and breaking the house and we are desperate for solutions and I’m so sad that I can’t get dressed and drive to your office and pretend things are okay.”

This is what I really said, “I have an issue with my children and can’t make it.”

So there was that. But there were some good, really good things, too.

The high points:

  1. Jack’s IEP. IEP Day is to the special needs parent what bone marrow transplant day is to the leukemia patient, I suppose. It’s big and emotional. It has a reputation for being confrontational, spawning memes like this one:

But Jack’s IEP was positive and productive. His team is terrific. His teacher was hand-picked by heaven to influence Jack and his classmates for good. He has come a long way in many areas, and for these things, I am grateful.

2. We had a big meeting with two behaviorists, our ABA therapist, and Jack’s respite sitter to collectively determine how to proceed in this new realm of violence and destruction. Jack has entered a new phase of growth and boundary-pushing behaviors. The same things we’ve always done at home to help Jack aren’t working anymore. So we huddled and shared ideas and I felt that Jeff and I weren’t alone in this painful trek. The new behaviorist actually had a promising lead on a foundation that provides some of the support services Jack needs. When the meeting ended, I felt like God tapped me on the shoulder and said, “See. I told you I would be here and here I am.”

3. Jeff and I got to leave the house for a few hours on Saturday afternoon to eat lunch and run errands. It felt like the boulder rolled off my shoulders. As we drove home afterward, Jeff said, “This is what normal people do on Saturdays. They go out. They eat food. They buy a shirt. They buy a dress.”

I said, “We aren’t normal people. But we did get to go out and eat and shop. So, huzzah.” We nodded knowingly at each other.

As we were taking Jack on one of several thousand drives this weekend, a voice in my head said, “Jesus took all of this on himself. He knows how you feel when your little boys are afraid of Jack. He knows how Jeff feels when he has to pin Jack to the floor to stop him from biting and punching us. He knows how Jack feels because his brain doesn’t function normally and he can’t speak and he’s frustrated.”

And then I read this scripture and it sang to me. “Fear not, little children, for you are mine, and I have overcome the world.”

Don’t be afraid.

Don’t be sad.

Don’t worry.

Get up and take a deep breath.

Put on your shoes.

Get in the car.

Keep going.

Remember Jesus.

Sing.

  4 comments for “Don’t forget to sing

  1. Stephanie Mullin
    January 15, 2017 at 1:37 pm

    I appreciate you and your writing so much- I feel your sadness and joy in a small way as myself of a special needs child who is 13- she has extreme anxiety and rips her clothing and mine at times and has personal care issues as well- my time is always cleaning up the mess- We are on a wait list to see specialists that we hope can help. School is great and a heaven sent teacher but lately she is refusing to go and then she will use I inappropriate behaviors to the point where I have to come and get her. I don’t feel so alone with your words- I think of you that often and hope your day might be a little better and I hope you don’t mind me praying for blessings of strength and hope for you and your precious family. You are an incredible women- I feel like we were friends in the spirit world and we said yes to these special children when the Savior asked. Thank goodness for the Gospel in our lives as I know as well you we could not do this otherwise! Oh lots of hugs to you – Stephanie

  2. Marilee Bacciocco
    January 15, 2017 at 3:57 pm

    I’m sure you hear this all the time, but you are amazing! You are such a great example to me of trying to stay positive. Some days it isn’t going to happen, and that’s okay. Thank you for sharing your perspective and insight with us all. Love you guys!

  3. Jennifer Walker
    January 15, 2017 at 5:26 pm

    So beautiful! Thank you for your honest reflections. I am grateful for your ability to experience yuck all around you and still find the joyful, peaceful moments. You are not alone on this journey. None of us are. Thank you for the great reminder!

  4. Whitney
    January 16, 2017 at 10:45 am

    Been out of town and away from a computer…just got caught up on your posts! Wow!! I hope you are getting answers, hope, and some changes. Thanks for your honesty and insight. You are wise and your wisdom helps. I wish I lived in Utah so I could come bring you some ice cream!!! Hang in there!!

Leave a Reply

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