those moments

*

It’s one of those moments. You know THOSE moments, don’t you? The ones where there’s so MUCH – so much to do, so much to decide, so much to process – that I am all but paralyzed by the cursor flashing on the blank screen.

It’s one of those moments when everything – every single thing – is overwhelming. When everything needs attention NOW. When major decisions are on the line. For EVERYONE.

When anxieties flare and like flaming dominoes, we set one another ablaze – a family of roman candles.

When every piece of information comes through a filter of fear and insecurity and My God, are we doing the right thing by EITHER of our kids?

It’s one of those moments when I sit in the neuropsych’s waiting room for two hours and watch the parade of kids march by. When the armor’s down and every story in the room seeps in. The little girl without words who is so obviously trying to communicate SOMETHING to her mom. The mom’s helpless expression as she hands her the worn laminated sheet of ten or so photographs to choose from. The frustration that bleeds into the room when it becomes obvious that ten photographs just isn’t enough. Or the boy performing verbal gymnastics in the room behind me – grunting and shrieking, then singing and grunting again. Or the girl who runs headlong into the couch. Again and again and again. The tired eyes around the room. The mom who looks at me and says with a hoarse laugh, ‘A margarita machine would really go over well here, don’t you think?’ The mom who goes to get a therapist to help her coax her daughter out of her hiding place. The sadness and resignation in what passes for a smile between us as she walks by.

When Brooke’s neuropsych - the doctor that I’d follow to the ends of the earth, the one who’s known her since the beginning, the one who calls her ‘sweetheart’ and means it, the one who talks about ‘our kids’ with a tenderness that makes me want to hug him - when he comes out of the first two hours of her evaluation and I brightly ask how she’s doing and he quietly responds that Well, she’s moved into a new test based on her age and Well, it’s a lot tougher for her, and Well, do I notice a high incidence of decontextual laughter? And Well, she really struggled with some parts, but don’t worry, we’ll have plenty of time to talk as we move through the process and My God, all I can think – the only thought in my head – is HAVE WE FAILED HER?

When I read disappointment into his face. When I feel like he expected to see more progress – more something. And I think What are we missing? What haven’t we done? Have we been fooling ourselves? HAVE WE FAILED HER?

When I go home to try to explain it all to Luau and he asks me – perfectly reasonably, ‘Are you sure you’re not reading into it, babe? Are you sure that he was really saying any of that? Are you sure it wasn’t just what you were hearing?’ And I can’t honestly answer him because for God’s sake, I don’t know.

How do you remove the filter? How do you take away the fear? How do you soothe the insecurity when it comes to having to constantly be the final word on where and with whom and how and what your kid will take and learn and be fed or not fed and be exposed to and be treated by and how any or all of that might help mitigate the challenges that hang over her head EVERY GOD DAMNED DAY. And then you have to monitor it all and try to somehow magically discern whether or not it’s actually working or if perhaps some part of it is working but others aren’t and well – How do you remove that filter when the doctor that you’d follow to the ends of the earth is talking to you about your baby girl and you’re sure that the hidden message is that somewhere, somehow, in some way you’ve failed her?

And when that’s not even the whole picture because my big girl, my Katie is struggling – the one who is the super star, the kid that everything comes so easily to. But when suddenly a thread of anxiety is woven through every damn thing that she does. When it takes her weeks to confess that she’s having a hard time, that she’s feeling lonely. That she’s convinced that she’s different. That she doesn’t know where or how to fit in as her classmates’ interests change dramatically – and hers don’t. When we spend hours and hours over those weeks trying to untangle the jumble of emotions to get to her truth. When the journey to her emotional center takes me to my own. When we finally find the single, angst-colored thread that we’ve been seeking. When it’s so tempting to yank at the damned thing, but we can’t because it starts to unravel with the slightest tug. When we follow it, winding around and around my sweet girl until seeing so clearly that it’s attached to my own ball of yarn.

And THAT’S not even the whole picture. But well, is it ever really?

Yes, it’s one of those moments.

When the day is starting, proofreading is impossible and run-on sentences will have to suffice.

 

 

 

 

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30 thoughts on “those moments

  1. DOAM, the fear, the loss, the confusion, the disappointment, the uncertainity, the FEAR, not sure if I said that 1 already….holy mother of GOD. FEAR.
    You are having 1 hella week….and I get it. Me too. Anniversary week sucks big f’in time.
    I’m here….

  2. It is impossible to completely let go of the fear, the worry. We can sometimes get caught up in moments of clarity, moments when our kids are moving seamlessly through the world, but the overwhelming-ness of it all–at least for me–always finds a way back in.

    Just know that the very fact that you have written this, that you see it and recognize it and really really SEE it, will make all the difference to both of your girls. In the end, that’s all we can really do for each other. There’s something in validating the hardships, the challenges, the struggles we all face that make them a tiny bit less so.

    Hugs to you and both of your girls.

  3. Seems alot of us are in this place right now. Your word, again, could have been mine. I love your run on sentences because they are real and the inability to breathe while saying the words, comes barelling through. Thank you. I can’t fix it for you. Can’t fix it for myself, but your words make it ok to feel. So thank you.

  4. I feel exactly the same way-the constant ache in the chest, verge of tears because someone cuts me off in traffic and always feeling like we are not doing enough–keep holding on to the tiny moments-

  5. Wow. I’m having one of those moments where I just don’t know what to say. Because I don’t think there really is anything I CAN say that would make it all better, or even help. But what I will say is that as a parent I’m sitting here in tears after reading your post. Because as a parent I identify with all of the feelings that you write about. My wife and I have similar conversations every day. I’ve come to believe that the feelings of inadequacy and the fear of “screwing-up” our kids must be a normal part of life. We don’t face the same type of challenges that you do, but you guys are not alone…

  6. We need a break. We all do. And no matter what, that break doesn’t come. We could be on a gorgeous beach in Costa Rica, and even still, our heads would be full of our children. I don’t know what you need babe, but I sure hope things ease up for you soon. I know that ever mounting pressure. It’s no good.

  7. Screw run on sentences, and proof reading and unintelligible rambling. Sometimes you just have to say, to feel it, to put it out there so that it doesn’t consume you. Like it or not, our lives are all about this constant fear, the feeling that we are one tiny step away from everything falling apart. We work so hard to build the perfect plan, to line everything up just so, to make everything perfect for everyone, that we are destined to have days when the house of cards is falling down around us and we can’t stop it. You are an amazing woman, wonderful mother, and terrific person, but everyone has times when they question their ability to get up and continue the fight. Just know that your online family is here to support you and encourage you, and if you need help getting up off the floor, we are honored to be able to lend our hands.

  8. Jess, it sometimes startles me when our ups and downs so closely mirror, since we are “strangers.”
    I hear you.
    I have only bits to offer, but hopefully not useless ones:
    Can you call the doc and ask heartfelt questions?
    What helps me right now is reading Hopeful Parents. Thank you for being one. Truly, it’s my only pallative care some days; i’m not even sure why but it does.
    You know guilt is a wasted emotion, so if you let it in, let in pride, too. If somehow your child’s anxiety can be your fault after your journey of infinite care, then what about the countless victories, successes… That your child wasn’t the one in waiting room struggling with inadequate PECS? Will you take that credit? And was that child’s nonverbal struggle HER mom’s fault? You know it’s not. So I send you love and forgiveness that I want you to regift to yourself if you can. It’s all I got. I feel the exact same as you. It’s just i can’t hear myself, but I can hear you. I can’t help myself, but I hope in some tiny way I can help you— now THAT would really help me. No pressure.

  9. I understand, my love. Among other things relative to Katie, she’s becoming a pre-adolescent and it’s sounding pretty official at that. You’re doing, “better than you can” with both girls, sweetheart. There will always be steps forward and steps back. It’s part of the growing process (damn it). Please remember to breathe.

    I love you!
    Mom

  10. First, on Katie – I think I played with my Barbies until I was 13 or 14. My friends were wearing lipgloss, and I was too. But I was ok straddling childhood and adolescence in this manner. Help Katie be Katie, and she will be fine. Oh, that we could see into the future!

    Now, for Brooke – as moms of ASD kids, we have two choices (as far as I see it): we can second guess every decision we make and “what if” or “why didn’t I” ourselves into an early grave…or we can make choices and move on. I do a lot of both, but I am trying to move into the second realm (and 300 mg/ day of Wellbutrin is helping immensely…LOL). Where is Brooke today versus where she was three years ago? *That* is the measure of progress. 12 months ago, my son would barely acknowledge anyone. 6 months ago, I couldn’t pry his hand off a light switch. Today, I dropped him at preschool and there was a “friend” waiting for him who just loves him as he is, nonverbal and tantrums at all.

    Where is Brooke today versus three years ago. Two years ago. A year ago. Write it, see it, and breathe *knowing* that you are doing the very, very best you know how.

    And then go get a pedicure or a book or something just for you.

  11. I am right there with you to the tenth degree this week. We all are. At 12, we’re finding out puberty meets autism is not pretty. In the end, we love our babies and our hearts help us make the right choices. God did not put you on this earth to fail those girls, but to help them. Trust in that to see you through (and self-medication helps too….might I recommend the M diet?….Mallomars, M&M’s, Margarita’s, Milky Way, Mojito)

  12. I’m sorry for the pain you’re feeling. I’m so sorry as I read each reply on your blog and Facebook, that so MANY of us feel it. Thank you for sharing it so openly – seeing so many other hands go up and say “me too” has made me feel a little bit less wound up inside.

    When my boys were Brooke’s age, it was the first time that the gap in developmental maturity was clearly noticeable. The first quarter of school was especially tough. Maybe Brooke is a little extra stressed right now – add in the doctor’s office, and it’s not going to be a 4 star day. In August she probably would have done better, and two months from now, she might take that same test and do amazingly well. Unfortunately, we can’t keep neuropsychiatrists in the cupboard to take out on our child’s best day to do the testing in the living room. One thing is for certain.. YOU are doing an amazing job.

    I agree with Molly. Take a look at where she is in comparison to the very beginning. Our kids are so influenced by their environment. Any little thing can make or break a day. Look back at some of your posts. In spite of bad days or tough times, your girls are happy. It’s unfortunate that Katie is having a hard time, too. It must be tempting to want to take all the blame – but you are a family, and your domino visual is very apt. What happens to one, happens to all. It affects everyone. In this case, it’s not a bad thing, but it is definitely *one more thing* at a difficult time. Thank God you found the string. I’m sure you will gently and carefully untangle it. Because you are a GOOD mother, you took the time and the care to see it.

    You are amazing, and your girls are lucky to have you. It sure isn’t easy.. but your HUGE love is always so clearly evident.

  13. “When the journey to her emotional center takes me to my own. When we finally find the single, angst-colored thread that we’ve been seeking. When it’s so tempting to yank at the damned thing, but we can’t because it starts to unravel with the slightest tug. When we follow it, winding around and around my sweet girl until seeing so clearly that it’s attached to my own ball of yarn.”

    Yes, that’s it.

    Sending love.

  14. Above all, don’t feel guilty about feeling guilty. You are here… and you have been elsewhere and you will go elsewhere. But for right now, it does suck, and it is scary and it just is. All of of is. And later, you can put it into perspective. But for today, glean some success out of getting through it. And gain some satisfaction from putting it behind you. Breathe in and breathe out.

    And for what it’s worth- Katie is not alone. She may be putting herself n that alone space- something that pre-adolescent girls do, but she is not alone. She, too, is learning how to breathe through it all. As is Brooke…

  15. I am Director of Exceptional Children’s Programs for a school district. Every day, we have more and more children with autism enrolling in our school. The levels of ability, behavioral needs, and family expertise is so diverse, each plan has to be totally unique. Not only does it have to be unique, it has to be ever changing.

    I believe that my personal experiences with my grandson who is diagnosed with asperger and other mental health needs, give me greater empathy and compassion for parents who struggle with this horrible condition.

    So many of the professionals sitting in my chair do not have a clue as to the horrors and pain that parents and siblings suffer. I have a personal determination to find a way to serve every child. I do not believe the child has a problem. We as school districts and society have a problem. We must find the right avenues for serving these so marvelous children with tormented minds. Their lives have little peace. Thank God for medications that allow them to sleep for just a little while.

    My heart breaks for the battle weary parents who have dealt with the disorder for years, I cry for those new parents who still are holding out for the miracle that will help them live in harmony with their child. I see the Post Traumatic Stress Syndrome in those glazed eyes as the child slips into the ultimate meltdown.

    I wish I could give all of the parents a big hug and tell you that it is going to be ok. Alas, it will be ok until the next one. My heart goes out to you. You have not failed your child, we are failing until we find the key to this disorder.

    Your friend mjb

  16. Oh, Jess, I hear ya. So many days I wonder with Nigel – I got him to this point, but it seems like he’s hovering, on the fringe, functioning at his own level but not progressing, not meshing. And I fear for his future, and mine, and how they will be more than intertwined.

  17. Damn, I *hate* when I come to read your blog and find myself sobbing before the midpoint because I feel EXACTLY THE SAME WAY. All I can say, sweetie, is that you’re NOT alone and you’re NOT failing anyone.

    Sending love and belief.

  18. Hi. The struggle in what you have written strikes me as a wave rushing onto the shore. Please, please give some thought to reading a book “Learned optimism” by Martin Seligman. In it you will find some investigation and thoughts about the difference between men and women. I used to be the one who took my son for his interventions – to be in a room filled with women; who were seeking to help their child interact better in the world. Women represent what is great in this world. The book might help you to see what thought patterns are occurring for you and others. YOU are doing the absolute best you can. Love to you all, Hugh

  19. CW ~ Having one of those weeks myself :(

    RJ ~ Jess, I feel inadequate every day…

    TB ~ man am I having one of those days, weeks, months, whatever. I have either been in tears or wanting to pull out my own hair today! Such a helpless feeling when school people and family are looking to you for answers, but there is noone else to turn to for help so we go with our gut. big hug to us all

    RB ~ Thank you for voicing this, for sharing your thoughts, your feelings. It helps so much to know I’m not the only one feeling all of these complex feelings…and the fatigue of it all.

    Even as we doubt ourselves, we must remember that God chose us for our children because we truly will be the best possible advocates for them. We all must trust that.

  20. thank you all so very much for your comments. once again, the sense of community is like a lifeline in the middle of the ocean. we have to keep telling our stories – if not for the million benefits to our kids, then to keep each other above the water line.

    • Very well said Jess. It is sort of like that line from “I Am Legend” – “If you are out there, if anyone is out there, please, you are not alone…” Just to read, connect, and know, I am not alone.

  21. Yep, those moments. Dang moments. ((hugs)) to you. And I know you love your dr, but I truly hate “decontextual laughter.” Please … that’s my first clue that there’s some kind of anxiety and fear there that I need to address, so how about calling it something helpful. Like hidden clue laughter. Or helpful laughter. Or stressed laughter. “Decontextual” makes it seem so … wrong. And it’s nothing but. Here I’ve gone on a rant. ((hugs))

  22. These instense moments of doubt about what we should be doing or should not be doing…this is when I often have to hand it over to a Higher Power and trust the wisdom of my children’s souls.

    On a soul level, I am not “the parent.” We are co-creating. Sharing info. Ever expanding. And it’s all going to be okay.

  23. I’ll tell you something. I had one of those experiences with J’s neuro ped not too long ago. When we saw her again for Z’s appt, I had to reference our last visit, where she had seemed to me, well, disappointed. She informed me she was anything but, had seen some growth, was pleased with the new school we’d fought to get him into, etc. I completely misread her. I’m so sorry you had to feel that way, because I know I was completely disheartened during that first ride home. I can’t tell you what he was thinking, but I am certain, as I am for my own two, that you are doing EVERYTHING possible for both girls, with their mostly different (and on occasion, similar) needs. If everything else is ambiguous, at least know that.

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