Love isn’t always what you pictured

By Mir
July 8, 2010

You may have noticed a lack of Monkey stories this week. That’s because he’s away with his dad, and we are trying to muddle along in the space he leaves behind when he’s gone. Specifically, that space denotes a marked lack of: dimples, jokes that make no sense whatsoever, and hugs that squish the air right out of me. (I miss two out of three of those things a LOT.)

While my kids are always on my mind, here or not, Monkey’s been on my mind even moreso than usual. I share bits and piece of the immediate, here, but thanks to the kindness and encouragement of fellow mom-in-the-spectrum-trenches Shannon Des Roches Rosa, I finally sat down and wrote about our diagnosis journey, the way that only hindsight can tie it together. I struggled with it; sometimes I don’t know if I can explain how “wishing it was different” and “loving him exactly how he is” can intertwine and coexist, even as they seem to contradict one another. They don’t.

This Love Thursday, I tip my metaphorical cap twice: first, to those insightful rockers who noted that you can’t always get what you want, but sometimes you get what you need; and second, to the beautiful and perfect young man who has taught me more about grace in the last ten years than I’d learned in the previous nearly-30 years.


  1. Aimee

    I just left a comment on your diagnosis post, but I’ll leave one here, too — I love the way you write about your kids. It makes it impossible for this reader, anyway, not to love them, too.

  2. Debbi

    I truly believe that our children are here to teach us, not the other way around. I’ve learned more from my Bubby over the last 9 years than I have ever learned before. :-)

  3. Therese

    Awwww, now you made me cry all over the keyboard. That’s really a beautiful Monkey tribute.

  4. Leandra

    Boy, you captured EXACTLY what I’ve felt about my Punkin — loving her just as she is but at the same time wishing things were different. It’s such a relief to know I’m not the only one that feels that way.

    I’m probably going to jinx things by even saying it, but lately her behavior has been so improved that I actually haven’t been feeling that dichotomy very much.

  5. Kristine

    I just read your post on the diagnosis and you are a wonderful, caring, compassionate mom. Monkey is lucky to have you as you are very lucky to Monkey. I so look forward to your posts. You are a real — thanks!

  6. Jennifer Joyner

    It is so wonderful that you are sharing your very personal story with others. It is so, so helpful to others who are in the same situation and think they are alone. I know that Monkey will be fine–he hit the lottery in the parent department!

  7. Laura

    My son doesn’t have Asperger’s, but he has Down Syndrome. Even though the two syndromes are vastly different your post totally hit home. 17 years after my son’s birth, I can see how this is exactly the life we needed to have, even though at the outset it was not what I thought I wanted. I have learned more from Sam and from being his mom, than I ever would have otherwise. I am a better person because of him. Countless lives have been enriched because of him. So now when I hear about kiddos who are different, I think of what a great gift that can be. Sometimes you have to look extra hard to see the gifts you’ve been given, but they’re always there waiting to be found. I think you’ve already spotted some of them and I suspect you have many more in store. Cheesy sentiment; maybe. True? Totally.

  8. paige

    Speak it, sister.

    I’ve got an 18 year old son who has suffered from severe depression for most of his life. He was diagnosed very late, when he began having psychotic symptoms at 14. It’s been a journey. My daughter also suffered a severe depressive epsiode. Fortunately we got them both in with the same pediatric shrink and the same therapist.

    It’s been a long, long road, with lots of ups and downs but both are stable and have been for most of a year. Long way to go for my son, still.

    Would I change them? No. I wish I could make the pain of their past illness, and the social stigma go away…but then would they be the same wise, funny, compassionate souls that they are now? The kids who speak up about depression and teens, who refuse to be categorized or labeled or stigmatized? They are so, so brave. I am so proud of them.

    I wish, though, that they could be who they are now without having had to go through the depths of hell they suffered through.

    Not a contradiction, Mir. Not at all.

  9. Katie in MA

    You, your writing, the love your family has for each other – I am inspired each and every day. The glimpses that you share with us have made me a better mom. So thank you to Monkey for being Monkey and to you for sharing so much with us.

  10. Megan

    That is a fantastic post – absolutely beautiful.

  11. Little Bird

    Speaking as one who IS in that spectrum, people like you make it easier to deal with my own issues. I know that may sound odd, but when you don’t have to explain every single thing you do to someone who has no understanding of it, a huge weight is lifted. People like you make it so kids like Monkey can learn to love themselves, while still trying to do better. Thank you.

  12. Heather

    You’re a really amazing lady, Mir, with some pretty dang amazing kids, to boot. I agree with Aimee – and trust you to understand this to not be in a scary creepy kind of way – but over the years of reading your blog, I have come to truly care about and even love your kids. I’m so glad Monkey has an advocate like you in his mother, and I’m happy also to know that you have such a tremendously special son, in him. Sending you all virtual hugs and Bakugan and magical, delicious, vegan, gluten-free (and I suppose even ‘soggy-worthy’) cookies!

  13. AlisonC

    You made me cry again!

    When Monkey comes home give him a hug that squeezes the air out of him from me.

  14. Karen

    This and your diagnosis piece are beautiful. I get the whole loving who they are while wishing some things were different. I adore my daughter and would never trade her for a neuro-typical child. At the same time, I wish she could be spared the pain and difficulties that come hand-in-hand with living in a society that does not understand, accept, or provide many opportunities to utilize her many strengths.

    The article that made the biggest difference for me when I was coming to terms with having an autistic child was “Don’t Mourn For Us”, by Jim Sinclair. That should turn up in a search engine.

    I’ve already mentioned one support list to Mir; there is also a homeschooing list for families who are homeschooling autism-spectrum children. My daughter’s middle school experience was pretty bad (and this was in a private special ed school), but she had a wonderful high school placement and had a good time through those years.

    Good luck with whatever choices you make.

  15. Jennifer

    A couple of things:

    I figured you weren’t blogging much about Monkey because it’s Otto week.

    And the dimples remind me of what my sister posted on FB. Her 3yo daughter told her that she liked her 1yo brother’s nipples. After questioning C, my sister clarified the difference between nipples and dimples!

  16. Debra

    Hanky warning please! What a wonderful story!

  17. Karen

    Mir, don’t just blog. Write a book, there is already a book here. You’ve got what it takes, kiddo…and you do it with a style your kids will always be proud of.

  18. Jill W.

    Beautiful, Mir. Just beautiful. Thank you for sharing that with us.

  19. elswhere

    Such gorgeous writing, that diagnosis post. I’m glad Shannon encouraged you to write it and that you did.

  20. Mary

    There’s nothing in the world like a special mom for a special Monkey!

  21. Brigitte

    Had to make me grab a tissue. Yet again.

  22. s

    your son is so lucky to have you in his corner. And that doctor? Wow, amazing how spot on he was, even if his delivery leaves much to be desired.

    You are the kind of parent I wish I was – and your writing is beautiful.

  23. dad

    Bravo! for both posts.

    Nice, smart and awake.
    A winning combination.

  24. Karen

    Your piece was really beautiful. Hugs and kisses to your family.

  25. Kathy

    Thanks so much for sharing your journey. As I commented on your other post, Monkey sounds SO much like my son and I wonder if maybe we haven’t found the right doctor yet. Thankfully we have an appointment with a new psychiatrist next week. That comment though, that Monkey made to his friend? WOW! He is brilliant, and in being able to acknowledge that to another kid? I think he is going to be more than fine.

  26. Tracy

    I know, I’m always last to comment because I sometimes get busy and have to catch up a day or sometimes longer, later. But I had to comment on this because I think Monkey and Chickie are the 2 luckiest kids on the planet to have a mom that goes the extra mile to not only find out what’s going on with them but actually and sincerely goes a step further to truly understand what’s going on with them. Most parents (more so today) are too busy to even be bothered with it and it goes unnoticed and untreated for decades until their children are young adults before it’s diagnoised. So, to that I tip my hat to you, Mir (and Otto) for being concerned, loving and more importantly, patient parents.

    Happy Love Thursday, on Friday!

  27. Chris

    While my own 2 special snowflakes do not have the challenges that Monkey has, your stories and writings have reminded me to appreciate their differences and that I have as much to learn as I have to teach. Thank you.

    I second the book comment. I will be first in line to buy my signed copy

    Happy Love Friday

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