Get a Load of This

OK, I swear I'll stop with the "get" titles because I'm rolling my eyes at myself at this point. Anyway.

So, my sister-in-law called the other morning. Now, in general, I HATE when my husband's family calls at times they KNOW he's not home. I have nothing to discuss with these people, and we have these horrifically fake conversations where we pretend to care about each other and blah blah, and it's wildly uncomfortable and, frankly, boring. Right, so she calls, and the sole purpose of her call is to tell me that, in response to our news, my mother in law is "hysterical." She just sits there sobbing, "It can't be true, no, no, he's smart."

How does she annoy me? Let me count the ways.

First off, there's the simple fact that I, as the MOTHER OF THE CHILD IN QUESTION, have clearly claimed first right of refusal on any drama-queen-type hand wringing. Let's just clear that up, shall we? Beyond that, there's the whole, "Let's stay in denial because it's such a comfortable place to hang out." The woman did this with her own kids, in one way or another, and she caused serious, irreverable harm to one of them by doing so. And let's not even TOUCH on the fact that my kid can't POSSIBLY be both smart AND affected.

Ick.

Now, ok, some of you may be thinking, "Come on, WG, cut the woman some slack. I mean, it's her grandson you're talking about here. She obviously loves him." Yeah, I know she loves him, but she loves playing drama queen more. You know what? Dollars to doughnuts my parents are hurting right now. But neither they, nor my siblings, have felt the need to call and tell me how badly THEY are suffering. Because you know what? I don't need to hear it. Not now, probably not ever. You want to sit and sob? Fine. CLOSE THE DAMN DOOR. I got enough crap to deal with right now, you know?

Got Pain?

I believe that no one has a monopoly on pain. You can't look at someone and say, "She doesn't know what I'm feeling. She can't possibly understand my pain." OK, that's not true. You can say that, and it probably is true that very few of us understand each other's pain precisely. But everyone suffers. Everyone feels pain. That's what makes empathy possible.

I read a lot of infertility blogs. I found my way to these blogs originally through Dooce.com. Dooce thanked the members of the Barren Bitches Brigade for defending her. I followed the link and was absolutely stunned by the power of Getupgrrl's writing. I remember reading through her entire archives over the course of two or three days. I followed her links and discovered Julie, Karen, Julia, Danae, and others. Some, I read for just a few days. Some I still read. And every so often, one of these bloggers posts something about "Why do fertile people bother to read these blogs?" or their commenters will make more general "Fertile people suck," comments. Now, all of these bloggers have posted about people they know in real life and in the computer who are fertile and who are perfectly nice people. But there's still that sense that fertile people don't know pain, or don't know *their* pain, or have pain that is irrelevant.

Not true. And not fair.

Yes, it's true that I don't know the specific pain of infertility. I cannot even imagine it -- my children are my everything. I am worried right now because my 6-year-old may be too hot in the sweater I picked out for her to wear to school today. I am not exaggerating. I have spent half my morning worrying about it. I have debated driving over to the school and interrupting the first grade to ask her if she wants a change of clothes. I am well aware of the level of my insanity -- but I also know that without my children, I would be lost.

But to imply that because I am fertile I don't know pain, or my pain is not relevant? No. The pain I have felt -- while sitting at my son's side in the NICU, while watching in horror as he turned blue, while listening to various doctors describe his various death sentences, while wondering WHAT ARE WE IN FOR NEXT? -- this is pain. I wonder whether my infant son will speak intelligibly before my 2-year-old does, and I feel physical pain in my heart. I imagine the conversations I will have with my daughters when they complain that my time is usurped by their brother, and I wince at the pain as I try to swallow around the lump in my throat.

No one has a monopoly on pain. and while I might not know yours precisely, neither do you know mine. And to invalidate it callously because I am fertile -- this is unfair.

Got to Get Past the Guilt

Yeah, so anyone with a kid knows that this whole parenting thing, but I think especially this mothering thing, is a guilt-laden proposition. We feel guilty about what we do, what we don't do, what we can't do, what we must do -- All Guilt, All the Time! That's our motto here on WMOM.

When I was pregnant with my son, I was put on restricted activity at about 30 weeks. Not bed rest, not house arrest, just a general admonition to take it easy. When at home, sit down with your feet up. Don't go hiking, don't go for long walks, don't spend hours on your feet. Driving carpool is fine, occasional grocery store outings are okay, and go ahead and cook dinner for your family each night. But then sit down and put your feet up.

When I reached 36 weeks, those restrictions were basically lifted, and when I was, by dates, 37.5 weeks, I gave birth. Now that we know that the dates were off and that my kid was premature, I've had a lot of time to go back and analyze everything carefully. I have the wisdom of hindsight, the knowledge that comes from obsessively googling the same searches again and again, and way too much time wasted thinking and overthinking that day.

When I dropped my daughter off at preschool that morning, her teacher, who is also my friend, mentioned that I was unusally crabby, and suggested that I might be in labor. I called my midwife, who agreed that I should come in for a look-see. It was Friday morning, and at my appointment two days earlier, she had mentioned that she felt fairly certain that I'd be having this baby in the next 38 hours. I got there, she checked me, and said I was 3-4 cm dilated, and we could go ahead and call this early labor. By anyone's standards, 37.5 weeks is full-term, so I was cleared for a homebirth. So I went home, and my husband and the midwife both arrived shortly thereafter.

The midwife had me take some homeopathic stuff to help establish a regular contraction pattern. I walked around the block several dozen times with my husband. I got to 7 cm with no real contractions, so the midwife broke my water. About 20 minutes later, I had a baby, and about a minute after he was born, the midwife first mentioned that we might need to go to the hospital.

For a long time, I felt certain that his prematurity was really my fault. That if I hadn't gone in that morning, the baby wouldn't have been born early, wouldn't have had trouble breathing, wouldn't have had hyptonia, and we wouldn't be here today. I still feel that way sometimes, actually. And now I can add in wondering if something in my genetic makeup caused this, or if my son doesn't even have what they think he has, which means that I simply allowed myself to see symptoms of it where there were none -- it never ends.

The reading I've been doing over the past few days talks about "mourning the loss of the child you thought you had," which is heartbreakingly sad to me on several levels, not the least of which is, it means, in a sense, mourning who my son is. You want guilt? Try that one on for size.

I think it's important to get past the guilt mostly because -- and this is an awfully hard pill to swallow -- this isn't about me. I can't serve my son's needs if I'm too busy wallowing in my own guilt. Which, of course, is something else to feel guilty about.

Getting More Information

Not every post title will have some form of "get" in it, but I've got (heh) a few more of these titles in me before I give up. Before I move on to the actual topic of the post, can I just say how exciting it was to see I had a comment already? Wow. Very cool.

Anyway. When we took our son to see a neurologist at six months, she made a little throwaway comment along the lines of, "Yes, it's a lot of fun to Google 'large head,' isn't it?" Yeah. It's just great. But who can resist the temptation of Dr. Google? So, at yesterday's appointment, the new neurologist -- we moved to a new state -- said he thinks our son has a particular syndrome. He fits many of the physical characteristics of this syndrome. He sent us to do a $1500 blood test that takes 4 to 6 weeks to give results, but it should give a definitive answer, according to him. According to Dr. Google, we'll also need an x-ray, and the neurologist also scheduled us for an MRI of our son's brain. So after the very expensive blood draw, we left the hospital, and by the time I got off the phone with my parents, my husband had already pulled up pages and pages of information on his Blackberry.

It's funny. I've read these pages several times, and each time, I come away with something different. And I keep googling and googling and looking for those answers that no one can really give. That whole, "So what's he gonna be like when he's 18?" What did I get? And what Meow, my commenter, said is right, I can't dwell on what my son can't or might not be able to do. I have to focus on what he can do, what he is doing, and who he is oustide of this potential diagnosis. But still....

It's the roller coaster that gets to me. I mean, really, we're planning on putting our son in preschool in the fall, maybe even some sort of summer camp program to get him used to the routine. And now, in a sense, all of that is called into question. How much information do I give his teachers? Do I tell them everything so that they make allowances for him? Or do I tell them very little so that they treat him just like all the other kids? What's best? And when will I stop second guessing myself?

What I Got and How I Got Here

A little over two years ago, I had my third baby. A boy, after two girls. Slightly premature, a little trouble breathing. So off to the NICU we went, and we wound up staying for 11 days. I don't actually recommend a NICU stay, if you were wondering. And in particular, I don't recommend the NICU where we stayed. Anyway, every day, one of the neonatologists would spring some new horror on us. "Your son has a big head." "He breathes too fast. This concerns us." "We can't really assess the extent of the potential brain damage until he's older." One night, after a particularly grueling day in the NICU, my husband drove us home to our other two children, and he said, "You know, it's like the girls say, 'You get what you get and you don't get upset.' I won't get upset, but I want to know what I got."

This, to me, seems to be an incredibly rational thing to want. But it's apparently not so easy to get. Because it's two years later, and we still find ourselves without answers.

We can spend a day, weeks, and months, even, with our son, enjoying him, assured of the progress he has made, and we say things to each other and our parents and friends, things like, "Well, he's starting to add words now, so we're really sure that he'll be all caught up by the time he's three or four," and "Just look at his problem solving skills. Any kid who can drag a chair over to unlock the pantry to reach the Cocoa Puffs -- I mean, come on, that's a life skill right there." And then, the next day, some neurologist mentions a syndrome, and Dr. Google gives our kid ALL THE SYMPTOMS of it, and I feel that coldness wrapped around my heart again.

I just want to know what I got. And this will be the space where I can talk about it and try to get to a good place.