And it goes on and on and on

While we were camping and tormenting small dogs with boogie boards, Chickadee was spending a week with her dad. One of the things I shouldn’t say out loud—but will, because I’ve learned by now that everyone in a similar situation feels it, and guilt about it is just stupid—is that it was a relief to be apart for a few days. Not because we don’t love her (we do), not because we weren’t worried about her (we were), but because she is, at this point, due to many factors out of her control, completely and totally exhausting.

A child with a chronic illness is a challenge to a parent’s patience and endurance, under the best of circumstances. A teenager with a chronic illness is a vicious beast determined to make The Unpleasantness a family affair. A newly-diagnosed Aspie who also happens to be a teenager with a chronic illness is a special circle of hell reserved for those of us who once, foolishly, prayed for patience.

I know I’m supposed to say that I will do whatever she needs because she is my child and I love her, and that’s 100% true. But that doesn’t mean I like it.

I want to be one of those moms who smiles and strokes her forehead and tells her everything is going to be okay and shhhh, baby, just rest. I want to be the kind of mom who makes it all better.

Maybe I would be that kind of mom, for a different kind of kid? I don’t really know, because I don’t have a different kind of kid. I have a kid who makes her own rules; I have a kid who is so desperately angry about being sick that she does Very Stupid Things and then doesn’t understand why it makes her worse. It turns out that if you don’t report major pain because you’re afraid of going back to the hospital, or if you exaggerate about minor pain to get out of doing chores, or if you lie about taking your medication, those things can be A Problem. I mean, WHO KNEW? And also when you get caught, shrieking I HATE YOU SO MUCH I WOULD RATHER DIE THAN LIVE HERE doesn’t actually help. Nor is it conducive to Lifetime Movie-esque forehead stroking and maternal calm.

I don’t want to say that I have no idea how to do this, that over the last six months I have come to a place where I don’t know my own child. I have resisted detailing the ways in which she either clings to me—unwilling to let me out of her sight or even her grip—and then turns on a dime and demands to go live with her father because life here is so unbearable.

I have tried not to complain about the strain it has put on our household, my marriage, her brother’s well-being; and the fear that has taken up residence in my chest is always there, because it has become more and more clear that she is willing to fight ME, but not the illness. And I can’t tell her that if she’s not willing to fight it, it will win. She knows, anyway. She’s too angry to admit she’s giving in, and too scared to commit to defeating it. It’s easier to defeat me. It’s easier to defeat herself.

I have tried not to complain about the career I love, laying in tattered bits in her wake. Tried not to complain about the financial strain. Tried not to complain about my new full-time job of doctors’ appointments and medications and trying to comfort a child who meets every kindness with venom, because if she pushes everyone away there will be no one left to tell her to stop giving in.

She was back yesterday after lunch, and refusing to speak to me only 15 minutes later. She walked away from me at the grocery store and disappeared. I finished my shopping and took the bags out to the car and wondered what I would do if she didn’t appear, but thankfully when I returned the cart she materialized by the car, plunked herself in the back seat to demonstrate her disdain for me, and I didn’t have to complete that thought.

Two hours later she was apologetic and clingy. A few more hours after that, we were on our way to the Emergency Room.

It was a long night but a relatively easy one, given all the rest—a quick diagnosis of “atypical migraine” and we were eventually sent home with a referral to Yet Another Doctor, and she curled up in the car next to me and whispered apologies, cried about how I do so much for her and she’s so mean and plus she never gets better, and my heart broke all over again. My baby, my beautiful baby, needing her mama to know what to do. And her mama is such an idiot.

Last night I smoothed back her hair and whispered that it would be okay, and she let me, and for a few minutes, it almost was.

It’s all the other minutes that are killing us both.

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96 Responses to “And it goes on and on and on”

  1. 1
    Jennifer June 4, 2012 at 10:22 am #

    She fights you because she knows you can take it. But then you probably already knew that.

  2. 2
    Neil June 4, 2012 at 10:24 am #

    So much to deal with! I feel for you. Make sure you take some moments for yourself. You should be proud of yourself for being the best mother and person you can be.

  3. 3
    teachergirl June 4, 2012 at 10:24 am #

    Before I say this, I want to say that I am not an idiot and know that it comes not even close to the kind of pain you are feeling. But I’m a new mama, and I have a 14 month old who is dealing with molars. And I can only imagine that pain that she’s going through, and in those moments when she stops climbing and pushing boundaries and trying to touch/throw/experience everything and just cries because she can’t figure out why it hurts and she just can’t distract herself from it anymore, my heart breaks.

    It’s like I feel it fracture a little bit, and I want to do anything that I can. Last night in the car, when she woke up and just cried her sad, scared, pain cry, all I could do for the last few miles was stroke her hair and tell her that Mama was there.

    Sometimes, that’s all you can do. I know I don’t know much about mamahood, but that much I have learned. Sometimes, that’s all you can do.

    My heart breaks a bit to read this, and I send my healing thoughts to your mamaheart. You are stronger and braver and wiser and better than you think you are, every day.

  4. 4
    Mary K. in Rockport June 4, 2012 at 10:30 am #

    Maybe my suggestions are way too obvious and you’ve tried them already. 1) Have you checked out a diagnosis of teen depression for Chickadee? (Read Gary Nelson’s book – you can find it on google.) and 2) If you get psychotherapy for YOU, it can turn out to be very supportive. But I know, I know -it can be “one more thing you have to do.”

  5. 5
    Meri June 4, 2012 at 10:32 am #

    I don’t know what to say, but you are in my thoughts. Wish I could give you a huge hug and make it all better, too.

  6. 6
    Stimey June 4, 2012 at 10:32 am #

    Trying to love and comfort and help someone who is pushing you away is heartbreaking. On a much different scale, my Sam is like that (but his trials are less…huge) and there is nothing harder than wanting to hug him and sit on his bed with him and talk it out only to have him scream at me and make me leave.

    You are such a good mom and admitting that you’re struggling doesn’t make you less so. You are working with the tools and people you have and that makes you realistic. Also, you will learn.Think how you felt when you first started dealing with Asperger’s. Think of how far you’ve come. You learn as you go.

    Hang in there. Love you.

  7. 7
    Grace June 4, 2012 at 10:35 am #

    I’m so sorry for how hard this is for your family, Mir. I can’t even imagine. But Chickie is lucky to have you.

  8. 8
    jodifur June 4, 2012 at 10:36 am #

    Oh Mir….I said all I have in emails and twitter DMs last night and this morning. Sometimes there is nothing else to say other than this sucks. And it does. This sucks so, so much. For you, and for her. So loves you. She does. Teenage girls are HORRIBLE to their mothers. I was. I think my mother threw a parade when I left for college. And given everything else it is that much worse.

    I would say hang in there, but you are. I’d say drink wine and eat chocolate but you are probably doing that too.

  9. 9
    The Other Laura June 4, 2012 at 10:43 am #

    This is so hard and my heart goes out to all of you. I am sending good thoughts and light and a handful of prayers.

  10. 10
    Chuck June 4, 2012 at 10:45 am #

    I guess the old “Hang in there line” probably sounds trite and cliched, but I don’t know what else to say. Well, that and the fact that you really are doing an awesome job of handling this, I think. I hope things get better for Chickie soon.

  11. 11
    Chris June 4, 2012 at 10:45 am #

    Oh I get it. All of it. Some days I am amazed at my patience. Other days I snap at things which are completely ridiculous. And just when things seem to be going well and I begin to exhale, there is another set back.

    Big hugs to all of you.

  12. 12
    amy June 4, 2012 at 10:47 am #

    I was fine until the end and now I don’t know how I’m typing through the tears. I think I’ve even said this before, but sometimes it helps me to say it again (while I’m hoping I can help you even just the teeniest tinsiest bit).

    You are an Awesome Mother. And as much as she is trying so hard to push you away, the fact that you are there for her and won’t give up and continue to Love her So MUCH, will be what she remembers and treasures the most when she looks back. As a daughter of a mother who turned out not to give a sh*t about me, mourning the mother I deserved is harder and more painful that mourning the mother that died.

  13. 13
    bj June 4, 2012 at 10:53 am #

    I have a chicakdee of my own, minus the chronic illness, a non-custodial parent, aspie, but with the tweendom, and I truly sympathize. I would imagine all the other things significantly amplify the push pull of teenage girls and their mothers. I’m glad you’re willing to say it out loud and I think part of what I want to teach my daughter is that we love them fiercely, but that doesn’t mean that we are neutral creatures without thoughts and emotions of our own, that their words can hurt us (though it won’t change the love).

  14. 14
    hollygee June 4, 2012 at 10:55 am #

    “It’s easier to defeat me. It’s easier to defeat herself.”
    Those are conditions she can control. Who doesn’t want to feel one has control in the rest of chaos?

  15. 15
    Stacy June 4, 2012 at 10:56 am #

    I’m so sorry. I can’t imagine. Have you considered telling her she could live with her dad? I mean, if she thought that was actually an option, chances are she would decide she wouldn’t want to do that. What teenage girl wants to have to ask her dad to buy pads/tampons for her? Much less all the other stuff that goes with being a teenager. Obviously, you would have to talk to her dad about it first–you wouldn’t want it to backfire on you. But, if she thought she did have choices, maybe she would feel more in control, even if it doesn’t actually change anything. Just trying to think of anything that might help.

  16. 16
    Lucinda June 4, 2012 at 10:59 am #

    I have several thoughts so please bear with me.

    You need support. If you aren’t already going to counseling, it would be a good idea. Otto too. If he’s willing. Being a caregiver to someone with chronic illness is exhausting and you have your own process of mourning to go through.

    Chickadee is handling her illness in a pretty normal way I would say. It’s amplified by the fact that she is a teen but still, I have done all those things. You vacillate between anger, fear, sadness, despair, hope, etc. You lash out at those who love you because they don’t get it or so you think. Then you feel terrible because you have hurt them. You want to understand that your illness is hard on them too but it’s hard. You get angry at the illness and try to do things like you want to be able to do rather than how you are actually able and make yourself sicker in the process. Then anger, guilt, and frustration follow all over again. There is fear of what you have lost and what you will continue to lose.

    I was just telling my dad this morning that it’s a constant process of acceptance which is so hard at 40 and I’ve been doing this for 16 years now. At 15 it would be impossible. Throw in Asperger’s and I can’t even imagine. Seriously. Hugs to you and your family. I’m glad you can write about it and I hope it helps. I hope your family can find some semblance of balance.

  17. 17
    Michelle June 4, 2012 at 10:59 am #

    As a mom of a 13 year old (albeit a boy, but still pretty rough) and who was once that 13 year old girl who had a mom and dad in 2 households to play against eachother, I feel for you. It is the easest thing to do to strike out against the ones she knows won’t abandon her for any reason with the most hurtful thing she can think of, I hate you and want to live with him. I did it to my mom. I regret it now but that is after 30 years of hindsight.

    If my son had that to throw at me, I don’t doubt for a moment he would.
    Keep on keeping on. It will get better. It just might take 30 years and her t have a teenager of her own.

  18. 18
    Aimee June 4, 2012 at 11:08 am #

    I’m so sorry that things are so difficult. I don’t really have any words of wisdom, except to second what Lucinda said above. It might be worth looking into a support group for compassion fatigue. My husband’s mom is ill and because we live thousands of miles away, the bulk of the care is falling to my sister-in-law. We finally talked her into going to a support group, and it helped a lot. Also, my boss’s wife is chronically ill and he goes to a compassion fatigue support group that he says has really helped him.

  19. 19
    Barbara June 4, 2012 at 11:17 am #

    You know, I think the fourth synonym in the thesuarus for “mama” is “idiot.” At least it sure feels like that a lot of the time, even under the best of circumstances. Where is it written that we automatically have all the answers?

    I was shocked when a magic “Mothering Manual” didn’t appear in my mailbox upon the birth of my first child. I mean, come on, was my mom the only one who referred to such a book every time she had to tell me something I didn’t want to hear?? “No, dear, I can’t let you stay out that late. It says so in the Mothering Manual.” “Sorry, love, you have to clean your room. Not my fault – it says I have to ask that of you in the Mothering Manual.”

    Wishing you good luck, good humor, and good cocktails …

  20. 20
    Mama Bear June 4, 2012 at 11:19 am #

    You know already, but may have forgotten, that she lashes out at you because she knows in her heart that you will love her even when she’s being mean. She knows that your love is unconditional and she can show how angry, sad and frustrated she is to you, and you will still love her. Being civil to the rest of the world is a full time job; unfortunately you take the brunt of the anger she holds in the rest of the time. May you all be blessed.

  21. 21
    Jen H. June 4, 2012 at 11:22 am #

    Many people have wise words. I just have a (((Hug))).

  22. 22
    Asha June 4, 2012 at 11:24 am #

    You write so beautifully, Mir. I’m with you in spirit, because you know I get it. Sending love to you and our family, and hopes that there are calmer times ahead.

  23. 23
    Angie McCullagh June 4, 2012 at 11:31 am #

    Oh, Mir. I have nothing wise or wonderful to add to what everyone has already said. And being the smart, intuitive lady you are, I’m sure you’re doing your best to juggle everything and take care of yourself as much as you can in the process. I just want to offer my support. Things sound really, really tough right now.

  24. 24
    Jamie June 4, 2012 at 11:34 am #

    No advice, just hugs to you! This parenting stuff really sucks sometimes! I’m having issues with my oldest, not medical, but personality, “why did you have me, you never believe me, I hate my life” coupled with thieving crap that I am so tired of. For a kid who has virtually everything, which I suspect is much of the problem, he’s really making me question why I got into this parenting gig in the first place. I think we can all use a hug.

  25. 25
    Jill W. June 4, 2012 at 11:51 am #

    I have no words of wisdom but wanted to say that I hate that your family is going through this. You are always in my prayers, and ,of course, we are all here to listen whenever you need to talk.

  26. 26
    Petunia June 4, 2012 at 11:54 am #

    I’m so sorry. You all are in my prayers.

  27. 27
    dad June 4, 2012 at 12:04 pm #

    I’d like to offer a hug to you, to Otto, and to all your readers/commenters that are dealing with the same or similar problem. It’s hard. Really hard, and there is no magic pill to resolve it.
    Been there. Done that.

    Keep up the good work.
    Stay the course.
    It’s worth it.
    You might even end up with exraordinary progeny who are contributing members of society and make you proud.

    I did.

  28. 28
    RuthWells June 4, 2012 at 12:04 pm #

    Oh, Mir. I wish I had wisdom, or experience, or magic fairy dust that would make it all better. I have faith that you will find a way, if that is of any consolation.

  29. 29
    RuthWells June 4, 2012 at 12:05 pm #

    PS — I love your dad.

  30. 30
    Scottsdale Girl June 4, 2012 at 12:06 pm #

    I opted out of parenthood so I have no advice for you but since I was once a teenager of the female persuasion i have empathy for you!

    When I was 16 I told my mom she was a bitch and I wanted to live with my dad. She dragged my butt to the car and drove me straight to his house where as a surprise to exactly NO ONE BUT ME he refused to let me live with him. He had a new wife and step kids and there was no room for me there.

    That was a tearful ride home but I did learn something from it (first thing being NEVER EVER call your mama a bitch!) I learned that my mom was doing a great job at being a mom and I learned to be more grateful for it. Took me a few more years to truly appreciate her but you get my point.

    HUGS TO YOU ALL!

  31. 31
    Heather June 4, 2012 at 12:13 pm #

    Sending so much love and hugs and many prayers your way. I wish I had a magic wand for you, sweetie – Lord knows you have had more than your fair share of struggles. You guys will get through this, and even amidst all the hard things, I know you continue to let your children know how much you love them, and they will ALWAYS remember that.

  32. 32
    Katie K. June 4, 2012 at 12:18 pm #

    My heart breaks for you both.
    I so hope that she gets better soon.

    Could any of the meds she is on for her illness be causing/exacerbating anxiety or depression? My daugher has pretty bad allergies, although nothing like what you have dealt with, as well as anxiety. We have found that some allergy meds make her, for lack of a better term, nuts. She gets mean and even violent. She has nightmares and makes suicidal-like statements similar to Chicakdee’s “I would rather die…” proclamation. Even the generic version and the extended release versions of the med that is normally not a problem cause her anxiety to skyrocket. Before I figured out the allergy med-behavior connection, I was as terrified as you sound.

    The day I figured it out, we were at an event at school when she had a meltdown. I took her to the car and listened to her tell me that she hated me and many other things that thankfully, I have blocked from my memory while I physically restrained her to keep her from hurting me or herself for about 45 minutes while the rest of the family finished up at school. I was crying and praying the whole time, terrified that we would need to hospitalize her for her own safety at some point soon. I prayed harder than I have ever prayed in my life. She wore out, I took her home and put her to bed. I looked at her, sleeping and thought, “Sh#$! I forgot to give her her allergy meds!” and it was like a siren went of in my head. The meds! They are causing this! I never gave them to her again and while she still has her difficult moments, especially as she is not a hormonal 13 year old, it has never been that bad again.

    I will keep you in my prayers.

  33. 33
    el-e-e June 4, 2012 at 12:27 pm #

    Just adding my prayers. Really, I want you to know that there are so many praying for you guys. I doubt it feels like it, but you are being held close.

  34. 34
    liz June 4, 2012 at 12:27 pm #

    Sending love and hugs and umpteenthing what everyone else said about her taking it all out on you because she knows you’ll never leave her, that you will always love her.

    I am so impressed by your parenting through this. The proof that you’re doing it right? Is this,

    she curled up in the car next to me and whispered apologies, cried about how I do so much for her and she’s so mean and plus she never gets better, and my heart broke all over again

    She knows you aren’t the source of her anger, but she needs to express her anger to someone because the universe at large is too amorphous to direct her anger at. She is aware of the fact that her anger at you is unfair, and she is angry because life isn’t fair. So she’s now angry at herself, too, for being unfairly angry at you.

    Round and round and round it goes.

  35. 35
    Mary Fran June 4, 2012 at 12:29 pm #

    No extra words of wisdom here. But you are much stronger and patient than you give yourself credit for. And, wow, you can tell I’m an engineer with that grammatically poor sentence. I hope you see the light at the end of the tunnel soon. When does she leave for college?

  36. 36
    Kathy June 4, 2012 at 12:37 pm #

    just keep swimming … just keep swimming!

    Sending all the happy thoughts I can to you all the time!

    xoxo,
    k

  37. 37
    Linda Sherwood June 4, 2012 at 12:39 pm #

    Big virtual hugs. Parenting is hard, but it makes it easier to know it isn’t just hard for me. Thank you for what you are willing to share of your life with the rest of us to let us know we aren’t alone. We all need to know that.

  38. 38
    bryan June 4, 2012 at 12:54 pm #

    There have been several times on my parenting journey when I have wanted to trade in the minivan for a VW bug and drive away to New Mexico, where I would make jewelry and sell it in some small town. Sort of like The Bean Trees, except instead of finding a child on the way there, I’d leave 2 special needs ones behind. I feel you. And then the well meaning friends who say “you do such a great job, I could never do what you do” make me want to scream through tears I DON’T WANT TO BE ANYONE’S HERO!!! I want a kid who can spend the night out at a friends house, who gets invited to birthday parties, who can go to a YMCA summer camp without being expelled, who doesn’t have to take 16 medications, who doesn’t need a psychology grad student as a nanny.

    I think–I have to think, absolutely HAVE to, because otherwise madness lurks–that just as Asperger’s kids have really exceptional abilities and really exceptional disabilities (we’re either in the 90%ile or the 10th, we don’t have any middle ground in my house), the trials of parenting are really F***ing hard, but the payoffs are really F***ing awesome. I believe the Parenting Gods are fair that way. Maybe I’m kidding myself, but it’s a delusion that lets me find a happy place.

    A year or so ago when I told Dar Williams that she saved my life during the year of my divorce/ending homeschooling/putting kids in public school/getting a J-O-B after 8 years/getting laid off of that job and getting a different job/buying a new house, she looked at me and said “You seem like the kind of person that no matter what has figured out how to pick up their feet and put them down again, and keep walking along.” My sister said “You are right; she is.” That’s one of the biggest compliments I’ve ever gotten.

    But you? You do that very same thing. You keep on, doing the next thing on the list. Because that is what you do. You aren’t anyone’s hero (well, except mine a bit, but I won’t tell you that), you are just the best Mir you could be. And that is pretty awesome.

  39. 39
    Corey June 4, 2012 at 12:57 pm #

    Keep going, mama. She loves you, and you love her. Just keep going.

  40. 40
    Tracy June 4, 2012 at 1:21 pm #

    I don’t know what to say. I don’t think anything I say will matter. So, I’m just gonna send you and your entire family a virtual hug! {{{{{{{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}}}

  41. 41
    Anna June 4, 2012 at 1:39 pm #

    Holy moly. I read through about ten comments and gave up. I’m smart enough to know that there’s no way I have any clue what you’re going through, despite having one or five similarities with you.

    This is awful, no doubt. I’m sorry it’s been so rough for you. I am glad you’re sharing, though, for your sake and mind.

  42. 42
    Lara June 4, 2012 at 1:52 pm #

    I liked what Chris said “Some days I am amazed at my patience. Other days I snap at things which are completely ridiculous. And just when things seem to be going well and I begin to exhale, there is another set back.”. This is probably true for all parents but especially for those of us with special needs. I so get what you are saying. We have two boys: one with an ultra rare and devastating genetic condition and one that has just been diagnosed with ADHD primarily hyperactive-impulsive type. Both have been a tough journey but it is the behaviour of the child with ADHD that has put enormous strain on the marriage, parent-child relationships, and is taking a toll on his sibling (actually maybe that one goes both ways, hard to say since the child with ADHD is unable to express his feelings yet!). I think counseling would be wise but personally, I haven’t figured out how/when I could fit that in ;) Maybe when the little one starts school! Hang in there Mir! Hoping it gets easier soon for you all.

  43. 43
    Emily June 4, 2012 at 2:10 pm #

    (((Mir))) Others have said this same thing, and so I’ll just add my amen: Teenage girls are often the most brutal to the those with whom they feel the safest. When I struggled with chronic problems as a teenager, my mom and I went through that same awful roller-coaster of I love you/I hate you/I’m terrified/I’m fine/Leave me alone/Don’t ever leave me. It got better, really it did…but I still cringe when I think of what I put my mom through, all because she was the only person in the world who was walking through that awful time with me, step for step. I’m so sorry you and your Chickie have to walk that road at all.

  44. 44
    Kim June 4, 2012 at 2:24 pm #

    Well, I am reading between some lines here, and if that makes me out of line, please forgive me. It seems to me that you’ve had some close calls with Chickadee already. And if giving into this disease involves the possibility of actual death, than somebody who is not you – Otto, your dad, her dad – needs to explain to her that she is not ever allowed to say she’d rather die to you again. I don’t care how much pain she is in, or how she is trying to deflect it, that statement is off-limits. She is scared and weak and hurting, fair enough, but it does not excuse her from throwing your worst fear in your face. Ever.

    Hugs to you, Mir. I know it’s easy for me to say, and I have no idea how you would enforce it, but oh, that one made my heart ache for you.

  45. 45
    TC June 4, 2012 at 2:34 pm #

    Sometimes when things get really terrible and I want to throw my children through windows, I will grab them (not as gently as I’d like), put my hand on either side of their head (not as gently as I should), put my forehead against their forehead, and stare into their eyes and just grit my teeth…and THINK rather than say terrible horrible things about them. And then I will kiss them on the forehead and walk away.

    On good days, they think we just had a bonding moment. On bad days, they think I’m weird, but relatively harmless. Me, I walk away usually feeling a little sick by the intensity of my feelings of hatred or anger, but calmed by having sort of gotten them ‘out’ and pleased by not having actually spewed any of my vitriol on them.

    I wish I wouldn’t have those terrible mean thoughts about my kids, who I love more than anything. But I figure this is better than actually letting them out, right?

    That’s not a suggestion. It’s a “god it sucks, doesn’t it?” moment of empathy, only. I know you have your own strategies, and don’t need my somewhat psychotic ones. But in case you were feeling alone, you’re not. NOT AT ALL.

    Also, love your dad.

  46. 46
    Karen R. June 4, 2012 at 2:55 pm #

    Mir — You and Otto are awesome parents. Hugs, sympathy, and virtual chocolate on the way.

    Would your dad be willing to adopt me?

  47. 47
    Navhelowife June 4, 2012 at 3:15 pm #

    Hugs. And Good thoughts. And hoping that things settle down soon. I wish I could offer all sorts of helpful advice. Mostly I just send love.
    And whatever of my knowledge you want to draw upon.

  48. 48
    Arnebya June 4, 2012 at 3:20 pm #

    I know I don’t need to say this really, but I feel the need to say: there is no idiocy, Mir, none. We are all going day by day b/c none of us know how to navigate our kids usually. Throw in diagnoses and pills and doctors and emergency rooms and hormones — shit. I wish I had an answer, even a direction. Oh, how I wish I did. All I’ve got is I’m here, reading, not knowing an iota of the hardships/pain/work that is rearing YOUR children, but knowing full damn well you got this (even when you don’t believe it yourself).

  49. 49
    erin June 4, 2012 at 3:21 pm #

    Praying for you and yours

  50. 50
    Genevieve June 4, 2012 at 3:28 pm #

    Oh, Mir, I’m so sorry. What Liz said, a million times, about how what Chickie said to you proves that you’re doing so much so well, and Chickie knows it.

    Is there a possibility that Chickie would be willing to see a therapist? I know it might seem like yet another doctor, but if she could go in a room with someone she likes and pour out all her fears and anger about the chronic illness, and work through how she can handle them, that could help.

  51. 51
    Mir June 4, 2012 at 4:52 pm #

    She has a therapist, of course. But the therapist is dumb, you see. Just like everyone else.

  52. 52
    Genevieve June 4, 2012 at 5:03 pm #

    Arrgh – sorry, Mir! Then I support those above suggesting either a therapist or a caregiver’s group or some other assistance for you, if possible. (Thinking about that old advice to parents of small children to metaphorically put on their own oxygen mask before they put on their children’s.)

  53. 53
    Jennifer the Iowa Expat June 4, 2012 at 5:56 pm #

    Thank you for being so transparent, articulate and awesome. And for having the best readers/commenters and dad. Praying for your family as I pray for mine.

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    Jeanie June 4, 2012 at 5:58 pm #

    I’m so sorry you, well, both of you, are in this position. Prayers.

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    Betsy June 4, 2012 at 6:26 pm #

    I have been where you are, once, long ago. With three teenagers, 2 of ‘em girls. I thought we would never make it. And now, some 20 years later, they are all wonderful, productive members of society. Even better than I could have imagined. You are doing it right. And, I know it is cliche, but “this too shall pass”. Oh, except for the fear in your chest….yeah, that pretty much never goes away ;).

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    Valerie June 4, 2012 at 6:53 pm #

    There isn’t really much I can say to make you or Chickadee feel better. Commiserating with Otto and Monkey won’t help much either. No one thrives when they feel (or are) powerless.

    What I can do is tell you where you no doubt already know you have a strength, a power. You have a gracious ability to see, really see, in your life. And then you leap beyond that sight, find the words to share it, and spread that sight, really, that wisdom, to others. You are a very real person, even through this glowing screen. You know who you are, you know what you can do, and you do everything in your power for the ones you love. Your words and your actions resonate with me (and obviously many others) long after I have read them. It is quite a gift to articulate your joy and this pain with both clarity and compassion, with humor and grace-especially while you are living it. You are truly a wise mother and a gifted writer. Thank you for sharing those gifts.

    PS – To Bryan #38 – I so appreciate ‘The Bean Trees’ reference and think you are very wise.

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    Jessica June 4, 2012 at 8:18 pm #

    Oh, Mir… I have no words of wisdom (I seem to have run out a few weeks ago, so perhaps all the other words I had before weren’t that wise anyway), but I can pray for you and your family, especially you and Chickadee.

    It’s all I have right now, but I can see you that you have a buffer of support in your own dad, and sometimes that soft place to fall (be it your husband or your parent or your friend) can help you see that, while it’s not visible right now? There is light surrounding all this darkness. It’s just getting Chickie to fight through to see it and maybe even just trying to see it yourself right now that is so freaking hard.

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    Karen June 4, 2012 at 8:23 pm #

    Mir, my heart breaks for you tonight… I wish I could come up with something that would bring relief. I do know a small part of this particular brand of torture… only my daughter’s anger comes from a Traumatic Brain Injury. I, too, am the one she turns on, and I believe it’s because they feel safe with us, that they can let it all loose, this anger they have. They really have no where else to “put” it…..So in one way, it’s confirmation that we’ve instilled in them that they are safe in our presence. Although it hurts like hell, doesn’t it.

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    Kat June 4, 2012 at 8:24 pm #

    Mir, I have no advice, just hugs and a thankfulness that you blog about all these difficulties. I also have a chronically ill child and it is so draining. I really appreciate that I can come to your blog and know that I am not the only one who feels that way. That is so oddly reassuring. So, thank you and I pray that Chickadee will feel better soon.

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    addy June 4, 2012 at 8:28 pm #

    Love and hugs and prayers and never ever pray for patience…..

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    Kateebee June 4, 2012 at 8:28 pm #

    My heart and “cosmic” support go out to you. Teenage girls are their own special trial at the best of times. Anything extra just ramps it up exponentially.

    Grades 9 to 12 were ever so special. She went through rejection by father (he decided he didn’t want to be part of a family). No matter how angry she was with me living with him was not a viable option. So she organized a run-away to the neighbouring province – complete with homework assignments. Then came the combo of mono and strep which read as cancer or hepatitis for the first while. Paediatric oncologists are awesome people. The lost time from school and work because she would wear out and fall asleep. Her friends calling me to come collect her from the school lounge.

    There was the secretly abusive boyfriend. The loss of self-esteem. The calling the medics to take her into care since she had cycled from hating me to sitting unresponsively on the floor. There were the times where all the work I did for the school paid off with calls from the VPs keeping watch on her and letting me know what was going on.

    Now she is strong young woman who graduated with good grades. She manages a retail store. Hires, fires, buys, stocks and sells. Always has at least two jobs on the go and often three managing for other businesses. My face is tattooed on leg. For mother’s day my flowers were added to the image. I get phone calls or texts every day – just staying in touch. And facebook callouts that reverberate to her hundreds of friends.

    She’s not who I was but she is definitely who she is. The road was long and rocky. She eventually took herself back to the other province to show that she could make it on her own.

    There were days when I wondered how it would all work out… it it would even work out at all.

    You’ve made your impression on her. Letting it out on you is her safe place for dealing with it all.

    Take heart.

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    Kat June 4, 2012 at 8:33 pm #

    Actually, I do have a tiny bit of possible advice that I forgot to mention. I read this book a month or two ago and found it useful for me:

    “Parenting children with health issues : essential tools, tips, and tactics for raising kids with chronic illness, medical conditions & special healthcare needs” by Cline, Foster.

    Of course, your situation is different than mine, but maybe it might have some insights for you too. I hope it helps.

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    Deanna June 4, 2012 at 8:55 pm #

    Oh Mir! Hugs to you. I posted a while back about my daughter’s struggles I can so relate to this post. How everyone else is too stupid to breathe to her and no one UNDERSTANDS!!! There has been loads of advice here, so I will only add that on the “good days” which equate to ” 20 minutes where I didn’t want to pull my hair out” try to breathe. Try to recoup even just for a minute. Also try to remember that you are going through trauma too and it brings with it it’s own version if PTSD. You seem to have an amazing support group around you, let them help if they can. Many many hugs.

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    Fairly Odd Mother June 4, 2012 at 9:03 pm #

    I only dealt with 1/25th the strain you are going through with Chickadee but I remember the venom with which my once-beloved child shot accusations at me when she was spiraling downward. So much anger, so much anger. It almost takes my breath away to remember it.

    This isn’t YOU though. You haven’t done a damned thing wrong. You are the punching bag, b/c you are safe and will be there for her no matter what, and she knows it. And maybe, in some weird way, this “fight and make up” cycle is working for her. I wish I had any idea of how to break the cycle, but please, please, please protect your heart in any way you can. I’m all for covering the ears and shouting “LA LA LA, I CAN’T HEAR MEANNESS” b/c I have the maturity of a 7 year old. Just remember that when she is “hating you”, it is because she loves and needs you desperately. She’s lucky to have you in her corner (even if you have your ears covered). {{{hugs}}}

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    Margaret June 4, 2012 at 10:35 pm #

    Mir–I read your post earlier, and wanted to comment, but simply didn’t have any idea what to say. It’s a good thing that my sister, Bryan, came up with something worth saying.

    Just know that all you can do is what you can do. You love your children so fiercely. That is obvious from here. What is also obvious is that Chickadee loves you fiercely as well. You are both strong, and you will weather this.

    You have support. I know it is so HARD (for me) to accept help from others. (just ask my sister about that one) You have no choice about shouldering so much of this…but the things that others CAN help with…try to let them.

    Hang in there!

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    elz June 4, 2012 at 10:55 pm #

    It’s tough. Being a teenager, and (I imagine) being the momma of a teenager. The whole situation is exacerbated by so many factors out of anyone’s control. I hope that Chickadee’s team of doctors can find relief from some of her symptoms. Hopefully time will cure the rest. You’re doing your best and that is all anyone can do.

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    E's Mommy June 4, 2012 at 11:22 pm #

    Oh Mir, I’m so sorry everything is just so relentlessly hard for all of you all at once right now. My kids aren’t teenagers yet but I remember being a total bitch to my mom in high school. And that was without a chronic illness or being an aspie. So I can hardly even imagine all the anger and hurt that you’re fielding from Chickie right now. This is all so hard and it seems like you and Otto really are doing great at loving both the kids, even if it doesn’t feel like Chickie knows it most of the time. I’ll be sending good thoughts your way.

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    mamaspeak June 4, 2012 at 11:34 pm #

    um wow.
    I have no words. I’m a bit terrified, as I have 2 girls headed toward tween-dom. And I’m having flashbacks to the prize I was as a teen. I was/am the girl w/the chronic illness. My didn’t set till college, but much of your writing could’ve been directly about me. I cringe when reading it, knowing that I’ve got at least one, who is going to show me how it’s really done. Two things: (not advice, personally I’m going to bookmark this last year as a reference manual for my two.) 1) when I was sick, (and no one could figure out why,) I was put on an elimination diet. I spiraled into a major depression. (Because just being physically sick wasn’t enough, I’m an overachiever.) After several episodes similar to what you’ve written, I went in to my doctor & told him what was going on, & then he informed me that I was probably having a physical depression because of the elimination diet. Information that might have been good to have BEFORE! Anywho, in addition to the hormones and general feeling like crap because of my illness, the change in diet contributed to the problem. (Just a thought.) 2) I think that you need some time away. Maybe some time w/Otto away, but for sure, a couple days ALONE.
    Go somewhere (or send the family away) and don’t work. Read a couple books that are easy to distract, but won’t make you think too hard. Watch some movies on the couch & eat ice cream from the carton.
    (((hugs)))

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    Monique June 4, 2012 at 11:40 pm #

    I can’t say anything that hasn’t already been said. So just….

    ((((((Hugs)))))) and prayers.

    I hope it turns around for you all soon. God bless.

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    Meg June 4, 2012 at 11:43 pm #

    You are amazing, Mir. And you’re not amazing because you know exactly what to do and exactly how to fix her. You’re amazing because you love her and you’re sticking by her even though it’s really damn hard sometimes, for her, for you, and for the rest of the family.

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    Linda June 5, 2012 at 2:54 am #

    I don’t have any advice or wisdom, but please know that you and your family are in my prayers. And thank you for the gift of your writing and for sharing your life with us. It is through your writing that I’ve been able to bring more insight and understanding to my students who are on the Autism spectrum, including one precious saxophone player who started the year with meltdowns and is now a rock solid cornerstone in the section. I really can’t thank you enough.

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    Mom101 June 5, 2012 at 7:03 am #

    Oh Mir, I’ve been following this and holding my breath with each new post, waiting for the happy ending.

    My kids get very upset when something bad happens to a character they like in a movie. I explain that every hero has to face a horrible obstacle so that they can overcome it and resolve the movie in a positive way. Each day, I’m rooting that you’re on this character arc , about to hit the pinnacle of awfulness and immediately start gliding towards the happy resolution.

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    liv June 5, 2012 at 8:12 am #

    1. your dad is awesome.

    2. wish i could give you a hug. i’m sorry things are so incredibly sucktastic and difficult right now.

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    Tenessa June 5, 2012 at 8:33 am #

    I think, perhaps, you ARE that mom. One need not be the Perfect Paragon of Patience to be a great mom. You are there for her through thick and thin. You will do whatever it takes for you kids, even set aside yourself. I’m thinking the selflessness of your actions makes you an excellent mother, and the realistic light in which you see your limitations just makes you stronger. Cyber hugs to you and your family.

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    Megan June 5, 2012 at 9:06 am #

    No brilliance to offer (as always), just love – lots and lots and lots of love for all of you.

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    CJ June 5, 2012 at 9:18 am #

    Just reaching out in solidarity because I trust that you will find the patience, wisdom, and (eventually) wit to get you through to another sandbar of calm.

    When one (or more) of our children is in the midst of some crisis or another (real, imagined, or otherwise), I always think: this is what nobody tells you about having children. You hear that they’ll keep you up at night, they cost you a lot of money, they’re a constant test of patience, they’re a great joy, you’ll never know a love like this…but nobody ever says that they are capable of shaking your sense of confidence, stability, and sanity to the core. Keep trusting that you’ll find the best way that you can.

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    deva June 5, 2012 at 9:24 am #

    I don’t have any advice to offer, just hugs. I was once the angry teenager, and a friend of mine has a theory that as teens, we are our worst toward those who love us because it is hard to keep it together for everyone else, and those who love us are safe and will always love us.

    I hope things for you and everyone start to imporve soon.

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    Deirdre June 5, 2012 at 10:00 am #

    I don’t have any advice or words of wisdom. But I am a virtual ear to listen, and I will get in line to send you more virtual {{{{hugs}}}}.

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    Kris June 5, 2012 at 12:17 pm #

    I’m so so sorry. :( Dr. Fuhrman, in NJ, is a family medicine doctor who thinks outside the box and has success curing “incurable” or “Undiagnosable” problems. Check him out. Sorry if this is assvice, but he is extremely talented.

    Much love.

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    Jen June 5, 2012 at 1:49 pm #

    Well. Crap. That pretty much sums it up. I can’t say anything trite, like it’s gonna be ok or hang in there, ’cause those words just don’t hold up to this level of stress. Just hugs to Chickie and all of you.

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    Wendy June 5, 2012 at 7:55 pm #

    Yeah, what they all said. I wish I could have said it so well. All I can do is send “HUGS”.

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    Michelle June 5, 2012 at 9:31 pm #

    No words of wisdom, just sending you some good vibes. Take care of yourself!

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    Lindsey June 5, 2012 at 10:58 pm #

    I have to echo what Lucinda said about dealing with chronic illness: I don’t know what specific brand of illness Chickadee has but I was diagnosed 6 years ago (at age 30) with MS and it took several years before I really came to terms with everything that truly meant.

    Shoot, in many ways I’m *still* figuring out what that’s going to mean to me down the road.

    But there was anger and fear and sadness and tears and all that crap, and those things still come up periodically.

    One of the things that helps me the most is just letting myself feel whatever I happen to be feeling when it comes upon me. I think in this society we sometimes think we have to always put on a happy face and be ‘brave.’ Well, shit. Chronic illness sucks. It just does. Being in hospital sucks, getting poked with needles sucks, having to take a million pills every day sucks. All of it. So I let myself feel the fear or the pain or the sadness and then move on.

    Dunno if that’s helpful at all, but I feel for you and hope so much that things get better for Chickie!

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    Susan June 6, 2012 at 9:29 am #

    I love Jen’s comment of “well. crap.” Because that comes as close as anything to articulating how I wish for you that things with Chickie could be different right now and how powerless I know you must feel.
    Prayers, love and hugs to you. I realize you don’t know me, but I’ve been cheering for you from the sidelines for the last year or more as you struggled with Monkey’s medical and Aspie issues. And I will continue on with my cheering…sending wishes for peace and health your way!

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    suzie June 6, 2012 at 10:17 am #

    I wanted to comment to lend you support, even though I otherwise have no idea what to say.

    I do think that as long as Chickadee can have these moments of recognition of what’s really going on, you can know things will be okay. Doesn’t help what’s happening now to be any easier, I know.

    So – to echo: Crap.

    Hugs to you both (all of you, really).

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    Zara June 6, 2012 at 10:28 am #

    Mir, can she go to Mayo yet?

    You have an immense load. Please take good care of you first during all of this– remember the airplane instructions? Put your own mask on first before assisting others? Same situation right now.

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    Jenne June 6, 2012 at 10:46 am #

    Oh Mir — I can’t even imagine.

    “Well, crap” pretty much sums it up.

    Sending you both a hug. <3

    Jenne

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    Carole M. June 7, 2012 at 9:56 am #

    Mir, I know you will do everything in your power to see this girl through all her troubles. But you MUST protect yourself, too. Have you tried saying kindly but firmly, “I choose not to be spoken to like that” and then walking away, when the abuse starts? YOU will be changing the “rules”, the “game” or whatever you care to call it. You have already proven to this child that you will move heaven and earth for her in any way that she needs. So by expecting a bit of respect, you are not abandoning her; you are giving her a tool to help her to grow up. She’s a very, very bright girl, an emotional girl as are all teens, but she should not be allowed to ride roughshod over her biggest supporter.
    Having said that, I want to give you the same support that the other commenters have. You are a terrific mom and I love the glimpses into your lovely family. Do your best to take care of yourself and the other family members though I know that is easier said than done. Carole

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    Brigitte June 7, 2012 at 9:56 am #

    I’m late to read this, and so sorry about what’s going on. Just HUGS to everyone!

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    Amy June 7, 2012 at 10:16 am #

    Just joining the chorus of well wishers and sending good, peaceful vibes your way.

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    Annette June 8, 2012 at 12:31 am #

    Praying for you all. I can’t say I know what you are going through but I have glimpses of myself in your scenario. My ADHD kid has maxes out the dosages of his meds and we were at our wits end. On somewhat of a whim, his doctor started him on an antidepressant and we had a miracle occur. We will probably have to mess with the dosage, but everyone in our home can breathe again. Praise God!

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    Natasha June 11, 2012 at 7:19 pm #

    Ah God, friend. I’ve been away on vacation and am only now catching up with you.

    I need to tell you, that you are an inspiration to me, and to so many others. If I can parent HALF as well as you do, I’ll be satisfied.

    I’m not teaching this summer, and I’d love to deliver food and hugs to Casa Mir. Or just margaritas. I’m flexible!

    Love you, lady.

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    Katie in MA June 12, 2012 at 11:28 am #

    As much as you want to do for her, to help even just a little…that’s what we’re all feeling for you, my friend.

    I hope it’s a bit easier today and the next day and the next.

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    Jomama June 18, 2012 at 12:37 am #

    So sorry to hear you are going through hard times. The only branch of hope that I can offer is that my friends who went through hell during the teen years (alcoholism, truancy, running away) have weathered it, survived, and returned to loving, connected relationships with their kids. Not the same relationship–no way. But connected again with mutual respect. Hang in there.

    And you are right to pay attention to the long term effect on siblings. As parents, we have to keep loving our kids, no matter what. But collateral damage to siblings will last a long time, given they are also in their formative years. God bless all of you and good luck.

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    Jordan June 21, 2012 at 12:20 pm #

    I was once just like Chickadee. From the time I was a child, I always had something no one could explain wrong with me. Headaches that have lasted sixteen years, random rashes, massive issues with food, all of the above. My doctors are starting to figure it out, but its been a rough road. I was just as horrible to my mom about yhings as anyone could be, with a twist. While we didnt know what was wrong with me, mom was diagnosed with breast cancer the day before she turned 40 in the summer between seventh and eighth grade. I was not only in a tail spin because of myself, but would have done anything to push her away so it wouldn’t hurt if she died. I hate being left, a lingering feeling that comes from being adopted because I was a special needs child and feeling unwanted by my birth parents. Thankfully, she went into remission and things got a little better again. Then it came back and while I was sixteen and in the height of teenage horror, I was needed. Mom had chemo every Friday of that summer and dad broke his ankle. I wasn’t the most graceful about doing what needed to be, but I was there at every doctor’s appointment, wheeled my dad around his work orientation, and didn’t have a life outside my family that summer. Dad’s leg healed and mom went back into remission as my junior year started and things were almost good for more than a year. Then a bad relationship went south, I dropped out of school because it hurt too much to be there, and I started to slip back into some dangerous self injury. I got my ged and tried to start college, but was still sinking. Mom was diagnosed again that fall. I ran off with my ex for days at a time, leaving in the middle of the night, and skipping most of my classes. I failed out my second semester, but I never missed going to an appointment. I was resentful that i was giving up my life for her, working her job when she was too sick and going to every appointment. I was terrible to her, and she was right back. But we still loved each other and even when we fought, we would often break down in tears laughing just my looking at each other or saying one of our funny words. We lost our jobs when the office closed in 2008 and she got worse while I started having problems of my own, including a hospitalization for a surgery and one in the psych ward. Mom was the only one who could get me out of bed, make me care about something. I still got angry with her for having to be hospitalized on my birthday that year and ruining christmas as well. The next year, we moved. Things got a lot better for me personally, but mom was getting sicker. I went back to college because she wanted me to, made new friends, and still made every appointment. I started to get angry at missing out on some social stuff, but it didn’t boil over until the summer of 2010. I never got along with mom’s family and we spent most of the summer with them. Mom didn’t have much time and I acted like a spoiled brat, as did my thirteen year old brother. One particularly bad one involved scarring up my arm over not liking dinner my uncle’s fiancée bought us on a trip so mom could swim with the dolphins in Florida, her last wish. There were more blowups that summer, but everything stopped the first week of August 2010. I put up with, and even got along with my crazy aunts who had been trying to keep me away from mom in the hospital for differences in relious views. Mom’s time was up. She passed away August 3, 2010. And I spent her last 24 hours never more than three feet away, not sleeping, just holding her hand and telling her i loved her and it was okay to go. That was the hardest thing ive ever done. But she needed us to say it, she had been hanging on so hard and fighting so long. It still breaks my heart to think of losing my mom, even two years later. It always will.

    I spent my teenage years loving and hating my mother, lashing out and laughing in turn. The one thing i can always say is that I know she always loved me. Everything she did showed that, it just took me a while to see it. Chickadee will someday come to the same realization, because I see in your story my mom’s and mine. It might be some years before she can say it, so here it is from another daughter who has an equally awesome mom. Thank you for everything you do.

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    winnie June 22, 2012 at 12:58 pm #

    I read you post on BlogHer today and was moved, so I had to visit your blog. I know words can sound hollow at times, but I am sending all the best to you and your daughter (and the rest of your family, too!) You are are loving her, and that is what is important. I can see why you are a freelance writer as your writing is moving. P.S. I am one of the sock wearing Birkenstock wearers… Thought that would bring a smile to you today.

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