Sunday, June 14, 2009

Never have truer words been spoken (or I guess written in this case). My friend recommended this book long ago and I am just now getting to read it - thanks to my parents acting as built-in babysitters, chefs and maids. (Although even with all their help, we all collapse into bed at 10 every night and I only read one chapter before passing out).

This books discusses what has become a popular topic lately among bloggers and pop culture writers: how freakin' hard it is to be a mom. This isn't new news, but I'm glad to see that women are becoming more honest about their lives and trying to help each other rather than judging each other.

I've been thinking a lot about this topic because if anyone is convinced that they are the world's worst mother, it's me. I don't say this to get a bunch of emails and comments praising me, honestly. In fact, whenever I get a new reader to this blog, I'm surprised at how often they tell me: "You seem to have it all together."

To which I can only reply: Who's blog are you reading?!!!

The other day, after dragging my screaming children to early intervention late once again and then losing the only remaining pair of medical sunglasses left (I lost the first pair the week before), I asked Emerson's coordinator if we could have a talk. She was helping me lug the lightbox the visual teacher had just given me to my car and then we stood in the rain talking. I told her that we were concerned Emerson might have another condition besides low vision that was causing him to have so many delays.

This was due to several factors: the new VT hadn't noticed a correlation between low vision and developmental delays in her years of experience, many of the other children with albinism we've met haven't had delays or their delays haven't been as severe, and Fionn (so far) hasn't had the same kind of delays.

The coordinator pondered this for a moment and then said, "Well, I haven't noticed anything about him that would indicate he has another condition. He just seems like a typically developmentally delayed child."

My heart leapt. "So he'll just grow out of it in time?"

"Maybe. Or he'll be delayed for life."

My heart plopped out onto the wet asphalt with a sickening thwump.

She continued, "The difference is whether or not he continually progresses. Many kids leap forward all of sudden when they start preschool and others don't. If he doesn't, that means it's a lifelong issue."

Just then we heard a crunch as two harried parents trying to get their minivans out of the parking lot behind us crashed into each other. Between that and the gray drizzle, I couldn't wrap my head around what she was saying.

She went on to say she would talk to the other teachers and get some second opinions, but in my head I was visualizing the "special ed" preschool class we had visited a couple of weeks beforehand since he will start in January. The class was full of subdued children with perpetually runny noses - and every degree of handicap was represented. On the one hand, I knew that having him in special ed would relieve the pressure on both of us since he can't speak and therefore function in a regular class. On the other hand, nobody wants to admit their kid has to be in special ed. And now here was this woman telling me that it could be lifelong. That word feels like a baseball bat in the stomach.

I've done research since then and have come up with a wide array of "labels" to get at what might be going on with him: sensory processing disorder, language learning disorder, language delay, and (hardest of all) slight mental retardation. Only time will tell which one is the case, but right now none of them seem to fit exactly.

Robbie finds it hopeful that the coordinator doesn't recognize a condition and that none of these labels fit perfectly. I understand where he's coming from, but on the other hand I want a label so that I know what's going on and what to do about it. I see people watch him with questions in their eyes: why doesn't he like certain textures? why doesn't he talk? why does he seem less mature than other kids his age? But I don't know the answer any more than they do. And that makes me feel like a shitty parent.

Here's the reality: I took all the prenatal vitamins and herbs, did yoga and meditation, had a natural, unmedicated birth, slogged through breastfeeding problems determined to keep nursing, coslept, did cloth diapers, nursed for a year, made him homemade organic babyfood, still feed him a vegetarian and mostly organic diet, analyzed and researched the hell of out every vaccine, agonized over soymilk vs. cow's milk, made sure I introduced the right foods at the right times and didn't use antibacterial soap so he wouldn't get allergies, I took him to playdates and classes and early intervention...the list goes on and on. But in the end, I still gave him genes that caused low vision and delayed development and a severe peanut allergy.

What's even worse is that despite everything, he is a sweet and loving little boy who - because of the lot he's been dealt in life - needs even more patience and affection from his parents. But instead of giving him that, I agonize and feel guilty and lose my patience and generally hate the job of motherhood 95% of the time. And that makes me feel like a shitty parent.

I desperately hope that someday Emerson will be a highly functioning member of society and we will laugh at the idea that we ever worried about him. But in the meantime, I will keep popping Zoloft and sign Emerson and I up for "Mommy and Toddler Yoga" class.

Most importantly, I need to tell that perfect image of motherhood I dreamed of before I actually had kids to hit the road. I will proclaim it from every mountaintop if it helps any other moms: My children are special needs and I am a shitty mom...but we're going to get through it together.


  1. Cassie, I don't think you're a shitty mom at all. I think you're very strong, and braver than I could ever be. And I really want to meet your sons!

  2. Try reading "Momfidence"... And remember that you are not alone! Every mom, regardless of whether their children have special needs, feels this way. And we ALL need to let go of that "Cosby Show" vision of family life that we have. Life is chaotic, uncontrollable and surprising. It's how we deal with all these elements that makes us stronger. You are a wonderful person and a great mother.

  3. I hate this roller coaster, I hate that you have to be on it. No kid fits a label exactly, especially our kids. Every time I make it up on hill, I see a double loop in front of me. It is hard, really, really hard. Your not shitty, but you know that, the situation is shitty and you are doing your best.

    I know our kids are not exactly the same. But when I first started my journey there was no one. No one going through anything even close to what was going on with us. I just want you to know that there is someone that gets it. Even if that someone leaves a million annoying comments on your blog:)