Tough Conversations

Welcome to the March 2013 Carnival of Natural Parenting: Tough Conversations
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have spoken up about how they discuss complex topics with their children. Please read to the end to find a list of links to the other carnival participants.

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In some respects, every conversation with my children is tough. Acorn, who will turn 5 this summer and start kindergarten in the fall, says less than 2 dozen words. While we believe he understands everything we say, it’s hard to tell if he gets the finer points of things, because he can’t ask questions or tell us when it’s not clear. Leaf will be 2 this May, and again, says very little. We’re hopeful that her road to speech will be less challenging than Acorn’s, but no one can predict that right now.

We anticipate that there will be many tough conversations over the next few years, as Acorn and Leaf begin to realize that they *are* different from other kids – that most kids don’t have the scars they have, that their baby pictures don’t include incubators and wires and tubes, that most kids don’t have nurses who are their best friends. And I suspect that the best thing for them when we reach that point will be to talk about how strong they are – how much they’ve already overcome, and how much more they can do if they set their minds to it. Our feeling here is that honesty is the best option – if we are not honest with them about their history, about things that are documented in photos and blog posts and medical notes, how can they trust us?

I hope that it will help them to be living in the very diverse area we live in – so many different people, from different cultures and backgrounds, and attending an elementary school where all differences are celebrated. But only time will tell, as each of my children processes these things in their own way.

Another set of tough conversations in our future will likely revolve around death. Because of my kids’ medical history, we know a lot of kids with complicated medical problems. And unfortunately that means we know a lot of kids who will never grow up to be adults. I think that we need to find a way to build a meaningful memorial of our friends into our Samhain celebrations, but we have been so busy just surviving the last few winters that not much has gotten done. Having that celebration as a central way to talk about death will help them through the years, as we add more friends to our list of those who have passed.

I’d like to think that getting through those big things now will make other tough conversations less challenging as the kids get older – we’ll already have built a foundation where open communication and trust are a normal part of our conversations. In the grand scheme of things, talking about injustice and sex and so many other things seem less difficult to me compared to what we’ve already faced.

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Visit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be updated by afternoon March 12 with all the carnival links.)

• A Difficult Conversation — Kellie at Our Mindful Life is keeping her mouth shut about a difficult topic.
• Discussing Sexuality and Objectification With Your Child — At Authentic Parenting, Laura is puzzled at how to discuss sexuality and objectification with her 4-year-old.
• Tough Conversations — Kadiera at Our Little Acorn knows there are difficult topics to work through with her children in the future, but right now, every conversation is a challenge with a nonverbal child.
• Real Talk — Jennifer at Hybrid Rasta Mama explains why there are no conversation topics that are off limits with her daughter, and how she ensures that tough conversations are approached in a developmentally appropriate manner.
• From blow jobs to boob jobs and lots of sex inbetween — Mrs Green talks candidly about boob jobs and blow jobs…
• When Together Doesn't Work — Ashley at Domestic Chaos discusses the various conversations her family has had in the early stages of separation.
• Talking To Children About Death — Luschka at Diary of a First Child is currently dealing with the terminal illness of her mother. In this post she shares how she's explained it to her toddler, and some of the things she's learned along the way.
• Teaching 9-1-1 To Kids — Kerry at City Kids Homeschooling talks about the importance of using practical, age-appropriate emergency scenarios as a springboard for 9-1-1 conversations.
• Preschool Peer Pressure — Lactating Girl struggles to explain to her preschooler why friends sometimes aren't so friendly.
• Frank Talk — Rosemary at Rosmarinus Officinalis unpacks a few conversations about sexuality that she's had with her 2-year-old daughter, and her motivation for having so many frank discussions.
• When simple becomes tough — A natural mum manages oppositional defiance in a toddler at Ursula Ciller's Blog.
• How Babies are Born: a conversation with my daughter — Justine at The Lone Home Ranger tries to expand her daughter's horizons while treading lightly through the waters of pre-K social order.
• Difficult Questions & Lies: 4 Reasons to Tell The Truth — Ariadne of Positive Parenting Connection shares the potential impact that telling lies instead of taking the time to answer difficult questions can have on the parent-child relationship.
• Parenting Challenges--when someone dies — Survivor at Surviving Mexico writes about talking to her child about death and the cultural challenges involved in living in a predominantly Catholic nation.
• Daddy Died — Breaking the news to your children that their father passed away is tough. Erica at ChildOrganics shares her story.
• Openness — sustainablemum prepares herself for the day when she has to tell her children that a close relative has died.
• Embracing Individuality — At Living Peacefully with Children, Mandy addressed a difficult question in public with directness and honesty.
• Making the scary or different okay — Although she tries to listen more than she talks about tough topics, Jessica Claire of Crunchy-Chewy Mama also values discussing them with her children to soften the blow they might cause when they hit closer to home.
• Talking to My Child About Going Gluten Free — When Dionna at Code Name: Mama concluded that her family would benefit from eliminating gluten from their diet, she came up with a plan to persuade her gluten-loving son to find peace with the change. This is how they turned the transition to a gluten-free lifestyle into an adventure rather than a hardship.
• How Does Your Family Explain Differences and Approach Diversity? — How do you and your family approach diversity? Gretchen of That Mama Gretchen shares her thoughts at Natural Parents Network and would like to hear from readers.
• Discussing Difficult Topics with Kids: What’s Worked for Me — Deb Chitwood at Living Montessori Now shares parenting practices that enabled discussions of difficult topics with her (now-adult) children to be positive experiences.
• Tough Conversations — Get some pointers from Jorje of Momma Jorje on important factors to keep in mind when broaching tough topics with kids.
• Protect your kids from sneaky people — Lauren at Hobo Mama has cautioned her son against trusting people who'd want to hurt him — and hopes the lessons have sunk in.
• Mommy, What Does the Bible Say? — Amy at Me, Mothering, and Making it All Work works through how to answer a question from her 4-year-old that doesn't have a simple answer.
• When All You Want for Them is Love: Adoption, Abandonment, and Honoring the Truth — Melissa at White Noise talks about balancing truth and love when telling her son his adoption story.

Life in Two Places

We have now spent three weeks driving 51 miles back and forth to the hospital pretty much every day. We're getting closer to the end on that, but we're not there yet, and so it continues. My online time has been cut considerably, between driving and trying to keep Acorn occupied in our corner of the PICU - no doors, no walls, so I can't just turn him loose.

The dishes are never caught up. The laundry is never caught up. There's never enough time for Leaf, and never enough time for Acorn, and never enough time for me or for spouse and I as a couple.

Which is not to say I'm not writing - that's basically mandatory for sanity. It just means that writing is in fits and starts with interruptions, and that other things are suffering because of it.

Tomorrow is our meeting with the vent team to get Leaf out of the PICU and onto the vent unit; after that, they're anticipating a week, or maybe a bit more, before we can go home - it's just a matter of lining everything up.

This is good....we're almost out of frozen breastmilk, and I'm not keeping up with her by pumping, particularly when I don't get the good long skin to skin snuggle sessions we had in the NICU. Hopefully we can track down enough donor milk once she's home (the hospital forbids it) to keep her off formula for a bit longer; if not we'll supplement with some crazy high-cal formula that the hospital has lined up for us.

She's probably coming home on continuous feeds. At the rate we're going, we'll need a second feeding pump, as we switched to j-tube feeds (a feeding tube that is inserted past her stomach, so food completely bypasses it) because of medication induced nausea and slowed gastric emptying, and transitioning back to all g-tube feeds (into the stomach) is a very slow process for Leaf. After we get all the way to continuous g-tube feeds, we'll also have a slow transition back to bolus feeds (ie, X ounces in 15 minutes or so every few hours, rather than a continuous drip), because she's been on them so long.

And now it's late, and I should sleep. A friend is keeping Acorn tomorrow so we can go to our meeting - Acorn has the sniffles, and the hospital will not let him in that way, so it's find a sitter or one of us skips the meeting, and we likely lose our spot on the vent floor, because you have to have the meeting, and both parents need to be there. Sigh.

Worst Mom Award

I've spent the last few days feeling like the worst mom ever.

Early last week, Acorn got hand foot and mouth disease from daycare. We've been paranoid about handwashing since he started there, but Leaf got it anyway.

Acorn's been cranky, and it seems like the rash is painful at times. He's had trouble sleeping. But other than that, no real issues.

Leaf, on the other hand, seems extra fussy....and won't eat orally (or at least, wouldn't until Saturday morning). Which is a problem, since we've only been working on it a couple of weeks and she was just starting to get the hang of it.

Now, HFM is extremely contagious - so contagious that doctors don't generally recommend keeping kids out of daycare when diagnosed, because they assume the other kids have already been exposed. But I still feel like it's my fault all around that my kids are sick.

I was ambivalent about daycare to begin with. I wanted a nanny, and then was unsuccessful at finding one, and my spouse was unhappy about the cost of a nanny. I was the mom who went back to work when Acorn was in the NICU because we needed insurance and we needed the money.....and I was the mom who wasn't willing to give up things like music lessons for my kids because there wasn't money (which is what happened when I was a kid). So it's my fault he needed care to begin with.

I also felt like there's something we missed in washing or sterilizing or something that resulted in transferring germs from Acorn to Leaf, since he generally stays in his stroller when we visit, and since we all scrub when we enter the NICU.

After Acorn's birth, I needed to go back to work. I needed the mental stability of having responsibilities other than the NICU - I needed that anchor in reality. I was depressed, and running away from my issues (namely, the NICU) seemed like a good idea.

This time around, things are eerily similar at the hospital, but dramatically different at home. Work isn't a helpful anchor, it's a distraction in the way of doing what is important. And that makes a heck of a lot of difference in the way it feels to leave Acorn in someone else's care, much less having to leave Leaf in someone's care when she leaves the NICU.

I'm sure both Acorn and Leaf will be feeling better in a few days - their rashes are already improving, and Acorn is going back to daycare this afternoon. Leaf and I had our best nursing session ever yesterday morning. 

But right now, it doesn't leave me feeling any better about heading back to work today.

sigh

I find myself in this odd in-between space, and I'm not sure what to do with it. Clearly, I'm overwhelmed. Clearly there are bad days. Clearly there are things falling off the table. But I'm not depressed (and my therapist agrees).

For me, true depression steals away my words for weeks - even months - on end. And that's not where I am right now. For what it's worth, antidepressants did that too, so I'm going to try to avoid them for the foreseeable future (and since my therapist thinks I'm not really depressed, they're not really the right approach anyway). Clearly, anything that changes such a fundamental part of me is a problem - normally if I don't write, I eventually feel like words will come pouring out of my ears, and when I'm depressed, there are simply no words, and having tried it before, that's  no way to live.

However....this week I go back to work. This week I give up another 9+ hours a day out of days that are already too full.

And all the things not done sit heavy on my mind - some little, some big, but none likely to be handled anytime soon. I think we're mostly hunkering down and waiting for the storm to pass.

a week of the same

It's been a whole week since my last update. You'd think that'd mean I had something to report, but no...only that Leaf is now in actual Pampers preemie sized diapers (with the smell that will always remind me of the NICU), and still growing (on her own little curve, below 10th percentile, when she was 10th percentile at birth, but then fell behind in trying to regain her birth weight).

We're all frustrated - even the docs. It sounds like there will be much more discussion this week (after several weeks of her being a major topic at their conferences), because the options are limited - try diuretics again and keep a closer watch on her electrolytes, put her back on the vent to try to open up the little air sacs, go in and ligate her PDA, do nothing and wait and see....all have their risks.

For all that they keep reminding me that she's not Acorn, they're now starting to see the ways that she's so much like him - so obviously his sister. And unfortunately, the things they see are not the nose they both share, or their amazingly long toes...it's that Acorn was so so hard to get off the vent, and then even worse to get off CPAP, and Leaf is just as hard.

Tomorrow it's off to the surgeon to get Acorn's g-tube looked at, and to discuss (and hopefully complete) removal. Hopefully I'll get up early enough to fill his wading pool so he can go out and splash to his heart's content when he gets up from his nap.

Tonight he's cranky and skittish. Not entirely sure what happened with his nurse today while we were gone. I hate this part of having nurses.

As for me, I'm hanging in here. Some days are better than others (shoot, some hours are better than others). Pumping is going better than expected, which helps, but it's still time consuming and draining. In my copious spare time (hahahahaha) I'm working on a little project, which I'll be saying more about in the weeks to come.

And now, off to get back to writing on that project, and listening to the fireworks in the distance, and hoping that Acorn actually goes to sleep finally.

A Tale of Two Births - Part 1

So much to say....and so little time to write. Thus, you're getting bits and pieces. This bit went in a different direction than I intended, but going with the flow right now is where I need to be...

*****

A funny thing happened after Leaf was born when they sent me from labor and delivery to "mother-baby" (that floor that used to be called the maternity ward, where they keep moms and their new babies for a couple days or so to make sure nothing obvious is wrong) - I ended up in the same room I had when Acorn was born.

Talk about deja vu. So many memories came flooding back.

It turns out I got the same room because they tend to put NICU moms on one end of the hall if they can help it - supposedly to protect us from all the normal take-home babies, but it's still hard to be in a hallway of people celebrating and going home with their new bundles of joy.

Instead, though, what I got was memories of Acorn.

I spent 4 days in labor and delivery because I was so sick and my blood pressure was so high. Not quite bad enough to go to ICU, but not good enough to go to mother-baby either. I had the beginnings of liver failure, and the beginnings of kidney failure, and every needle stick left huge bruises, as did blood pressure cuffs, and just about anything else that touched me.

I saw him once in that 4 days, late on day 3. It was the hardest 4 days of my life.

My mother had flown up Thursday when she heard they were inducing labor. Friday Acorn was born. Sunday my father flew in. My in-laws were there of course, as were a couple of close friends. Everyone saw Acorn before I did. Everyone argued with us about not telling them what we were naming "her" because all the ultrasounds had said Acorn was a girl, and the doctors hadn't said otherwise during the birth.

When I finally moved to mother-baby, it didn't get any better. I spent one night there and finally got our birth certificate paperwork taken care of, naming what we thought was our little girl. I'd seen Acorn twice more when one of the doctors came to tell us that afternoon that while our ultrasounds had all said girl, truthfully, they didn't know if Acorn was a boy or a girl.

At that point, Acorn was on an oscillating ventilator - one step down from ECMO, and ECMO is basically the last thing they can do before letting a child die.

I know we floored the doc with our responses, but we have a close friend who is transgendered, and I have a long time (but not overly close anymore) friend who is intersexed. It didn't really much matter to us either way, but our first big concern was the grandparents, most of whom are not as accepting as we are....and my second concern was the birth certificate, as stupid as that sounds. It was one of the few things in my control, and I knew I needed it to get Acorn added to our insurance, and clearly that was important, because OMG was this turning into an expensive hospital visit.

After the doc left, though, I fell apart. It was just too much all at the same time. Eventually my husband left so I could sleep, and he asked the nurse to screen visitors for me (because our parents were randomly showing up, and I was not at all ready to explain this situation to any of them)....and then he called another close friend of mine. I had already texted that friend, and as is his way, he eventually got the major details out of me. He decided to stop by on his way home from work.

I remember sitting there sobbing, trying to talk about it all, and it felt like I was staring into an abyss. He later told me that it was one of the hardest conversations he'd ever had with me - that he wasn't sure that there was any way to keep me from losing myself. There was a point that afternoon where the thought crossed my mind that if either Acorn or I didn't survive, maybe that wouldn't be such a bad thing, as messy as this all seemed to be getting - not that it would be less messy that way, just that it might be less drama in the long run.

At any rate....I slept. We spent some time with Acorn and changed his diaper for the first time so we could see what all the fuss was about (and now that I've seen Leaf's genitals, I guess I can understand why there was confusion, even though I have yet to see a "normal" micropreemie boy). I slept more, on the advice of my nurse. And in the morning, things were different. Still complicated, but manageable.

Sure, there was depression, and grief, and a lot to process, but I am not sure I really needed the antidepressants that I was put on the day after Acorn's birth. They sure as hell didn't help in terms of actually processing all of it - that ended up being delayed until long after he was finally home.

*****

Leaf is so much different. She's tiny - that's the same - but not nearly as fragile looking as Acorn was at this point. Her respiratory status is better than his was on his due date. She got to wear a shirt today, for pete's sake, which Acorn didn't for weeks and weeks.

I've been approached by the post-partum social worker about the risks of post-partum depression. And by the NICU social worker. And by the NICU parenting program coordinator. The fact that I'm seeing a therapist seems to have made all of them feel better; my therapist thinks that's pretty funny all by itself.

I'm not the person I was then (and even then, I was not the person I was in college, at the point where I actually was severely depressed & suicidal). Leaf is not Acorn, and while she has her issues....they are no more complicated than a lot of what we're already managing, it's just a matter of getting the hang of a few more schedule complications, and since our schedules are less complicated now than a year ago, it's not like that should be impossible either.

Updates and random thoughts

I've been terrible at writing lately. Mostly, it's because everything here is chaos...and part of the chaos right now includes a barely functioning computer.

Thing is, I need to write. Need to process everything that's gone on recently. Need to let the tears flow that I've been holding back for weeks - and that is such an overwhelming idea that I don't even know where to start.

So I guess let's start with right now.

Miss Leaf will be 2 weeks old tomorrow. She's doing well. She's getting some breastmilk, and doing a lot of normal baby things (pee, poop, cry, sleep), she just does them in a plastic box, with lots of tubes taped to her face.


I'm finally home - a week as of tomorrow. Physically, I'm easily worn out, but haven't really even taken much ibuprofen in the last 5 or 6 days, because it's not an issue of pain. I'm spending a lot of time with my breastpump (it's a love-hate relationship....mostly hate, though). Pumping is going ok; I'm desperately hoping that we can start actual breastfeeding in a couple of weeks though, because pumping did not work out so well with Acorn.

Emotionally....well, the "post partum adjustment" social worker did tell me that it was normal to be extra emotional the first 3 weeks or so post partum, and we've definitely hit that extra emotional patch.

It doesn't help that a friend passed away last week from a complication of childbirth.

Anyway. It's time for sleep, so I give up for now.

Random Thursday Thoughts

I am officially more pregnant than I've ever been before (though, if you're going by baby size, that's been true for several weeks). It's still really odd.

The longer I'm here, the more twitchy I get about things - I'm twitchy about ultrasound gel. I'm narrowing down food choices. Showers are a requirement, not just a nice treat. I'm irritated by people who are acting like idiots. And on and on. That combination suggests depression, or at least a problem coping....but I'm still writing, so it must not be that bad yet, because when I'm actually depressed, I stop writing. So that leaves me confused - is this just decompressing? Or what? My former therapist has agreed to take me back as a client and to make hospital calls, but her father-in-law is dying, 4 hours north of here, so arranging an appointment has been challenging.

Acorn has really gotten creative with his climbing - the sink, the kitchen counter, the dining room table (with an attempt at hanging from the chandellier), and anything else available. This week he tried to use the high chair and the potty chair and several toys to help him get onto a bookshelf; when those were taken away, he started trying to use a board book....set up on end, covers bent back, pages splayed around in a star shape - short of making a stack of books, it's actually the strongest way to stand a book, in terms of load capacity, and it probably would have worked. And we had early intervention folks who thought not speaking meant he wasn't smart. ha!

Tomorrow is my 11th wedding anniversary. My husband is going to bring me  a nice dinner; certainly not the way or place I'd prefer to celebrate our anniversary, but compared to some years, this still counts as good - it involves us having a calm evening together, it doesn't involve a funeral, so that's an improvement.

The tweak to my BP meds is both good and bad - I'm watching the BP numbers creep up day after day, which is bad, but it helps a little bit with the sleepiness and brain fog. I guess we'll see.

On Moms and Mental Health

As the title might suggest, this post has mention of possibly triggering things like post partum depression (PPD), suicidal thoughts, and the like. Read carefully, friends.

Because I can't get this twisted around the way I want without upsetting myself, and being upset (a) makes my blood pressure go up, and (b) has already once led to the subject of whether or not I need anti-depressants, I'm going to skip trying to make it elegant, and just write.

*****

Saturday was a rough day, emotionally speaking. There is no plan; no agreement on whether or not I go home (much less on what I'd need to do to get there or what would be required to stay there) - there's not even agreement on how my labs look, since I've been told both that they're completely normal, and that they're not.

Saturday marked the longest I've ever been away from  Acorn, and my husband brought him in to visit. As you know, we're cautious of exposing him to medical situations, but this room is pretty low key.

Sunday morning, the OB doing rounds approached me about my mental health. Because, you know, the nurse had reported that I was upset, and they didn't want that, and they could prescribe anti-depressants if I was having trouble coping.

Yup, you heard that right. They're diagnosing and treating depression based on one rough afternoon.

Trust me - I know depression, at least mine. There's a huge difference between a crying jag and a depressive episode. 

Now, to be fair, if they went through my charts back at the office, they'd see that they had prescribed anti-depressants after Acorn's birth....less than 24 hours after his birth, for the post-partum depression they assumed I'd have.

Not that I didn't eventually have PPD, mind you...but the script was given before I'd even had time to find my bearings and process what the situation was....before I'd had time to grieve.

I hadn't even seen my baby at that point.

And not that I didn't fail the PPD screening test miserably (though that was a week after I'd been started on meds) - they asked questions like "was your pregnancy complicated?" and "was your baby born with any health concerns?" - and even if Acorn had been a normal full-term baby, I'd've failed, because they asked if you'd ever had depression or been suicidal. I think there were 8 or 9 questions, and I easily answered 5 or 6 with "yes" - so as far as they were concerned, I was super duper high risk.

Sigh.

I think the whole thing is that I'm angered by this assumption that normal emotional responses to stressful situations are unacceptable. That it's not ok to cry, not ok to be sad, not ok to be angry or unhappy. That we mothers have to be cheerful. All. The. Time. No matter what the situation. That we're so fragile that we can't be trusted with our own emotions.

Because if there's anything that the nearly 3 years of Acorn's life has taught me, it's that feelings are ok, and I am much harder to break than I thought

anniversaries

This week has been blog fail week.

Early in the week I started a post on how Acorn's 2nd anniversary of leaving the NICU was yesterday, but really couldn't figure out what to say beyond that. This week he's learned to drink from a straw, called the cat "gih-eee" (kitty), babbles constantly, and eaten an entire slice of pizza, and yet there's nothing memorable?

Later in the week I started a post on how melancholy I've been the last few days about this pregnancy and about being "half way" (or more) done, and how I had no idea what was setting off the blues....

...until I realized this morning that they're related.

Now that I've sorted that out, I think I need a nap.

13 week updates

Today marks 13 weeks of this pregnancy. Theoretically that's 1/3 of the way done...but for Acorn, it was just a few days short of half way. I remember getting to 20 weeks with Acorn and thinking, "wow! half way done! That went so fast!"  If only I'd known how quickly the rest of the pregnancy would go....

Anyway. Still cranky. Sinuses are still a problem, and I suppose I ought to go back to the doctor. Still miserably sick, off and on - clearly my body doesn't read the calendar, because morning sickness is a first trimester thing (ha!)...but then, it couldn't read the clock either, and stick with only being sick in the mornings. No, lately it's been after dinner.

Acorn appears to be coming down with something too, so this will be a fun and exciting week, I'm sure. He's been on oxygen the last 2 nights, and we've run albuterol in the evenings, which we haven't done in weeks.

*****

I frequently feel that I've lost myself somewhere. I keep trying to remind  myself that it's temporary - that I need to focus very specifically on meeting my physical needs, because I don't have the energy to meet any other needs if I don't. It is hard, and some days are better than others,

*****

Beyond that, there is drama in so many of my communities right now...I wonder if there's something astrological going on, or what. Again I'm reminded that sometimes, life was easier when I was a hermit with no friends.

Deja Vu all over again

This morning, I got myself together to head to the Fetal Imaging department for our 12 week screen. It got scheduled this week because my doctor moved my due date up 10 days last week, because he felt it was more accurate, being based on my last menstrual period. By that logic, had I gotten pregnant the cycle before (where I ovulated mid-October), I'd've been 4.5 months pregnant already, since early July was the LMP date for that cycle. *sigh*

Anyway. That's neither here nor there, though for what it's worth, baby measured right on schedule for *my* date, and a week behind his date, so they couldn't do the screen, because baby wasn't big enough.

This morning, driving to the hospital, there was a sense of Deja Vu. This is the route we drove every day for 9 1/2 months while Acorn was in the NICU. We'd driven this route for several scans and for 2 admissions to triage before that, and for several inpatient stays for him after, but it's always framed in my mind by looking at the NICU windows on our way in (other than his first 8 weeks or so, he had a window overlooking our drive in), hoping nothing had gone haywire in the last half hour that we hadn't heard about yet.

It's always the same - the parking garage, the glassed-in bridge from the parking lot into the building, passing the registration desk, and into the hallway with the big wall of TV screens advertising the Children's Surgery Center at the far end.

When Acorn was born, leaving the hospital without him wasn't the hardest thing for me - though many moms take it hard, I needed out of the hospital for my own sanity (it was the first time in 2 weeks I'd breathed real air). I needed away from the social workers who thought I was crazy (ok, not that I'm not somewhat off, and not that I don't have questionable brain chemistry, but it was like an intervention!), the food that I couldn't stand, the constant checking of my blood pressure. I knew that Acorn was in the best place he could be - it was crystal clear to me the morning he was born that him staying put in my womb was not an option for either of us, if I wanted us to have any chance at survival.

No, what was hardest was coming back the next morning. Into that garage for the first of many trips, walking across the bridge, surrounded by pregnant women going to Fetal Imaging, where I'd been every morning the week before Acorn's birth, and then past the birth center elevators, which I also had to pass to get to the NICU. I walked the whole way that morning, without any help, the furthest I'd walked in 2 weeks, and it was physically exhausting, but the emotional toll was so much greater.

How could those women be happy, when this possibility was out there? Why were they so lucky to have a "normal" pregnancy, but not me?

It's still a little surreal to walk that way and not continue on to the main elevators - 291 days makes for a pretty strong habit, and I can (and have) walked that walk half asleep, panicked, on autopilot, drugged to the point of nearly being non-functional....but also triumphantly, happily, and at peace with the world.

And for all of that....I'd really rather never make that walk again. If we have to, we will deal with it, but I really hope it's not another 291 days in a row.

body image, healthy eating, and morning sickness

It's taken me days to write this. Days and tears and honesty that I wasn't sure I had. And a homeopathic remedy that's worked well for my mood swings...

...that, and the promise of a chocolate milkshake on the way home as a reward, if I get through the last of it today.

*****

Food and I have a long history of failed attempts at a functional relationship.

I have a history of eating in ways that weren't healthy in order to attempt to be thin. I have a history of vague attempts at dieting (and then gaining more weight back than I'd lost to begin with). I have a history of living in a household where food was controlled to the Nth degree (my best guess is that a trained evaluator would diagnose my dad as having Aspergers and sensory processing disorder; his food preferences are very narrow, and anyone who doesn't agree is just. plain. wrong.). I have a history of alternately not eating for days, or binging on everything in sight when I'm depressed.

Add in the very disfunctional way our society approaches body image for girls and women, and you've got quite a mess.

For me, any "diet" that requires counting sets off a very bad sort of loop - and it doesn't matter if that counting is calories, carbs, proteins, or points. It's a way of imposing control, and control and I, too, have a very disfunctional relationship, except under very specific circumstances (and even then, I still worry that the very existence of that exception to the rule, by its very nature, is disfunctional in some big ways).

It's only been the last few years that I've really come to terms with this history, and come to see that there are other ways of approaching body image and food - ways that celebrate food without putting down the body I have, ways that celebrate the body I have without making me miserable about the body that some folks think I ought to have. Ways of eating that focus on nutrition, on giving my body what it needs to be its best (whatever that best is). Ways of exercising that focus on moving because it feels good, not because it's some magic ticket to some idealized body.

The last few years are probably the most functional my relationship with food has ever been - and that's not to say there aren't days where this fragile bridge of friendship has broken down under the weight of all that history. I eat until I'm satisfied, but not past that point. We mostly eat at home, and we eat things made from real foods - things I can identify, things that aren't in cans or boxes. I eat more fruits and vegetables on a regular basis than I ate in a week as a kid; I try new things, I use spices (we had onion and garlic and cinnamon and salt and pepper when I was a kid). I cook with cream and butter when a recipe calls for it, without agonizing over the fat or calories - I find I tend to eat less when I eat things made this way, because my body is satisfied more quickly.

If I'm gonna have dessert, it's usually going to be something fabulous, because I deserve it - why waste good calories on bad food?

*****

Pregnancy has a funny way of interfering with all this progress.  I had issues when I was pregnant with Acorn - morning sickness really threw things off, and my relationship with food was very tentative then. I tried hard to stay in a zone of peace about it, but regularly failed. There were points where I couldn't finish a hamburger because it was too much food. And the list of foods I couldn't stand to eat because of food aversions was a mile long.

This pregnancy, the morning sickness has been far worse. There've been days where I know I didn't consume 1000 calories, and I know I didn't keep all of it down (and you see that number there? there's a number because that's how paranoid I've become). I've been told protein is the key to preventing pre-eclampsia, but how do you even begin to count protein grams when you're vomiting six times a day?

And then I got medication for the morning sickness, but I still don't feel like eating. I know it's not good - it's been very clear the last couple of weeks that the less I eat, the more anxiety I feel, but we're already at a point where I'm paranoid about eating the wrong things, and fearful that the meds will stop working, and the resulting waves of anxiety means there are times I just don't eat anything, because it's easier....which just makes the anxiety worse.

On top of that are the cravings. This time is not so bad as it was with Acorn (largely because the whole idea of food is right out much of the time right now). And the more rational part of me knows that following a craving is not a bad thing - my body is smart and it knows what it needs, especially if I'm otherwise eating well. But I'm rarely that rational right now, and I'm not eating that well to begin with. Part of me worries that the craving foods are displacing protein, or vegetables, or any number of more healthy things that my body and my baby need. Part of me just doesn't want to eat at all, because it's easier than possibly being sick, or arguing with myself about whether it's the "right" thing to eat. Part of me worries that I'm not eating enough - and clearly, when I'm not eating at all that's true, it's just hard to know what constitutes enough when you have no appetite and are likely to vomit if you eat too much, even with meds.

*****

I'd say that it's more important to me not to pass all this angst on to Acorn than to actually fix it....but really, that's a sign of the stress inherent in the current situation. Our needs are equally important.

Acorn has always been a kid with feeding issues. A combination of sensory issues, bad experiences, a trach, and a lack of experience has meant that oral feedings have been a challenge. We are only recently not feeding him via feeding tube, and most days, he still doesn't eat like most other kids his age. He eats more foods than my dad, which says a lot.

It's taken a ton of work to get to this point....but here we are, maintaining weight and growing without the tube, completely normal for his age in terms of weight and height.  It's been a struggle for me too - I hate peas, but he eats them happily; even though the smell of eggs right  now makes me nauseous, I've made him eggs in the last week.

There's a lot of work that goes into putting on a good face for him - into encouraging him to try everything (even things I can't stand, even when I'm not pregnant), into encouraging him to eat a little of everything, in encouraging him to ask for food when he's hungry. In short, into helping him build a good relationship with food from the beginning.

But the pressure on me, from me, is huge, and right now I'm not sure I can keep it up.

Last night he and I had mozzerella sticks and peanut butter toast for dinner - he wasn't thrilled with the toast, but he ate the cheese, and we had a nice dinner together that we both enjoyed. That counts for something, right?

Saturday morning

Some days, morning comes far too early. Our Saturday nurse is out on medical leave, which means on Saturdays, one of us has to be up by 7 when the night nurse leaves for report...and then frequently, I head back to bed, and turn the baby monitor on.

This morning is no exception, except I couldn't sleep.

I'm over-tired and stressed and still feeling rather depressed. My spouse and I both appear to have caught some cold from the hospital, and when he's sick, he tosses and turns and snores worse than usual. My tummy is unhappy about something, and so here I am with dry cheerios and a cup of tea, watching Acorn sleep on the video monitor.

Acorn is not even 48 hours post surgery, which has brought its own issues.

At some point, I'm going to have to write more about this whole nursing thing - the good, the bad, and the ugly, because I don't think most people really fathom how this works out.

But today, I'm just talking about today. So... nurse reports that Acorn was very restless. She did not give Tylenol w/ Codeine (good, because we asked her not to) but she feels he must be restless because of pain, and thinks we should reconsider.

Let's see. He's a day and a half post surgery, he has a tube sutured in place in his penis and a piece of tegaderm trying to release itself from his penis as well, and he is usually sensitive to wet diapers, but because of the tube, he drips urine all the time instead of peeing and then having dry pants for a while when you change him. He's on medication for bladder spasms (which, if you've never had one, are amazingly uncomfortable), but the same medications dry up his secretions to the point that the nurse had commented on him being awake from 4-6 and desatting constantly, and her finally suctioning a huge mucous plug out.

No....none of that could possibly be making him restless. Not at all.

Not to mention the fact that codeine makes him pace the floor...which means when he sleeps with codeine on board, he tosses and turns all night.  We learned tihs last surgery, and this same nurse went ahead and gave the codeine after we'd suggested not doing so, having noticed his twitchiness, and then she complained that he was still restless after she gave it.

ahem.

Anyway. He's laid here for the more than an hour she's been gone, and not moved once. Some restless night, huh?

Winter can bite me

Dear blog, it has been 11 days since my last post. Before that it was 7, and then 5 (though that was just a little blog hop post) and before that 7.

I could blame it on a lot of different things, but the real root cause is that it's winter, and this is Michgan, land of not much sun in the sunny part of the year, and no sun at all this time of year, when it's just becomming light when I leave for work, and nearly dark when I leave there for home.

The truth of the matter is, I'm struggling, mood wise, and it shows in my blogging, or lack thereof.

It's not like this is a new thing. It's been ongoing, to varying degrees, for years. We've replaced most of the lights in the house with full spectrum bulbs, I've increased my vitamins, I've learned to meditate. I've even taken antidepressants at various points. Some years have been bad. Some years, like the year Acorn was born, I was already so overwhelmed that the seasonal changes were completely unnoticed.

And maybe that's part of the problem too. I've been stressed lately...but not in the same sense that I was back then. This is more a death by a thousand cuts kind of stress, and I'm just not up to handling that sort of thing these days, because there are so many more important things to deal with. We're making plans for next year - plans for life without a trach, we hope. And that's a huge adjustment for all of us.

It's good, but stressful, and the fact that there are so many good things going on right now just makes the depressed mood stick out more.

Taking care of ourselves

Every now and then, someone talks about how we need to take care of ourselves to take care of our children. Shoot, I've even said it.

Still, it's often difficult to figure out where to carve out time for self care in the midst of what feels like an over-scheduled disaster....even though Acorn has fewer appointments than this time last year. I think part of the problem these days is that Acorn is at an age where he needs consistency...and getting him to bed has been a major challenge, so we have to be home by 9, and we're usually just getting home from work at 6.

Our solution, to some extent, is a standing Thursday night pattern: one of us takes Acorn to gymboree, the other takes off for the night. For my husband, it's his evening with his girlfriend; for me.....there's less structure.

And that is both good and bad. For a while it was an appointment with my counselor, and then a massage. Then my massage therapist fell off the face of the earth, and then I quit therapy...and then it was writing for a while.

This week I'm just in a funk, and I'm realizing that part of my issue is that while this schedule gets me out of the house....it's very isolating. I need time to myself, I need time with other people, and having a standing night for being out means that I can't take into account what I need most right at that moment - there's no time to plan for a change in plans.

Last night I went and got dinner, and went for a massage at a Chinese reflexology and acupressure place that takes walk-ins. Interestingly, they were playing Native American flute music, which is a change from their norm. Not as grounding as acupuncture, but a good start.

So....I think I need to get back to building meditation time in to my days. Or doing yoga or something - there's a new yoga place just a mile down the road. But meditation is shorter, and less expensive, and doesn't require packing up a bunch of stuff and heading off somewhere.

And I need to build more social time into my life. Not that I'm a terribly social person most of the time, but there's a point where I've spent too much time sitting in my little self-imposed exile.

I just don't know how to balance this. I have no idea. I need more sleep, and I need time for all this stuff, and time to play with Acorn, and time to fight over his IEP....can I clone myself?

New Therapists, New Diagnoses

We love watching the show House - we're sort of a mystery diagnosis and crime lab junkie household, even though we don't have cable and don't watch a lot of TV. And since we spend so much time with hospitals and doctors, a lot of the things on House are super funny to us.

In one episode, Dr House says something along the lines of, "pick your specialist, pick your disease" - basically, that a doctor will find something in his or her specialty that matches your symptoms, even if what you really have is an illness that belongs to another specialty.

This week, that's sort of how we're feeling at our house. As I tweeted last night, "my kid's superpower: magically pulling medical conditions out of nowhere." Acorn went to his intake appointment for the new speech therapy program, and came home with 3 new diagnosis codes - oral dysphagia, expressive language disorder, and receptive language disorder.

I still have some issues with that last one, but the therapist assures us it's not as bad as it sounds - she's more concerned that he only follows directions for some people and not others, than about him not actually understanding what's said. I suppose I can go along with that, but I was already wondering how much of what we see is his actual personality, how much is his attempts to exert control over situations, how much is him manipulating people, and how much is actual delay...and this just adds to that feeling.

He ate for her, though obviously not at an age appropriate level - she was pleased, though, with what she saw. We'll be going forward with a combined speech & feeding therapy program, because right now the issues are all somewhat tied together. And I'm hopeful that we'll make progress this way - not that he hasn't been making progress, but that a little faster progress is always nice.

After the fun of speech, we left him at home to meet his new child psychologist, and while there's no diagnosis there...there's agreement that his reactions (over reactions) to doctors offices and the like are, as I put it, "understandable, but not OK."  I'm fully of the belief that there's no need for him to be so anxious about doctors that he makes himself sick or shuts down, and that we should do something about it other than wait and hope it gets better.

If nothing else, having someone with a PhD after their name telling doctors and hospitals that certain things are just not going to fly with Acorn will be a help.

Anxiety in Spades

Some days, it occurs to me that Acorn comes by his anxiety naturally.

My mother's partner passed away earlier this week. I did not really know her. But my mother needs some support, and the likelihood of anyone else in our family going to the funeral is slim to none, so I feel like I need to go.

I don't like leaving my kiddo behind. The one trip I've taken for work was downright traumatic on that front, and this one involves a weekend - and I often feel like that's the only time I get with Acorn.

I don't like last minute things like this - I found out yesterday afternoon, and I have a flight out of here at 9 am tomorrow. I always feel like being rushed is going to result in something being forgotten or lost or otherwise screwed up.

And finally, I really struggle with anxiety when it comes to groups of people I don't know. As far as I can tell, I'm driving from the airport, an hour and a half into the middle of nowhere, and attending a gathering of people I don't know, in honor of someone else I didn't know. I know that to some extent, I will be put on display as my mother's daughter, the one with the sick kid, and I really just hate that.

I dunno. I'm kind of hoping for a relatively quiet weekend with some down time to meditate and write. But knowing my own anxiety, the situation, and my mother, I'm guessing that's a long shot.

DIY Play Therapy

Acorn is apparently in one of those anxiety-prone phases that toddlers go through - just before Yule, he started having what appeared to be nightmares. Instead of our nightly ritual of jammies and a story and laying down (and being asleep within five minutes of us walking out), he started crying when we'd close the storybook.

However, add to the normal toddler anxiety and nightmares, our trip to Florida (with sleeping someplace new and our rather messy accidental decannulation), getting sick the very next week, and the fact that said ER visit resulted in an overnight in the PICU, and you've got the makings of an emotional mess.

And that'd be a mess even for a typical kid...Acorn has still been in the hospital more days of his life than out (though we're quickly approaching the tipping point there - assuming we avoid any more in-patient days, February 9 will be the day he's been out of the hospital as many days as in. He's already got a fear of anyone wearing blue gloves (and even my dad, who has his own share of emotional issues, remembered that while we were in Florida). He sobs when anyone tries to use an under-the-arm thermometer, or take his blood pressure. He's afraid of the pediatrician's waiting room right now because he's in every 28 days for synagis - and two shots of it each time, much less the 15-18 month vaccines and flu shots (all 4 of them) he had this fall.

Needless to say, we've got some serious anxiety going on right now, and since we know there is surgery in his future, it's only going to get worse.

So, what to do?

Well, some friends have suggested cranio-sacral therapy, and we'll probably look into that. But for the more immediate term, it's play therapy for Acorn.

Today we bought him a doctor's kit (Fisher Price brand) - it looks like this:

It's got all the things he is most afraid of - blood pressure, thermometer, syringe for shots, otoscope, and a stethescope. We're sure that all of the day-shift nurses will help us by playing with Acorn with these - checking the temp of various stuffed animals, the housekeeper, etc.

Beyond that, though, we are working on either modifying one of the stuffed animals here, or going to one of those stores where you create a stuffed animal, and adding a trach and a g-tube to the stuffed animal.

We're hopeful that this desensitization and the role playing it allows will help with the anxiety he feels.

It's all about balance

Balance is one of those things that Pagans often talk about in terms that suggest it's a place you go, rather than a constantly changing state.

One of the things that most special needs parents eventually learn is that balance is an ever-shifting point of reference. It's something you strive for, but rarely something you actually achieve, because in a minute or two, a piece of eqipment will alarm, or your child will have a melt-down, or some therapist or doctor will call and change your carefully crafted schedule of appointments for this week, as if it means nothing to you.

It's often hard to remember, but we have to remember to factor our own needs into the balance equation. While we can ignore them in the short term....there are long term consequences to not taking care of ourselves. We get grumpy, short(er) tempered, and we're not at the top of our game.

And believe me, when you're coordinating 7 nurses, 3 therapists from one agency, 3 more therapists and a teacher from school, a pediatrician, and 5 specialists just for your child (not to mention anything you might need to do like work or your own health issues)....being on top of your game is a necessity.

What I've learned recently: if you want to have time for yourself, you have to plan it, and make it happen. And you can't plan it and then do the dishes....that's just not good self-care.

We're trying to work out how to get away for a weekend, or even part of a weekend. It means asking for help from friends and family, and scrimping nursing hours, but it looks like in March we might manage it.

I, personally, have realized that giving up my dreams of being an artist and business owner a couple years ago, while necessary at the time, was not a good long term self-care strategy. It's too hard to balance without a little something for myself.

So...I'm photographing jewelry and other art objects. I'm opening an etsy shop. Maybe things will sell, maybe they won't, but it's an inexpensive way to get my stuff out there. I've updated a couple of my old websites, and closed down the rest. And I'm making stuff again, which has always been a great source of peace for me.