I bought this book a few months ago. I cannot, for the life of me, remember how I found out about it. I started reading the other night and have found myself highlighting and writing notes in the margin. I do not write in books, unless I have to (like in college) or unless its really good.
THIS.BOOK.ROCKS.
You can read about it
HERE from the book's website. A brief summary of its contents is located on the books website as well.
Its candid. Reality. Most importantly, its something Jeremy and I can relate to. Often our conversations consist of nothing but AJ.
Me to Jer: How was your day? Jer: Good. Jer: How was AJ's day? Me: Well, blah blah blah blah blah.... Every move you make revolves around this littler person. Go ahead. Tell me it shouldn't be. Then I'll tell you to walk our journey and then see how you prioritze your life.
Married with a Special Needs Child Is Different Than Being Married with a Typical Child. Not that I am downplaying the everyday stressers of being a parent. I am most certainly not. But remember what it was like for the first 8 weeks of your baby's life? Constantly "ON"? That's what this is like. The stress doesn't just go away when the kids get older, in most cases, it never goes away.
This book is so awesome, I don't even have words. It has mini-stories and tidbits from REAL SN parents and is written by two fabulous people who, God Bless Them, chose to be bold and candid with this book. It talks about the grief, the anger, the self-pity that turns to self-compassion, ways you can improve your relationship, stay connected, and most of all, it spells out the REALITY of having a special needs child. I would highly recommend this book to other SN parents, and to those who know other SN parents, or want to know the truth.
Just because your child is doing "ok" or even thriving, doesn't mean your relationship with your spouse is ok too. No people, I'm not sending up red flairs or trying to tell anyone anything, so relax. What I am saying is that your child becomes your priority in such an intense, raw way, its hard to explain . Part of what makes this journey difficult is that it is the road less traveled. Less and less things relatable to those around us.
It often takes years to adjust to having a special needs child. I didn't know that...until I read this book. I thought we were the only parents on the planet that still had moments. While there is an incredible amount of stress, it doesn't make us love AJ any less, by any means. The "Us" gets lost in the "He". You doggie paddle your way to the surface and do the best you can. Its the nature of the beast, I think.
I had a hard time with a therapist who had worked with AJ in the past. It angered me that this therapist could tell me her experience with children like AJ in her line of work and sit there and pretend like she knew how I was feeling, when I knew darn well she had no idea. She went home to her kids that night, who were all able to say "Hi Mom" and did all the typical things that families do.
Eventually I got past this, but it is a prime example of how you are constantly reminded that your journey is different. Yes, yes. Everyone is an individual, we should all have goals and achievements to strive for and all of our journeys should be different. But come on. Our world is full of conformity. No one wants to be the last kid when your are picking teams for kickball. We all want to be included and understood.
I ordered my book from amazon.com. The other neat thing on Amazon is you can take a peak inside the book
HERE.
I think I like this new "weekly-themed" post.
Did I mention this book is amazing?!
