post

Autistic Is Better Than Dead: Guest Post by Sara Morgan

January 3, 2012 By

Two years ago, my husband’s cousin lost his 20-year-old son to cancer. At the funeral, I kept myself together reasonably well until I saw the friends of the deceased enter the church. I remember thinking that this – the loss of a friend – is not something that any college student should have to deal with. And later, in the cemetery, I saw the bereaved mother standing there bravely, clutching the teddy-bear her son had had as a child. The overriding thought in my mind as I watched a mother and father burying their child was, “Thank God all my child has is autism.”

Today’s post, from Sara Morgan, expresses the same sentiment. Sara and I have two things in common: we are both autism parents, and we are both moms of angel babies who never got to live. In this heartfelt post, Sara reminds us that where there is life, there is hope.

As a mom of a child with Autism ( and one Highly suspected of having Aspergers, but that’s it’s own rant) I seem to get a lot pity, or compassion, or…I’m not always sure what to call it…. thrown at me.Like I’m some sort of saint for not thowing my child in the dumpster because of his Autism. I’m not brave, or special really in any sort of way except that I’ve come to the conclusion that Autistic is better than Dead.

When people see me walking on the street they see me and my 3 children,Faith, Alexia & Gabriel. What they do not see is the 3 I carry in my heart. Angel, Devan & Jeremiah….who would have been Gabriel’s twin. Pregnancy loss has long been a taboo subject, and I have fought hard to keep thier memories alive…how they died doesn’t matter near as much as that they once LIVED. That they will continue to live on in our hearts and our memories, that I will share them with thier siblings, even Gabriel with his autism and his limited understanding will know someone was in there with you….and he has a name, and a place in this family as do all his siblings.

Autism can really be it’s own depresing journey, it has it’s own grieving process, just as losing a child does…..It has the ups, the downs. The times you just want to throw yourself on the floor right along with your child and scream “WHY ME?” At the end of the day I can hold myself together because in the long run, he’s still HERE……I can do Autism…..Autism is Better than DEAD any day of the week….we can work with this! Autism will always be a debilitating condition,My son will always stuggle….but there is nothing more debilitating…more final…than the death of your child, anything else has possibilities.

I have Grown so much since I started these journeys, both as a bereaved mother, and as an autism mom. Don’t look at me with pity, Heck don’t even look at me with pride because I’m doing exactly what anyone in my position would do….I’m picking up the pieces and trying to put them back together and move on the best I can…and that my friends is all any of us can do.

(Photo credit: Sara Morgan)

Filed Under: autism, Children, Death, parenting, Pregnancy Loss, Sara Morgan Tagged With: , , , , , ,
post

A Letter Of Thanks

October 13, 2011 By

Dear Doctor P.,

Hootie And The Blowfish were playing on the radio when the baby growing in my belly died. I could tell from the cramp that tore through my body, from the sudden spike in my body temperature that left me reeling, and from the change in energy that comes from a soul winging its way to another world.

My baby girl, gone before she could be born.

For ten weeks you had brushed me off and dismissed my concerns.

“Women bleed during pregnancy all the time,”  you told me.

In the beginning I listened to you. You seemed so composed and your explanations made sense. You were immaculately put together, with your tailored suits and your perfect hair and your flawlessly applied crimson lipstick. You looked every inch the professional. Anyone looking at you would have had no doubt that you were competent in a cold, calculated kind of way.

I may have felt intimidated by you, but I had no reason to doubt you.

I didn’t even doubt you when, ten days after the bleeding had started, you continued to tell me that nothing was wrong.

Although I believed you, I hated you. I want to make that absolutely clear. I hated your air of superiority and your utter lack of compassion. I hated the way you told my husband – even though I was sitting right beside him – that I was “acting in a paranoid and unstable manner.”  I hated the way you ordered me not to do research on the Internet, as if I somehow didn’t have the right to the knowledge. I hated it when you insisted that an ultrasound would not be helpful, that it could in fact harm my baby.

I despised you and everything you said with an intensity that was almost poisonous.

And yet, I respected you. Somehow, despite everything, you were credible. You made me believe, with medical jargon that was beyond my realm and yet somehow logical, that it was OK for me to be bleeding from Week 8 until Week 18 of my pregnancy. When you finally deigned, in your God-like way, to allow me to have an ultrasound, you effortlessly explained away the too-slow growth and the irregular fetal heartbeat. You even succeeded in convincing me that I was crazy to think my baby was dying.

As I lay there on my kitchen floor that day, doubled over with pain and the beginnings of grief, with Hootie and his gang mockingly blaring out, “It’s gonna be a bright, bright sunshiny day,” I couldn’t help wondering what the doctor would say now.

When I walked into your office and told you about my dead baby, were you still going to somehow convince me that everything was OK? Were you going to say, “Oh, don’t worry, it’s perfectly normal for women to lose their babies after ten weeks of untreated complications?”

I want to thank you, Doctor P. Whether or not you contributed to the loss of my baby, and to the unbearable heartbreak that my husband and I endured, I am truly grateful to you. You opened my eyes, you see. You taught me not to trust the professionals I turn to for help, to question everything I hear, and to view life through shades of scepticism.

Thank you, Doctor P., for making me grow up.

This week’s Indie Ink Challenge came from Kelly Garriott Waite, who gave me this prompt: Take a person – in your fiction or your life–whom you despise. Now write a piece–a letter, a scene, whatever – showing love, admiration, or respect for that person.
I challenged Diane with the prompt: Tell the story of a telemarketing call that takes a very surprising turn.

Filed Under: Doctor, Indie Ink Writing Challenge, Pregnancy, Pregnancy Loss Tagged With: , , , ,
post

Endings And Beginnings

August 4, 2011 By

It was bittersweet, that freezing cold day in February, 2003.

I was at a conference with a number of my co-workers, which really meant that I was subjected to a day of boring talks that I had to pretend to be utterly fascinated by. The trade-off was the free lunch, and I have to give the conference venue credit: it was outstanding grub.

After lunch, we had a bit of free time before the session reconvened. I decided to check the messages on my cell phone, so I turned it on and started fiddling with the buttons to get to the voicemail. When it vibrated in my hand, I almost jumped out of my skin. The incoming call was coming from a number I did not recognize.

Gerard, calling from a payphone. At the hospital, of all places.

He was calling to deliver bad news: his dad had been diagnosed with colon cancer. There was a possibility that it had spread to the liver. Tests were underway to find out.

I whispered a few words of explanation into the ear of one of my colleagues and ran to my car. An hour later, I was giving my father-in-law a hug at the hospital. He was looking remarkably cheerful for someone who had just received dire news. Either he was using humour as a coping mechanism, or the doctors had done a really good job of giving him hope.

Much later that night, Gerard and I left the hospital and went home. While he was Googling something-or-other, I locked myself into the bathroom and surreptitiously peed on a stick.

Three minutes later, the stick told me that while one life was fading away, another one was just beginning.

At our first ultrasound a couple of weeks later, we held hands as the technician showed us our baby on the monitor. His heart was beating solidly; and even though he was about the size of a grape, we could clearly see his little legs waving around.

Everything looks great, the technician told us. This is a good-looking baby.

Gerard and I finally allowed ourselves to feel a lick of hope for the first time since we found out we were having a baby. We had suffered a miscarriage several months previously; we had not really trusted that we would actually get to the point of seeing a healthy baby. We had several weeks to go before we would pass the point at which our previous pregnancy had failed, and we would hold our breaths until then. But seeing a strong, healthy baby was something that we had not experienced.

After the ultrasound, we drove straight to Gerard’s parents’ home to see them. Now that we had gone through the ultrasound, we felt OK about telling them. We showed my father-in-law the ultrasound picture, and said to him, “If the baby is a boy we’re going to call him George, after you.”

With his eyes flashing with humour, my father-in-law said, in his characteristic Irish brogue, “Aaaah, don’t do that to the poor child!”

Less than a month later, I stood in the cemetery with snow swirling around me as my father-in-law was laid to rest. As I said goodbye to one George, my hands protectively cradled the belly in which another was growing .

As one life ends, another begins. And the spirit of the old lovingly watches over the soul of the new.

(Photo credit to the author.)

Filed Under: Baby, Cancer, Death, life, Pregnancy, Pregnancy Loss, Ultrasound Tagged With: , , , , , , , , , ,
post

The Meaning Of Friendship

April 15, 2011 By

When George was a newborn, I joined an online group for parents of living children who had also experienced pregnancy or infant loss. Having gone through two pregnancy losses, I was paranoid about everything connected with my new baby. Did those sniffles indicate a cold or something more serious? Why wasn’t he nursing? Was that little bump to the head going to cause permanent damage? Was I actually going to be able to keep this tiny scrap of a human being alive?

In the online group, I found a home – a group of women whose experiences, while all very unique, gave us a common ground. We consoled and comforted one another, offered advice and reassurances, laughed and cried with one another. We became friends. And as you find in any group of friends, there was drama. We had disagreements and conflict. Some people left never to be heard from again, others left and came back.

Seven years on, the core group of us are still friends. The online group itself is not as active as it once was, because most of us are friends on Facebook, and we communicate that way. But we are still as much of a support for one another as we always were. Through seven years (and in some cases, more), we have seen each other through births and deaths, marriages and divorces, relocations, bankruptcies, illnesses, post-partum depression, and even a prison sentence. We have been there for each other through everything.

In 2007, George was diagnosed with autism. As I dealt with the implications of this, including my own emotional fallout, my girls were there for me. Their love and support helped keep me buoyant at a time when it would have been so easy to drown. These amazing women, who had already helped me stay sane through relationship and financial problems, the loss of my father, and my pregnancy with James, once again banded together to help me cope.

And then, a little over a year ago, I found another online group of friends – these ones parents of children with autism. They wormed their way into my heart in the same way my first group had. Although the general conversations centre around different issues, the sense of love and support is present in both groups. My autism friends have been part of my life for substantially less time, but they have helped me over so many hurdles. They tell me I’m a good Mom when I’ve struggle to deal with George’s behaviours. They celebrate with me when he achieves a milestone, and they commiserate with me when a stranger in a grocery store says something ignorant about my child.

Both groups of people are brutally honest in their opinions. They have the strength and the integrity to tell me what they really think, instead of telling me what they believe I want to hear.

From the two groups combined, I have met exactly three people in person.

Occasionally, someone makes a distinction between online friends and IRL (“in real life”) friends. To me, there is no such distinction. Just because you communicate with someone primarily through email or Facebook, that doesn’t mean they are any less real. The only word in the equation that means anything to me is “friends”. And that is truly what these people are. I cannot imagine my life without them. I do not know how I would have weathered the storms of the last few years if they hadn’t been there to keep me afloat and give me reality checks when I needed them.

This post is dedicated to my friends at PALC_group and Parenting_Autism. Thank you for being the wonderful people you are. I love you all.

(Photo credit: http://www.flickr.com/photos/ilamont/4329364198)

Filed Under: autism, Friendship, life, parenting, Pregnancy Loss Tagged With: , , , , , , , , , , ,
post

15 Random Facts About Me

January 16, 2011 By

Today is one of those days where I don’t really have a topic in mind, so I will steal an idea from a Facebook note I was tagged in, and tell you fifteen facts about myself.

  1. When I was in 5th Grade, my teacher hated me because I was left-handed, and she once kept me after school trying to force me to use scissors with my right hand.
  2. I am adopted.  I was lucky enough to wind up with fantastic parents, and about 15 years ago I got in touch with both of my biological parents.
  3. Based on behaviours in George that I recognize in myself, my developmental history as a child, and some difficulties I experience to this day, I am pretty sure I am on the autism spectrum – an undiagnosed Aspie.
  4. 16 or 17 years ago, I accidentally disturbed a bees’ nest and got stung 67 times.  I am now terrified of bees.
  5. I am allergic to mangoes, which is a pity because I actually like them very much.
  6. At the ripe old age of 41, I have finally realized that I would actually like to be a full-time writer.
  7. I have this weird recurring dream in which I am chased by a giant teapot.  Seriously.  You can’t make this shit up.
  8. Despite my constant whining about my commute, I kind of like my daily subway rides.  It is the only time I get to sit down and read a book.
  9. I bitterly regret not flying to South Africa to see my Dad before he died six years ago.
  10. Every year at Roll-Up-The-Rim time, I drink way too much coffee.  I always think that by the law of averages, if I buy enough coffees, sooner or later I will win the car.  In ten years of trying, I’ve never won anything more ambitious than a donut, but I am an eternal optimist so I will keep trying.
  11. My first pregnancy ended in a loss early in the second trimester.  I always think about that lost life, and how if that pregnancy had worked out, I would not have George today.
  12. I buy lottery tickets every week, because someone wins the jackpot – why shouldn’t it be me?  A few weeks ago, I won $120.
  13. I hate olives and eggplant.
  14. There is only one brand of shoes that I will run in: New Balance.  When I’ve tried other brands I’ve always regretted it.
  15. I think Barney the Dinosaur is the most annoying children’s TV show ever made, followed closely by Max and Ruby.

 

Filed Under: postaday2011, Random Tagged With: , , , , , , , , , , , , , , , , ,