Sunday, August 14, 2011

Up Hill Battle


I want to be frank with you. Autism is hard. There it's out.

The amount of tantruming and just full blown scream sessions that I've experienced in the last week are too numerous and tiring to recall. I've got bruises on my body from trying to restrain my sweet child from harming herself while head banging in frustration. Yes, she's experienced a minor regression as a result of removing her pacifier (combined with our recent trip to NY).

Regression. I hate that word with a passion. Parents of children with autism are well aware of the implications of such a word. It happens with our children often and it's not something we can control. I can only slightly compare it to cancer...and the way it comes back after remission sometimes (obviously autism is not deadly but you get what I mean). Bella experiences regression when we travel, or when one of us leaves, or if we change something drastically (pacifier)...the list goes on. I wish I could protect her from it but I can't. Life changes. In a perfect world I could keep her in a the movie Groundhog Day....then it would be easier;) **She has kept almost all of her words, it's mostly regression in behavior.

These are just words though. It is our life and it is challenging some days to the point of tears and bruises.

Some days I look at Bella and wish she could see how much I love her and desire for her to succeed. I really do love her so much that I could explode. Her eye contact with me is getting longer and more meaningful... and for that I am thankful. The other day I squeezed her face and said, "Do you know how much Mommy loves you?"---I felt like she understood. Then I kissed her face...her precious face. God knows how much I love her and I believe Bella does too!

I saw a mom in Target the other day with a 16 year old boy who had some type of disability. He was moaning, had a helmet on to protect his head, and his mom had him tied to her arm by his shirt because he was roaming around aimlessly. I immediately was struck with equal amounts of respect and pitty, frustration and love, mercy and grace. That mom is a hero to me and all she had to do was smile. To maintain positivity despite a life that is a constant up hill battle. She loves her son more than any gawking bystander could fathom. When I looked into her eyes I felt her struggles to the core of my being. I wanted to run and hug her and tell her she is amazing and it will be ok.... but she had enough to worry about... adding some blonde crazy into the mix would, I'm sure, not help:)

God is stretching Josh and I. He is teaching us reliance on him. I have been praying for God to work in Bella's mind and her heart....I always pray this and I ask you to do the same if you have a moment. Pray for progress--not regression friends. I BELIEVE Bella has the potential to break through the bounds of autism. I BELIEVE God is sufficient and good and full of mercy. I believe He loves her more than I ever could. And I love her endlessly.

This song below is at the end of one of Bella's favorite movies.... When she hears it, she stops and walks to the screen and stands motionless for the entire song...smiling. The words are so ridiculously true...God made her so beautiful. He is proud of her and so am I!


  1. Thanks Annie - I look forward to your blogs and I pray for you all - what an inspiration the three of you are.

  2. Continuing to life you and your precious darling up in prayer. You're amazing, Annie, and such an inspiration to the rest of us.

  3. Annie,

    As I am always reminded with my three little guys on the spectrum - God has a perfect plan.

    There are days when it is overwhelmingly, impossibly tough. But, this too shall pass.

    And one day, hopefully, prayerfully, you'll hear those words and get that eye connection that you have both been praying for.

    Glad I found your post! Right there in the battle with ya!

    God bless,


  4. I continue to pray for you and your family! Your posts are so inspriring and as a mother, I appreciate your raw honesty. Love you all!

  5. Hey Annie,

    It's Julie (DeSantis) Nickerson. I just saw Kirsten this week and she updated me on your family and sent me to your blog.

    First, I wanted to say Bella is gorgeous and you are such a wonderful mom!!! Your posts make me cry. I can see your love for her through your words.

    I also wanted to let you know that you have been heavy on my heart ever since I saw Kirsten as I did not know Bella had Autism. I've been praying for you and your sweet girl. I will pray for God to work in Bella's mind and heart.

    You can check on us at our blog:

    And happy anniversary! Our is today! :)

  6. Annie,
    You think that Bella is experiencing a setback in behavior but some of it is just 2-3 year old behavior INTENSIFIED. They try to have THEIR way at this age and aren't receptive to giving up beloved items.
    CHANGE is always hard on them and they need their time and space to adjust but usually they do adjust. TEA in Texas has an autism workshops that you can take on line that give ideas for working with them. I know you have been doing great interventions with her. God blessed Bella by giving her great parents like you and Josh.

    It says the last time to register is is suppose to be free. Maybe there are some courses you'd like to take.

    Praying for you and Bella.