Friday, July 08, 2005

Thoughts on Holland

The post looking at Welcome to Holland and Have a Nice Trip, along with the wonderful insight of Andrea at Beanie Baby, has had me thinking quite a bit since I read it.

An acquaintance of mine [a local sister in the same 'sorority' chapter as I] wrote this essay/letter that I keep filed right next to Welcome to Holland. I keep a file of sorts,,,,
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a collection of postcards. Some are simple little quotes. Some are a paragraph or two. Some are just postcard photograph with a simple hello and a stamp from the time and location. Some are longer essays filled with many facets and some are books, such as Pearl S. Bucks, The Child who Never Grew. The words are different, the perspectives and experiences are unique,,,,,but the common thread is the same. We are sisters in a sorority of Motherhood, traveling to places that others may never get to experience or even understand. We are all richer and wiser from our travels, although our bodies, minds and souls sometimes have gotten worn, battered and bruised from the trip. Our luggage doesn’t always arrive or our connection never comes, So we need to adapt the best we can. But we are travelers, the world over, and our journeys are the journeys that make a life full of wonder and full of new horizons.

So I share with you this piece, and I hope it finds its way into your 'collection'

To You, My Sisters
© Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children ungergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars


Anonymous Andrea said...

That was lovely. Thank you.

10:25 AM  
Blogger Rob said...

I find it ironic how an essay that seeks to debunk stereotypes and preconceived notions doesn't mention fathers, not one single time.

9:34 PM  
Blogger Moreena said...

Geez. You are right, Rob.

That's why I'm glad (and honored) that you're here sometimes.

I need to do some more work in finding the voice of fathers out there.

11:29 PM  
Blogger Sarahlynn said...

Rob, I heartily disagree. The author was very clear, right up front, that she's a mother talking to other mothers. If she wanted to write an essay to parents, she could have done so. If a father wants to write an essay to other fathers, he can do so (please do!). But there is value in mothers simply talking to other mothers, too.

Today, much of what's written is so perfectly politically correct, talking always to "parents" instead of to fathers or mothers, to avoid offending anyone, that we've gone too far. We can no longer recognize anywhere that it really is *mothers* who are doing the majority of this work.

To be sure, fathers are far more involved that they used to be. But women still stay home with children far more often than men. Women still handle much of the childcare in this country. It's no insult to men to point this out.

But when a woman does something for other women, immediately men cry foul. It doesn't hurt fathers when mothers talk to other mothers. I don't think it's the job of mothers to spend time "finding the voice of fathers out there."

I think that fathers need to be increasingly involved in their children's lives and to write about their own experiences.

This blog is a good start. But we're here to support one another, not to deride others for where they might find support.

9:01 AM  
Blogger Rob said...

You can disagree all you like, but the fact is that even in defending this essay on preconceived notions, you're applying your own preconceptions.

"But when a woman does something for other women, immediately men cry foul." Is that so? Is that what men do? So my objections aren't from a father, one who works as hard as any mother alive to make a life for his daughter, but rather from your concept of what men do.

Exclude fathers from your discussions all you want. Make proclomations from mothers to mothers and feel as superios as you need to feel. But I don't represent men or fathers or anyone but myself, and speaking for myself, I think you and the original writer are short-sighted and lack vision. If that's deriding you or anyone else because they find inspiration in elitist language, then I guess that's what I'm going to do.

I think that fathers need to be increasingly involved in their children's lives and to write about their own experiences.

Buy my book next year. Some of us are doing just that, and will continue to do so in the face of not just the crappy attitudes the world has towards our special needs children, but also against us as fathers. We do it because if not us, then who?

2:04 PM  
Blogger Sarahlynn said...

What we have here is a mother who wrote a lovely essay about her own experiences as a mother. You suggest that because she wrote of what she knows, she's somehow remiss. Like it's her job to insure that her audience is as broad as it can possibly be.

Lots of men don't see the value in women-only space. I'm not here to fight that battle; this isn't the place for it.

But surely a woman can write of her own experience and of what she sees in the faces of her friends without someone suggesting that she should be seeking out more men to be friends with.

By speaking of her experiences, she is in no way hurting men, hurting fathers. She is not denying fathers' experiences. She's simply a mom talking to other moms. And I assure you that there's value in that, just as there's also value in larger discussions with broader audiences.

It's so easy to blame women, to blame mothers. It's much harder to blame fathers: the fathers that aren't around, the men who ridicule involved fathers. It's not mothers who are to blame here, and it's not women who are feeling "superior."

11:44 PM  
Blogger Jen (momofmandm) said...

Thanks Sarahlynn for your comments. It really is up to the mothers to do most of the work with the kids while the fathers are working hard to support their family. Its not like we are trying to put down the men for not doing more, its just how it works out most of the time. Men do have a very large part of parenting, but like Sarahlynn said, it was about a mother writing her story to others who have been there. Rob, this is not a place to bring offense. We are just a bunch of people that are going through the same kinds of things and if we want controversary we can find it EVERYWHERE else. I'm sure that you are doing as much as you can to help your child as a father and we applaud you for that.

7:58 PM  

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