Fear, or dance – part 2.

I wrote yesterday about the choice to be grateful & see joy when it comes to parenting two children with multiple disabilities. But I don’t think I was honest enough about how hard that can be. I started this blog as a place to speak my family’s truth — the whole truth — about living, learning, and loving the incredible diversity that exists in the world and in the brain. I started writing not only to share the joys (and, oh, there are so many joys) but to be real about the hard times. We end stigma by removing secrecy, after all, removing it in a compassionate and respectful way.

The truth is that choosing gratitude is hard. It is hard, every single day. Some days more than others. Today was hard. We had to help Little Man take many breaks, as things were thrown, people were bit, and stuff was broken. Diva hasn’t eaten in several days, not really, because the holidays are so stressful for her. The house is messy within minutes of cleaning. Our cats are back to being locked in the bedroom, even when line-of-sight is guaranteed. I cannot go pee without someone crying that I am leaving them alone. There are always appointments, more and more appointments. People whisper about us, sometimes not even behind our backs, about how spoiled LM must be. They wonder why we don’t “get control” of our child. Everything has to be explained over and over. I try to balance helping people understand LM & Diva with maintaining their privacy. I am exhausted; I fall asleep at 7:30pm with my son several times per week. My budget gets broken by more doctor’s appointments, more medicines, more needs. We are lucky to take showers on a regular basis. School insists that we try to do this or that more, without realizing that I am already trying. I am already trying to teach Diva to feed herself, but I have to do it while getting dinner on the table, while feeding myself, while regulating LM, and while trying to enjoy dinner together as a family. Laws are broken. Emails have to be sent. Life has calm moments, but they are fragile and fleeting.

Amidst all this, it would be easy to sink. And I do. I do sink sometimes. I lock myself in the bathroom and refuse to come out. I wonder why we made this choice, to have our lives turned upside-down, to become parents. I yell. I want to throw things. Every once in a while, I do throw something (though only when I am alone in a room). I want to rage at the world that helped create this much pain in two children. I want to rage at a world that does not support families who need it more than anything. I could be consumed by it. I have been consumed by it. I have become cynical, jaded, and worn down. I have become hopeless. I don’t like being like that. It doesn’t help anyone. It certainly doesn’t help me.

So, now, I make the choice to be grateful, to dance with the madness that is my  life. I remind myself – this is life. C’est la vie. This is my life. I own it. I am here. What do I want to make of it? Joy. I want to make joy out of it. Every day, I practice turning straw into gold. I practice turning hardship into opportunity. I will myself to be open to Love. It’s not easy. It must be done, or life would eat me alive. For so many joyous people, it’s not that their life is easier. They are alchemists of moments, and that is how I want to live. That is how I choose to live. How do I do it?

  • Gratitude practices – I give thanks. I don’t just do it mentally. I write it down. I take pictures. I post it on Facebook. We each share something that has brightened our day at dinner. Gratitude is the gateway to joy, according to 900 million spiritual leaders and researchers. It’s one that I try to open every single day.
  • Connection – I connect with others who have shared experiences daily, thanks to the power of Facebook, blogs, memoirs. I ask for help. I share stories. I talk about the hard stuff. I stopped worrying about talking too much, annoying other people, and started seeking what I needed. I remind myself that I am not alone.
  • Inspiration – I seek inspiration. I read stories that lift my heart and soul. I listen to music on my car ride that cheers me or calms me. I collect quotes that connect me to my heart, that restore my faith in the future, that remind me I am doing a great job. We are surrounded by things that will bring our hearts down, and we must make a conscious effort to do otherwise.
  • Self-care – I am going to be honest. This is my weakest link. I don’t get enough sleep. I don’t drink enough water. I don’t move my body enough. I’m trying. I’m trying to take my vitamins and medications correctly. I am trying to get sleep, or take naps. I am trying to get on my mat. It’s a daily struggle, but I am trying, because I know this matters.

What do you do to lift yourself up? What do you do to help your soul keep marching onward? How do you bring the smile back? Leave a comment; I’d love to hear from you!


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