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Tuesday, October 28, 2014

A Voice Worth Sharing

My terrified mouth opens wide to make the scream. Pressing out, searching for a sound to come, I hear nothing. I grab emptiness from my dry throat. I try to be heard, but still there is only silence. My eyeballs open wide, and I sigh with relief as I drag my exhausted head upright, just above my rumpled, damp sheets. I’m shaking and sweat covered, glad the nightmare is over and my voice has returned.

Lately I’ve been learning about my voice, and I’m pretty sure that the years of nightmares about losing it are not simply coincidences.  Growing up, like most kids, I learned to sound like others rather than to find my own voice. My parents joked about me as the “adamant” child, and the “jabberbox.” To me, those were embarrassing nicknames, and in truth I wasn’t that adamant. Yes, I talked too much about things I knew very little about, but I would back down the minute my popularity or respect was in danger. Like so many kids, I wanted to be liked, so I learned to muffle my voice. Maybe even silence it.  

And then nine years ago, a warm, one-month-old child taught me, a new terrified mom, how to speak for him. I had to find my voice again. Find it for him. I would show the nurses when he needed my body close, when he needed my finger right there in his mouth, needed my milk, needed my whispers of love into his tiny ear as that machine rubbed his chest. I could feel his needs… they were so undeniably true. I could see truth without any doubt in that child. His eyes needed to know that I would shout for him if the needles were hurting too much. And so my voice was heard.

Today, particularly as the mom of a special needs child, I’ve had to discover a voice that is not afraid when there may be few others speaking my language. Few who are able to understand me.  I need a voice planted in love that wraps around every rock thrown its way, eventually finding the path to the light. A voice that tells the true story, not the one people want to hear. A voice that identifies the need, asks for help, and gives thanks when it is heard. A voice that knows when to be quiet and listen, and when it is just fine to speak. A voice that forgives itself when it hits the wrong note.  A voice without fear.

This voice finding thing is so hard. Because the recipients of my messages aren’t the people who love me. Not the kind doctors and nurses from the hospital. I have had to confront the people I fear, the people I have wanted to run from.  I have explained my situation to the high-heels-wearing mom who blocked my way into PreK each day, sneering at me as I tripped in, squeezing past her with my “disregulated” boy. Needed to approach the pastor who looked down on our family and me with judgement for not meeting his criteria for how women and children ought to act. I had to speak to the coach who grabbed my son by the arms and shook him to calm down. The therapist who sat back and waited for my boy to fail before reaching out to help him in school. The specialist who refused to give us critical information about our child because she thought we couldn’t handle the reality of his “bad” behavior. The parent who hurt us day after day with her angry stares as she pulled her children away, urging them not to play with my boy. And finally the relative who needed to tell us what we were doing wrong every time he paid us a visit.

And in the end, I have needed to forgive when I’m not heard. Ask for forgiveness when I don't hear others.  Forgive, but never again lose my voice.  Because if my voice is rooted in love, seeking God, and wanting to find the truth…well then it is a good voice. A voice worth sharing.

My prayer today is that I have the courage to listen to the unique voices of each of my children, my husband and my friends. And to always believe this voice I have is my truth, my soul and perhaps the greatest gift I have been given.

Monday, October 20, 2014

Smiling At The Truth

Hello again. I haven’t written on this blog for over a year now because there was a long period where I worried that the “mainstream” friends that my son was making through his swim team might read this blog. They were his first opportunity to be part of something that felt “normal.” If they read my posts, would they avoid him because his mom regularly wrote about the “blessings and struggles” of parenting him? Would moms run the other way when they saw me at Whole Foods or the neighborhood pool? Not return calls for play dates?

I had spent years trying to find a place, or simply a method for my oldest to “fit.” And my desire to advocate for special needs kids and parents through blogging was important, but wasn’t going to destroy all of that work.

But then we moved to a new state (Connecticut) for my husband’s job, and we happened to find a private school that has a special class for kids who are like my guy. Some kids are on the spectrum, some almost there, with extreme ADHD or PSD or ODD, and some kids are just super-sensitive…Those three years of boxing him up in a homeschool environment (because that was the only place where he could be HIM) suddenly ended. A rainbow appeared!

My boy is now in a school where there are 23 little people similar to him. 23 beautiful, quirky, kids who, along with their parents, have mostly been through unbelievable hell. And for the first time there is just NOTHING to hide. There is simply a smile on the face of a boy who found his people.

Today my boy talks openly about his challenges. In fact, the more self-aware he becomes, the more he teaches me. He says things like, “When there is too much noise, I feel really stressed and can’t think about anything.” Or “I can’t go to places like that. There is too much going on, and I go crazy.” Or “Everything sounds really loud and mixed up together and makes me feel upset.” Or “I can’t remember things. I lose everything, no matter how hard I try.”

At first his words remind me of how much he struggles, and so they hurt a little. But then they sparkle with a light that is reassuring, a glow that proves he is a work of God’s undeniable grace. I see his new ability to analyze himself as proof that the struggles were part of the plan. He has been through an incredible journey for a boy of only nine years— heart surgery, arrhythmia, kicked out of preschool, different private schools, different aides, friends nowhere, nowhere to be a boy. And now he can look in the mirror and sometimes see his own reflection, with compassion. The reason? Maybe because he is in a place where he is considered “normal…” A place where he is encouraged to explore the truth.

Here’s the blessing: I want to live in the truth, too, just like my 9-year-old. Leave the fear behind and see my reflection clearly staring back at me… See all of the inadequacies there, and stare them down them without fear or shame. 

Learning from him means learning to love my family when we can’t get our sh##
together. Can’t get out the door to go to church because my guy is having a dismal morning, leading to two more tantrums echoing down the hall. Can’t get to school on time. Can’t leave a party without a scene. Can’t turn in homework unless it is crumpled up and lost for two days…

I will be there with my kids and my husband. Flesh as it really is. Messy. I’ll stop chasing that illusion of a family, of a woman, of a mom who just does not exist. The light will come through, anyway, somehow. It always does. And I will smile, just like my boy.