Friday, February 17, 2012

Path To Grieving

I've thought about this post for a long time,  I've started it, and deleted it several times, and may several more until I feel comfortable enough to post it, if I ever do.  There's nothing comfortable about death, and if you're on the spectrum, I find this is especially true.  The words that I write here I could never ever speak out loud.  The discomfort involved would be too great.  They'd never leave my mouth.  The air would travel up my chest, to my throat and get stuck in one big bubble of sadness and awkwardness.  I would feel equally uncomfortable if anyone tried to talk about their feelings with me.  It would be intolerable.  I always slink through February 17th in hopes that my husband (who has a long history of not remembering important dates)  does not remember what today is.  If he does, he will get all emotional, want to share that with me, and I can't.  I couldn't then and I can't now.

Today, 7 years ago, I gave birth to a daughter named Brenna Hope that was stillborn.  She had a rare condition called Anencephaly .  It is basically a birth defect where the spinal cord never fully forms, so the baby never grows the entire brain, or cap of the skull.  The baby is alive and kicking while still inside the womb, but cannot survive once born.

I remember the doctor's visit all too well. It was after the sonogram was taken, twice.  No one would say much during the sono and the doctor called me after the second one for an appt that was out of the usual schedule.  It was an odd situation, as my doctor had a stutter, and it was a pretty severe one, at that.  The more nervous he was, the worse his stutter... So picture me in his office as he has to tell me and my husband that our baby (at 7 months gestation) will not live.  I never thought the sentence would be able to leave his lips, as I sat there in agony trying to guess his next word he was trying so desperately to get out.  I just wanted to know what was going on with my baby.  The room starting spinning, and I began to get dizzy.  I couldn't hear the words after I heard 'no brain' .  My boys were beginning to act up, (as ASD kids do) so I took them out to the car while my husband talked to the doctor.  I didn't want to be in that room anymore.  I didn't want to talk to anyone. 

 My husband and I made the decision to carry on with the prenancy until I went into labor, which happened at 34 wks .   We were prepared for her arrival. I bought a few outfits.  One for the hospital, one for pictures (which were graciously taken for free by the hospital's photography) and one for burial.  Bonnets were a must to cover the disfigurement.  My mother in law made her a quilt to be buried in, as well as an identical one for us to keep. We had a coffin made for her.

We had a viewing and a small graveside service.  I appreciated everyone's thoughts and efforts in attending. The make up artist who donated his time to make my angel look presentable, the mortician who lowered his costs to accommodate our budget.  It was all very thoughtful.

I did not cry.  Not until I got home. I did not want my husband's hugs.  I wanted him to stop crying. I wanted him to leave me alone.  I wanted the pain to go away.  If you've never lost a child, then you cannot fathom this kind of pain.  It is unlike any ever felt.  I had no way to process it.  It was stuck inside me, swelling without any idea of how to release it.  I thought my husband was being too dramatic, as his grieving began the moment the doctor uttered the words 'is not compatible with life'.  I did not. Logically, I processed it.  Intellectually, I knew.  I never was in denial.  I joined the only on-line group I could find for this kind of birth defect.  I could not connect in any way emotionally with these mothers.  So, I carried this pain with me.  There was no way of getting rid of it, of releasing it, or of easing it.  I had no intention of going to candle light vigils for lost children.  It was not going to bring mine back.  It was just a display of emotion to me, and that I found un-useful.  I wished that I knew of my AS, back then. I would have understood why I grieve differently. I'd have been more compassionate and supportive of my husband's need for grieving and affection during this time.  Maybe, I would have been more prepared for the delayed wall of utter sadness, despair, and agony that awaited me not long after the burial. 

I wonder what kind of cake I'd be baking today, if things turned out differently?  Would I be wrapping barbies, or legos? Would she have a party with friends over?  Maybe, she'd be like the majority of us in or family and be on the spectrum.  Or, the harder questions.. Would I have had enough time for her?  Beans was a baby when she was born, so there was no way for me to know that he was profoundly autistic. 

I've heard people call autism a 'tragedy' right there in front of their living, breathing wonderful little children.  I tell you I know for certain that autism is no tragedy.  I know tragedy.  I have a keepsake box clothes, plaster footprints, and a picture on my nightstand of what I would call a tragedy.

The old saying, 'time heals' is truthful.  Every year it does indeed get easier. I am able to share this with a wider audience than those closest to me for the first time.  Even though it is in writing.  It's not been easy, but I have learned and gained perspective in life.  Children are gifts, even in the difficult moments I remember to be thankful, more patient, more compassionate, more playful. I know how precious they really are and how each moment is to be cherished. 


19 comments:

  1. I'm glad that you posted this today. A dear friend of mine just lost a baby. She was born at 28 weeks with a fatal form of skeletal dysplasia. Thank you for being willing to share your pain. I'm sure it was an incredibly difficult post, but I know there are other mothers out there that are experiencing what you went through.

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    1. Thanks for commenting. I'm very sorry to hear of your friend's loss. It was hard to post, and it took me 7 yrs to get there. Please keep remembering to check in with your friend and continue to keep the friendship as it had always been. My friends didn't know what to do, so they avoided me and it was the worst thing that they could have done. I just wanted things to go on as they always did. If your friend needs someone to talk to to feel free to DM at twitter and I'll send my email. Lots of (((hugs)) for you both.

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  2. Thank you for this - I'm very sorry for your little one's death. I cannot imagine what that must have been like to go on with the rest of the pregnancy knowing what you knew. I don't think anyone knows what they will do unless or until confronted by that situation.

    There's no right or wrong way to feel things as you pointed out. It is what it is and you deal with it as you need to in order to get through the day. A wise person recently said to me that sometimes the enormity of the loss is so great, your mind can only deal with it in increments.

    I'm glad you shared it and thank you for doing so.

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    1. Melbo, yes it was hard to carry on the rest of the pregnancy with unknowing strangers wanting to know 'when are you due?' or asking my oldest if she was excited about the new baby. It was amazing to me how much those small, usually happy comments were painful, and awkward. What are you going to do? Tell a complete stranger, "thanks for you concern, but my baby has a birth defect and will die." ? You had to smile and squirm as you tried to end the convo as quickly as possible.

      Yes, your friend is correct. We can only process so much at a time. I remember a having a home visit the day after I found out about the baby from the lady that ran our local playgroup. She visited every member and discussed developmental milestones for your child. It was a nice program, but anyway... she sat down and said she needed to talk to me about Bubby's development. I told her what happened the say before. She decided that it wasn't a good time to talk and we'd talk later. Come to find out later, she was wanting to tell me to have him screened for autism. Our doctor said the same. They all knew my boys were not quite typical, but no one wanted to put on the extra burden at that time, which I agreed with. As much as I think early intervention is important, I couldn't have handled the loss and the knowledge of autism at the same time.

      Thanks for your comment. I always like reading them!

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  3. I thank you for this post as well. I lost a child, but did not go to full term. It was going into my second trimester --I did have to have a D&C procedure. My husband at the time and his parents were very confused by my wanting to be alone, and what seemed to be lack of emotion.

    Because of them not allowing me to grieve the way I needed to I was not able to until a few months ago. It happened in year 2000. The people from our church would not leave me alone and said things to me that they felt were comforting, but to me they caused more harm and confusion. It was all very traumatic for me emotionally. I had to push away all of the emotions, I have a problem understanding my emotions anyway, but they were making me feel worse because I was not responding the way they thought I should as a mother who just lost a child.

    I truly appreciate what you have shared.

    Thank you again.

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    1. I think that it is hard if you have AS or are AS-like when something happens that is painful and relies on your social side to find comfort. I found it to be absolutely impossible to share my pain. That wall that is always there when trying to communicate with other people was 10 times higher for this situation. I don't know that I wanted to be alone. Seemed odd, but I wanted to be alone, and connected at the same time. So contradictory. The part that I left off, was that due to not handling my emotions well, I became very depressed and kind of neurotic. I was very unhinged and angry. Almost PTSD-like.

      I appreciated you post you shared a few months ago. It was inspiring to me in that if you could share, I could, too. So, I thank you, as well.

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  4. Thank you so much for sharing. Sorry I did not read until today. Grief is different and I have never understood the way others grieve either. Thank you for explaining so well. I am so sorry for your loss, I just can't imagine losing a child.

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  5. As it is also hard for me to empathize with another's pain, let me suffice to say:

    I cannot possibly understand a billionth of what you have been through. I have no other words of comfort.

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    1. I don't think that anyone can unless they've gone through the same thing. I appreciate your comments, very much. :-)

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  6. Oh my gosh, this post has me sobbing. What you've been through... I just ache for you.

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    1. Awww.. I'm sorry for making you cry! Thanks for your comment.

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  7. I've only just caught up with your posts.
    Grief affects everyone so differently.
    My three aspies lost their mother/wife a number of years ago.
    I think the way they experienced their loss was not understood by most people, especially her family.
    I really appreciate you sharing this.
    Children are a miracle and a blessing, no matter how hard it can be.
    I hope more people with Aspergers show the N.T. world what these HUMAN experiences feel like. So many people think that Aspies are diminished in their ability to experience emotion.
    I want to understand what this feels like for my boys.

    oxox

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    1. That must have been incredibly difficult for you and your kids. I always find it so sad when kids lose their mother, especially young ones. It's true that we grieve differently. Some never really do in a visible way, others do, like me, but way after the event. I think I needed extra help in determining my emotions and letting them out in a productive way. I tend to hold onto so much pain, never knowing how to let it out to another person, so that I may let it go. Pain often turns to anger when held in and mine has, mostly at myself. With aspie males I have noticed it tends to result in a lot of anger that they spew out at others, because they don't know what else to do with the pain they have inside.

      Thanks so much for your comment and for reading.

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    2. Thanks Q.C.
      We've definitely seen a lot of anger and attatchment anxiety.
      Were all still in the fight.
      oxox

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  8. Thank you for this post. I lost a daughter in 2003. Stillborn. My son was born two years and two days later. I sometimes get their birthdays mixed up as a result. People grieve differently. I too could not participate in many grief support groups. Not because I couldn't handle the emotional displays, but because people seemed to want to hold on to their grief and that upset me. I was looking forward to the pain easing up, which, it did, eventually.

    My heart goes out to you. I think like you do to, what sort of child would she have been.

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    1. I'm sorry for your loss. The date of your son's birth is really interesting. I don't know how I'd feel about that. Perhaps, bittersweet.

      I also didn't like that the parents in the support groups didn't seem to move on. Some were still checking in daily more then a year later. Like me, most had other kids to look after, but were too consumed with their grief to appreciate them. It upset me quite a bit.

      Thanks for commenting. I'm glad you shared your story!

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  9. I can see where this would certainly change your outlook and how you view each day with your children. Virtual ((hugs)) are not enough...

    I am glad to know that each day helps you heal.

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  10. Thank you for sharing this pain with others. My
    Niece lost a child with the same condition in September. I have lost 3 children to miscarriage. You're right in saying time does ease the pain.

    I named each of my children. What is the name of your child. I believe they are in heaven waiting for us.

    Colleen

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    1. Her name was Brenna. I don't believe in an afterlife,but I believe I did the best I could for her short life here on earth. I'm sorry for your losses and your niece's loss. :(

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