What Can Be Mended, And What Cannot.

Monkey

There is something to be said for those small moments, moments where there are things we can fix, band-aids to be applied, kisses to be given, scotch tape, and glue, and staples…

And there is something to be said about the needle and thread I hold now in my right hand, as I clutch a little blue and gray sock monkey we found in the back of my almost-four year old son Owen’s closet yesterday as I was doing some New Year’s cleaning.  He asked to bring it into his crib to join the menagerie of dolls and stuffed animals that have nearly overtaken the space where his little body goes to rest, and I said it was fine, only stopping him when I happened to glance over and saw some stuffing emerging from the little monkey’s right leg.

I assured my boy that I would fix the monkey’s “boo boo” and return him right after Owen’s nap.

And I sit here now, clutching this little monkey, and find myself suddenly confused as to why I am weeping as I lovingly sew his injured leg back up.

Something so simple – a needle, some thread – can fix so much.  It’s something so maternal, so natural, to want to mend, to care for, to fix as a parent.  It is something that I can easily do for this silly monkey, and yet feel as though I am constantly failing my son in that same respect.

Where is the beautiful simplicity of the needle and thread to fix him?  He is not broken in the sense that I would return him, or want another version that needed less repair – but there are so many parts of him that need to be worked on, that need to be mended, that are misunderstood, or baffle the broad community of specialists and therapists and doctors we have built up around him like a fortress.

And still, there he stands, as though in some sort of bubble that we cannot break, cannot pierce, in order to understand him, to save him from himself and others that don’t understand him and – that don’t, or one day won’t – care enough to try before rejecting him.

Where is the needle?  Where is the thread?

How did this little monkey become a symbol for how simple it was supposed to be?  How much my dreams for my boy have had to be continuously ripped open, then sewn back up with a thread that is clearly not strong enough to hold.

What if I am not strong enough?

How do I mend him?  How do I help him?  I think I am doing what I can – maybe even all I can – and it never feels like enough because something new always comes out.

His speech is improving, and his behavior is deteriorating.

He understands more, but I understand him less – he screams at an eardrum-perforating pitch with clenched fists and tears springing to his eyes and cannot tell me why.

His sister is embarrassed by him.

Sometimes, I am embarrassed by him.

Oh God, that’s so horrible to say, but it’s true.  Sometimes, it’s just true.

And I’m not supposed to feel that way because I have a Special Needs child.  It would be okay if he were typical, and screaming his head off in the lighting section of Target.  It would be funny to complain or tweet or post a picture somewhere of my tantruming almost-four year old.  I would have other moms shaking their heads because they can relate, they’ve been there.  There would be reassuring comments on Facebook or Instagram, and funny little vignettes via text from friends regaling the times something similar had happened to them.

But not if he has Special Needs.  There are different rules.

I’m supposed to say he has the Autism “Super Power”, or the “Magical” brain malformation gene where he has the ability to make part of his brain disappear from the MRI images right before your eyes (only to have other parts magically appear as a dark cloud within his gray matter all at once – also called a Stroke. Or would that be an “enchanted” Stroke”?).

Do I sound somewhat bitter and jaded about some of this?  Well, I am.

I am not that mother – I don’t buy into this being a super power, or magical gene.  Nothing about this feels otherworldly. Unbelievable, maybe. Dream-like?  Occasionally – but not in a good way.  There have been no unicorn spottings here, no leprechauns, we don’t even have a box of Lucky Charms in the house (partially because food coloring “magically” turns both of our kids into maniacs).  I dearly wish I could be – that I had that cheerful outlook and optimism that I see and hear about and read about from so many other mothers in my situation.

For me?

It. Just. Sucks.

Do I love my son? Absolutely.

Do I wish that he didn’t have this myriad of diagnoses? Yep.

Do I wish I could magically fix him (for whatever that word means here)? Of course.

But I have not found that thread yet.  I have not seen evidence that it exists alongside these “super powers” and this magic that we have supposedly been “lucky” enough to inherit along with Owen’s genetic soup.

So we will try, and we will fail, and we will succeed, and we will have triumphs and setbacks, and I will keep my sewing kit as fully stocked as I possibly can.

Because there is always mending to be done.

Because I am his mother.

And he is my thread.

2013 Owen

Comments

  1. says

    This is so heart wrenching. I cannot relate to your situation, but to your feelings as a mother? yes. When our last child was hospitalized for nine days, on the brink of being life flighted to Children’s Hospital, I felt a sense of helplessness that was unbelievable yet all too real. Thank you for sharing this with us. You will do what you need to do for your son, especially if you keep letting out the darkness in writing or wherever works for you. It makes room.

  2. says

    Let this space be your thimble, friend. It’s safe here to say whatever comes out without fear of judgement. Press hard and, in the ways that we can, we’ll try and share some measure of the sharpest points. Sending you love and your own virtual fortress of support. xo Strong, mama.

  3. Marie says

    It is so refreshing to hear someone admit to the dark side that exists in our simply struggling to be the best human parent we can be. A breath of fresh air that will connect other hearts to you like the web of a spider that can eventually be sewn into something that will catch the “special” in each child and hold it there.

  4. Claudia says

    Yes, yes, yes. Most days I am consumed with worry and fear for what the future holds for my son…..thank you for your words, love and grace to your beautiful family….

  5. says

    I am not a mother, and yet this piece just pulls at me and I have been reading parts of it over and over again. I am in awe of how raw and real and honest your writing is here and of how strong you are to say what you say. Sending you lots of love and support as you walk this path.

  6. says

    Beautiful and well “said.” Believe me when I say I understand. I promise you the bitterness will fade, and the embarrassment will too, but the wish to mend will remain. I was sitting with my boy today (13) waiting for his special bus and I was overcome with a sad curiosity of what we would be doing at that very moment, if we had not heard the word Autism. Yes, there will always be mending to be done.

    • thelatchkeymom says

      I read someone else’s comment about Target – I do think there’s something about Target. We’ve had TWO Code Oranges at Target with my son. Now, that’s embarrassing:)!

    • says

      Your thoughts about “where would we be right now” are ones I have too. It’s both comforting and frightening to know that I am not alone, but that they will likely continue to inevitably return again and again. It’s nice to feel understood though… J.

      • thelatchkeymom says

        Code Orange is an announcement they make, store-wide, when you have exhausted all other avenues to find you wandering child – who you swear you can hear, because he makes unique sounds, but you’re not quite sure which direction it’s coming from. My son likes to “explore” and he’s now way too big to contain in the store’s cart. Good times at Target:)! My other three kids usually pretend they don’t know who I am, when I’m shamefully held up for public spectacle at the Customer Service Desk.

  7. says

    We are just beginning our journey, my son has Autism (recently diagnosed) and I find myself asking the same questions daily. I don’t understand him and am often embarrassed by his violent (mostly public) outbursts. There must be something in the air at Target I swear…

    • says

      It’s not just the embarrassment or the outburst though… It’s that if we complain about them, we are more cruel than the average parent because of our children’s circumstances. It can be very isolating… But I totally agree about Target. It is the source of both my biggest nightmares and fondest desires.

  8. Aaron Morris says

    I wanted you to know that I have followed your blog for quite a while. My son has moderate to severe autism and while he and Owen do not share all of the same difficulties they do share many. Sometimes your words make me cry, sometimes they make me laugh and sometimes they just make me feel like someone else understands. This post is my second favorite of all you have written. Thanks for helping the rest of us out there to understand that why we feel isn’t heinous or awful sometimes when we get frustrated, depressed or even embarrassed by the same children who mean the world to us. I’ve never me Owen but I do think of him sometimes when I look at my son and when I pray for my Ethan I sometimes pray for him too. I hope that’s alright I know you have written about your feelings on that subject. Thanks for being honest with us and sharing your joys and pains and making those of us with such abnormal lives feel a little more normal from time to time

    • says

      Wow, Aaron. I am so, so touched by what you have shared – all of it. Yes, I have mixed feelings about prayer, but I know exactly where I stand on the intentions behind those who pray for others – it is nothing less than an act of selflessness and pure empathy, and something to be honored and appreciated. Your Ethan is a lucky, lucky boy. Please continue sharing here. I will look forward to hearing from you… J.

  9. says

    Thank you for sharing this. The honesty helps in so many ways. My daughter doesn’t have autism (at least that’s what they are telling us) but she has developmental delays that are undiagnosed. The want and need to fix things for our kids is so strong and frustrating. It helps to know there are others out there who have similar emotions.

  10. says

    I love your writing so very much. It’s just amazing so thank you for sharing. I have had a few moments like this when my son is upset because his damaged brain won’t let his body do or sound like he wants it too. It kills me but then it passes until next time xx much love to you xx

  11. Jay says

    Sorry to dredge up an older post, but I’ve only just discovered your blog and have been reading through, and I just had to comment on this one.

    Owen is blessed to have you. Period. As an Autistic young adult, I /get/ what he goes through. The times where there are no words, only stimming and noises and TOO MUCH MUCH to speak. I couldn’t imagine going through it from a parent’s side, watching someone you love and being locked out the bubble around them. I’ll never know that feeling, as a non-parent, but as an Autistic kid, I want to say this: it’s okay to be bitter. It’s okay to admit that autism is not some magical difference and sometimes it bloody well sucks. It’s /okay/. You should be able to say that aloud without giving over to the ridiculous expectation that having a special needs kid means you’re supposed to enjoy the crappy parts more. It just is what it is and sometimes that “is” is really damn hard.

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