Lost together

By Mir
December 8, 2010

The God’s honest truth about Monkey’s bizarre probably-a-seizure is that it was really scary and knocked us for a loop, but it’s not the scariest part. If he had just had THAT, just that one incident which is already fading in our memories (“Do you remember exactly what he said?” Otto and I will ask each other, replaying the scene over and over again, grasping to remember exactly how it happened), which has not been repeated, we would be feeling better now because it hasn’t happened again. And also because everyone is content to point at the Incident Where He Clearly Wasn’t Himself and say “That was not Monkey. That was something weird going on.”

But the scary part is everything ELSE; the meltdowns, the paranoia, the grand declarations of the things he will need to do “to protect himself,” the weaving of stories about others which are so completely bizarre and implausible but feel like truth to him. That’s what scares the crap out of me, daily. Because what if that’s truly him? What if it’s not “something weird,” but instead the person he’s becoming, the person who is no longer merely “quirky” but has a big scarlet A for Autism on his forehead? I thought that when every day was hard it didn’t hurt so much, but we’re back to every damn day being so, so hard and yeah, the pain feels never-ending. I don’t look not to hurt, anymore. I just try not to hurt so much I can’t function.

After all, if he can get up and keep going every day, so can I.

So the God’s honest truth is that when the neurologist’s office finally called back to discuss his test results, there was a part of me that WANTED them to say they’d found a tumor. Because that would mean it’s Not Him. That would mean maybe everything had an explanation that isn’t “He’s autistic, dumbass.” And the guilt and the sleepless nights over half-wishing that for my child… well, I’m sure you can imagine. What kind of mother wants that? Me, apparently.

Still. They called and said the EEG was clear, but the MRI presented “an area of concern.” Let’s schedule a CAT scan to take a closer look. And as the world began to spin just a little bit sideways, the nurse rushed to tell me not to worry. HAHAHAHAA. She went on to say that from the doctor’s notes it looked like the concern isn’t the brain itself, but his sinuses. “What does that mean?” I asked. She said she wasn’t sure, let’s get the CAT scan out of the way and then the doctor would be in touch. Fine. The CAT scan is today and Monkey is seriously jazzed about the prospect of being injected with radiation. (I hear “with contrast,” but Monkey hears, “I might glow in the dark afterward.”)

Can there be a tumor in his sinuses? I have no idea. Could that produce seizures and/or weird behavior? Ditto on the not knowing. I don’t know what we’re looking for; I don’t have a whole lot of hope anymore about this giving us any answers.

In the meantime: Medication adjustment. New medication. New strategies at school. And still, meltdowns. Paranoia. Violence. And as of yesterday, his therapist of over three years telling me very gently that his needs are now beyond her capabilities, and she will help us find someone else, but it’s time for us to move on if he is to get the help he requires. I knew it before she said it, but it still felt like a blow to the gut. She said “I’m sorry” over and over, and I knew she was not apologizing for referring us out, but for what he’s going through; what we’re all going through right now. I wiped away tears and told her, “I don’t know what to do. I don’t know where he is. It’s like he’s gone.” And she said she was sorry.

Monkey only spent half the day at school, yesterday. The details of his spectacular implosion that led to the shortened day are unimportant, but by dinnertime I was pretty much hanging on by my fingernails. Everything out of my mouth ended in near-hysterical laughter, as the absurdity of trying to “act normal” pressed down upon me in that laugh-or-you’ll-cry way.

Otto made some comment about some stress or other he was needing to handle, and with a grandiose sweep of my arms I announced to my family that no one needed to be worried or upset about anything, right now, because I WAS HANDLING EVERYTHING; anything which merited any unpleasant feeling I WAS RIGHT ON TOP OF, relieving other family members from the need to feel anything other than fabulous. Otto half-grinned at me from across the table, unsure if it was okay to find this amusing, and to my right, Chickadee’s face took on a look that was an equal mix of bemusement and concern.

To my left, Monkey’s face softened and he placed a gentle hand on my arm. “Mama,” he said in a small voice, “I think that you handled today really well.” As he patted my arm I laughed, brayed until I wept, because he was the old Monkey, the one who loves fiercely and feels deeply and wants only to make it all better.

So he’s still in there. I’m not sure which one of us is going to lead the other out of the forest, just yet, but it does make the wandering a bit more bearable.


  1. jodifur

    Oh Mir, I think you handle all of this so well. And you are an inspiration of grace under pressure.

  2. The Other Laura

    I am sending some serious good thoughts your way, and saying a little prayer, and maybe lighting a candle.

  3. Kelly

    Oh Mir. Big cyber hugs

  4. Leandra

    If I could fix this for you, I would. I’m so sorry. I’ll be honest, I don’t know what to hope for — certainly not a tumor, but hopefully something that’s fixable.

    Is homeschooling still an option? Maybe that would take some of the pressure off of both of you — knowing that there won’t be any blow ups at school to dread.

  5. Mom24@4evermom

    So, so sorry. I hope you find the answers that lead to help and I really hope you all find help. I can only imagine the fear and the pain.

  6. ste

    I’m gonna be thinking of you today. Sending as much goodness as I possibly can, hoping that it helps bring you a few moments of joy today.

  7. Randi

    Yeah – you definitely need alcohol. And HUGE chocolate chip cookies. Sending good thoughts about today’s CT scan your way!!!

  8. mamalang

    No great words except good luck. You’ll definitely be in my thoughts today.

  9. Annie @ PhD in Parenting

    ((Hug)) I can’t imagine how difficult it must be to go through all of that and to feel helpless in it all. It does sound like you have a great kid on your hands though.

  10. Ann from St. Peter MN

    I will be holding you in my thoughts today!

  11. elz

    Oh sweetie, would that I could take the hurt and not knowing away. Somewhere there will be answers, I just know it. I know how badly it hurts when our kids hurt and we don’t know how to help. I can’t do much but send you my good thoughts and virtual hugs.

  12. Shannon

    It just…sucks. It is so hard and totally normal to wish for an actual something {tumor} {stray ingrown hair} {cyst} for the cause. At least then you have something to focus on and be mad at.
    Hang in there. And email anytime you want to vent.

  13. Katie in MA

    Wiping away my tears – of sadness, of empathy, of frustration because I can’t fix it, of (bittersweet) happiness because at least you’re not storming the castle by yourself. What can I do to help, Mir? I’m here, and whatever I can do to help even the tiniest bit, please tell me because I want so much to make things even the slightest bit better.

  14. MomQueenBee

    The other stuff if too big to even talk about, so I will just say I hope your amazing ability to write the unthinkable is a comfort and ground wire to you. Blessings, Mir.

  15. heidi

    You are all in my thoughts and prayers.

  16. christina

    Weeping, as I so often do when reading here, and wishing you the very best.

  17. liz

    Sending you love, and hugs, and hope.

  18. liv

    my heart hurts for you. sending hugs and warm, fuzzy thoughts your way.

  19. Shelly

    Add me to the “I’m sorry” list. Will be thinking of you today~

  20. Caty

    Hugs, Mir. Hope the CT scan gives you answers. And makes Monkey glow. ;)

  21. Rita Arens

    Just said a prayer for you, sweetie. Hang on.

  22. Jenn

    Tears. Hang in there!

  23. Elizabeth

    Love, prayers, and support from here. Praying that you get the best pediatric neuro-imager/radiologist out there, and also one who can communicate with humans–in the same package. Praying for mercy for today, for the ability to do the next thing, because really, all you have to do is the next thing, and a day/week/lifetime is just a string of “next things”. And for peace that passes all understanding.

  24. MomCat

    Wishing you the strength to keep hanging on, Mir, for everyone and for yourself. You’ll get through it.

  25. Mandee

    You are one amazing mama, Mir. Add me to the list of people sending good thoughts and prayers your way.

  26. raina

    Oh, Mir. How frightening all around. I have an appointment with the neuro concerning my son and his possible seizure as well. Thats Monday and I might faint from fear sometime before that.

    Funny thing though, about the sinuses. Ive been noticing that my son is breathing heavily through his mouth and his voice is kind of nasal. Ive been giving him Claritin…now Im wondering if he has a problem with HIS sinuses as well???

    We have not had the MRI yet. So far he has had a CT scan and a sleepless EEG. Both clear.

    Good thoughts coming from me for you and Monkey!

  27. hollygee

    many, many hugs. To all of you.

  28. NTE

    I have been the one in the big metal tube, wishing they would just find something, in the hopes that this wouldn’t really just be me, how I am, my life now. It’s different, but I just wanted to say that I understand that part of it. The wanting of something to explain it away, even just for a few minutes.

    I think you’re handling it all really well too, and I wish you – all of you – all the best as you find your way through.

  29. another sue

    I sit a third of a continent away from you and weep. Because, uh, that’s so helpful, doncha’ think? I do wish I were closer so that I could be on the casserole brigade, or bake you some magic, no-calorie, gluten free treats. (Sounds yummy, yes?) Anyway, I am so glad that you are able to write as much of your story as you do, because in the back of my mind, I think there are others on a similar path for whom words do not come as eloquently, and I think it is good of you to remind us to be gentle with each other. We don’t really know the challenges others may be facing at any given time. Hugs to you special woman, hugs to your family.

  30. Ani

    I apologize in advance for the ass-vice, but I would like to suggest that you find a parent support group. While the internets are wonderful, nothing beats sitting in a room with a bunch of other people nodding their heads and completely and thoroughly understanding your story. And providing hugs and their own coping techniques, informed by life experience. You (and your family) are not alone.

    So sorry to hear all of you are going through this. I wish you answers and peace.

  31. Jamie

    Tears and hugs for Mir and family. This just sucks.

  32. navhelowife

    Prayers. And More Prayers. And I second the advice to try to find a parent support group. Because not only can they provide some face to face support, they know which doctors are helpful, which agencies to call, what to avoid, and so on.

    I know we don’t know each other in the real world, but please know that I am sending you many prayers. My email ears are always open.

  33. bob

    All I know to say is that I know you’ll both make it. Whatever it turns out to be, you’ll both find the strength to deal with it – because you both have hearts as big as the world. That strength will come from the love you have and from those that love you.

    Take care.

  34. Hally

    Somewhere across the country, a mama in California is reading this post while laughing through tears. And she wonders….Dearest Mir, would that I could buy you a bracing cup of coffee, I would. And I would take pizza & beers to Otto. And a plethora of Legos to Monkey. And unlimited texts to Chickadee. And a HUGE piece of fruit for Licorice….just so that Mir could breathe freely for knowing that for the next 20 minutes while the family is occupied, Mir could meltdown/vent/weep/scream/rant/stare at the wall/ignore the world, etc,
    We are thinking of you, praying for you, worrying with you, and laughing too.

    Hang in there Mir, I know you can!

  35. Mama Bear

    Add me to the praying for all of you list, and to the list of find a parent support group list. They are truly the people who know which doctor/therapist/specialist is best in your area. Even if you don’t want to spend the time talking about it, just having them as a resource is invaluable. Crossing fingers and toes for an outcome that helps everyone.

  36. Sheppitsgal

    Hugs Mir – sending positive thoughts your way, plus lovely shiny things xx

  37. Lisa in NJ

    Sending prayers your way Mir. This is so hard for parents of kids on the specturm, you are handling this wtih grace and humor and I love that. You are helping me through my issues with my son. In reading what you are going through, it makes me know that I’m not alone. I will be praying very hard that they find out what is going on with monkey.

  38. suzie

    I’m so sorry to see how much you and Monkey (and your whole family) are going through. I hope that answers and solutions, and all the right providers, are soon discovered, and that at least some of the stress can be eased.

    You are in my thoughts.

  39. SillyMe

    I hope you can feel the support and love that is being sent in your direction. I hope it helps even a little bit to know that people who have never met you (as well as those who have) are sharing your pain and wanting to do something to help. My part is this: I am praying for you and your family. And I really hope things get better for you really soon.

  40. elizabeth

    Big hugs and chocolate all around.

    you will find your way, sounds like you’ve got the right people around you to help you out.

  41. Sarah

    Praying for you and Monkey today.

  42. Mare Martell

    In the words of a wise woman, “You are pretty!”

  43. Holly

    I’m so sorry, Mir. I have no idea what you’re going through so I’ll just say this; I’m praying for you.

  44. Rebecca

    My God. All I have to offer are hugs and prayers. You’re doing every possible thing you can and I do hope you feel the love and support coming from… well… everywhere. ((((((((hugs))))))))

  45. Amelia

    Ditto Elizabeth (#23), who said it better than I ever could, and the votes for a parent support group. There’s something so relieving about telling pieces of your story — the pieces that make you feel most alone — and seeing someone across the room nod in true empathy, not just sympathy.

  46. el-e-e

    So sorry you all are having tough times. I hope today goes well and some answers are revealed. Praying for you.

  47. Jessica

    This is why the internet is bringing people together in many ways. I have no words right now (my own family is going through some desperate times right now due to a death in the family), but I’ll be praying for you and your family. I’m thinking this just widens your prayer circle worldwide, which can’t be a bad thing. *hugs*

  48. Kristi

    If I were a real friend, I’d just hug you.

  49. Julie in Austin

    Dear Mir, my thoughts and prayers are with you! When my son (now 8 and doing GREAT) was 3, they found a golf ball sized tumor in his brain. We were blessed to have an amazing Pediatric Neurosurgeon at our children’s hospital (Austin – Dell Children’s) who was able to perform a tricky surgery and completely remove the tumor. It was a terrifying time, and we still have a few minor issues to deal with, BUT my son is happy, thriving, growing, and LIVING now, so we have much to be thankful for. If you ever want some support from someone who has also been in a scary place, please email me any time. I hope this entire topic quickly becomes irrelevant for you and your family, and I don’t mean to scare you by bringing up my story, but I wanted to offer my friendship and support if you need it. HUGS to you and your precious family!

  50. Debbi

    Sitting here crying for you :-( Mir, I have no words, I wish I could say something that would just make things better.

  51. Burgh Baby

    Monkey is an adorable, sweet kid who *will* make it through all of this just as wonderful as he always has been because he has you and Otto and Chickadee to help. That’s one hell of a team to have on your side.

  52. dad

    In case no one has mentioned it to you Mim.
    You are a class act!

    Our thoughts are with today…and every other day.

  53. Debbie H.

    Sending more hugs your way. Wish words could make things feel better but I know that isn’t the case. Praying that some how this Advent season can help you all cope. Praying for better times.

  54. Karen

    Crying for you too…. I’m not religious but I’m praying for Monkey anyway. When my daughter was at her worst, there was a blanket of prayer and concern and positive energy coming from all directions, and I swear it had something to do with the miracle of her recovery. I believe you’ve got that blanket through all those you have touched daily with the sharing of your daily life, struggles and triumphs.

  55. Keryn

    Oh, Mir, I’ll just join with the prayers and the zen hugs and everything. God be with you and your family through this really hard time.

  56. Heather

    Sending hugs and praying for wisdom for doctors and stuff like that. <3

  57. JP

    Best wishes that all goes well today. I understand the wishing you had a difinitive answer, it is always seems easier to fight the known than fumble about in the dark with the unknown – even if the known is big and scary. Hoping the unknown is a small, fuzzy, non-scary thing for you in the end.

  58. My Kids Mom

    Thank you for sharing so much with us. I won’t be the only one to feel some of your pain today. I hope that all of us e-friends can each carry some of your burden and somehow make a difference.

  59. Michaele

    Just thinking….puberty can bring on some strange changes for a period of time as well, especially for those that are quirky. And on meds. We lived through it, but some days were rough.

  60. sophie

    Adding my good thoughts, fairy dust and mysterious light to all the others. You and Monkey will do this–whatever this is–the rest is just details. Wish I could do more.

  61. melanie

    Hey Mir,

    I hesitate to write this, but at the same time I really want to share my experience with my aspie boychild. My hesitancy comes from the fact that I don’t know Monkey’s whole story and I don’t want to presume to know the answers for your family. I can only tell you what worked for my family, and hope that there is nugget or two that can help you in my story.

    When my son was first dx’d the developmental pediatrician told me that no medications were needed because they would be basically to help my son fit in in school setting. Since I homeschooled, she didn’t see that he needed any coping there, and added that she could tell that homeschooling “made all the difference” in my boy.

    Please know I am by no means anti-medication! In fact, I just told one of my best friends that she should open up her mind and consider it for her son… BUT i was impressed as I read this post that some of the symptoms you described could be side effects of medication, and then lo and behold you mentioned his meds.

    Perhaps the homeschool option might be something to reconsider at this point.

    On the other hand, I truly know we get but a tiny glimpse into what you deal with and my observations could be way off.

    Just know that I am praying for you. My aspie is 17 now, and I remember two scary times when I thought I would lose him to the world inside his head, but those times passed very quickly and he is … well, he’s just a very cool guy now! Just like Monkey!

  62. andrea

    This really, really sucks. I am so sorry. Prayers!!!

  63. Karen P

    Hugs and prayers.

  64. cardinal

    Joining the crowd to send you strength. I’ve been through scary, violent times with my son when I felt like the world had careened off its axis. Tinkering with meds (what a mild phrase to describe a roller coaster from hell) finally did the trick, as well as surviving puberty hormones. Testosterone has a lot to answer for, in our case.

  65. Andrea

    My thoughts & prayers & tears are with you & Monkey & Otto & Chickadee. Hang onto each other.

  66. Lucinda

    If I knew you irl, I would be right there holding your hand. But all I can do is pray for you. I think a parent support group might be a great idea but only you know what kind of support will help you best and I believe you will find it. Good luck and lots of hugs being sent.

  67. Diane

    Sending more hugs and prayers to you and your family.

  68. Susan J


    Please know I’m sending good energy to you and yours from CA. I found your blog from someone posting about it on the FT discussion boards & remember you as a poster there way back when. You’re an amazing and inspiring mom! I hope all of our love and caring can help you through this time of struggle. Be kind to yourself and know we’re rooting for you!


  69. parodie

    Your strength and hope inspires me to find some light in the midst of my darkness. Thank you. And here’s hoping you have more solid helpers and stepping-stones to normalcy soon.

  70. RuthWells

    Oh god.

    I nearly emailed you back last week saying “maybe if there’s something organic and treatable going on it would be a good thing?” so I totally understand your going there.

    Poor, sweet Monkey. So wishing that I could do something. Sending love, hoping it helps.

  71. Rachel

    Hugs & prayers to you, wish there was something I could do to make it better, but hugs & prayers are all I’ve got. Thinking of you…

  72. Erin

    All I can say really is … hang in there.

    I don’t talk about it much but my son has tourette and there are days that are harder than others and test me, and him, and the whole house. But the love is always there. As it is in your world. The love will get you through. It really will. Rely on it. Pull from it. Use it. Let it be your power.

  73. Kayt

    Oh Mir. I am so sorry. You ARE doing well, and I think it helps to hear it. It’s not easy, and it may not being going the way you wish it was, you’re strong and get through this. *hugs for everyone*

  74. MamaChristy

    I bet you know the “This is not how my life is supposed to be” feeling as well as I do. Hang in there – God has plans for us all. I know it.

  75. Sheila

    You are very, very pretty. So there’s that.

    I am sitting here at my kitchen table, thinking positive thoughts and sending up prayers for you and your whole family. As is, it seems, most of the internet. So there’s that, too.

  76. Megan

    Thinking of you – all of you – and hoping for an answer. I do understand the desire for something, ANYTHING concrete that will give you some kind of solid ground beneath your feet. I believe those answers will come, and I hope with all my heart that they come soon.

  77. Kristine

    Oh MIr, Hugs are being sent your way. I am sitting at my desk at work with tears brimming and ready fall down. I can’t fathom what you are going thru but only know what a mother feels when her child is hurt.

    Thinking of you –

  78. laura

    my oldest daughter had a ‘very bad thing’ happen to her when she was 6 and she was never the same. I did not think I was going to make it through the days that followed. Fortunately, I had other children that needed me too and the days passed. Every once in a while the child that was, peeks through like sunshine through storm clouds and it is the best gift in the world.

    You will get through this.

    You are stronger (and prettier) than you know.

    My prayers are with you and your family.

  79. Tara

    Big hugs to you and your family.

  80. Busy Mom

    Prayers for Monkey, you and your family.

  81. beth

    I can emphasize with a lot of this, both the unexplained seizures and the sick feeling of hoping for a (horrible) diagnosis just to *have* an explanation, which could maybe lead to a plan and help. Been there, done that. Hated the t-shirt. (With us it was a child who talked extremely late, and we were at the point that we had mixed feelings when the hearing test came back normal.)

    But it’s not so much wishing for the bad stuff, as wishing for the plan, because we want to be able to help. Or to show the kid how to help himself. It’s the helplessness that is so soul-draining. Good luck, and here’s hoping the holidays come quick and give everyone a much needed break. And that the tests come back showing that all he needs is a hair cut to make everything all better. :-)

  82. Bonnie

    Add me to to the virtual hugs pouring in. You are not alone and you are strong. If we can feel the amount of love we can just from your writing I KNOW Monkey feels it every day in his own way. Please eat a lot of chocolate, it really does help.

  83. Melissa

    Thinking of all of you today.

  84. Fabs

    You are such an amazing woman and mother. You are in our thoughts and prayers. Hugs to you and all of your family. Hang in there!

  85. s

    It must be true – great pressure does produce diamonds because these last couple of posts are just amazing. (and yes, I already added Be a Problem Solver to the list of mom sayings my kids likely roll their eyes at behind my back) but the sadness and scariness underneath it all overshadows your seriously great writing – the pain makes it hard to appreciate what a spectacular writer you are. I just want to say I’m so sorry you are going through all of this -you seem to be handling it all amazingly well, and give yourself permission to be off the hook at times otherwise you aren’t going to be able to hold it together, and man, you do a spectacular job of holding it together.

    I truly wish I was half the mom you are…wish that we all could erase what you and Monkey and the rest of your family are going through. We don’t have half as much going on with the son of mine who concerns me, but enough to have such empathy for you because its really really scary to think there is something wrong with your child that all the love, hope and sheer wishing can’t fix. Makes me long for the days when a magic kiss and a bandaid fixed all their troubles.

    take care of yourself

  86. Heidi

    I experienced Trader Joe’s for the first time a few days ago while traveling. I told them I wanted to live there. One of the items I bought was a bag of Molasses Chews (very soft molasses cookies). I’m eating one for you. Wishing you and Monkey the very best today.

  87. Janet

    This one of those “friend of a friend” things, but I trust the information source: the person involved had a bad sinus infection which led to seizures. So yes, the seizure could indeed be related to his sinuses. Best of luck to you all.

  88. Chuck

    Mir, sorry to hear you’re going through a rough time. Hope you get some answers from the CAT scan and I wish you and yours the best of luck with everything.

  89. joaaanna

    I just cried a little bit for you. I wish that would take away some of your tears, but I know it won’t.

    My stepson has Aspbergers. I, too, felt so many times that it would be easier he had something I could see, touch, recognize. And that I could make others understand too. Because otherwise, who is this person who looks normal and is capable of so many good things, but terrifies me and does/says awful things. It sounds awful that you would prefer it be something ‘solid’, but then you feel like you can deal with it and handle it and make it go away. Otherwise – it’s… well it’s just… I don’t know.

    You are NOT alone Mir. And let Otto step in to take some of the pressure off of your shoulders. I hope with all of my heart that you find some answers soon.

  90. Half Assed Kitchen

    I wonder why the doctor didn’t call you himself?

    You have had more than your share of sucky events in your adult life. I’m hoping this is just something Monkey passes through…and that the CAT scan isn’t too hard.

  91. Eva

    Hi- I just want to say that I’m really glad this whole situation is not just getting written off to Aspergers. As a doctor I am very aware of the fear we have of “primary closure.” Basically, you know a patient has something so you turn off your brain to other possibilities and just assume the answer is their pre-existing diagnosis. I would just encourage you to make sure you trust your doctors, that what they say doesn’t ever go totally against your mama instinct and that if this CT doesn’t give an answer, pressure neurologists and psychiatrists to make sure they are very comfortable with his diagnoses and that he isn’t being misdiagnosed and therefore possibly mistreated. Wishing you strength and calm!

  92. Lana | RaisedbyPoker

    Breathe. Keep breathing. As mothers, we often walk through fire. You can do this. I know self-care isn’t at the top of your list right now, but when the worst of the crises is past, give it a turn at the top, because you’re in this for distance. Much love to you and yours…

  93. Aimee

    Oh wow. It’s hard to even know where to start, except to say that I’m hoping and praying so very hard that the CAT scan helps you figure things out and that everything will be okay. {{{hugs}}}

  94. Pam

    It is amazing what situations drive us to wish for sometimes, isn’t it? But all we really wish for is answers and a plan. I pray you get both – and that they are easy. Thoughts all the way from Texas —

  95. Chris

    I just want to swoop you all in my arms and hold you for a long, long time.

  96. Chana

    Just wanted to let you know, I was thinking of you and wishing it gets better for you soon.
    wishing you ,”peace only”, (as they say in The Gambia)

  97. JennyM

    Oh, Mir — hugs and prayers, for all of you. I know that feeling of “I can only laugh hysterically at this point because the alternative is completely losing it and I can’t afford to do that.” Here’s hoping your maelstroms, internal and external, subside quickly.

  98. Em

    If it makes you feel any better, there is not a single person in this world that could handle this well. No one. The fact that you are putting one foot in front of the other is spectacular in my opinion. You are a wonderful mother even when you probably wish you could take a vacation from it. And you have wonderful kids, even when they DO take a vacation from it (like Monkey’s vacation from himself. Lousy trip it seems). Know you and your family are being prayed for. For good outcomes and strength and peace while you wait for them.

  99. Angie

    If the virtual hugs, well wishes, prayers, and tears shed for you and Monkey could fix everything, you would be set for life. I can’t believe how much I care about a stranger half a country away, but I do. I am so sorry that you’re going through this at all, but especially now, during the holidays. I’m adding my prayers and good thoughts to those of everyone else here. Hang in there. And, you know, a little wine couldn’t hurt.

  100. Headless Mom

    Comment # 99? Obviously the internet is sending you lots of hugs and love today. Add me to the list.

  101. Susan

    Ohhh, Mir. I have no words . . . I can only say that I think about you, Monkey, Otto and Chickadee every single day. Praying for peace, strength (and some laughter and sanity sprinkled in there) in the midst of these daily struggles you’re facing.

  102. L

    Has he been tested for PANDAS?

  103. divrchk

    You are in my thoughts and prayers. I hope this passes quickly and the glimpse you saw last night comes back out in full force. He’s still there.

  104. J from Ireland

    Oh Mir, I am so sorry for what you are all going through. I don’t know what to say. I will say a prayer that you get a little light on things. I do know that no matter what happens you will handle it brilliantly. I have 100% faith in your strength, dear. Best wishes x

  105. pam

    I wish I had great big huge arms that could sweep grandiosely around us all and make it all better. Alas I do not but I do pray and will put you in the lineup…

  106. EmmaC

    Oh, Mir. I’m shooting laser-beams of love toward you and and Monkey and the rest of your family right now. I can’t even imagine what a dark time this is for you, and I hope sharing it here helped make it feel a little lighter.

    And if nothing else, here’s a little treat for you: http://bit.ly/e9B9wM. It’s a recipe for gluten-free popcorn-oat cookies. They sound kind of improbable and weird, but I swear to you they are one of the best things I’ve had in a long time. Like kettle corn in cookie form. My husband and I stood over the counter and ate the entire batch (which is only 6 cookies, but still.)

  107. Katherine

    I pray that the CAT scan will give you some answers. I know that no answers can be awfully scary.

    I hope that the Christmas break will give all your family a real break to relax and let a little stress out. If you lived up north, I would say a snowball fight would be good, but since you live in cold, but not snowy GA, how about a marshmallow fight. We made marshmallow shooters out of PVC pipe one year for Christmas for everyone (from 2 yo niece to grandma) and had a wonderful outdoor marshmallow fight!

  108. Michelle

    Oh Mir, you are so much stronger than you think! You have kept going, you keep taking care of your family, and you have the grace to share the trauma your family is experiencing with all of us. Huge prayers for all of you: that you find the reason for Monkey’s extra difficulties and that you are able to see a light at the end of the tunnel and head for it.

  109. Jeanie

    I can only imagine what you’re going through and how very frightening it is. At least your sense of humor is still intact. Prayers, hugs and love to you all.

  110. Susan

    Oh, Mir! I wish I could take it all away; reading this feels so helpless, and I know it is only the slightest fraction of the helplessness you feel. Sending love and prayers and peace.

  111. Jaime

    adding to the pile of cyber (((HUGS)))

  112. Leslie

    Oh Mir, please know my thoughts are with you….

  113. Catherine

    I have to say that the only time my Aspie daughter’s behavior went into the realm you describe is when she took Adderall. She went ’round the bend for sure. Her neurologist thinks it made her manic. She started laughing uncontrollably, climbed a tree despite my ordering her down, and said, “Mommy, I can fly!” She was also taking seizure meds at the time. Terrifying and nightmarish.

    Poor Monkey and family.

  114. Karen R.

    Hugs and positive thoughts sent your way. Please consider pulling Monkey out of school for a while to see if things improve. The only times my total sweetheart of a daughter had behavior issues were when she was in a bad (for her) school placement. In her case she would keep it together at school and melt down — for hours — at home. The problems magically disappeared when she was in a more appropriate placement.

    Ask about the possibility of home-based education. In my district, that means 6 hours a week of home instruction with a teacher, plus therapeutic services. We utilized that for half a year while waiting for a private option (which our school district paid for) to open up.

    Best wishes and hopes for improvement. Take care.

  115. paige

    Oh my dear.

    I am so sorry…and I know, down to my toes and deep in my bones, how this feels. I’ve had a pediatric psychiatrist look me in the eye and say “The best possible result is that your son has a brain tumor…*that* we could cut out.”

    And he didn’t. And she was wrong. My son had it all for a while…auditory and visual hallucinations, paranoia, feelings of worthlessness, the recurring, intrusive thought that the world would be better if he were dead. We sat up with him night after night, trying to discern if this was the night we needed to drive him to the ER and have him committed.

    We found the right therapist. The psychiatrist turned out to be fantastic beyond our wildest dreams. Medications finally balanced. Our son is back. He is scarred and battered, but he is whole. So are we.

    Hang on, Mir. Hang on. Gather information. It’s ok to feel helpless and frightened and angry. All you have to do is get up when the Beast knocks you over. Just get up, even if it’s just to get to your knees. Don’t think further than the next appointment. Don’t try to process it all at once. This is the worst place, the scariest part…the part where know one knows exactly what’s happening.

    Most importantly, take care of yourself. Even it it’s just 15 minutes a day, do something nice for yourself. Stay as sane as possible inside this insane chaos.

    I am so sorry for all of you. That feeling of losing a child who’s right there with you…it is devastating.

  116. Rebecca

    You are an amazing woman and mother. I have no words. Only tears and prayers for you and your wonderful boy!

  117. addy

    He’s still in there Mir. Hang on for the both of you. Hope we find answers for you.

  118. E's Mommy

    I’m so sorry that all of you are going through such a scary, heartbreaking time right now. I’ll be thinking about you all and hoping the doctors or therapists or someone finds some answers or solutions for you soon. Like one of the other commenters said, I don’t think there’s any way to handle this kind of thing well, you just have to do the best you can and it sounds like you are doing an awesome job loving Monkey during a really scary time.

  119. LizNeust

    Sending virtual hugs and literal prayers for you, Monkey and your entire family.

  120. Jen

    ((((Hugs to Monkey))))
    ((((Hugs to you)))))
    ((((Hugs to big sister Chickadee))))
    ((((Hugs to Otto))))
    Thinking of you and your family.

  121. Another Dawn

    I’m a cranky old curmudgeon who rarely cries but this brought me to tears. I’m so sorry this is happening and I can only send prayers your way and hope that they find something totally curable that willl explain Monkey’s behaviour and that will be easily cured so he can go back to being him.

  122. Lylah

    Thinking of you and wishing there was something I could do to help….

  123. Lara

    Oh Mir. I’ve been meaning to drag myself out of the abyss to write for days now to see if there was any news. (I’m feeling better today actually, less than a week to our results and I no longer feel like life is on hold waiting for them – what changed? Nothing!)

    Thank you for your honest writing – I too have had that thought of it would be simpler if we knew it was … and felt like the worst person in the world for even thinking it.

    You are doing an amazing job of holding it all together.

    Here’s hoping you do get some answers and/or help/support soon. You and your family are in my thoughts every day.

  124. Melanie

    More virtual hugs!!

  125. Flea

    Oh Mir. You and Monkey make me cry. I’m so sorry too.

    Um, and have Monkey let us know if his pee glows in the dark after the injection?

  126. Emily

    No words. Just virtual hugs and plenty of prayers.

  127. mamaspeak

    And here I was making smarta** remarks back to you all day while you were venting on Twitter. I hope that my remarks were able to make you smile, though I suspect that the comments were too close to the truth to be very funny.
    You’re all already in my prayers, but I hope telling you adds to some sort of support you may gleam from this group. I too have been in the arena of not knowing and “almost wishing” for a diagnosis of anything. At least then you can address it in some way. That is normal. Not knowing is more than just hard. I wish I had answers for you.
    ((((((hugs)))))) Hang in there, we’re all pulling for all of you.

  128. Colleen

    My son, who has high functioning autism, gets facial tics and other neurological symptoms when his allergies get too bad and he gets too congested. So the sinus thing could certainly account for some of it.
    I hurt for what you’re going through – and I add my name to those who are sending you prayers of hope and comfort. Someone told me once “just love him….everything else will fall in under that.” It really is the best thing you can do – and you love him fiercely, that’s so obvious. Hugs hugs and more hugs

  129. sandy

    Mir I have no answers either. I hope that the new test will find something that’s fixable. I’m also sending you prayers and hugs and positive thoughts. You love Monkey so much and he loves you. You’ll get through this.

  130. Veronica

    No advice, because I have no ideas. My aspie is little and completely unhelfpul in situations like this.

    If it’s any consolation, from the other side of the world, I am hoping like mad that everything is going to be okay for you guys. In fact, I know it will be okay – it might take time and it might be hard, but it will get there. One step and then another. xxx

  131. Peggy

    My thoughts and prayers are with you Mir. I am sorry you (and Monkey) have so much to deal with.

  132. Brigitte

    It’s time to go wake my daughter, but I have to dry these tears first.

    Sending you strength via the interwebs, and don’t be afraid to lean on others who offer to help, that’s what all these loving and kind relationships are for.

  133. Useyourwordsmom

    I am so sorry. That aching, breaking heartache for one’s child is so deep and real. The inability to take away a child’s pain is just as visceral. And at the same time it is all so hard.I will be thinking about you all today and wishing you the best news…whatever “best” is. Keep breathing.

  134. Sharon

    Sending good thoughts your way.

  135. Jen

    (((Hugs))). As a mother of a special child like yours, I think you’re very very strong. And there must be something in the air–this week has been FULL of “special” events for my 10-year-old as well. Keep breathing. Keep loving. Try to stay strong. You are very lucky in your support system, and your son is SO BLESSED to have you all…

  136. Melanie

    {{{{{{hugs}}}}}} I am right there with you!

  137. Brenda

    That made me cry. ((((HUGS))))

  138. Lisse

    Dear Mir and Monkey – sending much love and high hopes from Massachusetts.

    Hang in there.

  139. Amy

    I have a recurring cyst in my sinus my doctors found it when I was 16 but it had most likely been there for a long time. I had recurring sinus and ear infections for years parts of my sinuses actually calcified due to the near constant irritation and infection. It was hard to be myself when my head was bad . It wasn’t even headaches but my head just felt wrong I didn’t want to eat or sleep and could just never be comfortable and it made me edgy. as a bonus I had really bad post nasal drip so my tummy was upset a lot too. They cyst is not hard to deal with even though it’s kind of gross I’ve learned to not look at what they drain. I’ve rambled but i just wanted to say something in his sinuses can cause issues and can b e fixed.

  140. Tara

    My first time commenting (through tears), though I have been a reader for a long time. I am so sorry and add my prayers to the list. I wish there was more I could do.

  141. djlott

    The best words for me when life got hard is to remember “this too shall pass”. It’s sure not fun while you are in the middle of it, though. Sending good thoughts, prayers and hoping you get some answers.

  142. Rachael

    I really can’t imagine. I wish I had some words of comfort, but for now I hope just saying you’re not alone and people are thinking about you and sending virtual hugs is worth something.

  143. Ingrid

    So sorry you’re going through this. Keeping you all in my thoughts.

  144. Kim

    I’ve been reading your blog for years. My kids are the same ages as yours. I work here: http://www.heartspring.org. Please check us out.

  145. Jill W.

    Oh, Mir. I don’t know what to say except that I am praying for you all.

  146. Liza

    Oh my god. I had no idea there was so much stress and anxiety going on with Monkey. I am so, so sorry.

    You — and especially Monkey — and the rest of your family will be in my prayers. I know that you and he will find your way through this.

  147. Amy Kalkbrenner

    Mir, You know this, but I have to say it – Monkey is NOT his autism. He is what is inside. Sometimes the autism will not let you see the real him. But he will ALWAYS be there. Autism sucks. And it sounds like autism + pre-adolescence are going to be very hard on you all. I am an autism researcher. I wish I could prevent this type of thing happening in your family and in all families. You and your kids are wonderful and your writing is wonderful. Hang in there. I send my love to you from afar.

  148. Stimey

    I know what you mean. Like, at least if were something tangible with a treatment plan, you would do it. I feel that way too. Our circumstances are different, but I think the thing that is so hard with autism is that there is no, “Okay, here is your diagnosis, now here is what you do to make it better,” because if there were, we would all do it, no question. But there isn’t, so we wander around and try things and hope and notice new things and despair and it just keeps going and never stops.

    You will get through this. Monkey will get through this. Your family will get through this. And we (I) are (am) here for you, whatever you need.

  149. Michele

    I’m so sorry. Not in that wimpy I don’t know what to say so I say I’m sorry way. I’m truly sorry. I remember the … helplessness for lack of a better word. The need to normalize life, because there’s a family here, but have to be a mama bear to get answers, and yet function while the enormity just sort of takes over your brain. I’m so sorry.

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