Babies Don't Keep

Mother, O' Mother, come shake out your cloth,
Empty the dustpan, poison the moth.
Hang out the washing, make up the bed,
Sew on a button and butter the bread.

Where is the mother whose house is so shocking?
She's up in the nursery, blissfully rocking.

Oh, I've grown as shiftless as Little Boy Blue,
Lullaby, rockaby, lullaby loo.
Dishes are waiting and bills are past due,
Pat-a-cake, darling, and peek - peekaboo.

The shopping's not done and there's nothing for stew,
And out in the yard there's a hullabaloo.
But I'm playing Kanga and this is my Roo.
Look! Aren't his eyes the most wonderful hue?
Lullaby, rockaby, lullaby loo.
The cleaning and scrubbing can wait till tomorrow,
But children grow up, as I've learned to my sorrow.
So quiet down cobwebs; Dust go to sleep!
I'm rocking my baby and babies don't keep.

~ Ruth Hulbert Hamilton

I find myself remembering this poem more and more often these days.

We're discussing Acorn going to kindergarten this fall (though his IEP will be later this month, and it's not a done deal until then).  He's more than half my height (he's 3 feet 6 inches tall - pretty good for a kiddo who started out only a foot long). He's swimming, and very serious about it - and he looks so much older these days, with the thin but strong body of a little boy who plays hard, instead of the somewhat rounder look of a toddler:

And Leaf took her first step (just the one though) this week - we're hoping her new SMOs will help with that, but they're dwarfed by the velcro that holds them in place:

Even so, she's getting big too. In a year we'll be talking about transitioning from early intervention into special ed preschool. With any luck, we'll be trach free or nearly so by then, and probably talking about swimming lessons or dance class or something like that for her too.

Definitely not babies anymore...which always catches me by surprise.

Our Life in a Fishbowl

The essay below was written last year for a proposed anthology on chronic illness and spirituality. The anthology fell through, so I started thinking about what to do with this instead. I realized that it rings even more true now with Leaf in the NICU than it did when I wrote it, and I cried last year writing it.  

So, after some consideration, I updated a few things, and I'm posting it here as a prelude to a project I'm working on. I think families like mine - Pagan families of all sorts, with babies currently or formerly in a NICU - need support. We need connections to others. We need to be able to talk about how we navigate this journey, in all its stress and chaos, and come out the other side without losing ourselves. Next week I should have the remaining details ironed out, and I will post them at that time.

Without further ado, let me tell you about this fishbowl we've lived in for the last 3 years....

When your child is ill, the world stops.

When your child has a lasting illness...the world goes on without you, until you figure out how to get back on the ride.

My son Acorn recently turned three years old. In his first two years, he spent 291 nights in the NICU (neo-natal ICU), and another 14 in the pediatric ICU (those 14 nights were earned in 4 visits to two hospitals, and included an ambulance ride with full lights and sirens). In his third year, we had only one night in the PICU, and one on a regular pediatric floor – a huge improvement.

I went into this journey of parenthood with a deep faith in my Gods and Goddesses. That faith has seen me through thus far, on good days and bad, and helps me to continue to weather the storm. The events of the journey, however, have changed the way I approach the outward aspects of my faith – possibly for good.

Acorn is our miracle child in every sense of the word – a fertility treatment baby, born 13 weeks early and more than 2 weeks behind on growth even then. He's now 3 years old, running and playing and nearly normal – cognitively above average, about the right size for his age, physical skills are mostly normal, his lungs are improving week by week and month by month, he eats as well as any three year old, and he's cute as a button. I thank the Gods every single day for him – for all the things that have gone right, for the wisdom of doctors to make hard choices, for the staff that has cared for him, and for the things we've learned from him.

When it became obvious that he would be born extremely prematurely, I asked those same Gods to protect him. What I didn't know was the toll that the experience would take on all of us. I was very much out of the broom closet before parenthood – it was easier for me that way. For Acorn, being at least somewhat in the broom closet has been a necessity, and has been since his birth, and that's not the kind of Pagan or the type of parent I ever thought I'd be.

The first thing you learn about the ICU is that there is no privacy. Even though our NICU has “private” rooms for the smallest and sickest babies (which Acorn was), the walls were glass, and the nurses came running every time an alarm made a peep, plus anytime they felt like poking their head in. Six families were grouped together in these glass walled cubicles, and there were no secrets – our comings and goings, smiles and tears, all were on display for everyone to see.

Some families posted notes from their ministers on their message boards. Others went so far as to post crosses and pictures of Jesus and Bibles all over their rooms. We felt we could not place anything Pagan in our room to provide us the same comfort – we were dependent on doctors and nurses who, in most cases, would not share our faith – our child's very life depended on them, and the idea that they might treat him differently if they knew was too much to bear.

As the weeks in the NICU went by, we saw the chaplains a few times. All of them were nuns, except one (and she had sneaked up behind me one day when I was reclining in an easy chair, holding my barely 2 pound baby with his unstable ventilator connection, in a room barely big enough to turn around in, so she might have been a nun too for all I know). They asked if there was anything they could do for us, and I declined – I happen to know that I'm the only Pagan on file in their chaplain's office, if my nearly decade old file is even still there, with my no-longer-existing phone number from my previous residence. So, we kept an altar at home, and sang Pagan chants softly when we had a few moments without anyone in earshot.

We didn't have the church support that many of the other families did – no one brought us dinner or asked if we needed groceries or a break or just someone to talk to. The whole situation was extremely isolating.

At 4 ½ months, Acorn went into severe respiratory distress. To remedy the situation, he needed to be on a ventilator again, so he had a tracheostomy (a hole in his neck, with a tube to the outside, to breathe through – often called a trach by families in similar circumstances) – much like Christopher Reeve, after his spinal cord injury. He also had a feeding tube surgically implanted in his belly, and got much of his nutrition through it.

In fact, as weeks became months and we became the longest-resident family on the unit, nurses started sending other families to talk to us, so that we frequently didn't even have the privacy of being out of earshot of others. I got requests like, tell them your baby was the same size as their's and is just fine (well, as fine as a child with a tracheostomy, on a ventilator can be). Tell them that they're not alone, that they're in good hands. Tell them what a trach is, and how much better it is than the alternatives. I got questions from some of those parents too. How do you do this every day? How do you come in here with a smile? Telling them it was because of my faith only brought more questions. I deftly deflected questions from them about that faith, but could not avoid continued assurances from some families that their God would heal our son. Again, I found myself thinking how different the discussion would have been had we had a pentacle on our message board, or a goddess statue – would it have interfered with our ability to help these other families?

Another thing that I found: When most of your non-working hours are spent in a place where your religion feels unwelcome, it impacts your practice. I had no time at home to celebrate Sabbats and Esbats. I couldn't celebrate them openly with my child in the hospital. My in-laws kept butting in on weekends I had hoped to get a little time to go to rituals. I couldn't really celebrate anywhere.

What happened instead was a transformation – my practice became more efficient, more succinct, with fewer tools and props. Meditation and prayers became key tools – what else can you do when trying to hold a fragile child still enough not to dislodge the tubes and wires keeping him alive? Energy work took on new importance too – when your child is too sick for you to even hold him, all you can do is send energy; when others ask for your prayers (even though you aren't of their faith) and you need to spend time with your own child, energy can still be sent.

Even after finally leaving the hospital, we have nurses in our home every day. None of them are Pagan. As a family, we have taken to keeping our faith quiet, rather than losing good nurses because they're uncomfortable here. This has caused some issues with Christmas, but for the most part we've given up all privacy in favor of having our child cared for properly, because we have no other options. Altars have been moved into bedrooms rather than in the open, rituals are done in the hours no nurse is here, and we've been cautious about decorating Acorn's room with anything identifiably Pagan.

We can't exactly ask our nurses to attend festivals with us. We don't have enough nursing hours to leave Acorn at home for a weekend while we go away either, if we want to have enough care during the week to go to work. Even if we could swing a day out to a local festival, we've been instructed to avoid large crowds, to help minimize the risk of Acorn catching a cold or the flu, which can be very dangerous for a child with bad lungs. And how do you take a child on oxygen camping – off the ventilator, it's a little closer to possible, but still not very likely. So, again, we were isolated. I keep my solitary practice, though it's still usually quick and with few tools, and we do some things as a family, but not much in the way of public or group rituals. Most groups want you to put in a certain amount of time each month, and I just don't have it to give – not that I wouldn't love the chance to take time for myself regularly, but that for three years, our schedules have revolved around Acorn, around his therapies and his nursing schedule and his health.

In some ways, I miss those connections with other Pagans more than anything – not in terms of the strength of my faith, but in terms of having people to have conversations about faith with, and in terms of having role models for being a Pagan parent to a little boy who thinks the world is a magickal place.

One day in the not too distant future, we see a time when Acorn will be “just like” other children – when no one meeting him for the first time will suspect the story of his life, unless they know what to look for: the tell-tale scar from a tracheotomy, the careful pronunciation of a child with years of speech therapy behind him, the fleeting terror that crosses his face at the mention of a doctor, the absent minded fidget with his shirt where his feeding tube was.

They won't have the blessing of watching him learn to open his eyes when he was a week old, or the understanding of how amazing the human body's capability to heal can be. They'll just see the person he's become – the child of the Goddess he's been all along.

Until then, I lean on my faith, and the deep well of peace it provides, and I enjoy my daily reminder of how magickal the world really is.

a sense of belonging

Sometimes I'm not sure where I belong.

I'm too attachment parenting (AP) oriented for most mainstream moms groups.

I work full time, which apparently means my kid doesn't need playgroups.

I'm usually too mainstream for most Pagan parenting groups (and the one group I know of locally requires moms to be stay-at-home-moms to join).

Apparently I'm not mainstream enough for the local AP families group (poly & Pagan) *and* too mainstream (I work full time and I give my kid antibiotics when he's sick).

My child's needs are too specific for most generic "special needs" parenting groups, which I frequently find are...overrun...with parents who have kids with Autism or other spectrum disorders. Don't take this the wrong way, but if your "special needs" group only ever talks about ASD, it's an ASD group, and ought to be advertised as such.

I've got a few special needs parenting groups that I'm a part of, but every once in a while the less mainstream aspects of our life get me in trouble (AP in particular).

And sometime this year, we will lose most of the things that have made Acorn special needs and medically fragile - both the trach and g-tube are going, unless things go haywire. While that will leave him with some complex medical history, and a few minor special needs....he'll no longer be classified as medically fragile.
 
How strange that we're not really going to fit in with that crowd either...

Why I love our PMR doc

A week and a half ago, I took Acorn to his PMR (phsyical medicine and rehab) doctor for a follow-up. We've seen this gentleman twice before, and he's been great with Acorn, even with all the medical anxiety issues. He's patient, engaging, and he pays attention to Acorn's cues.

At our last appointment, reading through Acorn's MRI report half out loud, he stopped mid sentence and said, "unremarkable? Acorn, they called you unremarkable! How rude - they don't even know you!"

Acorn would not shake hands today, but that was ok. 

He asked how things were going with the AFO, and I explained that while he walks much better with it on....he's recently gotten considerably faster than before with it off. Before the AFO he tripped every time he started going fast, because his foot turned out. Dr D had been watching Acorn wander around the room, and asked us to take his shoes and AFO off - and then get him to walk around the room.

Dr D stood there, mouth agape. He went back and re-read his notes from 2 previous appointments. He picked Acorn up by the armpits to check his shoulder tone. He again looked confused and re-read his notes again.

Finally he turned to me and said, "whatever you're doing, it's working, because I can't believe this is the same kid that was here last summer. Most kids I see here don't make that kind of progress."

Score one for the home team!

We'd gotten a second x-ray to check for scoliosis - the first said he had a 10 degree curve, which Dr D said was within the measurement error, which was why he wanted another check. He wanted to make sure Acorn wasn't getting any worse, because the low tone issues he's had, particularly the mis-match between right and left, make him at high risk.

He read the new report, and again came to a screeching halt.

This time, the curvature measured only 1.5 degrees.

He said, "I don't know what you did. I was just hoping it was no worse. This though...This is phenomenal"

I told him that we've worked hard on strengthening trunk muscles, we've been seeing a chiropractor weekly, and that I really think walking better now that he has the AFO has been a big help too.

He said that was all good....and to keep doing what we're doing.

Goddess watching over us

We'd told people that we didn't care if our child was a boy or a girl (and, surprise, our "girl" was really a boy), just that our child was healthy.

Before Acorn was born, when things started to get rocky, I remembered reading that one of my matron Goddesses (who is not known for being the most motherly type) was frequently referred to in mythology as a goddess that people asked to watch over their children, in a "keep them safe or take them to you, so I at least know they're in good hands" kind of way. And without a second thought, I asked Her to bring us through this, with a healthy baby....or to take our baby and spare "her" all the suffering she might face otherwise.

It was a leap of faith that I'm not sure I could pull off today, but a realization reading other comments on a post on a special needs message board may have changed my mind on that front.

It's common for Christian folks to say that they've put the whole situation into God's hands - that He will do whatever he thinks is best. I think us Pagan folk have the benefit of having some ideas on how to manifest the things we need and want...and even as we attempt to do so, sometimes it turns out that we got what we needed, even if it wasn't quite the way we were expecting.

Looking back....it pains me to say this, but looking back I was so mad at Her, after Acorn's birth, for not protecting my tiny little guy from various surgeries and procedures and IVs and needles and on and on. 

And yet here we are 2 1/2 year later, with a happy, healthy toddler (ok, yeah, he's still got a trach, but he's at least as healthy, or more healthy, than the kids of friends on the local natural parenting board, and at least as healthy as the kids at preschool). Most people meet him and think he's "normal" (whatever that means) until they realize he doesn't talk, which I know I couldn't say a year ago - or even 6 months ago.

And isn't that what I asked for? It's been a bit round about, and a bit touch-and-go, and a lot more complicated than we expected. But...we are coming through it all, healthy and whole.

So...maybe it's time to be a little more specific aboout what we want for Leaf, so we don't have to take such a meandering path to get to that point. A healthy full term pregnancy. A VBAC. A baby healthy enough to come home with me when I leave the hospital, without complications or additional follow-ups with specialists. A baby who breastfeeds easily. Milk that comes in quickly and a good milk supply with no fenugreek (I can't stand the smell of that stuff).

And I really wouldn't mind at all if it is a girl. :)

A Bit of Happy News

So, the long and short of it is, I'm pregnant!!!

I've spent weeks trying to figure out when to say it, how to say it. But I'm just so amazingly happy about it that I figured it was better to share, so I could actually say something about it, because I'm ready to burst. I'd hoped to wait until next week, when we have an ultrasound scheduled to check for a heartbeat and such.

And then last night I outed myself on twitter hoping for help with the severe morning sickness I've been dealing with, because I reached a breaking point, having thrown up every single time I ate yesterday, except one (right before bed).

This little one was conceived without the use of fertility drugs - something we did not think was possible for us, so all I can assume is divine intervention. There are a couple of Goddesses who will have chocolate and other goodies when it is next appropriate to do so. We had been sure that this fall was the right time to try again, until some family things for next summer came up that meant putting it off for better timing...but if an opportunity to try without drugs was going to present itself, at the time we originally felt was right, who am I to argue?

While I'm already hating morning sickness (see above), and there were a lot of things about my pregnancy with Acorn that I wish had gone differently, I really enjoyed being pregnant, and I am finding little moments of joy in this pregnancy.

I love being able to sit here quietly, soaking in this feeling. The heavy feeling in my belly, even though baby is not nearly big enough to make anything feel like anything. The warm glow that nearly crackles across my skin at times - that same energy that makes people comment on how pregnant women just glow. The very spiritual and yet grounding realization that there is a person inside me, just waiting to come out and let us meet him or her.

I don't know that we'll be finding out the sex of this baby before its birth - we supposedly knew Acorn's, about as sure as we could be, and they were wrong. Not finding out would be less drama inducing, I think.
Mostly, though, I am praying. Praying a lot, daily - for a healthy baby, and a healthy full term pregnancy without complications. If you all wouldn't mind, I think we could use all the help we can get on that front.

what to expect...

I think, if we have another child, that I may burn my copy of "What to Expect When You're Expecting."  By week 8 of the pregnancy, we'd already broken the rules in the book - we were 2 ultrasounds in, had seen his heart beating both times, and my morning sickness was so severe that I had been sent to a dietician. Pre-eclampsia is mentioned in the book, but there's no actual discussion on what happens if you get it.

Acorn is definitely not what they (or anyone else really) were expecting, and I think one thing I've learned from this is not to assume life will be typical.

So it is with Acorn's new doctor who, upon reviewing one test report, was mumbling the report outloud as he read it, and then exclaimed, "How rude! They called you unremarkable! Clearly that's not true, you're unique and wonderful!"  Acorn clapped and giggled. This doctor? Not what we expected, but definitely what we needed.

Later this week will be Acorn's second trachiversary - 2 years he's had his trach, and really, I can't imagine him any other way, though I look at the dozens of NICU photos on my wall here at work daily, including the time before the trach. It's odd, when you consider it, that we think of all this as normal - the tubes, the nurses, the doctors, the therapists. Again, not what we expected.

Expectations are all around us, but just for today, think about what life might be like if you decided to do something completely unexpected. Try it sometime - you might be glad you did.

The thin veil

Trigger warning: this is a post about death. Religion and death, near death, possible death, and birth in a highly medicalized setting via emergency c-section to prevent death are among the topics. Tread lightly here if these things might upset you.


******



This is a special time of year - the year is working it's way down to the darkest point, and here in that limnal space between the dark of winter and the light of summer, the veil between worlds is thinnest.

As Pagans, we know that this is just a stage - the final harvest, followed by a time of rest, and then the cycle begins again. Death is just a part of life. For our family, Halloween is the Feast of the Dead, a time to honor our beloved dead, to send them well wishes and share a meal, and remember them. It's a time to be together as a family, to circle the wagons and remember our ancestors.

I am convinced that it is not the fear of death, of our lives ending that haunts our sleep so much as the fear...that as far as the world is concerned, we might as well never have lived.
--Rabbi Harold Kushner

And yet...this medically fragile special needs parenting life also means facing death head on, far more frequently than any of us wish. Among the support network we've built, there is a death every month or two; a rather unexpected one just in the last few days, in fact. Each one is a reminder of how easy death comes, how it sneaks right in where you are. How it can all be looking up one day, and all come crashing down the next, ready or not here it comes.

Because I could not stop for Death, he kindly stopped for me
--Emily Dickinson

This time of year is full memories for us of how close death can be - just 2 years ago, my spouse was struck by a car while crossing the street to catch a bus at the beginning of October, while Acorn was still in the NICU. And on Halloween, instead of putting on his pumpkin costume and taking pictures and preparing to come home, Acorn went into severe respiratory distress and narrowly avoided being re-intubated. Within days we were discussing that he needed to be on a ventilator, and within a week, plans were being made to place his trach.

All of those close calls, so near on the heals of Acorn's birth that summer.

Birth and death are not two different states, but they are different aspects of the same state. There is as little reason to deplore the one as there is to be pleased over the other.
--Mahatma Gandhi

A few hours before his emergency exit, I called the OB resident in, and told her that there was something horribly wrong, and we needed to change tactics - I was sure I was going to die. While she attempted to convince me otherwise, later analysis showed I was right; that was the tipping point where I slipped from just pre-eclampsia into HELLP syndrome. My kidneys started to fail (and my catheter bag contents went from yellow to brown to cherry red, scaring the crap out of the anesthesia resident), my liver started to fail, and my blood.....well, my blood started clotting in ways that it shouldn't, like in the test tubes full of anti-coagulant used for lab work, and in the bruises that were blossoming all over my body.


*****


In 2008, every member of my household narrowly escaped death.

It's hard to get past that fact this time of year. It's hard to get past death at Yule - the anniversary of my grandfather's death in 1989, the month of my birthday and the great-grandmother whom I shared a birthday with (who was my source of refuge many a night after school), the month of my spouse's grandfather's death. The dark part of the year is a hard one in our home.

Foolish is the man who says that he fears death, not because it will pain when it comes, but because it pains in the prospect
--Epicurus

But it is, after all, just a part of the year - it comes, and it goes, just a spoke on the wheel. I don't know how other faiths handle this part of things - the issue of what happens when we die was a big part of the sticking points that eventually resulted in my leaving the church of my childhood. But I know that for me, being Pagan has meant having a way to put all of this into perspective.

To every thing there is a season, and a time to every purpose under the heaven. A time to be born and a time to die [...] a time to kill and a time to heal
--Ecclesiastes

Death comes to us all, and it's not a bad thing, just another step down the road, another lesson to be learned.

Death is a part of our lives, in a very real way, because of the people we've met on Acorn's journey. More so than many kids, I suspect he'll have to learn about it early on, because of that fact. But it doesn't have to be something he fears, and that's a gift I wasn't given as a child.

Lo, there do I see my father.
Lo, there do I see my mother and my sisters and my brothers
Lo, there do I see the line of my people, back to the beginning
Lo, they do call to me
They bid me take my place among them in the halls of Valhalla
Where the brave may live forever
--The 13th Warrior

That is the lesson of Samhain - we must see and expierence the dark to really know what light is; they are two sides of the same coin. And as far as journeys go, we've hit some dark times, and it makes us appreciate the light all the more.

Living in a multi-cultural world

Today is, for most Muslims, the first day of Ramadan, the lunar month wherein one fasts (no eating, drinking, or sex) during daylight hours. Coworkers of mine will be leaving shortly for the meditation room for their 1 pm prayer, and I'm really thankful to work in a place that allows such a thing without much comment.

I first heard of Ramadan as a child - maybe 8 or 9 - I was suffering that mental illness common to young girls, where horses are the only thing they can think of, and I was eating up every horse related book in the library, including "The Black Stallion." At the time, I think I knew that there were people in the world who were not Christian...but I'm not sure I'd ever met any in our small rural midwestern town. Baptists were exotic, as far as we were concerned, with their church and the Methodist church out on the edge of town - my dad wasn't convinced that going to the Baptist vacation Bible school wasn't a direct road to hell.

Acorn is growing up in a much different place. Detroit has one of the largest Muslim populations in the western world, and the suburb we live in has touted that it is among the most diverse cities in the US, having something like 46 different ethnic groups represented in its borders. Even our neighborhood has people of all different races and cultures of origin - I can count at least 6 just on our two-block-long street. His doctors even represent this diversity.

Not having grown up in such a diverse place, it's hard to know what to tell Acorn. Knowing that we're a minority, religion wise, in the midst of all this is even more complex.

But for today, I'll just stick with telling my Muslim friends - no matter where they're from - to have a blessed Ramadan, and to enjoy their feast tonight, and to continue to point out to Acorn all the different kinds of people we know, and yet how they're all still wonderful people - different colors, different ways of dressing, different ways of speaking, different genders, different family structures, cognitive and physical differences too.

Explaining why some of these things make people uncomfortable can wait for Acorn to be a little older.

comparisons and perspectives

We don't get out much, given that we're supposed to practice "social distancing" throughout the colder months to help avoid Acorn catching germs. He has one-on-one care here at home, so there's no need for daycare; there aren't many playgroups for toddlers of working parents, and the few for-pay classes for kids his age that are at times we can get there are just not oxygen tubing friendly.

Because of this, we've kind of lost touch with any understanding of what constitutes normal development - lost in the world of therapists and IEPs and goals. We've spent so much time worrying about how to get Acorn "caught up" (at 9 months, he could barely roll over, much less sit independently), that we forgot to keep track of what "caught up" means.

We spent several hours yesterday evening at a BBQ/potluck for a local attachment parenting group. They've always been super welcoming of us, 
even though we aren't quite as crunchy as many of them, and even though I'm not a stay at home mom. It was interesting to see Acorn around other kids about his own age - a real perspective changer.

Sure, they all talk...a lot...though not always intelligibly. That's something that he's still far behind on.  They eat a lot - some of them eat whole apples even. That's definitely not something Acorn can do. He walks only a little more tentatively than they do, but most of them have been walking almost a year, and Acorn has not yet been walking for 4 months. Several moms who remembered him from last summer (when we were just happy that he was sitting independently) were shocked and amazed - he looks so healthy, so normal... one mom pointed out that her son is a month older (actual age), and that she saw nothing in Acorn's actions that wasn't mirrored in her son.

Even our OT has said that if Acorn came into EI right now, he'd not qualify for occupational therapy (even though he avoids using one hand and has some sensory defensiveness) and probably wouldn't qualify for physical therapy either,  even though he can't jump and trips over sidewalk cracks.


So there we have it. Perspective. We still worry about the little things - after all, we've been well trained in picking them out. But we are a lot more comfortable with the idea that things are just fine as they are, and that all this therapy is working out.

Counting our Blessings

Acorn's cardiologist is an interesting guy. Every time we've met with him, starting at only a couple weeks old, he's told us what a blessing Acorn is, and that "God willing" he will grow up to be a healthy, strong young man. The interesting thing about that statement is that he's a devout Jew, and the Jewish folk I've known over the years usually aren't so sharing about faith, nor are they so quick to use their Lord's name. I love the fact that he's genuinely excited when things go well and when he sees improvement, and genuinely sorrowful when things aren't so promising - so many of our doctors are detached and seem not to care. I love the fact that when Acorn is scared or crying, the cardiologist sings to him in Yiddish, which usually results in Acorn quieting up, with a confused look on his face, like "OMG, I have no idea what he's saying - what's up with that?"

This sort of openness about faith bothers my husband, but I'm actually really comfortable with it - this doctor lives his faith in a caring, genuine way. And that's the kind of faith I've always tried to grow within myself. Several people over the years have shown me that there are ways to live as a part of a religious community that alienate others, and ways to live and conduct yourself that speak to what faith is all about. I'm not always where I'd like to be on that front, but I'm working on it.

Back to that bit on blessings though - Acorn's cardiologist was very happy this week when it was revealed that even as we're reducing the dosage of his heart medication, the signs of pulmonary hypertension are still staying away. Less than a year ago, he was still having nearly daily pulmonary hypertensive crises, including one this time last year, where we called the ambulance because we couldn't get his oxygen saturation up out of the low 80's with all the tricks and equipment at our disposal - they decided just to throw him and I in the ambulance and go, full lights and sirens, because they didn't know what to do either.

The cardiologist again repeated at the end of our visit what a blessing Acorn is, and what a blessing this improvement is.

The same day, a document was posted on the tracheostomy message board I frequent. The poster's child had a fairly rare condition, and an even rarer "experimental" procedure to save his life before birth (the child is a preschooler now, or thereabouts, as I recall). The document posted showed a literature review for children with this condition, and found only seven cases, one of them being this particular child. Of the seven, only this child survived more than a few weeks (though the parent comments that they know a couple of others about the same age who survived as well).

Kinda puts it all in perspective, doesn't it?

20 years ago, not only would Acorn likely have died, I probably would have too. Instead, we're happy, mostly healthy, and moving forward into the future.

We are blessed, by every definition of the word.

Almost Wordless Wednesday

One year ago today, Acorn finally escaped the NICU and came home.

 Last pic in the NICU

Out the door

And finally at home

Happy Samhain, or Halloween for the rest of the world

The evening is almost over, but I hope you all have enjoyed your evening of children in costume - both the little ones and the not so little ones - and the ensuing sugar rush.

We've had a quiet evening ourselves - a nice family evening. Acorn spent some time dressed up as Darth Vader (complete with action breath sounds!), and playing with Auntie K (Big Oak's girlfriend). We handed out candy and had a nice dinner - salads, and spaghetti (homemade sauce, out of the freezer). No trick-or-treating for Acorn - he's too small to appreciate it, and he doesn't eat candy either, so no need to have a lot of it on hand.

I made applesauce and banana bread this afternoon too, and I feel really good about staying on top of things and taking care of what we're eating. It's about time to head up for a brief private holiday ritual, and then bed.


Today, one year ago, we were crushed when Acorn had worsening respiratory distress, and what may have been his worst blood gas ever. Just two weeks before, we'd been working on breastfeeding and planning to bring him home for good. Instead, we'd moved back out of the special nursery, and into critical care again. A few days later we were discussing a tracheostomy for "long term ventilation" and a g-tube for feeding, because the risk of overstressing his system was too high. It took less than two weeks to get things lined up and get him into surgery.

In that respect, it will likely always be a bittersweet day for us. Even so, it's a good time of year for us to remember what's important.

Playing catch-up

I was home sick yesterday, with a migraine triggered by a muscle spasm in my neck. How fun - NOT!

This morning, I'm back at work, saving the world from insanity - or at least, keeping things moving.

And after yesterday, this week I need to look up a new sign for Acorn - "BITE" - as in, no, Acorn, mommy's toes are not for biting. Mommy's knee isn't for biting either (and the fact that he got enough skin & jeans in his mouth for that to hurt says a lot).

There's another diaper giveaway post coming today too, so be on the lookout for it. I'm sure there are other giveaways I ought to play along with, but nothing lately has struck my fancy. The truth is, there's not much we really need, and we have more stuff than any one family righfully deserves, you know?

Who's the God of insurance?

Because I probably owe him some incense and a thank you.

We have been sweating the end of Acorn's insurance benefits for physical and occupational therapy - 2 hours of each per week has helped him make major progress on getting his gross motor skills a little closer to on-target.

As far as we could tell, the insurance was going to pay for 50 visits, total, this year (where the year starts June 1 with the rest of my benefits), and then we were going to have to get another referral set up just the right way to get medicaid to maybe pay for some of it, possibly.


And if not...it's either pay out of pocket, or depend on his 30 minutes from the school each week to hopefully get us enough information to do it for him ourselves.

We have money. But not that much money.

So, this is a huge hugs thing for us. There are apparently no caps on Acorn's in-home therapy. There've been other things lately that our insurance have done that have surprised us - no arguing about approving his $75 a dose (given twice a day) inhaled meds. No arguing about supplies. No trying to cut our nursing hours. I am baffled - I didn't think my insurance was that good.

And I'm thankful every day for that unexpected blessing.