rambling on

well somedays it seems i have alot to say...or maybe i just think i do and its just meaningless chit chat? either way, the blog has become an outlet, one i wish id had sooner...but nonetheless im happy i have. ive been doing a TON of reading thru peoples blogs, i read my normal ones, and flip thru their friends blogs (im not the only one who does this) and i read about my beloved CDH babies blogs and more recently ive stumbled upon some wonderful readings from topics of special needs kids, infantile spasm kids, cerebral palsy kids, developmental delay kids, autistic kids and more, i read their struggles and fights and leave feeling a mix of emotions, anger that they have to endure this, pride that they overcome much and fear that zach may end up on the worse end. i have yet to find (maybe i havent read far enough into some of the blogs) a child like zach, now i know there will be differences of course, but i want to be able to flip to a blog and go...wow, its like our story...i guess what i want is someone who has traveled the road were on to guide me in the decisions and paths we need to take...to take the cheaters way out i suppose. of course this wont happen....with everything zach has...CDH, developmental delay, possibly cerebral palsy, possible infantile spasms (still waiting for results) chronic lung disease, restrictive airway disease, scoliosis, pulmonary hypertension, pulmonary hypoplasia, hypotonia, subderal hemotoma, gtube fed...etc. each condition varies with each kid...so combine them all and no way will someone travel our exact road...i pray.
sometimes my blogs will be to raise awareness or to share feelings, sometimes it will be for the readers, however few there are, tonights though is really just for me, to pinpoint where i was/am emotionally today. i was very "driven" earlier and read thru a huge number of blogs, a new past time for me, and i found something id like to post here, for anyone who would like to read them, and for me to just remember.

this is called the mother at the swings...

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.