It’s a New Year!

Anyone who regularly reads this blog knows just how crazy my last 12 – 18 months have been. Being told my son needed a bone marrow transplant pretty much threw everything askance since August of 2012. However, now the light is starting to show at the end of the tunnel. As of January 1, he was 8 months post transplant, and doing AMAZINGLY well. All of his doctors seem very pleased with his progress, and while we have a follow-up planned in Seattle, when we return from that, he should return to treatment with his regular hematologist for Shwachman-Diamond Syndrome.

Even though clinic appointments are far too regular still, with no end in sight until mid-late spring, that light at the end of the tunnel is starting to shine a glimmer on the future.

While I’m not going to guarantee I’ll be posting here regularly–even pre-transplant, it was beginning to be a gamble–I’ll post as much as I’m able to. But, this is what my goals are for this year where my writing is concerned:

  1. Write five days a week for at least an hour. To accomplish this, I’m going to try institutiting an early-morning writing time. Between appointments, and the fact I’m a stay-at-home mom (and my daughter will be starting homeschool Kindergarten sometime this year), early mornings are about the only time I can guarantee I’ll have uninterrupted time, five days a week. I instituted this early morning time on the 30th of December, and so far, I’ve gotten up four of the five days, and wrote/edited for three of the four.
  2. Publish. This one should go without saying, but I have a very aggressive goal to publish several short stories/novellas/novels this year. I’m not going to specify my exact number (partially because I’m not 100% certain of the exact number, but also because I don’t want to have life happen and not be able to follow through), but when I say it’s aggressive, it is. A body at rest tends to stay at rest, and a body in motion tends to stay in motion. I’m trying to put myself into motion so that it becomes just part of it that I’m constantly writing, editing, and publishing. Listening to the Self-Publishing Podcast since May of 2013, and reading “Write. Publish. Repeat.” (by the same guys behind SPP) in December really motivated me. I can do this. It just takes momentum to get started.
  3. Set a production schedule. The only way I can stay on track is to know what I expect myself to do. Listening to Joanna Penn’s The Creative Penn podcast (also started around the same time as I started listening to SPP–I think I learned of one from the other) has helped me see that a production schedule will help me stay on track and on purpose. I’m apt to take rabbit trails, and distractions are very easy, so knowing I’ve GOT to work on this project rather than that one may help keep me on track. I say may because who knows. 😉

I have other goals, like getting my feet in order where I can begin exercising again (I was told I had a very bad case of plantar fasciitis in my arches in December, so I haven’t been walking the dog at all) and sticking to a gluten-free diet (I’ve lost about 5 pounds since Thanksgiving just by going gluten-free, and 99% dairy free!) But, I’m really mostly focused the writing goals. Hopefully, on January 1, 2015, I’ll be able to look back at 2014 with a smile.

How about you? Do you have any new goals you want to accomplish in 2014, writing-related or not?

Until next time,

Liberty

P.S., if you haven’t done so already, be sure to pick up a copy of CSI Effect

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On Hospitals

Life sure does take the craziest paths sometimes.

For instance, I’ve only been admitted to the hospital twice–and both were avoidable occurrences (the births of my children.) I actually hate hospitals. When I was having my son, I remember vividly telling my doctor that I just wanted to go home–that’s how much I hate hospitals. My words were met with a laugh by all in the room, but I was dead serious.

So, you can imagine my consternation with the amount of time I’ve had to spend IN hospitals in the last two years. Yes, I understand they’re necessary. Yes, I understand that it’s been for the best that my son is there periodically, and that most of his doctors are based at hospitals.

Doesn’t stop my slight germaphobia.

I’m pondering this aspect of my personality more as the day gets closer that we’ll be taking our son out to Seattle for a bone marrow transplant. While we won’t be inpatient for 4 – 6 months, he and I will be in hospitals several times a week. How will that work, especially since I get a bit of anxiety when I’m in the hospital for a long time (i.e. more than two days)?

Fred Hutchinson Cancer Center, Seattle, Washington

I have decided that there are a few things I’m going to do while I’m in Seattle. Right now, since I’m mostly writer blocked (hence no blog posts for the last two months!) all of these are reading and crafty. I figure I’ll have a lot of downtime. Currently, my list of things includes: learning to knit socks, learning Tunisian-style crochet, possibly learning to hand quilt, reading all of the James Bond novels by Ian Fleming, and reading all of the Sherlock Holmes stories by Sir Arthur Conan Doyle (there was a freebie on Amazon.com a while back and I’ve already started it.) I’m hoping these activities, possibly coupled with writing some short or novel-length stories, will keep some of my anxiety at bay… and keep me from going bananas while being surrounded by doctors, nurses, and germs.

Until next time,

Always with the Questions…

“What do you write?”

My husband and I were in a doctor’s appointment with a doctor who may potentially perform our son’s bone marrow transplant. He had asked me if I would be the primary caregiver while in the hospital. “Yes,” I reply. “I’m a stay at home mom and a writer.”

That’s when I got THE QUESTION.

I’ve gotten it over the years, so the reply has started to just roll off my tongue.

“Murder mysteries, book reviews, and the occasional sci-fi,” I say with a smile.

The doctor and transplant coordinator laugh, and the doctor says, “Well maybe while you are here, you will get an idea on something to write!”

Sadly, I thought later on as we left for the parking garage, he’s probably not far from the truth, especially given my propensity for hating doctors and hospitals in general, and this situation in particular. And, I tend to have a running list in my head of things that will be useful down the road where stories are concerned.

But, then, you never know where that one little detail may come in handly. So, it’s good to stay on your toes.

So, will a scenario with a murdered doctor in a children’s hospital come up in my writing? You never know… Most of the time, I don’t always know where my brain is headed. 🙂

———————-

By the way, if you’re in the United States, don’t forget to vote tomorrow. And, if you’re a Republican, a new law passed by Congress gives you the right to vote twice, three times if you’re in Chicago. 😉 j/k

Until next time,

Liberty

How High Can You Jump?

So, things are moving a little faster than anticipated.  Last week, I stated we hoped to go out of town soon for my son’s treatment. Within TWO HOURS of posting last week’s blog, I had a call from the hospital. “Can you come see us next week?”

Next WEEK? Are you KIDDING ME? Do you realize we live 2,000 miles away????

It’s really amazing how things can come together in just a few days with less than 10 days warning. People have stepped up to help us out, which has been the biggest blessing of all. I’ve been truly stunned and humbled by the assistance we’ve received. It’s made a stressful time less-so.

Photo by Vox EFX

I’m a little anxious about the trip… mostly because I’ve read too many horror stories about the TSA, so the thought of going through security with 2 strong-willed kids, and a headstrong momma (me), I’m a bit afraid something will happen that will make the news.

Seeing the doctors, being on the plane, that doesn’t bother me. Being subjected to something that in my mind is a direct violation of my 4th Amendment rights (that’s the one about illegal search and seizures, folks) puts me on edge. Heck, with my background, I should be scared of being on an airplane. My dad has worked for one of the airplane manufacturers for most of my life in the department that fixes crashed airplanes, so I’ve seen more crash photos than the average person. (I am also more than aware that the most dangerous place for a plane is on the ground–not in the air. More damage is done by stupid ground people than pilots that have been drinking too much. Maybe sometime, I’ll tell you my favorite story that my dad repeated to me, about a “crash” on the ground…)

Really, I’m glad that we’re going out now rather than later. Waiting makes me nervous. But, it does make me concerned that they felt so strongly about his case that they felt the need to get us in this soon. Maybe it’s not as serious as I’m fearing, maybe they’re just being pro-active. (Please, please, please let this be the case!) Still, I’ll be glad when we’re back on the ground in good ol’ Kansas City…

Until next time,

Liberty

P.S.: I’ve received a lot of questions about how people can support us during this time. Prayers are always welcome! But, additionally, if you’re between 18 & 44 and in generally good health, you can get tested to become a potential donor. Search for a donor drive at this link, request a test kit here, and maybe even consider hosting a donor drive! Marrow.org has additional information, just surf the site and see what’s there! Also, if you know a woman about to have a baby, urge her to donate her umbilical cord blood for use in transplants (and for research.) — LS

Life Goes On

Life goes on.

This is the lesson I got in the last week.

I also got this lesson: don’t count your chickens before they hatch.

What am I talking about? Is my son’s health okay? What’s going on?

Well, here’s the long and the short of it: life continues happening even in the midst of trials. And it can make it completely crazy, but it can also give you bright spots during the times you’re in the deepest, darkest canyon.

Take for example what’s happened in the last few weeks. If you read one of my last blog posts, you know my son’s been marked for a bone marrow transplant. Not the most fun thing, especially when the two-year survival rate for someone with SDS is somewhere between 45 and 60%, depending on what method and drugs are used to prep for transplant. For this reason, my husband and I decided to get a second opinion, since we want to be absolutely sure that this is the road we’ll go down.

Which led to a flurry of activity, and ended with me having a lengthy conversation with one of the doctors who is probably in the top three in the nation, if not the world, with experience with Shwachman Diamond kids. Of course, we can’t stay in Kansas City to get our second opinion. After speaking with this doctor, which I’m going to call Dr. S (because her name is too long and difficult to pronounce!), it was decided we’ll be heading out of town, we know not when, for that second opinion. Hopefully, sometime in the next few weeks to a couple of months.

So, while we’re waiting on the answers, we find out our daughter is NOT a match for her brother, which means we have to go to the national registries. Mixed feelings about that. Glad she doesn’t have to go through that, but at the same time, now we don’t know whether he’ll have a match.

Enter: a bright spot.

You know how a few weeks ago, I said I was giving up on “Homebody”? That I’d decided it was time to tell it goodbye, thanks for the memories, all that? (Here comes the “don’t count your chickens” part.) Yeah, I may have spoken too soon.

With everything going on, I hadn’t checked my business e-mail in 6 weeks or so. Last week, I decided I’d better do that because I *thought* I may have a short story out somewhere and probably should see if I’d received any mail on that.

Well, I didn’t have anything out on my short.

But, I did have a reply from an agent I’d sent “Homebody” to back in–get this–February. FEBRUARY! This was a query only agent, which means I didn’t send anything to them besides a letter. I saw their e-mail in my spam box, and thought, “Oh, here’s another rejection.” But I opened it anyway.

First, there was an apology for the long time in getting back to me. But then I read these words: I’d look at the first 75 pages and synopsis after 8/20 if you don’t have an agent.

Did I read that right? I got a request for a partial?

HOW COOL IS THAT?!

So, the day I actually read this, I went around the rest of the day with a stupid grin on my face, unable to do anything. After that, it’s been a mad rush–is everything ready? I did some changes to the opening scene–does it read okay? And about that synopsis, I never was happy with it, so let’s rewrite that on the fly.

And, I have to admit: I haven’t sent in anything yet. But, I’m close to doing it. Hopefully later today. I’m nervous, excited, and at the same time, if this is meant to be, let it happen. Maybe I wrote off this book too soon. If not, maybe I’ll get some decent feedback, and perhaps, the agent would be willing to look at another project when I’ve got them done. We’ll have to see.

Funny thing is, I looked at the day they sent the e-mail. It was the day before my son’s biopsies. I find that kind of meaningful, but that’s just me.

In closing, I thought I’d share something that proved especially meaningful last night. My husband and I have seen “The Fellowship of the Ring” dozens of times. We saw it in the theater when we were dating. But, we hadn’t watched it in a while due to the demands of parenting. Watching an episode or two of “Castle” or “Stargate” in the evenings is all we have time or energy for, let alone a 3 hour movie!

Near the closing of the movie, Frodo says, “I wish the ring had never come to me.”
Gandalf replies, and I’m paraphrasing, “So do all who live in perilous times.”

While I wouldn’t say my life is perilous, at least not at the moment, it hit me. I could really get Frodo in that instant. Since we found out our boy has SDS, I’ve prayed, “Don’t let him need a BMT. Don’t let him have cancer. I can handle diabetes, but please don’t let him ever have to face cancer treatment.” Not much different than Frodo’s lament.

Oh well. I have a request for a partial, and while it doesn’t make my troubles go away, it does make them a lot more bearable.

Life certainly goes on.

Until next time,

Liberty

Topsy-Turvy

The last ten days have been anything but normal. And, the news TMOTH and I got last week has definitely turned our world on its ear.

Our son is headed for bone marrow transplant.

When I got the news a week ago, I fell apart. My world has been rocked. How could this bubbly, hyperactive, absolutely most adorable little boy in the world need such a risky procedure?

But, at this point, he does. We’ve got a lot of steps to go through before the ultimate decision will be made. And, we have to find a donor–it’s not certain any of his immediate family will be a match. The likelihood is 25% for his sister, and 2% for both TMOTH and me–29% chance that one of the three of us will match.

The dust is just starting to settle and I can think straight again after getting the call last Tuesday. But most of my energy is being spent trying to figure out what’s next, and looking down the road to the next few stages of treatment. Still hoping that when we go in to do another biopsy prior to transplant that the numbers have changed and we can hold off. I’d rather deal with biopsies every 3, 6, or 12 months than transplant.

I don’t know what this means for my blog, or even my writing in general. I know I’ll need to write to deal with the stress. And it seems like I’ve had three major things happen in just the last few weeks: first, deciding it was time to say goodbye to “Homebody” and move on; second, a personal decision to work on something I’d been struggling with for a long time; now, this. All in a matter of just a few weeks.

I’ll check in when I can, try to post as I’m inspired or led… and this blog may turn into more of a journal of our journey, at least for a while.

Thank you, loyal readers, for any prayer you happen to send my family’s direction.

PS: If you should feel so led, please consider becoming a marrow donor. It’s an easy, painless process to get on the registry (although there is a small fee unless it’s associated with a donor drive). Please check out Marrow.org for more information. — LS

Two Years… and Counting…

Two years ago, my house was blessed to have the most precious (and I’m not biased in any way) little boy come into our home. His labor and delivery were brief (2 hours of labor, 3 minutes for delivery).

And when I saw him for the first time, I was stunned he was a boy (I’d really thought we were having a girl.) But, I thought he was perfect in every way.

I still cling to that thought every now and then. Now, I know he’s not perfect (he’s got the ornery streak to prove it!) And, I know he’ll never be the same as other little boys–not just because God made him different, but because of what’s different about him at a cellular level.

When I was growing up, I can’t remember having birthday parties. Sure, I had a girlfriend over most every birthday, or went to spend the week of my birthday (which strangely almost always fell over spring break) at my grandparent’s house in the Ozark’s of Missouri. But, I never really had parties that I can remember.

Alexander

With Alexander, we don’t know how many years we’re going to get with him. He may grow up, have a family, and get to raise his own children, see his grandchildren.

I pray this is the case.

But, I also am all too aware that every birthday he has may be his last one. And, as a mother, this chokes me up. As I’m writing this, I’m crying, even though I can hear him and his sister in the next room, playing.

You see, his condition, Shwachman-Diamond Syndrome (SDS), puts him at a high risk of developing leukemia. I’ve talked about that before. Right now, until he has his next biopsy next month, we know he’s at an even more elevated risk.

And, should it come to it, and he requires a bone marrow transplant, I know he’s got but a 50/50 shot. We saw it with another SDS family just in the last few weeks. Their son had a transplant, and sadly passed away a few days later. He wasn’t much older than our little guy.

It scares me, more than I thought anything ever could.

So, on Saturday over the weekend, Alexander turned two. And, we celebrated, as we expect we’ll be doing not just with him next year, but with his older sister when she turns four in October.

While both of them can drive me nuts, and some days I wonder if it’s really worth it, something in the back of my mind reminds me that all of our days are numbered. Only God knows how many days we get. And even though writing my stories are important to me, blogging and social networking are fun and even important tools as I try to get the engine going on my writing career, there’s things more important.

Until next time,

Liberty

P.S. — I should have mentioned this when it posted, but I guest blogged over on Linda Yezak‘s site about 10 days ago. Should you get a chance, go check it out.