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 ‘friends’

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

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No Friends = Broken Heart

The Gap that Elijah lives in seems to be getting deeper. The difference between him and his peers is becoming a very obvious thing. Not just that busy two year old, but that not quite normal five year old. Elijah isn’t the poster kid with Autism (no one is) his hyperactivity is another part of him, not an Autistic trait, and its so big: he can’t sit still, he can’t concentrate on tasks, he can’t not be moving, it’s exhausting

For the last year he’s always been the busiest kid in his swimming class for kids with Autism. People notice right away, people make judgements, or they’re not sure what to think, but they notice. Always busy, always running around, sometimes not listening to directions, sometimes he gets on a path and gets rough or over excited, sometimes he grabs at things or people inappropriately, and sometimes it all goes to hell, and he pulls a tantrum with low register crying and high-pitched screaming.

Having been in Saskatoon just over a year we’re just on the verge of making some good friends. Petra can find a best friend in 2.5 seconds and Natalia will happily tag along. Elijah though is hard, not really one to make conversation, or know exactly how to make a friends, he often just plays by himself. Lately though, he has been trying, but he’s often too close, and too loud. His “friends” have to play his way, and be able to tolerate his scattered train of thought, his loud voice, and be tolerant of the fact that he’s all of that, and be able to get Elijah to back off when he’s overbearing. Tough gig for another 5 year old. So right now Eli has no friends.

It’s always made me sad, but I wondered if the sadness was mine, that it didn’t really bother him, and that I was the one that felt he needed friends. Then he spontaneously drew me this one day before therapy.

Elijah has speech therapy on Tuesdays and Petra has ballet/tap. He drew this because according to him: His class has no friends, because he has no friends, and Petra gets to go to dance and have friends. Then later he tore it up. I think he realizes that he doesn’t have friendships. I liked it better when I thought he may not have noticed. I feel so sad for him. I’m not exactly sure how to help him make friends.

You see he can’t really follow a structured program, his swimming lessons are one on one because in a group he wouldn’t be able to follow along, or he would distract the other students, or he would need so much attention that the teacher wouldn’t be able to effectively teach the other students. Petra and Natalia have ballet and they have made little friends from among those girls, they also play with the kids that come to my natural food co-op sorts, and with kids that have come to our house to visit. Elijah attends a one on one swim class, him and a teacher, it’s great, just what he needs to learn how to swim, but it doesn’t allow for any peer interaction, and it’s the only class offered to kids his age through Autism Services. Kyle and I have been racking our brains to think of an activity he could join with other kids. Soccer?, no, he’ll run away or into other kids, Cubs?,no, we’d have to find a group that would take him and I can’t bear being kicked out, Dance?, no, he wouldn’t follow instruction and I don’t think he’s interested, Horseback riding?, no, not very social and the only place that offers therapeutic riding is 2 hours away, Cello?, Could he follow a class and sit to learn?. I just don’t know. Today I signed us up for a home schooling art class, the teacher has had autistic kids before, but still were going to the first class as a trial. I hope it goes well it would be nice for Eli to have another ‘something’ to do.

I want so much for him to have as normal of a childhood as possible, I still hope that he will work hard, I will work hard and he will be just a bit odd, but that he’ll go to university, get a job, move out…be independant. I want him to look back and think: I made because I was given every opportunity to be treated as everyone else, to be treated as a person, as Elijah, not just as someone with Autism. But more and more I wonder if this is possible at all. His quirkiness makes it impossible not to tell people, it’s obvious that he’s not just a normal kid, and once you know he’s not normal, it’s very few people who can treat him in a way that he needs to be treated without any condescending-ness, or judgment, to engage and share experiences with him. Most people just sort of avoid it all together because they’re not sure how to be around him. When people ask how to be around him, it’s a hard for me to give them any one set of rules, everyday is different. I am grateful for those who do want to try though, really very grateful. I wonder if I’m any good at being what he needs, and, oh how I want to be.

I feel so inadequate these days. I know how to provide the things he needs, a home, food clothes, even extras like toys and video games, but not the things that make life so wonderful. Friends, hobbies, the opportunity to try new things. I can’t just go plunking him into groups where he’ll fail, and I can’t keep him at home to be his only friend. I used to think that I would make it work, that I would do whatever needed to be done to give him the chances to grow and work towards as full a life as possible. But what do you do when you don’t know what needs to be done? What do you do when you see yourself failing and don’t know how to make it better.

Some days when I’m feeling particularity sorry for myself I wonder if we have the worst kind of Autism. Now, I know we could have it worse in all kinds of ways, but I wonder if the worst kind may be the kid with potential. The worst kind because if I don’t find a way to hone his potential then it’s my failure he’s not more.

It’s getting to be that very soon we’re going to have to explain to Elijah and Petra that he’s different. To put it all on the table, so to speak. I know they have heard us toss around the word Autism, but neither of them really knows what it is or what it means in our family, but it becoming obvious, even to both of them, that he’s not the same. Today Petra wanted to know why she couldn’t join Elijah swimming class, and why we we’re looking for another activity when he already get’s to do swimming and therapy, and she only gets to do dance.

Well there’s a chicken in my sink that needs plucking. That’s as good a way, as any, to end this, since I don’t really have any neat wrap up.