Saturday, May 23, 2009

Acceptance

I'm reading Bad Mother by Ayelet Waldman, subtitled "A Chronicle of Maternal Crimes, Minor Calamities, and Occasional Moments of Grace." It's part memoir, part essay. I won't go into a lot of detail about the crux of the book, as I'll review it on my other blog when I'm finished with it. But the chapter I just finished has stirred up a lot of emotions for me as they relate to Finn.

In this latest chapter, the author recounts being pregnant for the third time and finding out via amnio that the baby she is carrying has a genetic abnormality. She refers to it as "a trisomy," although she never specifically names the condition, but does say it's a condition more rare than Down syndrome. She also explains that, whatever the condition is, there is actually a chance the the baby could be born "normal" and healthy, and never actually be affected by the triplicate chromosome . . . or there is a chance that the condition could manifest in a myriad of ways, including various physical/medical issues and/or mental retardation. After struggling for several days after receiving the baby's diagnosis, she and her husband make the painful decision to terminate the pregnancy. At the stage of pregnancy she's at, she must be admitted to the hospital, go under general anesthesia, and a dilation and evacuation is performed (apparently different from a dilation and extraction). Much grieving ensues on her part, and to this day she claims to feel guilt over the decision. And I believe her. Guilt - not regret or remorse.

Really, I'm not judging her. Or, I'm trying not to. It took a lot of guts for her to so candidly recount this experience, knowing vast numbers of people will cast stones at her. But even though I'm trying not to pass judgment on her for her choice (because one of the main points of the book is that we moms need to stop judging one another, for crying out loud) I cried through almost the entire chapter. When she first mentions the amnio and then "genetic abnormality," I actually felt myself smiling and thinking, "Yayy! See, even famous authors have children with genetic issues." For a few moments I felt a sisterhood with her. Then she writes about struggling to decide what to do. She writes:

"I did calculations in my mind of what I could tolerate - physical malformations, fine. . . . But developmental delay. That shook me to my core. Mental retardation. I couldn't go there."

And here's where I started crying. Because I knew what she was going to decide. And it hurt me. Because I can't seem to be able to stop myself from imagining every aborted chromosomally enhanced baby (even if it's something a little different from Down syndrome) as Finn. Or Dylan. Or Georgia. Or Evan. Or Kira. Or Malea. Or Stella.

Apart from that vicarious grief I feel when I read about abortion statistics for prenatally diagnosed cases of T21, I felt something shift inside me as I read this chapter. A realization, I guess. I recalled all the times I've said that I wish Finn didn't have Ds. And I pictured his laughing face, with his eyes scrunched up into crescent moons, and his crooked pinky fingers and the way his pudgy hands hold onto me, and I realized that I can't imagine Finn any different than he is.

I don't think I will ever be glad that he has Down syndrome, and I suspect that I will always wish that his life could be devoid of the hardships and obstacles he will face because of having Ds . . . and I might even always feel a little resentful of moms whose babies/children are "normal" and yet they still worry that Jr. isn't quite keeping up with the Joneses with his milestones . . . but I think I am reaching a new stage of acceptance. I feel like I can not only accept Finn's differences, but embrace them.

He's my boy, and I love him just as he is.

19 comments:

Mel said...

I read your post about feeling guilty because you haven't done much practise of his PT, and this post, and I have been thinking about it a lot. Like you I would take the disability away if I could, but I can't. If this is the only way I can have Luke, and it is, then I will have him this way a hundred times over. I don't want to be without him. He is the only baby (apart from my others!) I want, and have ever wanted, and I expect you feel the same. And who said his life will be any harder than that of his siblings. He may be teased- so may they. He may be unhappy at times- so may they. He will find some skills hard to learn- so will they. So I take my cue from Luke. He is glad to be here, glad to be alive and full of marvel at the world, and so am I. These babies are a gift, a gift not everyone is able to receive at the time with a full understanding of it's real value. But that does not mean that the value is not there, or that we can not come to see it in time. A friend said to me when I was grieving after Luke's diagnosis that of course I was devastated because my heart had been broken, and it was, but now it has been healed, and Luke has healed it. Love is the answer and will carry us through.

Ann said...

Oh how I love my little guy's crescent moons as well. I realized he had the whole universe: the sun, moon, and stars. His face is as warm and open as the sun. His eyes make those wonderful moons and his baby blues have the stars. When I worry, I just look at that face and remember the universe is there.

Lovin Mama said...

Just reading your post had me in tears. Goldie was about Finn's age when I realized I had fallen in love with all of her, even the DS characteristics. I always loved that extra chub on the back of her neck ;)

Ria said...

I can totally relate to feeling a little resentment toward moms who have "normal" babies/children. I used to cry a lot about it when Matthew was only a couple months old. But like you, I also feel like I've embraced Matthew's differences. He is who he is. And I'm not going to let anyone tell me he's anything less.

Bill and Ria

datri said...

Very touching.

Hector and Jennifer Varanini Sanchez said...

Oh Lisa, what a sweet post and it makes me smile to think you've reached such a wonderful place with Finn. He IS so precious!!!!

Amanda said...

Lovely.

Tricia said...

Great post. And in my opinion (seeing Georgia's name there), I can't help but think "What great company she has! Them and SO many more."

Isn't that awesome? We'll have to plan a get-together one day when all the kid are a little bit older!

And as for the book. I am not sure I can handle reading it yet...my insides freeze when I think about the abortion/abnormatlity thing.

Wendy P said...

Great post. And oh, the amazing company my girl is in!

When we see someone with Ds, we always say, "Look, one of Kira's peeps!" And that's how we feel. Finn, Georgia, Dylan, Evan, Ruby, Malea, Stella and all of the beautiful babies - make me think of my girl. I see Kira in their eyes, their cutie-cute feet, their arms, and legs, and torsos - and they are BEAUTIFUL.

Monica @ Monkey Musings said...

Beautiful post. It was about the same time, when John Michael was 10 months old, that I was ready to start meeting other families affected by Ds and embrace all that he is. The abortion rate is staggering for prenatal diagnoses of Ds. It looks like our kids are lucky to be part of a very elite club -- their peeps...

Loren Stow said...

What a post! Once again, you write with such honestly and openness! Thank you!
It is painful for me too - that the world looks at my boy and 91% of them would have chosen to 'terminate' him... his smile, his giggle, his love, his hugs...
It hurts like hell!

Cheri said...

Lisa, I think this post is beautiful and I am so thrilled for the contentment and acceptance that has found it's way into your heart. One of the reasons I love your blog is for your willingness to be completely open, honest, and raw about your journey to this point. Those that follow your blog appreciate that this is a process and that each person's road to acceptance is unique and their own. I love your words...

"I feel like I can not only accept Finn's differences, but embrace them. He's my boy, and I love him just as he is."

Your little Finnian is absolutely beautiful!

The Boltz Family said...

I would have found those words hard to read. And oh, what people miss out on when they cannot (won't) give children like ours a chance. Congrats, Lisa. Acceptance is a beautiful destination, and it sounds like you have arrived. Welcome! Finn could not have asked for a better mom.

Chrystal said...

What a wonderful community my girl has brought me into. Seeing her name there gave me chills and makes me want to smoosh her with kisses for the rest of the day. I understand what's it's like to be afraid of the unknown, but I still can't digest this desire for "perfect" babies that so many (the majority!) people seem to have. I am so, so glad I didn't know the diagnosis before I had to opportunity to know Malea, because I, too, may have succumbed to the doom and gloom no matter how much I like to think that I would never. I'm glad we're all sharing in this journey together, hopefully being found by parents all over and showing them that our kids effin' rock.

TUC said...

I can't understand how a mother can believe "mental retardation" deserves a death sentence. I wish we could forever ditch that term because it conjures up such fear and repulsion, and it is so far from the reality of our children. I won't judge that mother for her choice but I can feel sorry for her that she will never know the truth about her own child.

I know someone who made the same choice with a ds baby. When she met my daughter, her realization of the truth and her sorrow was so evident. I pity her that she selfishly believed the negative outdated crud.

sheree said...

beautiful post!

Isn't it so wonderful to be in this place?! I couldn't have imagined ever reaching this place of understanding and acceptance a year ago.

So glad we have all come together, cried with eachother, and been there for eachother. Without this fabulous community I don't think we'd be where we are right now and for that...I thank you!

Megan said...

Some disjointed comments.

1. I want that book when you're done. :-) (if it's not borrowed or already spoken for) It's on my too read list. I can't remember if I mentioned it on my blog, but the Post did an article on the author on Mother's Day. My reaction in reading about the trisomy was (and always is)the same as yours. It's wierd, I almost wish dx on people.

2. So glad to see Stella's name within the elite. ;-)

3. Do you read the Einstein Syndrome blog?

2.

Lisa said...

I love how you are finding your way and taking the rest of us along for the ride...

In my mind, you and Finn are standing together, bathed in light.

Laurie said...

Oh Lisa! This brought tears to my eyes...for so many reasons.

I can not find the right words for what I am thinking right now...but please know that I am incredibly grateful that you and I have been traveling this journey from the very beginning. And what a journey it has been...

Love you!!