Whispering is Rude....

Sometimes Life is crazy the way things all fall together.  This is  a 2 part post- the first part is my own thoughts and the second part is a blog from someone else.  I think you will understand why they had to go together.

So this morning, I was driving to school thinking about life.  I was enjoying the sun and the beauty of the promise of the spring to come.  Each day we get closer to time outside and time with friends, and each day my excitement grows to finally be released from our house into the back yard and beyond. So this morning I was thinking of things I am excited to do.  I'm excited to take the kids to the Marion Festival. It is a home town, hillbilly, bingo playing, Ferris wheel is the only ride carnival.  And everyone from the small town goes. The food is great - a "lap" consists of walking about 50 steps around the center kitchen / bingo area.  It is wonderful summer fun.  Everyone I know goes to the Marion Festival.  ...Everyone I know.  So - I'm picturing this summer fun. I'm imagining the twins running around with their arms in the air.  I'm imagining Alexander in his stroller. (Can you see this?) ...... and then what? 

The paranoia starts to set in.  Will people whisper, "There is Kristen and Ray... you know... their youngest baby is 'not right."  "Well... you know what I heard? I heard he will never walk or talk."  "Look at him.... he looks like a newborn."

"I feel so sorry for them."  The people look at each other. They whisper. They look at us. They whisper. My worst nightmare. Crap!  What will I do? How will I respond? How awkward will it be?  Will we be the talk of the town? People like to share gossip.  People like to be the one to tell everyone .... Maybe that is why I started this blog.  Maybe I wanted my words to be the ones people hear in their heads.  Maybe I would like to guilt people into not whispering about my family.  Maybe I would like to give people a glimpse into our world.  Maybe -I would like for people to picture themselves as us. I would like for people to show compassion and respect for my family.  They don't need to pity us... just not whisper about my family.  I wonder what it will be like when we are out and about.  Already - people show shock when they ask how old Alexander is.  Someone yesterday asked me if I just had him...I refuse to lie - so I said, "no... he's almost 10 months."  The girl bumbled over words - but you could see the questions come across her face. 

So what will this summer be like? What will people say? Even people who love us.... what will they feel like they should tell others?  Will they think words like, "just not right..." are ok to describe my son?  This was my profound thinking on the way to school.  I was wondering if and when I might share these thoughts.  I was going to give myself more time to digest what I wanted to say... Then I found this other blog post.  - and she said it better than I ever could.

The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger. The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?"

Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing.

And, yes, he also loves to swing because all children love to swing.

I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did not walk until he was five, still does not eat anything other than pureed baby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open." I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk and read, all while my son continues to function at the level of a two-year-old.

And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: the rocks, the wanna-be-theres, and the gingerbread men. It warned us that people we might think were "rocks" could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth.

I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: the mother at the swings.

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this?

She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.

When you see us this spring or summer... I'll understand if you are a Mother at the Swings.  I'll love it if you are a rock.  But if you are a gingerbread man... don't be surprised if we head our separate ways.  My life did not crumble.  Nor do my real friends / supporters.

Whispering is Rude - but Life on the Swings is ok