But of course, I miss how it once was, not what it has now become.

So what drives me out here today of all days? It's been over a year since I posted.

Well, first, I actually have my "new" laptop on. That's a rare enough occurrence on the best of days. And I figured I ought to stop procrastinating and finally see if my Microsoft Word CD WILL install on this device. I used it to install it on my old laptop, which I have since handed down. But I vaguely recall reading something that the installation CDs would work on two devices. I'd been refusing to test if that's true because having that slim chance that Word will install is better than no chance. Better to never know than to know it's "no!"

But today was the day, I was going to test it. NaNoWriMo is coming, after all. Where I am supposed to write? Because the writing wants out. It brims over so that I'm handwriting journal entries at work, and I even wrote a page of notes on a story the other night. Sugoi!!

I can use my work device to write, but I can't get my writing off my work device. No access to outside email. No access to removable hardware to save my story to a flash drive or something. And work emails are now monitored/blocked for profanity, which caused me all sorts of trouble when I tried to forward home my story from last NaNoWriMo. (I don't have a potty mouth, I swear. Can't promise the same is true for all my characters, though.)

But anyway. No idea if the Word CD would work in this device or if the version of Word, should the CD work, would be current enough for this device.

Guess what? I don't have to worry about any of that. This computer doesn't have a CD drive.

*head--->desk*

Like, seriously?! Even my work laptop has a CD drive, and it's disabled for security reasons!

So, no idea what I'm going to do for NaNoWriMo. I can't abide Open Office. I can't afford to buy Word right now. Maybe there's some Cloud version/notepad I can use so that I don't have to email my story back and forth from work and home all the time. Except I'm sure I won't have access to such a system from my work device.

Any way you roll the die, it sucks.

I write this hasty post from Christian's computer. Because apparently, my laptop is so screwed up it's BEYOND the blue screen of death now. Just black, black, and more black.

Naturally, I decided spur-of-the-moment this morning at work that I WOULD do NaNoWriMo this year after all, despite feeling like I had no time to devote to it. I barely reached 850 words at work, and I was greatly looking forward to the kids going to bed, all the excitement and energy of a new story spurring my impatience. And then, lo! The hour comes, the kids behaved, I had time to devote to writing (a whole 1.5 hours before 9:00!), and I turn on my laptop...to blankness. The utter disappointment of blankness.

And it was working a scant week ago when I used it. That's what gets me. It sensed my enthusiasm and decided to call it kaput at just the right moment. So I'm struggling to write my next 800 words by hand, and my hands are sooooo slow these days. It sucks.

Can it really already be nearly the end of my maternity leave? Yikes: it flew by so much faster this time since I was so much busier.

I return to work September 12, and I return full-time, on a Monday. Not looking forward to working a full week right away. I better start getting used to waking up at 5:00 again and not taking any naps. Actually, this time around, I'm closer to that goal than when I was off with Caden. I only get a morning nap when Caden is with my folks anyway, which is only about 2-3 days a week. And today I opted to skip the nap to get some stuff done instead. But I have been feeding Ronan around 4:45 am and then going back to sleep until 6:00 or later. We'll see how I do when I just stay up from that...

We had our annual family reunion last weekend. We would have camped, but we still only have a two-person tent, which was cramped with Caden in it last year. So we stayed at the boat house this year. In general, everything went fine except bedtime. Ugh, I hate bedtime now. Caden puts up such a fight, and it takes 30-60 minutes (or longer) with singing, rocking, and straitjacketing him to get him to sleep. And when he's overtired, multiply that by the limits of our energy and patience. So we had been intending to stay two nights, but since Friday night went so badly, we packed it up and went home Saturday evening. To which we then endured an hour of crying before he fell asleep at last.

Thank goodness car rides still mostly put Ronan to sleep (the exception being if he's hungry).

The garden is looking as abandoned as it was last year. I had staked up the tomatoes in good time, feeling all proud of myself this year. But they have since toppled and need to be restaked, which I haven't done. So tomatoes are on the ground and I just look at them when I make it out to the garden about once a week and decide they're okay there. I actually picked some produce last night! Now I just have to make the time to can what I picked.

Oh, at the reunion, I got a lot of questions about writing. Which made me sad because I haven't been doing any of it. And one of my uncles even referenced Footprints on Water, which he's now nearly done reading at last (he retired and finally has time to read). THAT rather embarrassed me...I keep thinking of all the typos and grammatical errors and some of the more poorly written scenes. I need something new to share, something that isn't currently embarrassing me! And I have such stories in the wings; I just never finish them.

I'm now thinking of jumping back to my sci-fi version of my To the Well Organized Mind apocalyptic story because there are just way too many apocalyptic stories/shows out these days and mine needs something to set it apart. If only I had actually FINISHED it 10 YEARS ago when apocalyptic stories weren't so common! Seriously, I started it in college. And I have, unbelievably, been graduated from college nine years or so.

At least I have that Caden birth story being published in the Gifts anthology. I haven't been entirely fruitless!

I keep dreaming of a time when the kids will actually go to bed without a struggle and Ronan starts sleeping earlier in the evenings, so I actually might have time to do a hobby. Winter is coming, as is November. I might attempt NaNoWriMo this year. Might not win, but I want to at least try.

Ugh, how does this happen? I still have emails from October and even AUGUST that I haven't responded to. Not to mention comments and things.

One of these days...

I'm going to set aside time each week to do these things in small increments. Because otherwise it'll never happen.

Caden was born almost two weeks ago (6/9). No induction necessary! And no NICU, complications, or any surprises after birth. In all, Caden is healthier than I was daring to hope.

My gardens are full of weeds, the lawn needs mowing, we barely get to the grocery store, and sleep is now something that must be done in increments and attempted to be scheduled in.

But we have a beautiful baby boy, so it's all worth it.

Birth story will be forthcoming. Ugh, it's already so late (9:45), and I've had the laptop on since 7:00, intending to post here.

I had a doctor appointment today, and the doctor wanted to induce me. Caden is not growing as much as he should be, so she's concerned about leaving him in. But at the same time, she called the perinatal clinic and they discussed the risk of that versus the risk of his heart condition--the cardiologist wants Caden in as long as possible in the hopes that he'll be as big as possible when born since that will give him better odds with his heart condition.

So they settled on inducing me at 39 weeks at the latest (June 16-17), with extra monitoring until then. I'd already been having nonstress tests and biophysical profiles (ultrasounds looking for certain things) weekly for more than a month. Now I need to have BPPs twice a week and NSTs once a week still. If things don't look good, I'll have to be induced.

And even more awareness of his movements. If I haven't felt him move in awhile and can't get three movements in an hour, to the hospital.

So I'm really excited in some ways (we're for sure having a baby by Father's Day! Only two more weeks left to work! There's an actual "end date" to count down to!), and concerned in other ways. I'm more worried he'll be going straight to the NICU if he's already measuring small--will he have trouble breathing or get jaundice right away? And breastfeeding...already harder because of the Down syndrome diagnosis--will he even be able to do it at all?

Just taking things one day at a time, hoping Caden will show all the doctors how strong he is when he's born. The odds may be against him, but he's our fighter. He's already reached so many milestones: surviving in utero to second trimester, reaching 37 weeks and thus "full term," getting the approval from the cardiologist to have a vaginal birth and not expect a NICU stay for his heart, and being head down when his mama was born butt first!

Also, really hoping I'll go into labor before having to be induced. So far, 20% effaced and 2 centimeters dilated, which isn't much, but these things can change both really slowly and really quickly; never know which it'll be for me.

I am having trouble keeping track of everything.

Like: today, a genetic clinic called to schedule my new patient appointment, and I have no idea why they're calling or when it was decided I needed to do that.

Like: remembering what food to buy and prepare for the wedding shower this weekend at my house, the baby shower the following weekend, and the other baby shower at the end of May.

Like: explaining why we're giving birth at United versus St. John's. It made perfect sense at the time of the echocardiogram appointment, but was it really just because St. John's doesn't have a surgeon staffed 24/7 in case we need one? Or was there more to it?

Like: wondering who knows that Caden has Down syndrome and who doesn't (such as at work) and interpreting their questions and little statements about pregnancy/birth/parenthood accordingly. And then being angry at myself that I still think that way, dividing it into Who Knows and Who Doesn't Know.

Like: reminding myself what's going on in other peoples' lives so I don't become too self-absorbed in my own.

-------------------------------------------------------

I need to write about this entire experience. I can feel the itching in my soul, the pokes of memories frothing up in the background of my mind, wanting to be documented. But I don't feel like I have time to do that yet. So the pieces come out in fluttering fragments of confetti, an image here, a feeling there, a note to be sure I remember this experience.

I feel like I knew what I was doing and where I stood, up until the perinatal appointments. I was able to go to my midwife appointments without requesting off work; my pregnancy was progressing normally and naturally; I had the usual pre-mother worries, but nothing excessive. Certainly nothing like these numbers running around through my head: 25% increased risk of fetal loss/stillbirth...75% chance of hearing problems...15% increased risk for childhood leukemia...

Now it's hours' long appointments and three different doctors (geneticist, cardiologist, obstetrician) and who-knows-how-many-other-medical/other-staff (nurses, social workers, sonographers, birth advocate) and more appointments. And of course, none of them can be done outside work. I have to somehow try to juggle them into my work day and make up the time and waste my time off that I was saving up for my maternity leave.

Some days I really envy those parents who find out their child has Down syndrome at birth. I can't imagine the shock and difficulty in trying to mourn AND take care of a child. And yet, facing the shock and going through mourning without the comfort of the child--the physical presence and need and love from the child--the proof that the baby is still just our baby--is just as difficult.

Plus, even though I know it isn't necessarily true, I keep thinking that all those who find out the diagnosis at birth or even after birth obviously have such a healthy child that they had no reason to find out the diagnosis early. Like, no AVSD and heart surgery. No GI tract problems. No markers on the ultrasound to alarm anyone. No perinatal appointments and stress tests and echocardiograms every-other week. No worrying if their placenta is going to fail their baby and leave an immobile lump inside where a squirming, kicking Caden once was.

It's not true and it's not any easier, but today I am envying those parents all the same.

Some days I am on top and can face this Down syndrome business. Other days it kicks me back to square one.

Don't worry; I'm not as bad as this post may sound. I'm frazzled and stressed and envious, but I'm not giving up and I still love Caden with all my heart. I just want a maternity leave AND a pre-maternity leave to try to fit in everything that's happening right now.

I couldn't help myself: I planted my mums and some seedums outside today (plants I had kept indoors all winter to ensure they survived the winter). Weather is back to spring!

I was out of town over the weekend, visiting my grandma and aunt, and my tomato seedlings had doubled in size by the time I returned home! Amazing what 60 degree days and sunshine will do for plants.

Still seeing what survived the winter and the rabbits' insatiable hunger. So far, most things look to me returning. There are a few key plants that were demolished (gobbled by rabbits) and a few that haven't shown any signs of life yet. Hoping a few more will recover and/or wake up. I don't know why both my asters seem dead--they were fenced in from the rabbits all winter, and they are MN hardy. Hoping they're just behind in sprouting.

Crocuses are blooming something lovely, though!

Tomorrow is our next perinatal/echocardiogram appointment. I'm worried, naturally. Seeing Caden moving on the screen is always a thrill, as is the amazement of how evident his growth will be. But this is also the appointment where I am hoping to get the "final" answer on whether he has other medical issues that can often accompany Down syndrome.

Been doing a lot of research and reading. Joined DS communities and forums, and I'm keeping up with other people's experiences and stories. Spoke with my coworker whose daughter also has DS. I'm not nearly as ignorant as I was when we first received the diagnosis. In many ways, I'm not nearly as frightened because I know better what we're facing. But with knowledge also comes more specific--and realistic--concerns.

There are some kidney and intestinal problems that can accompany DS, and babies born with those medical conditions usually need surgery right from birth to correct the problem. I'm really, really hoping and praying that they won't see any signs of those issues tomorrow. The AVSD (heart issue) is already more than a poor baby should have to deal with.

I can't say that reading the odds make me feel any better, either. After all, our chances of having a baby with DS was 1% (or lower), and that still happened. And then the odds that he'd have a heart condition was 50%, and that happened. So even if the duodenal atresia (intestines twisted) chance is only about 12%, I can't take it lightly.

This visit will likely also give me a better idea of what my birth plan can and should be. I'm hoping that if Caden seems healthy overall except for the AVSD, I can still give birth the way I want at the hospital I want. There's just so much riding on what we find out tomorrow, like whether:

--I have higher amniotic fluid than last time (I was just over the high end last visit, one month ago)
--the doctors will want me to deliver early since there's a greater risk (about 22%) of fetal loss after 16 weeks/stillbirth when the baby has DS (see my cynical attitude toward stats above)
--whether my placenta still looks in good shape (since the placenta developed from the same chromosomes as Caden, it can age faster than typical placentas and stop supporting the baby)
--I can still have a natural, vaginal birth (high amniotic fluid leads to a host of other concerns, often meaning c-section)
--and as mentioned, where I can give birth

And, after all the medical stuff, we're meeting with a genetic counselor to get our future plans better figured out, like how to get Caden into early intervention programs (which start at 6 weeks old already!) and appropriate other programs helping with gross and fine motor skills, sign language, speech, etc. And how on earth to pay for everything.

I don't want to make a mistake and hold him back developmentally because I wasn't prepared enough.

So in that way, I'm glad we found out prenatally, instead of a surprise diagnosis at birth. But in other ways, I almost wish for the ignorance back, the blithe enjoyment of being pregnant without all these worries. And because if we didn't have any reason to know of Caden's diagnosis, he likely wouldn't have AVSD because his heart would look completely healthy.

So there's good and bad in everything. And we'll end this post by stating the obvious like that. Still need to check that I have all the questions gathered together for tomorrow.

Thank you all for the support and comments on the last couple entries. I can't express how important your support was and still is.

I'm probably not going to respond directly to those for a couple of reasons, including the fact that things have changed so quickly and so much since posting them that it's easier to just move forward instead of trying to explain/correct/reply.

Been doing a lot of research and reaching out. Turns out I work with a couple people whose daughters have DS, and one of them was/is a member of the Down Syndrome Association of MN, so I can reach out to both of them. The hospital we were referred to was ranked one of the best cardiovascular care hospitals. And one of my sisters who has long worked with special-ed children and volunteered with special-needs people just wrote me one of the most touching emails about what an honor it is to be bestowed with a baby with DS.

All in all, this little guy is really lucky. And we're really lucky to have him.

This extended metaphor really explains what it has felt like: http://www.dsamn.org/wp-content/uploads/2012/03/Welcome-to-Holland.pdf

One last thought on the subject: It really struck me the last couple days how much having a child is going to make me grow. I can't afford to be shy or passive or just rolling with the ride. I have a tiny life depending on me. I think finding out Caden has DS just made that sink in a lot faster. I am going to have to reach out to strangers, I'm going to have to step up and ask questions, I'm going to have to apply to all sorts of programs and fill out forms for assistance...and that stuff is hard for me. I still--STILL--freeze when the phone rings and hope I don't have to answer it. I still will linger behind to avoid someone who might talk to me when we're walking to the same place. It's stupid, but talking to most people will always be a chore, will always take an extra burst of energy I might not want to put forth.

If it were for myself, I could be lazy and apathetic and locked in my shell. But I can't be like that when it's for my child.

I think this is the last burst of winter now...I just have a feeling spring is going to start in earnest now. We didn't get much snow this past winter, so we're starting the season out dry already.

I planted my tomatoes and peppers, and the tomatoes at least are up!

I'm not pulling any punches. This post is dark and selfish and raw. I've been crying for the past two days, and this post will reveal the honest thoughts that I would never tell anyone face-to-face ever. But it's my journal, and if I can't be honest with myself (and by extension, you) I would be less than I am.

One day, this might comfort others in a similar situation.

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So yeah. I've reached the light at the end of the tunnel. Sleeping and dreams are not better than waking up to my reality. I am getting up and finally walking out of that dim room with the doctors surrounding me, netting me in with bad news.

Christian and I are even closer, and he's acting more like a daddy already. We just got our car seat and I'm excited to install it into our car. My appetite is returned, and I enjoy feeling Caden's squirms and kicks. Because it wasn't that I didn't love him ever; it was that I already loved him so much, and anything that would make his life harder is very upsetting to me. I'm his mother; I want him to have as easy a life as possible.

Most of all, I'm now prepared to hear Caden has Down syndrome, and I'm going to get as ready as possible beforehand so I can be the best mother I can be to my little boy.

Also, because we need to finally settle on the spelling of his name, I've relented and decided we'll go with the more traditional "Caden" spelling rather than "Caiden." Christian has been spelling it to his family the first way, while I've been telling my family the second, and in an attempt to make the name less confusing for strangers, I decided the traditional spelling would cause fewer question and pronunciation mishaps. (And I can still be as creative as I want with the names of my story characters, wahaha!)