Sunday, July 10, 2016

Why My Daughter Hates "Brave"

My daughter wrote,
"I hate "Brave" because Elinor acts like a baby. She acts like she knows everything but not about being a mom. She acts like a toddler when she gets angry and she throws her own daughter's bow in the fireplace! Who does that???? Well, there you go. I HATE "BRAVE"!!!! 

PS: Mom's letter is here.

Friday, July 8, 2016

The Life We Never Expected Review

Expectations. Mine have been shattered over and over. Shattered expectations at church carry the deepest hurt, cause the most painful wounds. I have to remind myself that Christians are human and they are not God. When humans are not good ministers to families like mine (with a child with autism who has lots of co-occurring conditions), it reflects on them, not on God. I have to keep reminding myself of this.

I struggle with the difference between what is and what should be, continuing to reach what should be. The battle is real.

Authors Andrew and Rachel Wilson are parents of two children with special needs. They are Christians. And they wrestle with the same opponents that I do. Expectations. What Should Be. What Is. The biggest battle is the one happening in my head. And they, like me, make progress and then regress, back and forth. They understand.

The Wilsons arranged the chapters of "The Life We Never Expected" in five sections: weeping, worshiping, waiting, witnessing, breathe. Rachel writes some of the sections and Andrew writes some of them.

I always hold my breath a little bit when I read a book by Christian parents of a child or children with special needs. I have a lot of pain and grief, and I know my God can handle my pain and my grief, my negative emotions. I don't want to be criticized for having negative feelings or for admitting the emotions that are ugly. I do not want to be preached at in a holier-than-thou way. I want to be understood.

And the Wilsons understand. The book is loving, not preachy. Real, not rosy. I love that they reference the Psalms so much in the book. Sometimes, I think I spend too much time reading the angry Psalms, but it is there that I see myself and it is there that I am understood. I know I can't spend all my time there, and yet, being there, hearing the Psalmist's cries, is comforting, because I am not alone.

The Wilsons clearly have more skin friend and family support than we do. We have zero.
"These days, we can't even get through the day without the church, let alone save the world. We are totally dependent on a community of people--people who help, encourage, pray, serve, take responsibility--to be fruitful in any way at all." Andrew writes on page 47
"Something especially bad happens, you hit a new low, and you cry out for help from y our friends and family, who rally around to help in a short, intense, and irreplaceable way."  Andrew writes on page 63.
They have live in support and a set of grandparents who help once a week. Yeah, we don't have that. Family is 150 miles away (which is better than the 600+ it was for many years) and we have not been able to build a network of support in this town where we moved five years ago. We stopped going to church because the obstacles were too great.

I still struggle with comparisons. I am a work in progress.I am trying not to turn the book's anecdotes into a pity party. And in this book, the Wilsons give me solid, doable, practical suggestions on how not to become a pity party.

The book retails for $8.82 on Amazon at the moment I am typing, is 152 pages short, yet the material is solid and useful. The book is physically small enough to fit inside my purse if I want to read it in a waiting area while my child is in a class or lesson.

There are two sections that really jump out and grab me right now, where I am. One is written by Rachel and one is written by Andrew. Rachel's reminder that my first thought, my first reaction to a situation or event is often not to be trusted touched me deeply. It is something I have learned about myself but have never articulated, and Rachel articulated for me in a section about finding joy. I needed that. I strongly identify with Andrew's section on prayer at this moment in time.

 I suspect this book will be one that I return to again and again and a different section will speak to me each time, depending upon where I am in that moment. I tend to identify with Rachel in a big way and not as much with Andrew. I wonder if my husband reads the book if he will identify more with Andrew? More books seem to be written to the moms and this one is geared to both the mom and the dad.

"The Life We Never Expected" by Andrew & Rachel Wilson is a wonderful resource for a family with a child or children with special needs.

PS: Andrew & Rachel: I have 15 years of notes about sleep and autism in one long blog post here if you are interested. Maybe something in it will be helpful at your house.
"Disclosure (in accordance with the FTC’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising”):  I did receive a sample of the product in exchange for this review and post.
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