Every day with her is special

In honor of World Down Syndrome Day, I’ve decided to post in honor of my own special child, Marissa, who’s 13 1/2. I’ve written a bit about her already, but this post is specifically about my fun little kid.

Fourteen years ago, I found out I would be giving birth to a child with Down syndrome. I felt very blessed to know ahead of time that my baby had this extra chromosome. I’m the type of person who likes to be prepared, so it was nice to have half of my pregnancy to learn more about Down’s and just be ready to have a child with a disability. For me, what made it particularly nice was that her birthday was like any other baby’s birth: a day of joy and welcoming, with lots of photos, phone calls, snuggling with the new little one. If we had been surprised by her extra chromosome that day, I am sure a hush would have fallen over the room and there would have been feelings and reactions other than just pure joy and excitement over a new addition.

Marissa was the sweetest, most content baby I’ve had. She was happy to sit in a car seat or bouncy seat and just sleep or lie awake and watch me and smile back at me. She is still a very happy girl, no matter what. She has moments of frustration or anger or sadness, but they’re so fleeting it’s almost as if they never happened.

We’ve been very blessed that Marissa hasn’t had any health problems, no heart surgeries or anything that we’ve had to monitor. Over the years, she’s had a variety of therapies and extra services through early intervention programs and the school system, and she’s done really well. In fact, for a long time I could practically forget there was anything “different” about her. She walked right before she turned 2, and she has always talked fairly well and mostly clearly. She loves to read and does a great job sounding out new words. She just seems unbelievably bright to me and to others.

It’s now that she’s a teenager that I am more often reminded that she isn’t really in the same peer group as kids her age. She’s always been very small for her age, and the older she gets and the taller and more developed everyone around her gets, the more that distinction is pronounced. She is the size of an 8-year-old and behaves much like a 6- or 7-year-old, really. For a long time, she’s been quite happy playing with her younger sister who’s 4 years her junior; now she seems to be just as content to play with our youngest, who’s almost 5.

She was strictly in a regular classroom at school for some years, up until about 4th grade, when it seemed a better strategy to put her in a class with other students who had some learning disabilities of various kinds. She still gets to interact with her peers in p.e. or in art or computer classes now, but she has a better opportunity to have learning tailored to her needs in a special class. And I’m happy with that, mainly because she gets plenty of attention and seems quite happy with her class.

Marissa is eager to help and do nice things for others and she loves to hug. That actually can become a small problem sometimes because she’ll hug anyone, even someone she’s never met, and we have to keep reminding her not to do that.

At this stage of raising her, I’m honestly most concerned with her biological changes; she’s slowly starting to grow into a womanly shape (even though she’s still really tiny height-wise), and that means she’ll soon be experiencing other womanly changes I’m not sure how to address or warn her about as I did with my oldest. It’s all kind of a trial and error situation, raising her, but that can be said for any kid, I suppose!

There are tons of resources available out there now for parents of children with any disability, and there are many wonderful places to find information and support if you have a child with Down syndrome. The difference between what’s out there now and what was available just 14 years ago boggles my mind. The internet was barely around when she was born, with not nearly as much information as it has now, and my city library was where I turned for some information when I had my amniocentesis. I found a book that had a little useful stuff, but I think I was just looking for some photos of cute kids, and then I didn’t really find any. Now, there are some wonderful sites and resources that feature gorgeous photos of beautiful children and youths with Down’s, and it does my heart good. This organization, Band of Angels, apparently was around in 1998, but it wasn’t as easily found as it is now, and it just has beautiful photos. When I meet someone with a new baby who has Down syndrome, I either buy one of their products to send or tell the parent about it. It’s just reassuring to see other kids with Down’s given the adorable-photo-shoot treatment. I found it comforting, at least, when I learned about it.

In the first months of her life, I was actually given some books and tons of pamphlets and packets of information about Down’s and different resources available and services and ideas of things I could do to give her a stimulating environment and help her develop. Honestly, I barely read any of them. All that information is simply too overwhelming. When you’re just trying in those early days to get some sleep when you have a baby waking up at night for feedings and diaper changes, that’s the last thing you have energy for: reading and researching. And then as she grew, we had some good support systems referred to us, so I didn’t feel the need to go searching for a lot more.

I think it’s that way parenting any child. There’s always more you can do for them, but never enough time and energy. So you just do the best you can to make their life happy, fulfilled and enriched. Now, I just hope and plan for her to have opportunities as she finishes up with the school system to be able to live semi-independently and have some kind of work and a good support system and network of friends. I want her to have a happy life, just as I want for my other three daughters. And she seems well on her way. Marissa is one happy teen.

Happy world Down syndrome day.

The writing blues

This post is dedicated to all the writers out there.

I have been published quite a bit in newspapers, I write for my own book review website, and I’ve contributed to other websites and book review publications here and there. But some other outlets have eluded me. I’ve written two articles for our church magazines (one for the Ensign and one for the children’s Friend) that the magazines have accepted and paid me for, but which have yet to see actual publication. Over the course of probably 5 to 10 years, I frequently tried to pitch story ideas to magazines but never got one to bite (except for once, and that was at the very beginning of the journey and I didn’t realize what had just happened, so I somehow dropped the ball and never followed through: perhaps I’m being punished karma-wise for that…). So I’ve essentially stuck to newspapers and their online counterparts more recently.

And then there’s the book project. I started working on a nonfiction book about mothering when my now-almost-16-year-old was about 3. Over the course of a year, I would get an idea and rush to my computer in the same hurried manner as one who is nauseated would rush to a toilet. The book is a series of vignettes that tie together my observations of how my little girl saw the world and how I remember being as a child myself, and then connecting my realization that I could understand finally what my mother had always related to me about her feelings and experiences raising me. For me, raising this amazing preschooler and her infant sister, it was all revelatory. I hoped that perhaps the ways I phrased these insights and the positive message would resonate with other women, whether they were mothers or grandmothers.

Well, I’m not the type of person to write strictly for the pleasure of writing. I mean, I do love the process, but I’m a goal-oriented, type-A personality gal. I don’t just dive into the creative process and emerge refreshed and satisfied with my work; I feel it must have some sort of audience (Along the lines of the truism if a tree falls in the forest and no one hears it, does it make a sound?, one could say I think, if a writer puts pen to paper or fingers to keyboard and those words never see human eyes, did they ever exist?).  Someone must read my words.

So. Getting the words to an audience is the hard part. Writing is generally fun, occasionally frustrating, to be sure, but mostly a pleasant creative burst and satisfying work. Even editing is fun for me. But putting them in a forum where those sentences can be appreciated by other humans is a most unsatisfying business. It entails poring over websites, Writer’s Market tomes, and so on trying to find publishers or agents that will even consider my genre of writing. Then a perfect query letter that captures the essence of what I’ve tried to say in my book has to be crafted and sent to carefully vetted editors and agents. It entails a good number of trips to the post office. (I was on a first-name basis with some of the postal service workers in the office close to my house in Alabama while I was sending out packets in the push for publication of this book.)

Over the course of a year, I wrote the body of my grand oeuvre. Then I edited and reworked and re-edited. I changed the title. I overhauled. I went to a writers conference and had the manuscript looked at by a well-known agent. I reworked. I submitted countless query letters; I read books and articles and posts giving tips on how to craft the perfect query. In short, I was consumed by trying to get published.

There were a few bright spots in which a couple of agents requested more material after a query, but overall, I collected an astonishing number of rejection letters. They stuffed a file folder full. It was depressing, frustrating work into which I poured my whole soul and countless hours and stamps and got pretty much nowhere.

After those few years of work, I finally decided to self-publish. This was nearly 10 years ago, before the ebook, but at a time when you could easily self-publish using print on demand. But I had seen some “self-published” books that had gone through this quick and cheap process and I was not impressed with the result. They looked cheap and unprofessional, and if I was going to do this, I planned to do it right. So I decided to do it the “old-fashioned” way. I hired a book cover designer to create my cover; I investigated printers and finally selected one; I chose paper and materials. I edited and re-edited and did the layout myself. I ended up with a pretty nice-looking product. I chose to have 2000 copies printed because it wasn’t much different in cost to 1000.

I then researched how to market. I did the best I could to find outlets for my book and tried to snag a distributor, but that was just as difficult as finding a publisher! So I carried my book to some stores that were local and independent and were willing to consign the books or buy them outright. I did book signings in Birmingham and the Gulf Coast at cute indie stores. I set up a website and sent out tons of emails and put my book on Amazon.

I think I sold 200 copies. Now, I have boxes of books sitting in my garage in a neat stack in a far corner. I wonder if I should torch them. Or just recycle them.  Because honestly, when I go back and read my writing, I hate it. It sounds trite and goofy. It sounds like the cheesy, earnest books that somehow did get published that I generally disparage. Some people really did enjoy my book and my writing in general. But not nearly enough to empty all those boxes. I’d love to make room in my garage and clear those books out, but it just seems like I’d be throwing away money. Those boxes represent a few years’ worth of my life, of toil and sweat and (copious) tears, of unpaid work and investment of my husband’s hard-earned money. So I’ve kept them through one move to a different house in the same town and then a move all the way across the country. There they sit.

I’ve moved on. That project is behind me. I suppose I learned a lot from it. I’ve been able to help some friends who write and hope to get published as well; I’ve learned how the system works through my own trial and error and know how to help them. I am probably the harshest critic of my own work, as well, but from what I read, that’s not uncommon for any writer. I remember reading somewhere when J.K. Rowling published one of her Harry Potter books that she commented something like, “Well, it’s done, and it’s been sent to my editor, but I’m not really satisfied with it. I just know I’m not editing it anymore.” We as writers get sick of the same passage and still may not like it, but there comes a point we’re just done.

I’ve worked on a few other projects; I wrote a children’s book I thought was pretty clever and went through the whole process of query letters and rejections yet again (talk about soul-sucking and draining and depressing) with no result. My 9-year-old loves the story, though. I thought perhaps that was supposed to be my niche. Apparently not. I tried writing a young adult novel, and dedicated a month and about 70 pages to it and then took a break when my dad died. I never resumed because I just thought it was crap.

I’ve since decided my real talent is in writing nonfiction. I love to research and interview people. So I wrote a couple of articles for a large online news organization and have tried to do more research to make it a book. But that’s stalled because I haven’t found more people to interview.

And so goes the life of a frustrated writer. I absolutely must write. I must create. The urge to set ideas down on paper (or screen), to distill, to organize, to make something out of raw materials, is all-consuming. It just is who I am. I feel empty when I don’t write. The keyboard is an extension of my fingers and allows me to set in stone what are just swirling ideas in my consciousness. I don’t just enjoy writing; it is who I am. I’ve managed to write the whole time I’ve been a mother, despite interruptions and crazy schedules and the important needs of my family, because I wouldn’t feel whole if I didn’t.

So the process satisfies that part of my self, my personality. But the publishing is still something that eludes me. I desperately want to traditionally publish a real book. It is my end-all, be-all, pie-in-the-sky dream and goal. I’m almost 42 years old and I’m still stretching and striving toward it, shedding tears of frustration and wanting to hit walls with my fist (or head…) because it hasn’t happened yet. But I keep trying.

Here’s to goals. And dreams. And a toast to all those who are still striving for their own, whatever they may be. You writers, my fellow travelers, this tear’s for you.

Welcome to my inner world

My brain has always been full of ideas and interests. In high school, I participated in band, the school paper, the speech and drama team, and a variety of academic competitions. I took piano lessons. I enjoyed all of my classes, English and math and science. When I went to college, I decided to major in journalism because I enjoyed it so much, but also because I felt it would give me an opportunity to still investigate and learn about a variety of topics as I wrote about them (or edited what other people were writing). I still love to learn about almost anything, and reading and book reviewing has given me a great way to delve into tons of topics. I feel I’ve become somewhat specialized in a few areas, and I have a few particular interests I feel particularly passionate about enough to blog on. So this site will be the umbrella for the various topics I’d like to address, which will include, for the time being, books, beauty and self-image, mental health, home and family life, and then just whatever else I’d like to share. Feel free to contribute to the discussion by commenting.

Cathy Carmode Lim