Tuesday, November 13, 2007


Whenever I write about Paige, her life and her current issues, I get comments and private emails asking me why I am so negative.

I read other blogs and notice that whenever a parent writes about their child's current issues (or their potential issues) they feel the need to also add statements like, "but I love him/her anyway" or "it doesn't change the way I feel about my child.".

Who are you trying to convince? Yourself? Family? Strangers?

Are you trying to justify a decision?

Why don't I add these statements to my blog?

I do not need to justify my love for my children.


Sarah said...

You know, I always post that in my blog because nearly a year ago when I started desperately searching on line to find a baby like mine, I wanted to see the whole aspect. When I first came upon your blog I had to stop reading it in the beginning (just shortly after he was born) because it seemed so negative, and I wasn't willing to face the fact that he might not turn out 'okay.' It was until much later as I kept reading, forcing myself to face the facts, it was obvious how much you loved your daughter. Your mission was to inform people, and I respect that. That's what I want out of my blog. I want people to see the truth, that it's not all roses, he is by no means 'fine,' and yes, I still love him. I gave up the justification a long time ago. At one point last Februrary I thought it would be best if we removed life support because I couldn't stand to see him suffer anymore, and then my husband asked me "So, people who suffer on occasion don't have the right to live?" My son definitely doesn't have a life full of suffering, but again, you of all people should know it 'ain't a bed of roses.'

But I will continue to post that 'I love my son anyway,' probably over and over and over. Why? Because I want strangers to know it, that when I complain about the vomiting, the tube, the oxygen, the insurance nightmares, the pain, the depression, the PTSD... I love my son anyway!! And I'll be totally honest. Sometimes the comments on this blog get heated and I feel like I need to convince your readers of it. I honestly have no idea why. When I get out of the blogosphere, my husband and I just enjoy our family. I've toyed with this for months on my blog, like 'who am I writing this for anyway.. me or them?' But, ultimately, a stranger as clueless as I was about prematurity will come upon my blog and read the truth, that it's been the roughest journey of my entire life, painful and depressing, but I love my son anyway, and then they can make the decision as to what they will do, and I really don't care what that decision is.

3 good eggs said...


I thought Paige's birthday post was very positive. I havent read any comments from that post.

So, eventhough it's late, Happy Birthday beautiful Paige!!

Anonymous said...

What I am having a hard time with, is why do strangers feel it necessary to judge? I don't understand why people can't read this blog, or any other, without assigning a value judgement on the author.
When I read this blog, I see passion and committment. Stacy shows how she loves her children by being so passionate and committed to her cause. Do people have to agree with her cause to see her love for her children? I don't think so.
I work with a man who lives by his faith. I don't agree with a lot of his beliefs, but I respect him for being honest to himself and his faith. He talks his talk and walks his walk. I really think we all need to show understanding, compasion, and tolerance for all viewpoints.
I know I should probably post this on the "tolerance" thread, but it has gotten so long...

Kathy said...

What's shocking to me is that what seems to cause the most heated arguments here and on a preemie discussion board (where I've seen you around, Stacy!) are not important decisions like comfort care and DNRs, but HOW people talk about their children when those issues come up.

It seems to me that on one side, you've got the people who like to concentrate on the miracle aspect of their children, or the "perfect just as God made her" aspect. It pains them to hear people talking about their children in a way that sounds like those children aren't appreciated.

And on the other side you've got the people who love their children deeply, and want to talk frankly about their troubles. To them, the admonitions to stop being negative seem like an invalidation of their very real struggles and feelings, or accusations that they don't love their children. Or it touches on tricky theological issues.

I don't have a micropreemie, so I'm just a spectator in most of these discussions, but I tend to identify with the brutal honesty folks. I am grateful for this blog.

If you're looking for stories of hope and celebration, they're easy to find. The media, mommy blogs... even my own blog is intended to keep friends and family updated on my daughter, and I feel pressure to keep it relentlessly upbeat. For difficult, honest conversation, I come here.

Stacy, I appreciate what you're doing here. Your love for your children is obvious, and beside the point. I'm not surprised to hear that you have other blogs, the kind that let you share photos and anecdotes with Cousin Mildred. To compare The Preemie Experiment with other blogs, well, it's just apples and oranges.

lea said...

When reading email or blogs I assume that many writers have witnessed or been flamed in the past, so "I love him/her anyway" it is a way to clarify the meaning of a post to even the most obtuse reader.

Insofar as a posts about Paige, I think the posts are honest and many people are not used to reading things without a candy coating. All of the posts are written with the utmost concern for her well being. If that's not love, I don't know what is.

These days, I find I have to justify my love quite often now that my children have taken up bickering as a hobby. They are so annoying, but I think I still love them ; )

Anonymous said...

I think a childs current issues are certainly going to change the way a parent feels about thier child. It is not going to change the underlying love and commitment , but as for the rest of the emotions that swirl around the surface (pride, fear, parental protection instincts, anger, embarassment) all of these will change with the issues.

terri w/2 said...

Kathy - well said! Since I've been mired in the negative camp (along with Stacy and others), I appreciate your perspective. Thank you.

medrecgal said...

IMHO, the level of honesty here is a refreshing change from many of the other blogs I've run across regarding things like prematurity. You don't shy away from the tough stuff, and yet, your love for your children still shines through. As you know, I'm coming at this from a different angle from most who read this blog, but the discussion is often intriguing...and I love the pictures you post on occasion (like the birthday post).

People need to know this stuff...to see many sides to prematurity without all that sugarcoating that you see in the media. It gets gritty and sometimes downright ugly, but there are also the good times and interesting tidbits about Paige that make for a good balance.

Keep on blogging, and I'll keep on reading. I may even get up the nerve to start my own blog someday when my life settles down a bit.

Chris and Vic said...

Yesterday and today there is a story on national news about Sandra Day O'Connor's husband. He has Alzheimer's. He is now institutionalized, and had become depressed in the Alzheimer's unit, until he met a woman patient there . . . and now they can be seen sitting together and holding hands.
Sandra Day O'Connor is said to be happy that her husband has found a way to adjust, found some person to identify with, and maybe form a bond with.
She has allowed him freedom to rediscover happiness. He doesn't understand his roles as husband and father very well or consistently any more. He is now a "blank slate". So there is really nothing extraordinary about this bond with this woman.

So what is the definition of LOVE, then? It is what we DO for others. It is the tolerance we exercise. It is the freedom we give them.
It may not be the same precise variety of love that a mother of a neurotypical child shows. It may mean letting go. It may mean holding on. It may mean the daily tasks of caregiving which are over-the-top for some of us.

It isn't what we feel, necessarily. We feel exhausted. We feel that life has dealt us a bad hand. We feel grief over what might have been . . .

It is what we DO. We stand by. We are constant. We may complain and get cranky, but we are there. We are not going anywhere . . .