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Thursday, November 15, 2012

Learning To Shut Up and Listen

"Mommy, look at the hippopotomus in the sky."

"What, sweetie?" I blinked longer than usual, awakened from the mental worry list I was running through while driving her to preschool. I shut up my brain. I looked up. I listened. What a gorgeous sky, filled with soft, shapely clouds.

"Whoa, look at that hippo!" I answered. "How did you find it?"

"It is a baby, Mommy-- the tail is there, the big tummy and head are over there."

"What else do you see up there?" I asked.

And she jabbered on, joyful to have my attention, about hippos. I listened. I could have missed the moment. But a little voice reminded me that living is listening. Listening honors life, people, God.

I have never been a good listener. I am a talker. I often feel embarrassed about how much I talk. I have so many thoughts that I need to get out of my head, and I guess God gave me a lot of ways to communicate those ideas. I paint, write, and I talk, talk, talk. My parents called me "jabber box." I don't think it was a compliment.

But I needed (and still need) to learn about listening. It has not come naturally to me. So in came my special needs boy T. He demanded intense awareness and listening from the beginning.  Not simply listening with my ears, but additional, harder work-- listening with my heart, mind, eyes, my gut.

It started with me watching and listening and thinking, "is that your heart hurting you?" Then later it transformed into the much more subtle questions, "Why can't I get you to the car after preschool without your throwing rocks and bolting into the street? What triggers you to fall apart? Why are you talking incessantly about parking tickets? Why are you clearing your throat again and again? What made you wake up whirling around, destroying the house? Why are you throwing a 30 minute tantrum because I dropped your doll?"

I think parents have a gift the moment that they conceive a child. A line into the heart of another human. They can choose to pick up the receiver at the end of the line, or they can leave it on the hook.

When T was born, I had not made the decision about whether I would go back to work. I loved my career and honestly didn't want to leave it. But I picked up T's line, and I couldn't put it down. I mean, it was pretty clear with the heart surgery and the heavy medications for the first year of life...The signs were screaming, blinking lights, EKG printouts, and chilled toxic drugs-- listen, listen, listen. Be the voice, the megaphone at times, for my child. Get out of myself and be there for my child. I was extremely blessed to have a husband with a job to allow us the option for me to be there. All the time.

There are so many stories of advocating for T, it is hard to choose which one to share in this post. We learned about becoming this fragile infant's voice in the ICU after his heart surgery because, to our disbelief, the doctors, surgeons and nurses never wanted us to leave his side. They taught us that we were holding the line. As his parents, they showed us that we could see and feel things about him that they couldn't. They treated us like we were almost him. We were his voice, for them.

So we left that part of life, the world of life and death and hospitals, with the awareness of our responsibility as parents. Simply seeing and hearing our child wasn't enough-- we needed (and continue to need) to act on his behalf, maybe for the rest of his life. We would later become his voice for doctors, therapists, psychiatrists, teachers, pastors, parents, friends and relatives. They may or may not listen to us, but we would still listen to him, and talk, talk, talk. So I guess I am his mom for a reason.

I have had people tell me that they have a child with SPD, but they keep it a secret. I have had a mom or two advise me that I might want to consider being "less open." I sometimes get sad that there are families and children who feel that they have to hide from being truly known.

Two years later, T's brother whom I will call "N" was just one-year-old when he became very sick with the first fever of his life. While I waited for a call from the on-call nurse at 5AM for advice on Tylenol dosage, N lost consciousness in my arms. I screamed his name over and over, and I shook him (yes, I shook him). He looked blue and dead. He eventually regained consciousness when I took off his clothing, after the nurse called and directed me to do so. Later, the ER doctor told me that it was "just" a febrile seizure from a benign virus. But weeks went by, and he kept getting ill and having seizures. I tried to convince doctors that there was something seriously wrong with my baby. They still told me that he just had a bad virus.

I became N's voice, and I knew something was wrong. I kept going back. I had been blessed with many hours in a pediatric unit of a hospital. I knew. Finally, after more urging, a pediatrician gave him a blood test and we learned that he had "Relapsing Fever." A life-threatening, rare disease from a tick bite, affecting 1 in 25 people yearly in the U.S. He could have died from shock during that first episode of the disease. He also could have died from shock when the pediatrician recklessly gave him the antibiotic without hospital monitoring. He had what is called a JH Reaction, where his blood "went toxic" involving foaming at the mouth and intense screaming and pain. We went to the ER with him and, get this, the ER docs and nurses did not believe us that he even had Relapsing Fever, much less a JH Reaction, until our pediatrician called. I had to scream and cry for my baby. I was his voice.

Looking back on it, I knew that something was very seriously wrong with him. I had to become annoying. I had to trust my gut and just keep pestering the doctors. I think I should have pushed harder. But hide? Heck no!

Do you want to be known? I do. Do you want people to listen to you with their ears, hearts, minds, eyes, and guts? I do. I have God, who knows about every hair on my head, but I still need an authentic community of listeners.

Today I'm not a listener because I am a good listener. I'm a listener (sometimes) because God has given me lots and lots of practice. Those blessings again. It is an honor to listen. I have had the blessing of learning that if I don't listen, and I don't ask the questions "why?" that my children will not be known. And I think that if they are not known, then they are not loved, and they will not be able to serve our world. To share their gifts. And in the very worst cases, which I suppose I am blessed to have experienced-- if I don't listen, my children might not live at all.

But it doesn't stop there. I need to listen to all children, and to all people, and to God. Listen. It is the least that I can do. I need to put down my phone, my Ipad, my laptop. Put my feet on the ground. I need to shut my mouth, my frantic, busy mind, and listen-- with my eyes, my ears, my heart and my gut. There are voices, problems, feelings, calls for help, ideas, clouds and hippos out there that I might miss if I don't slow down, and listen.

If you have read this far, thank you for listening! I am grateful. And if you have thoughts, please give feedback, so that I can listen to you, too...



Amy P. said...

Amy it is such a joy to read these posts. I too have had people ask me if I want to "hide" or literally cover up J's hearing loss and aids. I don't understand people who think that acting less open or secretive is okay. What does that teach your child? That you are embarrassed by them? That is crazy! I am like you - and will talk talk talk about our challenges - big and small. So thank you so much for sharing this. Sending you and your family lots of love this Thanksgiving season. xoxoxo

Challengermama said...

Thank you Amy! I share with you the idea that if I'm hiding my child's challenges, then I'm teaching him that he needs to hide. I hope he will see his struggles as blessings. We all have them, it just takes a different set of lenses to see why we have been given them... I'm glad to know you, Amy!

Laura Grace Weldon said...

Oh I hear you, I hear your voice. Each one of my four children had serious health issues in their infancy, one with chronic health problems. We have similar horror stories of our interactions with the very medical professionals we relied on to help our dear little ones----everything from casual indifference to nasty ignorance that threatened the very lives of our babies.

I would have absorbed every moment of their pain into my body if I could have, I would have taken on their diagnoses for them if I could. But all I could do was be there, fully, to hold and care and as you say, listen. I'm still trying to listen, imperfectly, but that door has been pushed open in me and there's no closing it now.

Challengermama said...

Thanks a lot for reading and writing! It is nice to hear that you can relate. Four children with health issues-- wow. You must be a different person than you were before kids. Sometimes I wonder if it is more painful to see our loved ones suffer than to be the actual victim of the pain. Because we feel so helpless. I guess that is why we listen-- to absorb a little bit of it. Blessings to you! And may that door always remain open:)

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