Love gets ready

You may have noticed things are a bit… sparse… around here, lately. Ahem. There’s only so many times and so many ways I can write “My child has LOST HIS FOOL MIND and life is WEARING ME DOWN” before I just back away from the computer and curl up in the corner for a while.

There have been good days and bad days. Rather than building up a thicker skin and greater patience, I find that my ability to deal gracefully with Monkey’s rough periods is eroding. This has been dragging on for months, now, and my reaction when he’s busy morphing into Angry Delusional Hulkboy starts with about a nanosecond of “oh poor baby must be feeling really rotten” and quickly shifts to “FOR THE LOVE OF GOD WILL YOU PLEASE JUST CHILL OUT.” I mean, I would love to tell you that I am a steady pinnacle of love and gentle support, but the reality is that sometimes it feels like a good day if I don’t resort to pelting him with Advil and barking through clenched teeth that no one likes being sick, but not everyone has to be a complete jerk when they are.

It’s wearing on the whole family. That’s the truth of it. Not only is that not terribly entertaining, it’s downright depressing most of the time. So.

But tomorrow he’ll have surgery and that will be a whole ‘nother chapter of awful—thank you for sharing your stories, both good and bad, on the previous post—but one with a finite duration and which will, PLEASE GOD, lead to better times. Greater health. Better sleep. Fewer “I feel yucky” nerve impulses that his brain interprets as “YARG! HULK ANGRY! HULK SMASH! HULK SERIOUSLY PARANOID!”

Of course, knowing how rough the surgical recovery is likely to be, I’m nervous. But I’m trying to focus on the Better that comes after.

Yesterday I plugged an unfamiliar office address into the GPS and took Monkey for a complete auditory workup, per the surgeon’s request. The results were encouraging; although his hearing is now compromised in both ears (“What?”), there’s no damage, so getting his ears drained should fix him right up. Monkey chatted with the tech and made sure to end his time in the soundproof booth by pantomiming being stuck in a box, and he was generally sweet and charming and the staff there was totally taken with him.

I bought him a donut on the way home, which he happily munched for the remainder of the drive. We’d been home for maybe fifteen minutes when he came into my office for the third time in a row, interrupting me on a phone call to announce he was bored, and when I asked him which part of “Find something to do and give me half an hour to work uninterrupted” he didn’t understand, he screamed at me that I’m mean and nasty and I never pay any attention to him and he might as well just go DIE for all I’d care.

And that’s pretty much how it’s been around here for several months.

A few nights ago a bathroom altercation with his sister ended with him screaming and wailing and accusing her of a murder attempt, and while Otto attempted to talk him off the ledge, Chickadee stormed downstairs and collapsed into my lap. “I—” she started.

“I know,” I said, cutting her off. “I know. It’s okay. Just let Otto handle it.”

She rested her head on my shoulder for a minute. “I miss nice Monkey,” she said, finally. “I mean, I know he’s still gonna have Asperger’s after the surgery, but…. He used to just be so sweet. I miss that.”

“Me, too,” I said, trying not to cry. “Just remember how awful he must feel, sweetie, to be so cranky all the time. He’ll be better soon.” I tried to say it like I believed it. I do, mostly. There are just those dark, scared moments when I “What if…?” and I try not to dwell on those.

Yesterday we started planning. I quizzed him what he’d like for dinner tonight, given that it will be his last solid meal for a while. (“Salmon, Mom, OBVIOUSLY, you KNOW that’s my favorite.”) We talked about various beverages and soft foods and I promised to take him shopping today for whatever he thinks looks good.

I cut Monkey’s hair—all the better to keep any potential ear gunk out of his locks, post-surgery, according to him—while he made fish faces and asked me if I was done every ten seconds. Today we run through the final pre-op gauntlet via the ENT’s office and then over at the hospital, and stock up on soft foods and normally verboten beverages and do laundry and get him ready to convalesce and then GET BETTER.

There was a moment, at dinner last night, when we started joking about the incident from the other night when he’d gotten into it with Chickadee, then, um, exaggerated about it to Otto. The rest of us got to giggling about a few of the things Monkey had said, and that was probably a bad idea. Monkey set his jaw and glared at the offender—I honestly cannot even remember who the final straw was, now—and when that didn’t prove enough to evoke an immediate apology, he went on to GROWL his displeasure. That’s a delicate moment, you know, because it means everything is probably about to go sideways and an explosion is imminent, but some reason I ignored all the danger signs and said, “Oh, look, he’s growling. I can do it, too!” And I imitated his stern glare and leaned in to him and said, “ROWR!” It was not a very good growl.

He snarled angrily in response, and we were clearly in the danger zone, but then Chickadee said, “Oh! Okay! We’re all doing it! ME TOO! RAWWWR!” And Monkey was looking VERY ANGRY INDEED and then Otto joined in with the angry glare and the animal noises and the air was thick with tension for a minute until Monkey started to laugh, and there was a small *whoosh* as the three of us collectively exhaled in relief.

I quickly tried to shift the conversation. “Hey, Monkey, what flavors of ice cream should we buy for you tomorrow?”

He thought about it a moment. “Chickie, what kind of ice cream do YOU want?” he asked, ready to let her choose. We were all struck silent by this response.

“Nice Monkey,” as Chickadee put it, is still in there, trying to get out. I’ll keep getting everything ready for tomorrow and then hope that Explosive Hulk Monkey resides in either his tonsils or adenoids or maybe even in the fluid currently trapped in his ears. Our attempts to love him through this feel inept and often inadequate, but under the circumstances, it would appear we’re all doing okay.

Happy Love Thursday, everyone. Sometimes, when love doesn’t feel like enough… the universe hands you a small reminder that really, it kind of is.

76 Responses to “Love gets ready”

  1. 1
    Kelly January 20, 2011 at 8:44 am #

    I will be thinking of y’all – I do think he is in there and this will be a huge help. But did you stock up on more chocolate and wine for you?? (By the way, we made a gluten free flourless chocolate cake last night – http://allrecipes.com/Recipe/Flourless-Chocolate-Cake-II/Detail.aspx – soooo goood. Maybe that will help you through.

    You are strong but remember its okay to ask for help and to lean on friends.

  2. 2
    Rachel January 20, 2011 at 8:46 am #

    Lifting up prayers for you and your sweet family. It’s okay for Monkey to see that you are human, that you can only handle so much. It’s okay, it’s okay, it’s okay. You ARE a GREAT mom, Mir. You may not think you’re perfect, but you are perfect for THEM. You are who knows them best. You are who loves them most.

  3. 3
    Mamadragon January 20, 2011 at 8:50 am #

    ((hugs)) I hope the surgery fixes your poor broken Monkey. I hope he has an easy recovery. I hope for better days for all of you. ((hugs))

  4. 4
    Momsy January 20, 2011 at 8:53 am #

    Sometimes I swear I can just feel my heart breaking for you all. Thinking of you and praying for the best outcome.

  5. 5
    Isabel January 20, 2011 at 8:57 am #

    I will keep ALL of you in my prayers. What will be, will be!

    XOXOX

  6. 6
    liz January 20, 2011 at 8:58 am #

    Thinking of you all.

  7. 7
    Gwen January 20, 2011 at 8:59 am #

    Good luck! All of you deserve for things to get better. I really, really believe that “Nice Monkey” will turn up shortly.

  8. 8
    J from Ireland January 20, 2011 at 9:01 am #

    “chickie, what kind would you like?” has me crying. So sweet.

  9. 9
    Clarity January 20, 2011 at 9:03 am #

    >>>>>>>>>>Our attempts to love him through this feel inept and often inadequate, but under the circumstances, it would appear we’re all doing okay.

    Truer words have never been spoken, and that’s exactly what it’s all about.

  10. 10
    navhelowife January 20, 2011 at 9:10 am #

    Sending love, and prayers, and plenty of pain meds.
    Virtually here for you should you need a venting place. Or some fun internet links he might enjoy while recovering!

  11. 11
    JennyM January 20, 2011 at 9:19 am #

    I’ll be thinking of you all…..

  12. 12
    KirstyB January 20, 2011 at 9:22 am #

    Good luck with surgery tomorrow!! Thinking of you all and hoping for an easy recovery!!

  13. 13
    Julie January 20, 2011 at 9:25 am #

    Will be thinking of you all day tomorrow, sending every good wish for an easy recovery and happiness ahead.

  14. 14
    elz January 20, 2011 at 9:32 am #

    Thinking great thoughts for tomorrow. It will be better. It has to be. Hugs to all.

  15. 15
    Kady January 20, 2011 at 9:32 am #

    You are all in my thoughts these days, and I’ll be sending extra good wishes your way through the surgery and recovery. Hang in there.

  16. 16
    amy January 20, 2011 at 9:32 am #

    Oh wow, the tears are in my eyes. Poor Monkey. Give that sweet boy a hug from us, and things WILL get better, and he will feel SO much better once the healing is over. Prepare for a lot of irritation with the throat, I remember that being the most annoying aspect when I got my tonsils out at 7yrs old, the itchy throat. Argh. I was eating toast within a week, though.

  17. 17
    Jamie January 20, 2011 at 9:44 am #

    Happy, healing, healthy thoughts for you all tomorrow and beyond!

  18. 18
    Varda (SquashedMom) January 20, 2011 at 9:47 am #

    Wow, this is tough stuff. I hope Monkey gets through it all quickly and with as much grace as he can muster. The next two weeks are likely to be uber-rough, but hopefully after that you can get “Nice Monkey” back, at least most of the time.

    I am terrified of what is going to happen when my son Jacob transitions through adolescence and boy hormones flood his system. Because as it now stands, growling is already one of his favorite forms of communication, and I have been warned that even the sweetest of autistic kids (among which he can currently be counted) can undergo really scary transformations at that time. But for now I’m just going to stick my fingers back in my ears and “la, la, la”, pretending he’s never going to grow up…. at least for a little while longer.

    Sending well wishes for an easy surgery, a smooth & rapid recovery, and restored equilibrium to your household.

  19. 19
    Barbara January 20, 2011 at 9:49 am #

    Thinking of you all and hoping the recovery is 100 times easier than you expect!

  20. 20
    Brigid January 20, 2011 at 9:56 am #

    Your writing is such a gift. Thank you for sharing the good and the not-so-good. Hoping the not-so-good takes a trip to Outer Mongolia. (Nothing against Outer Mongolia.)

  21. 21
    Kristi January 20, 2011 at 10:11 am #

    Thinking of you and Monkey, and Otto and Chickie today.

  22. 22
    Lynne January 20, 2011 at 10:11 am #

    Hoping and praying that tomorrow goes very smoothly for you and Monkey. May he feel better soon.

  23. 23
    Zilla January 20, 2011 at 10:18 am #

    Best to you and your family tomorrow, and always.

  24. 24
    Carolyn January 20, 2011 at 10:19 am #

    Good luck tomorrow. I hope that the “monsters” are all extricated, and Monkey will finally feel some relief. I can’t imagine feeling like that day in and day out – I would be a %^&$! Nice Monkey is there, he will come back.

    As for the growling – oh, we have that here as well – I am definitely going to round up a chorus of growls the next time it happens. Hopefully, my aspie will laugh along like yours. :-)

    Good luck. I’ll be thinking of you all tomorrow and in the days of recovery.

  25. 25
    Melissa January 20, 2011 at 10:24 am #

    Good luck to all of you!

  26. 26
    Sheila January 20, 2011 at 10:27 am #

    I heart Love Thursdays, and this one in particular. You never fail to remind me to be grateful for what I’ve got, and that love really is enough.

    I’ll be lifting up you and Monkey tomorrow, and in the days to come.

    Oh, and P.S. If at any time in the next few days you need a laugh, perhaps this will do: I misread the ad caption at the bottom of your post as “…and I’m a Moron.” Whoops. Sorry ’bout that, Rochelle Tallmadge.

  27. 27
    MomCat January 20, 2011 at 10:31 am #

    Sending your way, prayers and good wishes and patience and, most of all, hope.

  28. 28
    Caty January 20, 2011 at 10:32 am #

    I hopehopehopehope the recovery goes smoothly. Good luck to Monkey and everyone else tomorrow.

  29. 29
    Aimee January 20, 2011 at 10:51 am #

    Sending lots of positive thoughts and prayers your way, for successful surgery and speedy recovery and a vast improvement in how Monkey (and the rest of you) feel. {hugs}

  30. 30
    Tenessa January 20, 2011 at 10:52 am #

    I have a Monkey of my own and I can see my struggles reflected here as if in the not quite true reflection of rippling water. I know that there can never be anyone with exactly my child or exactly my experiences with his quirks, but I can say this with certainty: Life with Asperger’s is a series of steps. A lot of times those are two steps back with only one step forward. It can seem that no matter what you do, these setbacks or digressions are permanent or unfixable. That your child is beyond reach. Never despair! There is always a way forward and you are the perfect mother for your Monkey.

    Thank you so much for sharing. Knowing that someone else is loving their Monkey as best they can is fortifying and I felt that maybe you, too, could use some fortification. So, here I am holding your family up in prayer that maybe this will be the answer you seek to put Nice Monkey back in control.

  31. 31
    Kate M January 20, 2011 at 10:52 am #

    Good luck tomorrow. I hope you’ll get your boy back soon!

  32. 32
    el-e-e January 20, 2011 at 10:55 am #

    Ice cream. Focus on the ice cream. :) All will be well.

  33. 33
    RuthWells January 20, 2011 at 11:04 am #

    Granted I’m an easy mark these days, but Chickie got me with “I miss Nice Monkey.”

    Hugs.

  34. 34
    JC January 20, 2011 at 11:09 am #

    Best of luck to ALL of you!!

  35. 35
    Heather C. January 20, 2011 at 11:09 am #

    I am about six months behind you on your “adventure” to finding Nice Monkey….I too want my Nice Monkey back. And though I am sure it would help, I WILL NOT be eating GS Cookies which are stacked high in my living room! Been on the phone most of the morning trying to find a psychiatrist not a program that will help us in our journey….one day when they (our children) are all grown up, I hope to look back at this like I recall labor as just another stepping stone and think, “its wasn’t so bad”.
    I am praying for all of you!!

  36. 36
    Jen January 20, 2011 at 11:17 am #

    Oh hon. Good luck with the surgery. My oldest had the Blue Plate Special surgery a few years ago and it helped him. He needed it for sleep apnea and while it didn’t solve every problem he has, it made several of them easier.
    And I saw someone here recommended stocking up on wine and chocolate for yourself. I have to agree, but you might also want to get a couple bottles of something a little stronger, just in case. ;)
    Hugs to you and Monkey!

  37. 37
    Katie in CA January 20, 2011 at 11:32 am #

    My son had tonsils and adenoids out in June, due to sleep apnea. It made everything much much better. Praying for you all.

  38. 38
    Mary January 20, 2011 at 11:32 am #

    Best of luck tomorrow. And asking what flavor his sister wants??? Definitely shows that Nice Monkey is in there just hankering to get out!

  39. 39
    Pamela January 20, 2011 at 11:33 am #

    I’ll be thinking good thoughts at you tomorrow, and over the next couple of weeks.

  40. 40
    laura January 20, 2011 at 11:41 am #

    I think everything has been said that needs said, I’ll just stack my thoughts and prayers on top.

  41. 41
    Brenda January 20, 2011 at 11:51 am #

    You made me cry again. You have a knack for that, lol. Hoping he recovers easily from the surgery and he gets back to his normal self quickly!! (((HUGS))) to you!!

  42. 42
    Heidi January 20, 2011 at 12:03 pm #

    Happy Love Thursday, most of all to Monkey. (WHAAAT?)

  43. 43
    Sara Padrusch January 20, 2011 at 12:09 pm #

    Ice cream, popsicles, soft mac and cheese, soft pancakes, jello, pudding. You might be surprised by the recovery. My kids had their tonsils out at 7 and 8 and the recovery was really pretty easy. I had mine out an adult and it was sheer hell, so I was surprised by how different it is for kids. Just make sure he takes his tylenol with codeine (even though it is yucky) to stay ahead of the pain. You guys are going to be fine.

    Sending lots of warm thoughts your way!

    Sara

  44. 44
    Ani January 20, 2011 at 12:11 pm #

    Hi, Son#1 had tonsils/adenoids out in kindergarten. First couple of days were rough but then he healed up a heck of a lot faster than his dad…who had the same thing done at 32. Give the pain meds, even when they say they don’t want them. They WILL want them later and by then their mood will be decidedly worse. :-)

    FWIW my kid liked room-temp soft food better than cold.

    The internets are praying with and for you, that the surgery is successful, that it drains out all the gunk, and that Nice Monkey comes back to stay.

  45. 45
    BethRD January 20, 2011 at 12:16 pm #

    I will be keeping you all in my thoughts, Monkey most of all. Good luck and may it go really really well!

  46. 46
    Karen R. January 20, 2011 at 12:36 pm #

    Prayers for the best of all possible outcomes on the way.

  47. 47
    Megan January 20, 2011 at 12:43 pm #

    I’m betting Explosive Hulk Monkey lives in ear gunk. It just sounds right. Hoping HARD that all goes well tomorrow and the next few days – for all of you!

  48. 48
    Fabs January 20, 2011 at 12:52 pm #

    We are all rooting for you and your family! Things will be better!!!

  49. 49
    parodie January 20, 2011 at 1:11 pm #

    Hoping and praying for you, for Monkey, and for the whole family. Definitely cheering you on!

  50. 50
    Katie in MA January 20, 2011 at 1:24 pm #

    Is it just me, or does it seem like Monkey is doing all he possibly can to make this the turning point? I mean, NiceMonkey is practically jumping up out of the goo, laughing at the growls and offering Chickie ice cream choices, ready for the very pretty surgeons to set him free. I didn’t think anyone could want this to go right more than you – but I think Monkey just might have you beat. It’s going to be a long recovery, but I absolutely positively know this will make things better. Pinky promise.

    I’ll be thinking about all of you all day tomorrow – good luck!!!!!! And Happy Love Thursday. :)

  51. 51
    Debbi January 20, 2011 at 1:42 pm #

    Happy Love Thursday to you too!! Happy Monkey is in there, he just needs to feel better, I promise. I will keep all of you in my thoughts tomorrow.

  52. 52
    Rebecca January 20, 2011 at 1:47 pm #

    Hang in there, mama. It’s gonna get better REAL soon. You’re all in my prayers.

  53. 53
    Heather January 20, 2011 at 1:48 pm #

    I love your dinner table stories. May I come to dinner? ;)

    My thoughts and prayers are with all of you. I really hope this helps significantly!

  54. 54
    Em January 20, 2011 at 1:53 pm #

    I am hoping that the roar of positive thoughts coming from all of your friends inside the computer get the Big Guy’s attention and that everything runs smoothly tomorrow and ever after. I think the one and only thing you are doing wrong in this whole situation (don’t you love sentences from strangers that start that way?) is thinking anyone in the world expects you to be at your best 100% of the time all the while being worn down by stress. You’re there. You love him when he is less than lovable. That is 100%. Stop being such an overachiever. Geesh!

  55. 55
    Angela January 20, 2011 at 2:19 pm #

    Keeping my fingers crossed for a smooth day tomorrow. For what it’s worth, my mom says I was a different person after my tonsils/adenoids/excessive ear fluid were removed after they discover I was nearly deaf and nursing a constant infection at 18 months. I’m sure Monkey is going to feel so much better. You’re amazing, Mir. Hang in there!

  56. 56
    Karen P January 20, 2011 at 2:21 pm #

    I was 10 years old when I got my first pair of glasses. (The day Kennedy was assassinated…just shows my age. ) I was more upset about the glasses than Kennedy. But I do remember how wonderful it was on the ride home that now everything was so clear. I got used to the way I had been seeing everything and it was a wonder how everything changed when I could really see. Long story short, Monkey should be amazed at how much better he will feel and how much better he can hear. Best wishes for all of you.

  57. 57
    Jessica January 20, 2011 at 2:53 pm #

    I’ll be praying for a happy, healthy, non-growly recovery and the return of “nice Monkey.” (I know I’ve said it before, but sometimes all the helpless can do is pray and pray and pray some more. I think, lately, my life is a lot of prayer coupled with a lot of waiting.)

  58. 58
    Crisanne January 20, 2011 at 3:01 pm #

    Much love and prayers to you all, Mir. May you be blessed with abundant patience and understanding for Monkey over the next few days and may he be blessed with the return of happy-go-lucky Monkey.

  59. 59
    ashley January 20, 2011 at 4:38 pm #

    Hi Mir! I am a total lurker cause obviously I read all the time and never comment. But I feel like I just finally had to ask if anyone had ever mentioned the Feingold diet for Monkey. I’m sure you might have already heard of it but I thought I would put it out there just in case. Hope it helps and his surgery goes well!

    Hugs and prayers!

  60. 60
    Kristen January 20, 2011 at 7:08 pm #

    Good luck tomorrow! When I had my adenoids out at the age of 11, I woke up post-op and was shocked at how LOUD everyone was. Evidently, the fluid had caused me to lose nearly 50% of my hearing. Who knew? Really, it seemed like everyone was yelling at me for that entire first week post-surgery! I kept telling them they didn’t need to be so loud about everything.

    I also remember being very angry when my throat hurt too much to eat ice cream for the first 2 days, too. Everyone had promised ice cream! But I couldn’t eat it for a few days.

    But overall, the surgery made a huge difference in my health for me. I hope you have the same type of results. (and don’t be surprised if you are accused of yelling….really, you have no idea how loud everything sounds when you’ve been living in muffled sound for a long time!)

  61. 61
    Ingrid January 20, 2011 at 7:17 pm #

    Thinking of you guys and hoping for smooth sailing tomorrow and a quick recovery to follow!

  62. 62
    addy January 20, 2011 at 7:28 pm #

    Love and Luck to Monkey for his surgery and his healing. Love to you and the rest of the Mir-clan through this journey. It will be a good one.

  63. 63
    Chris M. January 20, 2011 at 7:41 pm #

    Best of luck with the surgery and recovery!

    And perhaps you have found a great strategy to avoid “melt downs” in the future — having the whole family repeat what Monkey is doing when he starts to get angry, until he finally realizes that it *is* funny, relaxes, and starts to laugh?

  64. 64
    Karen January 20, 2011 at 7:45 pm #

    Best of luck tomorrow! My niece had the surgery,she is eight, and she had no complications and only minor irritation afterwards… they said “Jeez, this really wasn’t a big deal” afterwards… hoping that’s exactly how you and monkey feel.

  65. 65
    Martha January 20, 2011 at 8:18 pm #

    Huge hugs to all of you and lots of prayers for you, Monkey and the doctors! I will be thinking about you all day! Prayers that all the awful gunk is cleared out and recovery is smooth.

  66. 66
    Katherine January 20, 2011 at 8:41 pm #

    I hope everything goes smoothly tomorrow and in the recovery. (and that you have wi-fi in the waiting room to distract you).

  67. 67
    Deb January 20, 2011 at 8:55 pm #

    Do you have any idea how bad I just want to scoop you all up and make it better?

    I so wish I could.

  68. 68
    shadymama January 20, 2011 at 9:03 pm #

    i will send you fierce vibes tomorrow morning. you, and monkey. and chickadee. and otto.
    and, that love, mir? – it is more than enough.
    .more.than.enough.

  69. 69
    Christine January 20, 2011 at 10:02 pm #

    I echo shadymama:

    Your love is more than enough

    you are enough
    you are just exactly what Monkey and Chickadee need

    The ‘hulk’ is the fluid in his ears and will be gone this time tomorrow

  70. 70
    Headless Mom January 21, 2011 at 12:41 am #

    Love you all. Will be watching for updates if you send them out. Prayers, too!

  71. 71
    Brigitte January 21, 2011 at 6:39 am #

    Good luck getting Monkey into and through the surgery.

    LOTS of good luck through the recovery period, for everyone.

    And prayers that the surgery is removing The Hulk.

  72. 72
    Jean January 21, 2011 at 6:39 am #

    Sending my thoughts and prayers today, hope all goes well with the surgery, Mir.

  73. 73
    Leftofordinary January 21, 2011 at 7:33 am #

    I’m thinking of you today and hope all goes well for Monkey.

  74. 74
    Julie January 21, 2011 at 7:38 am #

    Praying for you!!!

  75. 75
    Melanie January 21, 2011 at 8:24 am #

    Thank you. I needed to hear this today. I have a hurting husband and it is getting harder and harder to remember the ‘nice husband’ that I know is in there.

  76. 76
    Holly at Tropic of Mom January 23, 2011 at 11:28 pm #

    “There’s only so many times and so many ways I can write “My child has LOST HIS FOOL MIND and life is WEARING ME DOWN” before I just back away from the computer and curl up in the corner for a while.” I definitely relate.

    Hope Monkey is doing better now, post – op.

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