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.