Poor Baby, Poor Mama?

My son will need all his superpowers in life. And he will need mine, too.

So I’ve spent a huge amount of time in the past year trying to get clarity about how my son processes the world. He’s a very intense, sensitive child, but also very outgoing and gregarious, which can be a confusing combo. He’s fine/He’s not fine/He’s fine/He’s not fine, all day long. The total upside-down-ness of our lives in the past two years made it much harder to be able to see him clearly. There was a lot of “context” as the doctors and experts call it, what with my racing to Philadelphia to help my parents die, resigning from the only job I’d ever had since he was born (for which he was often photographed, so I think he thought he was famous), and then my lovely boyfriend moving in with us all at pretty much exactly the same time—all within three weeks. I mean, c’mon, universe! You’ve got to be kidding! And yeah, my book came out in those three weeks, too. Le Woah.

So “context,” I get it. But now that I have the ability to look in the rear-view mirror, I see how that context just was a message muddler, something that slowed down my efforts to help Zack. So many doctors and therapists, all agreeing that Zack was under self-inflicted pressure, not processing information correctly; his teacher just became more and more frustrated with him; his father didn’t understand what I was seeing, the struggle that was visible in his eyes, that he would release by saying “I’m an idiot” when he couldn’t stop doing whatever motion/sound/action/noise he was making…. Three years. It’s taken me three years to get in the same room with the answers.

And now I have a diagnosis (that I will not damn him to). I am relieved to have a the beginnings of a way to understand him, so I can start to help him understand himself.

We have a future filled with trials (and errors), new schools, new doctors, new helpers, new tutors, new commutes, new friends, new camp, new new new. It’s very overwhelming to me; I can’t even begin to imagine how it feels to him, he who has such a hard time keeping his beautiful, poetic mind on any task or thought for long, unless it’s a book (his secret haven) or a video game (his guilty pleasure).

And I’m feeling sad. And I feel guilty for feeling sad. I never thought I wanted a perfect child, but having to come to terms with the fact that my child will need a lot of special care and love and attention and hard work and defending and protecting is not coming easily to me.

And in one of the random tests we had to have before we start a medications today we discovered that he has an imperfect aortal valve, which allows the blood to flow backward. It should have three flaps, and look like a Mercedes Benz logo; his has two, that kind of high five each other in a casual way as they pass each other, instead of closing like a lock for that brief, necessary nanosecond. I saw his heart’s imperfection with my own eyes on the sonogram, the same way I saw his face for the very first time before he was even born…. his sweet little profile suddenly appearing out of the static on the screen when I was six months pregnant, the same impossibly cute, kewpie-doll nose that still graces his face today.

He can’t have a fragile heart! He has so much else he needs to carry, so many extra burdens. And I know I have to be so strong for him, and fight for him. But I have a fragile heart, too. And it’s aching, just a bit right now.

About stacy

I am a writer, author, mother, former magazine editor (last at Redbook), optimist, and, above all, a searcher. I'm still searching for whom I'm really meant to be, after a series of very jarring losses: a divorce and house disaster that led to a book (Falling Apart In One Piece); a week after the book came out, my parents suddenly fell gravely ill, I resigned from my job (and, apparently, my career), my son went into crisis, my parents then rapidly died four weeks apart, and my boyfriend (who had moved in with me and my son just weeks before the book came out) began the painful journey of realizing we couldn't make our relationship work (that story unfolded on this blog). Since then I've been trying to figure out what's next. Or, in other words, how to fill in the blanks.
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13 Responses to Poor Baby, Poor Mama?

  1. heather says:

    Sometimes knowing, evening when painful, is better than not knowing. If only that conferred a dose of ‘easy’ along with it. It will be better, the knowing. I got my girl’s dyspraxia dx at ~age 3 and it’s made all the difference. My other two have had minor medical stuff and it’s a stress all it’s own. Seek out the other moms who get it. For the overlap in issues, the community of autism mom (bloggers) have been invaluable. You will find your way as you advocate for your precious boy.

  2. Pauline says:

    I have a “conundrum” child who has ping-ponged through different therapies, psychiatrists, medications, alternative schools,etc. So painful and frustrating to not know exactly what’s ailing him (his diagnoses keep changing), or how to help him.

    I so related to what you said: “And I’m feeling sad. And I feel guilty for feeling sad. I never thought I wanted a perfect child, but having to come to terms with the fact that my child will need a lot of special care and love and attention and hard work and defending and protecting is not coming easily to me.”

    I love him with all of his complicated-ness, but I grieve for the regular life he didn’t get to have.

  3. Oh man.

    I posted something similar today before I read this, though much less eloquent and insightful. I felt more what you said. Instead I said something like, “this sucks.”

    This parenting gig is not for the faint of heart.

    Sending you love.

  4. Courtney says:

    Every time you tell your truth, you open up the world around you — thanks SM! I love you and I’m thinking of you two (and I’ll keep you in my prayers). I have no wisdom for you. Just one day at a time — that’s all I can ever do. xoxo

  5. Red Headed Book Child says:

    Hi Stacy,
    I reviewed your book some time ago and have been recently following your posts.
    I have a 3 year old son whom I’ve been home with since he was 14 months. He is sweet, sensitive and smart but I can tell he goes to the beat of his own drum. We’ve had him assessed and been told to wait and see how he adapts to more social situations, sinc ehe is alone with me most of the time.

    I think he is brilliant and wonderful but I want him to feel comfortable in school and show everyone what he shows to me. It’s tough. i don’t like labels on kids but i do feel some need a little help in some situations, especially this day and age when you apparently need to be college ready by kindergarten.

    Your son’s picture rocks!

    Take care,
    michelle

    • stacy says:

      Michelle, thank you for finding me here and for sharing the story of your son (is he a red-headed child, too?). I agree totally with your comments. I see so much amazing wonderfulness in Zack, and I’m happy to say that just in the past two weeks some of the team I’ve been assembling to help him have commented on it as well. It gives me hope that we can really nurture a child to carry his differences proudly, as if they were a special crown that’d been made just for him!

  6. Red Headed Book Child says:

    Stacy, I also wanted to mention that my little guy has a bicuspid aeortic valve too. I had heart surgery when I was a child and my doctor told me it is nothing to worry about on him. It may or may not affect him when he is an old man!

    🙂
    take care,
    Michelle

  7. Leslie says:

    Stacy,
    I just read your blog for the first time. This post. It’s oddly comforting to me to know there are other people who feel the way I do. Not that I would wish these things on people, but I think you know what I mean. Anyway, I suck at blogging already. But I did manage to write a post about my son, who is struggling with his own kind of normal. Stay strong, mama. It’s so hard somedays, but stay strong.
    Leslie

    • stacy says:

      Leslie, thanks for stopping by. And it’s not oddly comforting to have company; it’s totally comforting! Company and connections are what keep us from spiraling away into the dark places of our own minds. And that’s just one of the many reasons I write this blog. Thanks!

  8. Pingback: My Son’s Beautiful Mind | Filling In The Blanks

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