Your children will teach you everything you need to know

Watching Speechless has been the most therapeutic thing I've done recently. Lots of people have suggested that I get in touch with a support group, meet other parents, listen to their stories, get support there. I think because they don't know what to do, can't imagine what it's like, feel scared and heart broken themselves, want to fix or do something. Nobody seems to know what to do. I say bring us a meal, send B a check, ask us to hang out, or just come over, but still no one can imagine. Watching Speechless helps because it normalizes disability, it brings awareness in a funny, helpful way. Each time I go online to find support, all I see are these terrible pictures or death notices posted, I guess to bring awareness and funds to the cause to cure Duchenne. 

I think I'm moving from accepting that B has this thing to the consideration that he will die, and not in his 30s or 40s but sooner, that I could loose him, not just his muscles. They say, that its harder on the mom, the parents, then the patient. That the patient knows in ways the parents can't. I know that he is the ancient one, he is the one with the knowledge and understanding and that he is going to teach me probably far more than I will teach him. 

Your children will teach you everything you need to know.

I wrote this in my journal a while back. Your children will teach you everything you need to know.  So, what do I need to know? That life is precious and terrible and why wait to do anything? That my emotions are here to bring things to the surface, to light, so they can be washed cleaned and released back into the sea of feelings and consciousness. That I can raise my vibration a little and that's enough, I don't need to make quantum leaps and that I will need to relearn again and again and again and again. That yelling in useless and only depletes energy. That i love my children too much to yell at them for any reason. That laughing and singing and dancing are a sure way to release tension. That love making does as well. That my children are angels from heaven and that we are all miracles. That after every night, day will come again until it doesn't. That we can only know so much and we will never stop trying to know more. That things changes. To just keep swimming. The let go, let go, let go and hold on. That its a mess and beautiful, precious mess. To get your head out of your ass and slow down. To turn off the news and Facebook feed, but allow Instagram and Insta story for a little while. That those that inspire you are further along on the path and with awareness people become more humble and more wise as they age. That I know nothing. That I wonder what you are thinking and fear abandonment. And that fear and that feeling are what cause the most pain. That being in Nature helps.

Possibly our last "hike" at Hedrock Nature Preserve in Neenah.

Clearing out the dark corners

I watched four episodes of Speechless last night. The show is about a family of five, the oldest boy JJ has cerebral palsy (the actual actor has cerebral palsy too) and uses a wheelchair. The writer, Friends writer, Scott Silveri writes from his own life experience of growing up with a brother with cerebral palsy. It's funny, poignant, sensitive and applicable. 

Last post I mentioned Krishna Das saying, if I didn't chant, I would never clear our the dark corners of my life. While, here goes. I recall seeing someone in a wheelchair, wondering as to why they needed one, smiling so as to connect human to human as sensitively and non-awkwardly as possible, smiling at the caregiver, and then thanking my lucky stars that both my boys were healthy and that wasn't me. You never think its going to happen to you. Now, I watch the boys play together, and work with the knowledge that it has happened - it is happening - to us. All I can do is rest in the present, watch and enjoy every beautiful and precious moment, feeling the feelings as they arise and keeping my thoughts at bay and focused on my breathing, the cool breeze, the warm sun, the sweet moments before school is back in session, and their beautiful luminosity. They say, it goes so fast, but for me, I've slowed down so much internally and expanded my awareness so much that the opposite is true. If anything, I think the clock moves quickly, but time does not. Time is infinite. Time is beyond our capacity to understand. So we create clocks and watch the rhythm of the days and seasons pass. Each day, we grow closer to our inevitable physical demise, yet our Soul extends far beyond. Is this true? I don't know. A part deep down knows it is, but another part thinks that's crazy and desperate - that other part is a skeptic. That skeptic takes the joy away, that skeptic needs to shut the fuck up. One thing that I know goes fast are my thoughts, my feelings, like a choppy sea, filled with sharks with wave after wave after wave crashing on me, me wondering how I'm going to find peace in the midst - and even survive. Worrying about my little boy, worrying about myself, worrying about his brother and daddy. I feel so removed from the world, my grief, of course is heavy right now. My grief of course will become easier to manage with time. I will keep doing the things, managing the tasks of day to day existence, playing legos, laughing, but its so god damn painful this life, loving, feeling, moving, watching, trying to Be. So you see, the dark corners, what can you do but go in, shine and light and get to cleaning? But, please, don't expect inspiration here.

My heart wants Joy. I am here to give of myself.

I'm not sure what to say these days, writing is difficult. I let the difficulty stop me, but I don't want that to continue for much longer. Krishna Das, in this interview with my teacher Elena Brower said,

"If I didn't start chanting (i.e. sharing myself) with people, I would never clear our the dark corners of my life."

And, renowned yoga teacher Desiree Raumbaugh who's 18 year old son was murdered without cause while camping with his girlfriend is know for her openness and vulnerability to the great benefit of her students, said,

"For the first two years, I was in so much emotional pain that I couldn’t help but share it in my workshops. I shared my grief openly with my students and many of them thanked me for being an example of someone not afraid to be real and true to her feelings."

I may not be able to share as openly in my classes at the Y, because its all so new and I'm just trying to keep my head above water and be present. But, I can try to share openly here. Friends, I have to start somewhere. Though my heart breaks for my boy and the challenges that lie ahead, I know there will be tremendous value if I try .. try to share openly, try to share what I'm learning, and just write until I can give my heart what it wants .. and that's Joy, and I can give of myself, because that is what I am here to do.

Your encouragement, words, feedback, comments will mean so much to me.
I love you,

Kat

What's Really Wrong

I haven't really been able to find the words that adequately describe all the feelings, thoughts, and everything I have been experiencing the last few months. I suspect that I never will, but I will keep trying because I know that sharing helps. It's easier for me right now to look at this from a more indirect perspective. There is so much support in the MDA and DMD community, but I am simply not ready to jump in there.

So I found these and they are helpful in describing what this is like and what you can do to support my boy, our family, and me - because so many have asked and offered help. These are tough, but important reads (especially What's Really Wrong), so you may want to sit down. 

From Mother: One Mother on her daughter's Limb Reduction Complex diagnosis
From This Little Miggy Stayed Home: What's Really Wrong
From This Little Miggy Stayed Home: School and Navigating a Special Needs Encounter +  Navigating a Special Needs Encounter

Son

SON
You are small, but you contain worlds.
You are helpless, yet you shine with the power of life itself. You cannot contain your own power.
When we are together, there is nothing else. You are present, rooted.
You remind me of the miracle of being here.
You reach out. You are testing, exploring, carrying out brilliant experiments. You play in a world of desire and thwarted desire, pleasure and pain, sleep and wakefulness. You find your place in between. You take everything in.
You will know sorrow soon enough, perhaps even despair. Great suffering may befall you, yet also great potential for awakening. You may question everything you once believed to be true. Your path may become unclear. You may stumble in the darkness.
I may not be around to help, or give answers. That’s okay. You will find your own way, learn to trust your own stumbling. Or maybe your questions will fall into silence, and you will remember the wonder of these days, the ones we spent together before time mattered at all.
You are the illumination, little one, the hope and the possibility. All the darkness in this world seems so insignificant compared to the light and wonder in your big eyes.
I cannot tell if you are old or young. Perhaps the world has it all backwards. Perhaps you have lived a thousand years or more. Perhaps this is your final incarnation. Perhaps you have fathered (/mothered) me, so that I may find myself here, next to you, broken but whole, humbled, brought to my knees in gratitude. I do not know.
It does not matter. I will assume you are ancient, and worthy of the greatest love.
And you will remind me of the days when there was strength in being vulnerable, and joy was always near.
– Jeff Foster