Six Things I Did Today

1. Worked on My Manuscript. Somehow my YA manuscript, HAUNTED, wound up on the proverbial shelf. It is so near to completion, but took a back seat to the business side of publishing. It’s been so long since I’ve worked on it, I’ve had to reread it. Let’s just say: it needs some work before I can even continue writing.
2. Exercised. In order to stay healthy and all.
3. Bike Riding. The youngest and I took my oldest son to practice his bike riding in town (can’t do it in our subdivision because of the rocky/dirt roads). As a reward, we went to A&W for a root beer float.
4. Worked on a Guest Post. The wonderful Ali Cross invited me to guest post on her blog. I feel so humbled by the invite that it has taken me awhile to figure out what to write.
5. Worked on Standing and Walking. Not for me, but for my younger son. He was born with Trisomy 18, so he has significant gross motor delays. But he’s making wonderful strides with his standing and walking skills. I am so proud! You can visit his blog here.
6. Cleaned My Office. It’s a mess. Who can work on aforementioned manuscript when things are in disarray? Maybe tidying up will help organize my ideas, too.

My Son is Hosting Me Today

Today I am over at my son's blog, My Life with Zane (all right, it's kind of my blog, too), talking about my writing journey. He truly is one of the great blessings of my life. So even if you don't stop by as part of the tour, you should really check out what a cool kid he is!

And remember to enter for a chance to win a $20 Amazon gift card and a free ebook copy of FRACTURED. The giveaway ends at midnight on May 15th.

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The Daily Beast

My article about Zane and our journey with Trisomy 18 was published today at Newsweek's The Daily Beast.

Click Here for the Article



Trisomy 18

To be clear, this is not a political message of any sort. But I think it's absolutely incredible how Rick Santorum and his family have brought so much attention to Trisomy 18, a condition (not a disease as Soledad and Elizabeth call it in this video) that our youngest son, Zane, has. Click on the link below to see the CNN report or click here for Zane's blog.

CNN Video about Trisomy 18

Six Things I Did Today

1. Edited. I am half way through my adult contemporary novel, Fractured. I'm thinking I really missed my calling as a copy editor.
2. Listened to The Beatles. I was never a fan until my oldest son took an interest in their music. John, Paul, Ringo, and George are helping me edit this morning.
3. Revised. I’m working on a small collection of short stories. They need some help. Time to enlist the help of my new crit partners. I’m looking at you, Mark J
4. Tax Stuff. Time to gather and sort paperwork.
5. Doctor’s Appointment. Our youngest kiddo has had a cold for nine days. Now he’s poking at his ear. Normally, I wouldn’t be too concerned, but he has Trisomy 18 (yes, like Bella Santorum), so he can’t tell me what’s going on with him. Plus, his diagnosis makes him a little more susceptible to graver possibilities with illness. You can visit his website here.
6. Dinner with a Friend. Okay, so this hasn’t happened yet. But it will. I’m going into Durango for good conversation and sushi. And maybe a drink...or two.

Six Things I Did Today...

The regularly-scheduled "Six Things I Did Today..." will not appear on Memoirs of a Writer today due to my youngest son's surgery today (See My Life With Zane here for details and updates). Please return next Monday when it is scheduled to resume.

Thanks for visiting.

Six Things I Did Today...

1. Worked on a communication board. My youngest son is non-verbal. I took a class sometime last year called Every Move Counts. I had introduced the system to him: tangible items to stand for critical things that are part of his day. For example, a crayon stands for coloring; a tiny book stands for reading. But his ST switched him to line drawings at the end of the school year. He simply does not get that concept right now. Back to tangible items. I need a board, Velcro, and some doll-house-sized items to put the communication board together. Someday, I hope he will graduate to the iPad and use something like Proloquo2go.

2. Made an appointment. My younger son always seems to have someone within the medical profession he needs to visit. This time it is the audiologist. Appointment scheduled? Check.

3. Edited one of my manuscripts on the iPad. PDF Reader for the iPad is pretty cool. You can download PDF files (obvious, of course, because of the name). Not only can I read my manuscripts, but there is a place to take notes! This is probably a given for most technologically-advanced people. But I was quite thrilled by the discovery. Now my manuscripts can go everywhere with me.

4. Read. I am finishing the first Percy Jackson with my oldest and reading An Abundance of Katherines by John Green on my own. I also have Writing the Breakout Novel Workbook by Donald Maass on my nightstand. I am ready to jump back into the writing process now.

5. Waterfight. The boys and I went outside the shoot water at one another with the Nerf Tornado Strike Blaster. They cannot be outside without supervision because of the mountain lions and bears in our subdivision; a subdivision that borders BLM and National Forest Service land. Might as well make if fun for myself, as well. Plus, I get my dose of vitamin D for the day.

(Picture from the top of our subdivision)

 

6. Put video on YouTube. Of both my kiddos skiing (the youngest with Adaptive Sports Association). See Zane’s website here for the video. 

This month Christine from All About Mom Sense and Nadia from Musings...By Light of the Moon are hosting a May Mom Blog Hop to celebrate a whole month of motherhood, rather than the one, designated day. Today is my day to host.

My journey through motherhood has been a winding and sometimes meandering path through wide-reaching and diverse landscapes: beautiful mountain peaks in the distance; low valleys through a seemingly waterless and arid desert.

My husband and I enjoyed six years of outdoor adventure and travel together before pregnancy became a new fork on the trail of our lives. It was 2002 when I took a pregnancy test and watched the inky blue line come up positive. I was ready for the change in topography, ready for a new expedition. I changed my eating habits, watched the lima bean of a human—one with a beating heart—on a sonogram monitor, made plans, told everyone. And then at twelve weeks of pregnancy, on a rock climbing outing, I felt a surge of abdominal pain. I miscarried. And I had never felt such grief before. Few seemed to understand my pain.

Somehow, I found the legs to stand and get back on the path of life again. Three months later, I was once again pregnant. But the happiness did not last. I miscarried again. With the second miscarriage, I trudged forward. I was nearing completion of my Masters degree—in the middle of a student-teaching gig—I had to move forward. There was little time for grief.

Today I have two wonderful sons, Justin (6) who is gifted, creative, and vibrant.

And Zane (4) who is non-judgmental, pure, and joyous.

Both lie on opposite ends of a spectrum: one gifted; one with special needs.

My pregnancy and first year with Justin was like an easy movement through lush meadows of wildflowers, past percolating streams, and through verdant valleys. It teemed with life. But to appreciate the fullness in life, we have to know the emptiness, too.

In 2006, during a year-long road trip (see Our Life on the Road website here), I was pregnant again. My husband considered abandoning our trip only five days into it; there was no way to have a baby on the road. I convinced him we could. We continued on. In December, our younger son (Zane) was born. But things were not typical. Zane was shy of four pounds on his due date. He had low Apgar scores. He spent 17 days in the NICU on CPAP and monitors. They told us he would die. Five days later, they diagnosed with Trisomy 18, which is almost always fatal. Only 10 percent of children with it live to their first birthdays.

But Zane did not die. He continues to live—and thrive. We shower him with love. And in what we believed was a desolate place, we have found time to stop, look around, and see the beauty in having and loving him—in loving both of our boys. We have learned that life is meant to be appreciated—moment by moment. Because none of us is promised tomorrow.

Yes, motherhood has taken me through so many terrains. Many of which I never imagined for myself. But I wouldn’t trade it for anything.

Tomorrow, stop by and visit Elizabeth at Mother's Gilt for the next post in the blog hop.

My Life with Zane

In addition to this blog, I write another one about my younger son, called My Life with Zane. Five days after birth, Zane was diagnosed with Trisomy 18, a devastating chromosomal disorder with a high mortality rate. Most of us have two of the 18th chromosome. Zane has three. The stats go something like this: 50% die in utero. Of those born alive, 50% or so die within a few months. Less than 10% make it to their first birthday. Zane is now four.

The condition has some 130 associated anomalies with it, some of which are evident with Zane. Our little guy has been through quite a lot in his four years: surgery, near-death experiences, central apnea, and countless doctors’ appointments and therapies. He does not yet speak or walk. But he demonstrates a lot of love and happiness.

I started out maintaining a CaringBridge site for him, then eventually graduated to a blog. It is mainly there to keep friends and family apprised of his goings on. But it also serves to connect with others touched by Trisomy 18 and other disorders. I often find it is a good place to vent about the challenges of raising a child with global delays. Though any ranting is rarely about him. Because, I must say, Zane himself is quite a sweetheart. But more on him during the Z post.

Compassion

Yesterday we experienced the death of someone close to our hearts. A two-year-old girl named Brianna who, like Zane, was the unfortunate recipient of Trisomy 18 and, thus, a shorter life expectancy.

Death has a way of making me put things into perspective. I have spent the past week hyper-focused on menial tasks: paperwork and training associated with respite, submissions and rejections related to my writing, staying abreast of the latest in Destination Imagination. In the big picture, these things mean nothing. Really. I put my kids in second—maybe even third position this past week—to take care of this busy-ness when, in reality, those priorities weren’t very important.

My mom and I had a conversation the other day. We spoke of how, in the end, love is all that really matters. Not simply love for the immediate family, but love and compassion for everyone, everything. Money, success, tangible items—all meaningless when we take the time to view life as a whole. Not just life as we know it in 2009 or as human beings, but our life in the spiritual sense—our real life that exists outside our skin, our egos, our job descriptions.

So this weekend, I am going to put the writing, the handbooks, the internet aside and spend time with Zane (Jeff and Justin are camping together this weekend). I am going to appreciate the time I have with him. I am going to practice love. Not only with him, but toward the person who slams the door in my face, the woman who doesn’t return my phone calls, the guy who forgets to put on his turn signal (see earlier post). I’m not saying I’m going to give them a big hug and a smooch, but I am going to be nice—show compassion—even if they do not appear to be deserving of it. Because (in the end) we can’t take our money, our success, or our cubicles, but we can leave an imprint by showing and practicing love.

The R-Word

There seems to be wide appeal in our society to use the word “retard” to describe someone—or something—that is despicable and beneath standards. Recently, I have heard this word thrown around like it is in vogue. I don’t understand. Even when I was a kid, it never occurred to me to use the word to belittle someone. But perhaps that is because my parents raised me with a sense of kindness toward others, a sensibility to the fact that not everyone comes from a cookie-cutter mold—like the mold that formed an “intellectual” like Bill Maher. Much to my chagrin, I mention him because back in 2001, he compared “retarded children” to dogs and stated that “they’re not a regular person”.

Quite recently, I have heard the word tossed around by teens at an area ski resort who used it to describe someone’s poor boarding technique; a woman at a PEAK parent conference (PEAK is an organization that works to help parents and teachers advocate for children with disabilities) who was describing an uncooperative computer; Will Ferrell in his movie Semi Pro to get an audience laugh (instead of laughing, my husband and I turned the movie off); a writer describing Bush’s presidency; and Ben Stiller and Robert Downey Jr. who freely used the word “retard” in the movie Tropic Thunder (“You never go full retard”).

According the the Special Olympics website, “Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual disabilities, their families and friends. This word is just as cruel and offensive as any other slur”. Simply stated: this is hate language. And language defines our society and culture. Don’t think so? Make a list of all the derogatory words associated with women and people of ethnicity. Now do the same thing with men and white people. I’ll save you the time: there is a huge disparity. Additionally, people do not choose their gender, their ethnicity, or their conditions. Yet, they are discriminated against.

My youngest son, Zane, was born with Trisomy 18. Because of it, he is cognitively disabled. He likely will never speak; he will receive special-education services in school; and he will never be capable of abstract thought. Yet, he has positively impacted and touched countless lives—even of those who have never met him—because he has reintroduced people to the concepts of compassion and appreciation for life. While Zane may never earn a college degree, host a talk show, write a blog, or make a movie; he possesses the emotional intelligence of Ghandi. And, frankly, I think that says a lot. This is more than can be said for Bill Maher, whose emotional intelligence—by all appearances—seems quite stunted.

As a side note, you would think that a cognitively-advanced person such as Maher wouldn’t make a blatant grammatical error (shouldn’t he say “they’re not regular people?” instead of “they’re not a regular person”?). Maybe it’s time for him to brush up on English 101. Of course, you don’t hear me calling him names for a grammar faux pa that most middle-school students would catch.

(“Spread the Word to End the Word” is on March 31st. Special Olympics is calling for a national day of awareness for America to stop and think about their use of the R-word. Actor and activist John C. McGinley, from the show Scrubs, is making national media appearances on behalf of the campaign. Visit http://www.specialolympics.org/stw_resources.aspx and do your part to stop the hate).

Also, watch http://www.specialolympics.org/video_soeren.aspx. I only wish all people were as perceptive as he is!

Work from Home

Working from home is not all that it’s cracked up to be. Sure, initially it seems like an amazing thing: work in pajamas, shower at 1:00 pm, take as many breaks as you want as long as the work gets done. But for me, getting the work done is more than half the battle.

You see, I also care for my two sons, both of whom are under the age of five. It is nice that I do not have to send them to daycare. The expense of that alone would suck up my entire month’s salary. Plus, they can remain here with me in a safe and viral-and-bacteria-free environment.

However, as a writer, the creative juices flow best when there are few interruptions. This is hard to accomplish with the boys seemingly requiring my attention all day long. My oldest—who easily qualifies as an interpersonal type—does not like to play alone. When he is not at school two days a week, I am his playmate of choice. I sincerely enjoy spending time with him, but not for the 12 hours per day that he desires. On top of this, he also loves to talk. I cannot stress the word love enough. When asked if he can stop talking for a little while, he typically responds, “No, I can’t.” So I often find myself typing a sentence two, three, maybe four times before I can move on.

My two year old was born with Trisomy 18 (an extra copy of the 18th chromosome in every cell of his body). Because of his condition, he has a number of special needs: tube feedings four times a day, which takes up quite a lot of time; at least two appointment per week (sometimes more); and unresolved acid reflux, which means he often throws up a couple of times a day. I will be in the middle of a well-worded sentence, only to be immediately on my feet at the slightest indication of vomit. By the time I return, the well-turned phrase is long gone.

Now when you’re working from home, people tend to forget that you are working: calls from the spouse, friends ringing to chat, and the day-long expectation that you can drop everything at a moment’s notice to, say, help unload groceries or deal with an insurance issue in the middle of your work day.

And if that is not enough to completely detract from productivity, there are always the chores: dishes, laundry, general cleaning, bed making, bath giving, cooking, and mess picking up. Since I do not have an official full-time position for my at-home job, these duties fall under my job description, as well. It is amazing that I get any writing done at all. My most productive times fall between the hours of 10:00 pm and midnight when everyone is finally tucked safely into bed.

While it may sound as though I am complaining, I am not. Despite the challenge of being a work-from-home writer, I would not trade it for the alternatives: a desk job at an office or my kids being in daycare instead of with me. So I will continue to write during the late hours of the night in the hope that I get a decent book deal one of these days. That way, I can hire an assistant to deal with the phone calls, a housekeeper to do the chores, and a nanny to watch the boys for a few hours while I write. Uh huh...dream on!