Remembering Her First Kick

I took this leave of absence from e-life to check in with real life. Part of the checking in was work-related. I attended a conference, a conference I attended with DH two years ago when I was pregnant with Caitlin. A conference which was also the time and the place where I first felt her kick. She didn't have a name then, but she made her presence known. It was bittersweet for me, because we had recently received the diagnosis that our child had DS (Down Syndrome).

I was a mother who had hoped for a "healthy child" and not a child with DS. Do you know the shame in that? My strength and my weakness is that I work to be honest with my feelings and look squarely at my thinking. I recognize that other parents had different reactions, and I won't invalidate those feelings, but I also will not invalidate my own feelings. I am not a bad person because I was overcome with fear--turns out I'm normal. What probably was less normal, was that I acknowledged how I was feeling. And I was incapable of hiding it. So, when others judged me, they did so with some evidence. It's a painful road.

When Caitlin was born, I was overwhelmed by loving. Not love as a noun, but love as a verb, the powerful act of loving. That un-named force that bursts out of you. I was still very frightened of DS, but this loving force made me believe that I could by sheer will fix anything, and protect against anything. Me and DH became focused on helping her be happy and keeping her healthy. But, that was not to be. She died.

The physical and emotional memory of Caitlin's first kick is another step forward in this grief journey. A step forward by pausing to ruminate over the past. I sat on benches and stared a trees and birds. I surrendered to the desire to return to the past, when she was alive and there was still hope. Hope for redemption for fearing her DS. Hope for watching her grow and celebrating her successes. And simply celebrating her. Hope for an active role as a mother. Hope for--as DH said so many times "to bring her home and find out who she is."

I opened my mind and my heart to revisiting the past, and making peace with my feelings. I was supposed to be reflecting on ways to improve my profession, but I was in this place where she kicked, and I felt

Joy

and

Sadness

One would probably prefer a romantic view, but every parent desires a healthy baby, and so joy and sadness were siblings in that first kick. One might imagine that any baby is enough, and I'm here to tell you that that is mostly true. It's also true that there is immense and seemingly insurmountable sadness that a parent feels as the dream of raising a child gives way to fear. Most parents experience grief with the birth of a child with special needs; grief for the life they hoped for their child to have, in effect, grief for the child they thought they were having. It's normal, but their family and friends are the last to hear of this expression of grief. Why? Because it's not acceptable. A parents' normal, expected grief, is misinterpreted as a lack of the ability to love. It's not true.

So, the parents suffer in silence with questions. Normal questions and reasonable fears. Will my child be able to take care of herself in adulthood? Will others treat her well? With love? With disdain? Will I be enough for my child? When you have a healthy child you will likely have the luxury of saying "goodbye" in death knowing you did the best you could. And you trust, that they will take with them what you took from your parents. You were OK, and so shall they be OK. When you have a child who is mentally retarded, you fear the unknown. You can trust in God, but there is plenty of evidence that others will mistreat or not know how to love your child. I can't go on. It's too painful. (If you are feeling the need to bible-verse me here, please refrain. It will hurt more than heal. Thank you.)

I breathed differently for several months, since the sensation of her first kick. With each inhale, I felt hope for the life I carried, and with each exhale, I felt hopelessness for the care for her life that I could not control. I regret those prenatal tests--the tests everyone spouts are so important. Tests that help parents make decisions for their children's future. I had no idea what few decisions I would have the privilege to make. She died.

The work conference was a time warp for me. I don't remember the words of wisdom shared by my peers in their presentations of research, because I was in this place where Caitlin was alive and not knowing how it would turn out. And I was wishing, desperately wising that I still didn't know how it would all turn out.

I miss you baby girl. I miss loving you in life. I am forever your mother, and I miss you. I'm sorry my old eggs gave you DS. If I could change it, I would, but I am powerless. And that is the worst truth ever, to know that as a parent, I could not fix it. I am powerless.