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I Just Need It To Hurt Less

Brandy and I have been at this blogging game a while. When we started Modified Mamas, we wanted it to be a positive space.

We wanted to share hope and ideas and support. In our efforts to create that space, we were careful, very careful. As southern girls do, we steered clear of certain subjects; you can’t invite readers to your porch and whip out your politics!

So there we were, careful, and honest, and careful, and hopeful, and careful, and angry but careful.

What you don’t know is that Brandy reached out to me a couple of weeks ago and said, “I can’t do it anymore. I don’t have it in me to watch the world go crazy and worry about what that means for our kids with disabilities and our daughters. I can’t be careful anymore.” Hundreds of miles away, she probably heard my sigh of relief through the keyboard. Brandy’s told you her version of why she needs to change, not the focus, but the tone of her posts. I guess this is mine:

Photo by Morgan Basham on Unsplash

The past 6 months have been, without a doubt, the hardest in my life. I started a new job last year, which I love, but it is another thing on my plate. I found my own health starting to fail and I was in pretty much constant pain. Then, my baby girl has had a steep, terrifying decline in her health. She is physically weaker, she is confused, she struggles with language, she is exhausted all the time. Worse than all of that, the happiest little girl I have ever met has lost her joy. Throughout our desperate search for answers for Mylie, I have worried that I would lose her. I never dreamed that I would lose her while she was still here but, for all intents and purposes, that is where I find myself. I continue to search; I will never stop, but in the end, I am helpless.

Trying to make Christmas, magical for my other children, while devastated by my daughter’s utter lack of interest nearly did me in. God knows, I tried. I gave it every single thing that I had and I was miserable. I had started new medication trying to deal with my own chronic pain, it was of little help, quite little in fact. So, somewhere in the month of December, I decided that something had to give. “I just need it to hurt less.”

After Christmas, not as a New Year’s resolution, but more out of some desperate need to take control of something in this life that seemed to be spinning in chaos, I decided to start an autoimmune protocol dietary change. This is not a diet post. I’ve had some success, I am feeling somewhat better, I’ve lost some weight (a pleasant side effect but, I swear, not my goal.) I’m exercising more even though there are days that just getting dressed feels like it may kill me, I move anyway. Slowly, it’s beginning to hurt less.

When you have a child who is underdiagnosed, you must always walk a careful tightrope. You have to know every bit of medical information and you have to research for every possible avenue to help your child, BUT the medical establishment has made it clear that they don’t want us mothers to know too much. Don’t question too much, don’t need answers too much, don’t cry too much. For 6 years, I have carried my umbrella on this Godforsaken wire and I’ve danced so fast and I’ve jumped just high enough but not so high that I fall. I squint and imagine that there is an end to this act but I’ve never actually seen it. “I just need it to hurt less.”

So in the last couple of weeks, I have spilled my pain out of my pink circus parasol on the people who know and trust me. I asked the therapists who have known her for years and who sit with me and wring worried hands to please start reaching out with their documentation and their questions to Mylie’s doctors. Their efforts led to a call with Mylie’s pediatrician and some sobbing. I’m still on the tightrope but I’m finding my umbrella a bit lighter.

And in the midst of all of this pain and darkness, this mother of a beautiful dark skinned little boy watched her country divide on racial lines. She saw people she loved bemoan the removal of Confederate statues outside the courthouse where she adopted that little boy. She watched them elect a president who bragged about assaulting women and mocked disability. She bit her tongue through talks of snowflakes, and whose rights are more important, and why she should be scared of refugees. And then a high school where dear friends of mine worked and lived had a shooting and not a full week later Parkland happened, “For the love of all things holy, I need it to hurt less!”

Mamas, I am just no longer afraid to say that I have lost all chill.

I cannot bite my tongue anymore. I will not scroll past steaming piles of bullshit tied up with second amendment bows. Yes, dammit, there is something we can do, it’s what everyone else in the industrialized world has done: gun control. No, I don’t think we need to take every gun from every citizen but they need to be harder to get and limited in their capacity.

Photo by Leio McLaren on Unsplash

My inability to shut up doesn’t stop there either. You want to spout anti-muslim propaganda to me? I’m going to remind you how the Bible you beat makes it very, very clear that we are expected to care for immigrants AND widows AND orphans. It doesn’t say it once or twice like oh, say, homosexuality, it says it literally hundreds of times. So, spout your rhetoric if you like, but don’t you dare do it in the name of the Most High around me. Don’t you dare!

The angrier I get, the more I find I have to speak up about. My children with disabilities have every right to immediate access to public spaces, not six months after their complaint. My little boy should not be any less safe walking down the street, into a store, or driving his car because he has brown skin. My daughters need not ever suffer the humiliation and self-loathing their mother did because Time’s Up and I’m going to show them how to love themselves and love other women and how to stand the fuck up and say NO MORE. It’s time for this country to hurt less.

So, while I pray you still come here for shared experiences, ideas, and hope, I can no longer manage careful, the real is spilling over from me.

I cannot hold in what’s broken because I need it to hurt less.

~Nicole

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