living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Archive for the ‘Infant Death’ Category

Certainty

Last night I woke nearly hourly, at 9 months pregnant (tomorrow is my due date) that is hardly abnormal. I either had to pee or my hip was screaming at me to roll over. At 5:20 I had to turn, I noticed the baby wasn’t moving and thought “Well that should make it easy to fall back asleep”, but as a parent who has had a baby die at term in utero I placed my hand on my belly to wait for him to move. I fell asleep again before I noticed any movement.

This morning when I woke up around 6:15 I noticed he was still very still. I calmed the panicky voice in my head, rolled on to my left side, and waited for him to move. The alarm to get up and get the kids ready sounded, and I could wait no more.

“No matter” I thought. “I’ll get the kids dressed and make lunches. Surely, the distraction is what I need, and moving around is likely to get him rolling about.”

I made it down the stairs, peered into the kitchen and told Kyle right away, even though I had told myself I would wait to worry him. Kyle made me a coffee, that the toddler took an infinitely long time to stir for me. I wanted that coffee now. I took a few sips, then decided downing the whole thing at once would be best. A hot belly full of coffee would warm his toes, he would move, and that would be the end of the shallow breathing I had adopted. Fifteen minutes later, as I made grilled cheese and washed strawberries for lunches, there was nothing.  After three glasses of full strength orange juice with no indication of a slight wiggle, I couldn’t take it anymore.  I couldn’t pretend to be okay in front of my kids, who were being particularly sweet this morning.

I went upstairs to get dressed and called the midwife. I told her our baby was dead, a huge bubble of sobs poured out, she thought I had delivered and I corrected her. Arrangements were made for me to go to the hospital. I stopped crying, and pulled on the first pair of pants I could find, a pair of capris, even though the weather called for long pants.

The school bus had not arrived yet, it was 7:45, and I couldn’t bear waiting any longer. I told Kyle he could bring the kids to the hospital or stay and wait for the bus. He opted to wait for the bus. A flame of resentment flickered up.

I couldn’t find my glasses, so I borrowed Kyle’s to drive.

As I walked out I told Kyle “Today is going not going to be a good day” and left.

All this time I thought (hoped) any minute now I’m going to get a kick that tells me I’m being ridiculous. It didn’t happen.

The hospital is a 30 minute drive. About 10 minutes in I hit a point of resignment.  It was all over. It had been hours since I felt him move. I was sure he was dead. I’ve never been sure before.

On my third subsequent pregnancy since Kate was stillborn. I’ve had plenty of scares. It was a fear more constant with the twin’s pregnancy, and less so with the last. I made 17 trips to the LD ward with the twins for non- movement, never for such a long periods of non-movement, and usually on the way someone would move, and I would head in just to be sure. With Natalia and Micah I never actually made a trip in to the hospital, or stopped in to see my midwife to be reassured. I feared they would die all the time, but I never felt they had, or were at risk, warranting a trip in.

This baby is a wiggler, perhaps the wiggliest, at least as wiggly as Kate was. Now it was going to be the same end.

Today I thought of things I haven’t thought of this time around. I have every other time. This being an unplanned pregnancy I have spent a lot of time thinking about how I was going to deal with a 5th living baby, not what we’ll do if he dies. Driving calmly without tears, poking at my belly in less than gentle ways, hoping, waiting for him to move,  proving this trip was unnecessary. I thought of all the things I had avoided.

Where will we bury him? With Kate? With us?

I have to cancel a presentation.

We haven’t found a home church, who would do the funeral?

I’m just going to Facebook and Twitter. I can’t bear phone calls. Everyone finds out the same way this way.

Why was God doing this? Two dead babies and a kid with Autism who is currently not adapting well to school? Really what was I supposed to endure?

How was I going to convince the the hospital staff I could not wait for an induction? It would have to be today.

Who would pick up my kids from school? How would we tell them. Would they be okay?

How was I going to be a parent and grieve?

Have we actually settled on a name? Why haven’t we been using it?

Would I call Kyle to confirm he had died from the hospital, or just wait until he got there? How was he going to react?

Arriving at the hospital I let small tears roll from the corners of my eyes. My midwife met me at my car. I shook my head when I saw her.

“Nothing” I said, answering the question of if he had moved that she never asked, “It’s all over”.

She hugged me and walked me in. Calling for the elevator she said we’d know in a few minutes. I already knew.

After a coffee and three orange juices I went pee before laying down, so she could put the heart rate monitor on me. I stared at the curtain track and noticed that a couple of the hooks had come undone causing the curtain to sag in an nonuniform manner.

It only took a minute. A steady fast heartbeat.

“Is that me?” Certain it wasn’t, but I was sure it must be. I was still convinced I was about to get  confirmation of the terrible I already knew.

“No”

I sprang up to sitting.

“Then why isn’t he moving?” shot from my mouth without consciously forming the thought, and a flood of tears I didn’t know I was holding back sprang forth. The sheer volume seemed more appropriate to the opposite news. The midwife handed me my phone to call Kyle. I couldn’t. There were too many tears. The relief and sheer disbelief that I had been wrong still needed to pour out before I could even physically dial. I had been sure.

When I did finally call to say he’s not dead, Kyle made me repeat myself,  the sigh of relief from the other end of the phone told me he was as worried as I was.

So, I laid there listening to the thump of his heartbeat, in the silence, while waiting to find out what the midwife thought we ought to do next, knowing Kyle was on his way. Still wondering how it was possible my certainty was so wrong? Grateful it was.

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He Bit My Face: Losing Touch With God

My blog has been neglected.  I had a goal of posting once a week.  Unfortunately my last few starts have been such heavy and controversial topics, I’m intimidated to finish them, begin writing them, and most certainly to publish them.  I’ve got works in progress about timing for sharing pregnancy news featuring baby death, one about food and why we’re working at self sufficiency featuring nutrition for Autism symptoms, and one that has been floating in my head about Autism, and its suspected causes, featuring why the vaccination debate will never go away.

In the mean time, I’ve met this amazing mom blogger who inspires me.  Somehow, she manages to write everyday.  I don’t know how she finds the time.  I would accuse her of making her kids up, but she speaks from a heart that undeniably has children.   I highly recommend her blog if you have kids, have a child with ASD, have had a baby die, or if you have multiples.  Can you believe we have that much in common?  Oh, and both our husbands are teachers, and are prince charming handsome.  How is that for unbelievable?  You can blog stalk her here, Four, plus an angel

Her posts aren’t always very long, but always packed full of head nodding and the like, and her short post today has inspired me to just write a post, partly on inclusion too, or more like exclusion.  Today she writes a letter to her storytime mom’s group telling them why she’s not going back, and it’s about acceptance.  It got me to thinking about our playgroup experiences, why we quit before we could be kicked out, and how those moms choose not to let me into their circle because Elijah refused to be a part of the music circle.  I was the mom with the weird kid.  This was before our Autism diagnosis.  I wonder how many of them assumed there must be something wrong with my kid, which then got me to thinking about this time at church, which is what this post is about:

Somehow I’ve become a lapsed Catholic.  There was a time when I wondered how people could let that happen.  I was self-righteous, I figured if I could make it to church after Katie died, after having twins, and later with two toddlers and a baby, there was no good reason for anyone else to allow their faith to lapse.  That was until Autism.

When we packed up and made the big move to Chicago we figured we would find community at church, and we did meet some great friends in the young families group there, who are friends still.   Though we were going through the gauntlet with Elijah,( two and a half to three and a half  was my own personal hell) we continued to go to church every week.  He couldn’t sit still, he couldn’t keep quiet, he wouldn’t play quietly during the service.  I could feel all eyes on me when he would scream, run away, or otherwise misbehave.  I was embarrassed.  I couldn’t understand why my kid was so unmanageable.  I was strict, I would glare angrily over at Kyle when I felt he wasn’t doing enough to keep him in line.  I wanted nothing more than for him to be like the other kids there, and I figured by continuing to go every week he would eventually learn.

One Sunday, while sitting near the front, I was holding Elijah, who was trying his best to break free, so he could run around like Max from Where The Wild Things Are.  Frustrated that I was stronger than he was, he screamed, and lunged forward and bit my face HARD, I had lingering teeth marks in my cheek.  I was mortified, people saw, and I imagined they must think, that he is either the most unruly kid in the world, or I was the worst parent.

Soon after that we stopped going to church.  I needed the break.  Somewhere in that break we got a diagnosis of Autism for Elijah.  Sometime later we went back one Sunday for a service.  While taking Elijah out for a walk during the service in the foyer, I ran into a lovely woman who said we had been missed, and wondered what had been keeping us away.  Upon telling her we had been coming to terms with an autism diagnosis for Elijah and we needed some distance,  she said,” Oh, we thought it might be something like that. ”

I died a little inside that day.  It was obvious to everyone that my kid was damaged, I wasn’t ready for that.  I wasn’t ready to know that people were armchair diagnosing my kid with various neurological disorders, either.

Shortly after that we were packing up and moving again.  We didn’t do much to find a church.  The Catholic church believes that church should be experienced as a family, so there’s little in the way of children’s services.   Besides I’m not sure if Eli could go to an unparented children’s bible study, or if he’d be too much, and we’d be kicked out of one more thing.    He doesn’t do mass so well either, it’s too long for him, and doesn’t hold his interest.   We could go to a more intresting chruch, one that’s louder, has more music, a better program for kids, but I don’t want to, I feel like I’m a Catholic.  So now I’m a lapsed Catholic, because I don’t feel like we can go to church.

I miss  going to church, I miss the communion with God, I miss the quiet moment dedicated to prayer.  I miss believing.  Over time , I’ve come to worry at the possibility of no God.   In some small round about way Autism has stolen my faith, along with my energy, patience, and the parent I imagined I would be.  No God means no Heaven, and no Heaven means no future with Kate.  Autism, it seems, is slowly stealing her away as well, it’s too unfair. I pretend I still have faith. I cling to it with hope, that in saying it out loud it might make it true, but I worry about nothingness with a dread I can’t even begin to explain.

So I stand at this crossroad wondering what to do.  Give up being a Catholic for a church we might integrate into better, give up church, or start going to a Catholic church again and pretend the eyes on me aren’t there, when Eli starts making sound effects during communion prayers.  I’ve been standing here for some time, and I imagine I’ll stand here a bit longer, losing my faith all the while.

Living A Romance, Not With A Romantic

I am lucky, I really am, I have this amazing husband, but if there’s one thing he’s not, it’s romantic.   Seriously, we don’t celebrate Valentines Day, or our Anniversary in any sentimental way.  We’re too practical.

I know a friend who flew to Vancouver secretly, there and back in a day,  so he could present his bride with a blue Tiffany’s box on their wedding day.  I dream of stuff like this, but it’s not the stuff that Kyle is made up of.  Heck if we get in a big argument there aren’t even flowers when he gets home.  I can’t actually remember the last time I got flowers, it was either for my Anniversary, or Micah’s birth, but not both.  Even his flower choices are always practical, mixed bouquets because they last the longest, and cost less than roses.

When I was pregnant there was no way he’d ever make a craving run, and there was no sparkly present from a small box when I delivered our babies.  He is not with out his romantic gestures, while dating I did get a whole pile of roses once, and for our tenth anniversary I did get sapphires, though I really wanted a Parisian vacation, the sapphires where a delightful surprise.

He’s not a man of grand gestures, or public displays of affection, nor though, is he a burly man’s man. It’s just really easy for us to get caught up in the daily task of parenting, and forget that we are also a married couple.  Our needs take second place to those of our children.  We’re also in the thickest, most time intensive part of parenting.  Currently we have 4 kids, 5 and under.  It will ease over time and there will be more time for us, as our kids become more independent.  For now though, we can go a whole day without stopping to hug or kiss each other.

And despite all of this, despite, my wish for the husband strait out of a romantic comedy.  I believe I have a love greater than most.  I never worry that our love will fade, or that we may not make it.  I know we are solid.  In talking with some other women, many have  spoken of the relief of having their spouses go to work,  and on those blissful business trips.   Life is easier when he isn’t around for short spells some feel.   I, on the other hand, would prefer to have my husband home with me everyday.  I get the driving you crazy because he does things differently than me bit, because we have that same issue, but I still would rather look up from my incorrectly made lunch and see him across the table.

There was a time when we would languish in each others arms on the sofa for hours, and wake up with our bodies tangled together.  Now there are only brief moments on the couch together, and we never wake up  pressed against each other like two spoons, because some small person is invariably in between us.

We have been through some terrible things, things that split marriages apart for others.  We met at 17 and 19, and married young at barely 20 and 21.  We made it through living well below the poverty line while Kyle finished grad school, we came out the other side after the death of a child, we’ve dealt with stressful family dramas, we overcame an international move (twice), and we continue to persevere while parenting a sparkling boy with Autism, even though we believe very different things about the cause of it, and have had serious head butting issues on how best to treat it, and parent for it.

We’ve taken on each of these challenges as they come, one at at time.  We’ve faced each of them, we use them to strengthen our commitment to each other, and to love regardless of how empty life can seem.   We haven’t allowed the wedge, that can be driven between people, get to deep between us.  It sneaks in some times, and it can be difficult to remove, but we do.  The greatest part is, it’s a joint effort, we pull each other together, each of us, equality.

I know I am loved a great, deep and meaningful love, and that is an immense gift.  I live a, not always so happily ever after, fairytale romance.

Thank you Kyle for loving me, ever flawed, never perfect, but always in love with you.

Death and Christmas

I’ve been thinking about this post again, I could write something similar and new, but it would just be regurgitation.  This is the first Christmas without my Babby, and while I likely feel the loss less than many in my family, I miss her.  There will be no cheery Christmas phone call this year.  It makes me very sad that we were here in Saskatchewan last year and didn’t go for Christmas.  Why?  We weren’t invited, I didn’t want to be imposing house guests, my Babby was worn out and my kids are BUSY.  There are a million excuses and none of them really answer the question, because they are all full of their own type of holes.  We can’t change the past.

As we live on the holidays will likely continue to have more people we miss.  That’s part of the inevitability of life, we all die.  Some before they should, some after a long life, some after injury, sickness or disease where death itself is a small mercy, but they all leave an emptiness behind.

I hope your Christmas is merry, and happy, ours this year promises to be.  Petra checks the calendar everyday and announces how many more days.  Elijah keeps telling us “Don’t forget to buy me a present”.  We have treasured family coming to visit, and there are presents a plenty for under the tree.  This year the girls are getting Princess American Girl type dolls.  Aurora for Tal, and Ariel for Petra (or maybe Tiana she keeps changing her mind, we have both for her, but one is going back), and there’s another Tiana doll in the closet for Kate.  Every year we buy something that we would have bought for her this Christmas and give it to charity.  It’s a nice way to include her in our buying, and it will make some little girl very happy, but the sorrow in thinking about the joy three princesses would have brought pokes through sometimes.   Still our kids have more than they need, and giving to a family with less is a great lesson for them, and that friends, is one more way Katie has blessed our family.

Merry Christmas to you!

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First Posted Dec 18th 2009

Katie’s Christmas Legacy

Seems a few people I know are experiencing grief in a big way this season, it’s the first holiday after the death of their loved one.  I wish there was some way for me to bear it for them, because it really is so hard.  The world is happy, full of mirth, joy, and thanksgiving.  People are down right jolly.  When the one you love isn’t here, the contrasting darkness of your life feels so bleak, and almost shameful.  People still ask “Are you having a good Christmas?”  “Has Santa been good to you?”  “Did you get what you want this year?”  And the answer to all these questions is no.  Yes, even in sadness and in the mist of grief there are moments of light and joy, but they are breaks in the darkness, not lasting light.  A good Christmas would be with all those we love, that they would be alive, and celebrating with us.  That first Christmas after death  can be downright awkward.  Stuff your feelings, pretend to be happy, so you don’t bring others down.  Perhaps what those of us who can feel the joy in the season should be doing is lifting others up, not in a “Come onnn, cheer up!!” sort of way, but in an understanding ” I know this must be hard for you, but I love you” sort of way

This is our fifth Christmas without Katie, and still it’s hard.  Yesterday she was on my mind in a big way.  It’s not the same debilitating I can’t get off the couch, or why don’t we have more Kleenex sort of day anymore.  Having other kids now helps tremendously, they make you find joy.  But there was an emptiness in our house yesterday that doesn’t usually permeate the forefront of my thought.  I think knowing that the Christmas service in Edmonton for parents who have lost a baby was yesterday, didn’t help.  I had hoped that in being close I would make it there this year.  It really is a nice way to remember, how much is lost to some parents each year.  Kyle has been witting his exam, counseling students, and attending meetings about some ridiculous work bureaucracy, plus we had just made a trip to Edmonton last week, and therefore we just couldn’t swing it.

Witnessing, or knowing about new grief among my friends this season is hard.  It gets better, but constantly being told that that future is what we should hold on to, sucks, because the right now is miserable.  I think you have a right to be miserable if you need to, a big hole has been ripped open in your life, and pretending it’s not there does nothing to help repair it.  I wish I could find the quote, but I once read a quote that said essentially this.  God could mend your heart quickly with large lose stitches, but it would just tear open again, so instead He works slowly with small tight stitches, it hurts more and takes longer, but when He is finished it is lasting work.  You’ll always bear a scar, but your heart will hold love, hope and joy again.

So my friends, Lauren and Rob, Janine, and Jenn, and those of you who have lost someone you love this year, go ahead and have a hard Christmas, be lonely for the ones you love, cherish the breaks of light and feel joy where you can, but be true to how you feel, so that your stitches may be lasting too.  This scared heart is praying for you, and perhaps part of Katie’s legacy is understanding that sometimes you just need to grieve.

Because of Her

Our lit candle

I have no idea how many candles have been lit tonight because of Katie. I don’t think there is a way to know, but I do know it’s more than I thought. There are all of those from the comment section in my last post Light it up, but the word of mouth numbers I can’t count.  Everyone (well nearly) is on Facebook these days, and most people I know had some sort of message about lighting a candle tonight.  Some from people I didn’t expect, many from people who have never lost a baby.  And from the comments of friends posts were friends of theirs who vowed to light candles as well.  How lovely.

I think the most rewarding consequence of having a baby who died, is the community I have of friends who have shared their losses with me.  A sadness shared makes for a lighter heart, I think.  I know of three more people who share my sadness now because of my Facebook posts about October being baby loss awareness month.  I can’t tell you how honored I am to hold your children in my heart with Katie.

Today could have been a terrible day, full of tears, instead it was beautiful, I felt supported and truly loved.  Today was beautiful.

My good friend Tricia, who’s Sons Ryan and Joshua also died the same year as Katie, wrote this to me tonight

Remembering Katie with you tonight and although I wish we had no reason to know one another and that our sweet angels were here with us I am so thankful she brought you into my life. ((Hugs))

And I feel exactly the same .  The people I know because of Katie are special indeed.  They held me up when there was no strength left for me to hold myself up.  They wiped away tears, gave me a safe place to laugh again, and brought me back from a place where no light shined.  They are the women of AAHH/OATH, Parent Care and those who share their stories with me.  Because of her I have friendships of great meaning and substance.  Because of her I am more compassionate to those who grieve.  Because of her I love more deeply.  Thank you Katie.

Stillborn

I carried you in hope,
the long nine months of my term,
remembered that close hour when we made you,
often felt you kick and move
as slowly you grew within me,
wondered what you would look like
when your wet head emerged,
girl or boy, and at what glad moment
I should hear your birth cry,
and I welcoming you
with all you needed of warmth and food;
we had a home waiting for you.
After my strong labourings,
sweat cooled on my limbs,
my small cries merging with the summer air,
you came. You did not cry.
You did not breathe.
We had not expected this;
it seems your birth had no meaning,
Or had you rejected us?
They will say that you did not live,
register you as stillborn.
but you lived for me all that time
in the dark chamber of my womb,
and when I think of you now,
perfect in your little death,
I know that for me you are born still;
I shall carry you with me forever,
my child, you were always mine,
you are mine now.
Death and life are the same mysteries

Lenonard Clark

Light it Up

Very little of this space has been dedicated to Katie lately.  It seems that after six years the horrible loss that once took my breath away, that filled every minute’s thought, has become just part of my story.  Dealing with Autism has an everyday appearance in my life, and so it consumes me more.  The fact is that Katie dying was a singular event, a horrible, life shattering, wish it had never happened, if only it could have been different, why God?, singular event.  Six years later I’ve lived through it, and I can be happy again.  I would have never thought that possible in the early days (month’s, years?), but it is, and I am grateful for happiness.  I’m not “over it”, as I suspect some would be relieved to hear me say, I’m simply 6 1/2 years through it.

Our darling Kate is thought of often, with joy more often these days, which is nice.  Tonight was Thanksgiving and she was missed.  I can only imagine how she would fit at our dinning room table.  Kyle and I spent some time talking about her this evening, and the truth is, had Katie lived we likely wouldn’t have the kids we have today, we wouldn’t live at this house, and even  our dining room table would be different too.  None the less, I like to imagine her as though she would have fit into this family,and this life.

October is Baby loss awareness month, October 15 is the international remembrance day for the same cause. So I think of her more often this month.  When I log on to facebook about half the people I “converse” with have an emblem for the cause as their avatar.  In fact about 1/2 of my friends, maybe more, have lost a baby, it’s a strong connector.

So whether you’ve lost a baby to miscarriage, stillbirth or neonatal death, or you know someone who has, it is a day to remember all the tiny people who hardly had any time on this Earth.  If you are reading this I’m asking you to light a candle for Katie, whether you knew her or not:

Everyone is invited to light a candle on October 15th at 7pm in ALL TIME ZONES.

If everyone lights a candle at 7pm and keeps the candle burning for a least 1 hour, there will be a continuous WAVE OF LIGHT over the entire world on October 15th, Pregnancy and Infant Loss Remembrance Day.

For more information please visit http://www.october15th.com/

If you have lost a baby there is also a great site where you can post your picture as “The face of pregnancy and infant loss”  it also adds your baby(ies) name(s) to a wall of remembrance.  It is, of course, an American site with American stats, but is incredibly moving. http://www.iamtheface.org/

And hey if you are going to light, or lit a candle for Katie it would do my heart some good if you say so in the comments box.

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What if it’s not?

I bet you can complete this phase thousand of pregnant couples have likely uttered today alone.  It doesn’t matter if it’s a boy or a girl as long as it’s________.  But what if you get the gender you were secretly hoping for, but not a healthy baby. What if you don’t find out that your baby is imperfect for years. What if there was no screening test for your babe. What if there is? If you want a healthy baby, and that’s all that matters, you best adopt, and not some beautiful baby, better to wait 5-8 years to be sure.

You see we all take the gamble when our sticks turn blue, or when the newborn is handed to us. We gamble that our babies will be healthy through pregnancy, and be able to survive labor, then we gamble that our newborn exam will be just fine, and then we gamble that they will have a healthy childhood.    And just what is healthy? Is blind okay if everything else is fine, is autism healthy if the body is fine and there’s no struggle for life, or are we really taking about trisomies, childhood cancers, and sudden life robbing illnesses.

I know a lot of families who all got a boy or a girl, but not the perfect child they imagined and it has nothing to do with their parenting.  We’re seeing a greater reduction in birth defects, so the news is good there, but the rates of childhood cancers,  ADHD, Ashma, lethal Allergies are on the rise, and since it’s my specialty I can give you stats for Autism: 3 in 10,000 kids in 1950, 1 in 1000 in 1980, and today the rate is about 1 in 100, or 110, depending on where you get your information, and if you have a boy 1 in 80.

This wasn’t meant to be a scare tactic entry, but something is going on, it can’t be denied, the debate on what is heated and long, and not for this post.  It’s not for any one post, whole blogs explore it, Scientists are devoted to it, and I don’t think there is any one answer.

Counting on the healthy baby as the only thing that matters may be narrow.  Because the love for the baby you didn’t want is just as strong, and will shape you in bigger ways.  Simply, instead of wrapping what’s important in a cliche saying, commit to loving the baby who’s born to you, for who ever she is, for as long as she’s yours.