Monday, April 25, 2011

The worst thing anyone has ever said

On the wall in my twins’ bedroom, there’s a picture of me holding my son Malachi for the first time. I’m in the NICU and he is so small you can barely see him under the blankets. I’m beaming make-up-less at the camera. I’m happy, relieved that the trauma of the previous few months is over. Everything really was going to work out for the best. The odds were finally in our favor. The horrific scenarios I had played out in my head ever since that terrible day of the ultrasound were finally memories, in the past, gone, over.



I was wrong.

Was it then? Was it in that moment when the picture was taken that blood was pooling my son’s brain? Was it my insistence that I hold him, my steadfast belief that he needed his mother’s touch as much as possible during those days in that heartless plastic box, was that the trigger? Or was it another time? Was it that nurse I never liked, did she handle him too roughly? Or was it during the birth, when I chased out anyone who tried to put a heart rate monitor on my huge belly? Am I to blame? Even if it wasn’t directly my fault, doesn’t ultimate responsibility rest with me? Couldn’t I have chosen another hospital? Couldn’t I have insisted on a different NICU?

I’ll never know what the cause of the brain damage was, but I know that life will never be the same. I know I will never have that smile I have in that picture again. I know I will be happy again, sure, but somewhere lurking behind my smile will always be the loss of innocence. The knowledge that things really can get that bad. That worst-case scenarios aren’t for other people.

Every time I watch my son Jaden reach a milestone or get better at manual tasks, I can never be truly joyful because I have to wonder if Malachi will ever do it, too. Every time I see Malachi act differently than Jaden I have to wonder if it’s because of his brain damage or simply because he’s a different kid. It’s not fair to either of them. It’s not fair to me. It wasn’t supposed to be this way.

I hear that a lot in my head: It wasn’t supposed to be this way. It sounds trite when I write it or say it out loud. I hear the automatic response: Yeah, life sucks, it’s not fair, tough shit, deal with it. But who could have even imagined this? Even during my wild fantasies — those ones that every pregnant woman grapples with — I never imagined it would be this bad. Not just twins. Not just a special needs kid. Both.

And yet, it could be so much worse. Both of them could have brain damage. Malachi’s damage could be much more severe.

And yet, it could be even worse.

You want to hear the most horrible thing anyone has said? One of my best friends was pregnant at the same time as me. She went in for her 20-week ultrasound and, just like me, found out horrible news. Only it was even worse: her baby had died in utero from a genetic abnormality. Within 48 hours, my friend gave birth — not aborted, but fully went into a day-long labor — to her dead daughter.

So here it comes, the worst thing anyone has ever said: I envied her.

I envied her because her life could go back to normal one day. The events of that pregnancy — while horrifically sad and traumatic — wouldn’t last a lifetime. She wouldn’t have to watch her daughter struggle every day with activities the rest of us don’t even think about. She wouldn’t have to wonder if there was something she could have done, something she could do or wasn’t doing every day to help her get better. There was no getting better, so there was closure.

My life will never be “normal” again, not as I knew it before, not as I imagined it being. I don't get to go back to the person I was in that picture, exhausted but self-assured, confident that things would turn out the way I knew they would.

It wasn't supposed to be this way.

12 comments:

  1. It's not the worst thing ever said, but don't envy your friend. I also gave birth at 20 weeks - a full day of labor, just like you described - on July 13, 1998 (I actually talk about it, briefly, in my blog post that's going up tomorrow). I still live with that heartache, the questions I ask myself are just different (like: Did the trauma of that birth lead to the placental abruption that I had with Sarah Kate?) In a way, though, your friend is blessed. When/if she does have children, she'll appreciate them so much more.

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  2. My goodness, Andi, you've had many different flavors of heartache, haven't you? I look forward to reading your post.

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  3. You're so wrong. The events and trauma of that pregnancy will last a lifetime. You can't recognize it because thankfully you haven't given birth to a dead child.

    There's no closure. You still have questions. And I recognize that my situation is different, and my questions different, since I gave birth to three. But there's still questions.

    Is there something I could have done differently that would have caused Caitlin to *not* develop a rare brain defect? If she'd survived until birth, would Julia have CP? Was it her death that caused it, or the fact that they were 10 weeks early? So if Caitlin hadn't died, I could've made it longer, since I had no signs of PTL and delivered because she died. If she'd survived, would she have been okay? Her defect was large, but at our last appointment there was still little actual brain protruding from her skull. Maybe she would've been okay. Or only as "bad" as Julia is now. Or maybe her and Julia were just a genetically messed up egg, and she got the brunt of it.

    There's a different pain in never, ever knowing what you're child would've been like if they'd lived. Entirely different than our shared situation, watching one "normal" child reach milestones, and wondering if the other will ever meet them.

    I have pictures of me before finding out about Caitlin's diagnosis, and before finding out that she'd died. I look at them and think the same thing as you - that I will never be that person again who thinks everything will turn out okay. There is always going to be a part of me that is sad/devastated/angry and missing my daughter. There's no closure in that.

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  4. Amy, I was hoping you would comment with your unique experience.

    I have no doubt that anyone who has lost a baby feels an ocean of sadness that I can't relate to. But it seems to me that even if you think about your lost daughter every day, it's not the same thing has having to actually deal with the consequences of her defect. Since you have had to do both, it's interesting to hear that you think they are more similar than I would imagine.

    I feel more and more each day that Malachi and even his condition are a blessing. But I can't deny that there were times when I wished for a "do-over."

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  5. It's possible that you would be one of those people who could rationalize it as, "If she'd survived with this defect, she'd have a hard existence and I wouldn't have wanted that." That could be part of the difference.
    Or it could be that you really can't imagine what it's like to lose a child until you have. You can *think* you know. For the last 15 weeks of my pregnancy I knew Caitlin may be stillborn, and I prepared myself as much as I could for it. But you cannot adequately prepare for it, even if you think you have. Not emotionally, any way.

    Dealing with Julia's stuff and not knowing how independent she'll become is so much easier - not to say it's easier, just easier - than dealing with having delivered a dead child.

    I think it's something of reframing the grief. You mourn the loss of Malachi's "normal" life, which is entirely justified and normal. I do that with Julia. You mourn the fact that you can't just sit on the floor and play and color, and that if you do, you're constantly thinking "Should I be doing something more? How is 15 minutes of pure play time going to have an adverse effect?"

    There are still questions in either situation. You have more, because you don't know how Malachi will turn out. But you can at least try and alter the outcome, as best you can. I don't have that. I would take having two special needs children over having had Caitlin gone.

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  6. Thank you, Amy. It's very interesting to hear your perspective and it helps me cope with my feelings as well as know a little better how to react to my friend's feelings.

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  7. It is absolutely not the worst thing anyone ever said, I know how much grief is involved in having a special needs child. But I have a very similar comment to Andi's above. Life for your friend will never get back to normal and I know this first hand from having gone through a similar situation. And I also wonder if the trauma of that was the cause of my twins' premature birth. Having lost that daughter and now having a child with a completely different special need following her, I feel life long pain for both, just in different ways. At the end of the day, I would take the pain of the surviving special needs child in a heartbeat, over the pain of losing his sister before him.

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  8. My friend recently recommended your blog since I have twins–one that was born with brain damage due to an infection in utero. She now will live with the life long effects of that damage along with two conditions; hydrocephalus and microcephaly. I had to comment on this post–the first I've read–since I feel like I could have written it myself. Thank you for having the courage to write your honest feelings! I couldn't have expressed it better. It's horrible that you have had to go through this but reassuring to know that I'm not alone. I look forward to reading more. Keep it up: we need you.

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  9. Hi Mackenzie, thanks for your touching words.
    If you have time, please join us mommas of multiples with CP on our forum: http://www.outrageousfortune.net/p/formum-place-for-moms-and-dads-of.html

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  10. Mackenzie turned me on to your blog and I have to echo her sentiments. Twinning is still an oddity even though it's growing more common, and having one with special needs on top can really be a challenge. I can relate to much of the heartache you expressed.

    One of my 8 mo twin boys has Fragile X, which we had no idea ran in our family. We found out at 4 mos, but as his mamma I knew something was off from the beginning. It's not the same as making it to 20 weeks, but I had a miscarriage at 10 weeks, before we got pregnant with the boys. They are both deep pains. Pain beyond the loss I felt when my father died, though we were very close.

    The pain of having a baby die is terrible, it has a cosmic bankruptcy that undermines the nature of what we expect life to be. But, it is acute. The pain of what might have been ebbs and flows, but only within the confines of our minds.

    The abject horror you can feel living child with special needs is that life can take you so far beyond the worst of what your mind will let you imagine. It's not just what this one can do that that one can't, it's also knowing the real world as an adult and seeing all the ways the world can hurt your dear one; and then getting a front row seat to watching it unfold. You are powerless in so very many ways, and yet compelled to optimize everything you can. It's unrelenting, and the pain is refreshed and revived and reborn over and over and over in a myriad of ways, presumably into perpetuity.

    You can adapt to the permanence of a death, but you are at the whim of a life-long disability and must constantly mourn and adapt, even to the point of creating a path for adaptations that must carry on beyond the span of your own life.

    I've not wished one moment that I hadn't had Max, and I don't think that's what you're saying either. There isn't a moment of his life that I haven't cherished, in some ways even because of his disability. But, I hope I never ever encounter a pain that strikes more deeply at the core of my being than his disability, and the loss of the child before him certainly doesn't come close.

    Thank you for sharing your story, and for granting me a space to share mine, for whatever it might be worth.

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  11. Thank you for your bravery in writing this post.

    I lost a little one VERY early on in pregnancy prior to the birth of my son and it still pains me.

    My son, like your Malachi to you, is an amazing blessing and I have lived and learned so much from living life with him and trying to do the best I can.

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  12. Competitive grief. No one wins.

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