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

Posts tagged ‘infant death’

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.

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.

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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