Sunday, May 24, 2009

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




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.


  1. Oh Leah! This post is real and so heartwrenching. Zoe has CP and was blind, and deaf. I know that it was caused by a trauma and is in no way the same as your struggle. But that helpless feeling, that not knowing (with any certainty) if you truly did all you could.
    Keep breathing, even if it's just for your healing now.
    Love, Lindsay

  2. Your honesty is beautiful. You express the conflicting emotions you felt during your pregnancy so well, but what comes out loudest is your love for Caitlin - then and now. She is a lucky girl having a mommy like you that loves her so deeply.

  3. When I see pictures of Caitlin, I always think, "God, she's beautiful."

    I applaud you for your honesty. That takes so much courage, to admit that the ideal situation is simply a healthy child when your child wasn't healthy. I think that once you made peace with Caitlin's DS (or at least accepted that you would face challenges because of it), you welcomed a life with your baby girl.

    I'm so sorry you couldn't hold her little body for years and learn more about who she is.

    In my Compassionate Friends group, there is a couple whose daughter died about ten years ago. When she was born, she was perfectly healthy. But at a few months old, she contracted meningitis which resulted in brain damage. She never spoke, walked, or performed any 'task.' But, she lived for seventeen years. Her death was unexpected. She died due to suffocation resulting from a seizure while she slept. Her seizures were controlled by medicine and she hadn't exhibited one for many years.

    My point about my Comp. Friends couple is that they told me they grieved for Amanda twice. First, when she was brain damaged and they realized she wouldn't be the child they pictured. Again, when she died. They had accepted what Amanda could do - smile, give incredible hugs, light up a room with her presence.

    My hope is that you don't feel too much guilt about your true feelings, your feelings of fear regarding the unknown. Your love for Caitlin is so evident in every word you write.

    Peace, my friend.

  4. I'm sorry others have judged you for expressing your fears. I don't try to speak as though I have walked in your shoes exactly but my background is special education and your fears were both normal and valid. Life is different for both the parents and children with special needs- but just because you knew there would be chalenges ahead didn't lessen the love. I wish Catlin were still here because I know you would have guided her through each milestone cheering her on to reach further goals!
    PS I love that you described love as a verb- its so very true!

  5. I am amazed by your honesty, by your writing, by your story.

    I am so sorry for your losses. I am so sorry for ours.

    Parents (in particular) are told so many things about "appropriate feelings" and "appropriate reactions" when they really should be comforted and not judged.

    I hope you find comfort.

  6. This post resonates with me very strongly. The grieving twice bit especially.

    I found it interesting that you now regret your decision to test for Down Syndrome. For a long time after Jordan's death I thought for sure I would need to know if any other child I carried was not healthy. When the time came, a couple of weeks ago, I couldn't bring myself to do it.

    Sometimes knowledge is power. Other times it just shows us how little we have.


  7. She's such a beautiful girl. I just wanted to say that.

  8. I'm out of town, and unfortunately do not have enough time to spend with this post....not the time it truly deserves. So, I just wanted you to know that I'm thinking of you and Caitlin...oh she is so beautiful.
    When I get home, I will sit with this post, giving it the time it deserves, and I'm sure I'll have another comment for you! Love and peace to you.

  9. You are so very brave for sharing all of your emotions. There are many things in life that aren't socially acceptable to share. You beautifully explained that your ability to admit ALL of your emotions is more healthy. You have helped someone else feel less alone with their feelings and have given them the strength to also open up about how they truly feel.

  10. Your honesty is so beautiful and all too true, Caitlyn was such a precious, sweet and beautiful girl. As a grieving baby lost mama, I unfortunately know all too well the emotions of losing a baby, and how us grieving parents are supposed to keep it inside us. I believe that to remember our special babies is to speak their names often, because they are so precious.
    This morning I went to my local beach and wrote Caitlyns name by the sea to honour her memory (I hope you don't mind?) I have taken three photos of her name by the sea, and I was wondering if you would like me to email them to you? If so my email address is:
    I also have a memorial blog, and if you like I would be very pleased to put one of Caitlyn's photos on there. My memorial blog is:
    Kay xxxx

  11. I am sitting in remembrance with you. Caitlin is so beautiful.

  12. from lfca. what a beautiful photo of the two of you. breathtaking. sending warm thoughts...

  13. This is beautiful and full of love. Thanks for writing it and for so bravely sharing it here.

  14. Your Caitlin is so, so beautiful. I'm so sorry your time with her was brief. Her beauty is bringing tears to my eyes.

    I'm so very sorry for your loss.

  15. This post really resonated with me. Thank you for sharing this. We didn't find out Henry had DS until after he was born. I was scared and grieved too. Henry had to stay in the NICU for the first several days, and it was at night when I wasn't with him that the fear and grief and uncertainty threatened to overcome me. But during the day, when I held him, he was simply my baby, warm and wonderful. The fear was still there I suppose . . . hard to keep it out when your baby is hooked up to oxygen and IVs and monitors that beep frequently, but it all seemed more manageable when I had him in my arms. One of the first things they tell you with a diagnosis of DS is that your baby is a baby first. It seemed so much easier to recognize that when there was actually a baby there, not the much loved but still somewhat theoretical baby in my belly. I hated and was ashamed of some of the things I felt, especially in Henry's early days, of the sadness that overcame me, the fear of retardation, of what it would all mean. These are of course normal feelings and in no way touch the love I felt at the very same time for my baby boy. Thank you again for sharing this and giving me a chance to revisit some of my own early thoughts and feelings.

  16. I appreciate your honesty.
    I'm the same way. I take a rash of shit about it fairly often (usually in the comments on my blog. Anonymously, of course.) but it is what it is.
    Sometimes things suck.
    I don't really get why it's not okay.
    I mean, people complain about their husbands all the time, and people don't tell them to STFU and be glad their husbands aren't worse. Why can't we also not enjoy the less-the-perfect aspects in motherhood.

    Anyway, I applaud your transparency.. I love the honesty, even when it's ugly.