Tuesday, July 30, 2013

On getting sucked into special needs parent self-pity


It was the kabobs that started it. A lovely article in Real Simple magazine with 10 variations—a plum and oregano chicken kabob, a miso-glazed mushroom kabob, a halibut, potato and scallion kabob. As I practically drooled onto the page, it occurred to me that Max would have a hard time eating them. Dave or I would have to slide the pieces off the skewers and cut each up into bits, or feed him something else entirely.

Suddenly, I wasn't looking at some delicious dinner possibilities, I was looking at a bunch of choking hazards. I sighed.

Last night, sitting on my couch at 9:55 p.m., I got sucked into self-pity. Why can't we just be a family who enjoys a barbecue with kabobs? I thought. Meanwhile, I'd opened my email to find a message from a coordinator at a program Max is going to this summer. Along with the forms, she needed me to provide a prescription for Diastat (in case of seizures) and the Auvi-Q (in case of allergic reaction). Aaargh! More stuff to do! I thought. And then: Why does everything have to be so hard? I wish my life was easier.

It's not often that I wallow. Every day, I handle plenty of stuff for Max's benefit—Sabrina's, too—and I don't think twice about it. That's what we moms do: We do. Every once in a while, though, I get the woe-is-me blues about the extra responsibilities and challenges that come with having a child who has special needs.

The pity struck a lot more often when Max was a baby, when I was overwhelmed with all the therapy to-dos and full of anxiety about his future. I just wanted to be one of those moms serenely wheeling her babbling tot down the street or watching him play on the teeter-totter at the playground, and it pained me that I wasn't. Crying in the shower was as much of a daily habit as shampooing my hair.

As Max progressed and I matured as a parent, the tears receded. I rarely cry anymore about what happened to him. I look at Max and see an amazing kid, not a tragedy. I've learned not to peer too hard into the future for answers nobody has. But I still have bouts of pity—for me, for Dave, for our family. Even though I can't stand it when others pity me (or Max), I let myself go there.

Restaurants have long been a trigger; when Max has a sensory freakout, I ache to be one of those families happily chowing down. I pity us when Dave and I struggle to wrap our work life around a medical appointment or a string of them, as happened recently with serial casting for Max's feet. I feel a twinge of regret every single time I hear about a family going on a hiking trip or some other physical adventure Max isn't yet capable of tackling. And when I go over expenses with Dave, wow, do I pity us.

Sometimes, as happened on the couch, the pity onset is unpredictable. There is no known antidote, not even Turkey Hill Peanut Butter Pie Frozen Yogurt. If Dave is around I'll talk it through with him and that helps. But more likely than not, I'll sit there and wallow for a while. And that's OK.

Last night, I stared into space, mulling over kabobs and taking care of Max.

And then I turned the page.

32 comments:

  1. Thank you. Simply, thank you. I wallowed in self-pity last night, in bed, for the umpteenth time, over my special needs grandson. I berated myself for wallowing. I like your last comment about turning the page. Maybe I can allow myself to wallow for a few minutes and then, without beating myself up, turn the page, too. Thank you for sharing!

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  2. Maybe this will help a tiny bit: Remind yourself that the family making and eating fancily-spiced kabobs is as mythical as Norman Rockwell's painted Thanksgiving Day family. If the neurotypical family I'm most acquainted with attempted a meal with any of those kabob variations, they'd have to order out for plain pizza (none of those gross green basil strips, and no vegetables!) or the kids wouldn't eat at all.

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    1. A good, rational point—but rationale doesn't always stop my mind from wandering. Also: These kabobs were pretty simple to make! :)

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  3. We all have days of self-pity God knows I have plenty but what that happens I remind myself that there are people out there going through worse things than me.

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  4. I really enjoy this blog because it's honest. Here's what my experience (14 years and two children with disabilities in...) tells me. Having an acceptance of your child doesn't mean you ever finished the journey. I think everyday that we don't slip into the negative is means for celebrating, but we are human and it's better to acknowledge and embrace all our feelings...as opposed to lying to ourselves and charging forward with a facade of strength every single time. A pity party every now and then is completely normal if you ask me.....sometimes even necessary....but like all parties....best if not done on a daily basis...Everything in moderation and keep striving for balance :-)

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  5. Thank you for your honesty. I have moments like this when I think why can't we just (insert activity that seems so easy for other families and is an ordeal in ours). And I have a little pity party for a while. I'm glad to know I'm not alone. xo

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  6. As long as you do change the page. It's when something like this festers and become your entire psychology that it is dangerous and decidedly unproductive.It is normal to feel some self-pity at times. Who woulda thought that special needs parents are actually human :)

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  7. Thank you for writing so honestly about this. It's funny how the little things can bring our self-pity and grief barreling down on us. I once had an absolute melt-down because I saw a Facebook photo of someone hiking with their baby while mine was (once again) in the hospital. I don't think we can be healthy and emotionally well without these low times. We have to wallow. It's a way to acknowledge our reality, to say "yes, this stinks sometimes." I don't know about you, but I can't be happy and I can't be accepting of our new normal without allowing myself to freely have the blues from time to time. Without guilt, without judging myself, or seeing my behavior as selfish. We kind of feel like these things happened to our kids-- and they did-- but becoming a special needs family happens to everyone in the home and we all deserve to shake our fists at the universe from time to time.

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    1. Yes, that's exactly how I feel—I'm OK with letting these feelings wash over me, and I don't make myself feel bad for having them. That took a long time to accept.

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  8. I commend you for your poignantly honest and beautifully written post. It's really ok to feel the way you do! I am no psychologist but having worked with many parents of kids with special needs, I actually think you are still grieving the loss of what would have been an easier life. Who wouldn't? Of course, you love your son! I have fits of grieving about a situation in my own family that is so very painful but will never go away. The most important thing is that no one can tell you how to feel. They are not you! No one should judge your feelings of loss. They are yours, not theirs. Of course, none of us want to get stuck in despair, but when the grief reoccurs we can accept the feelings and I think it is the healthiest thing to do. This "sitting in the pain" seems to help me to move on, with hope in my heart.

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  9. I think its really healthy to wallow every now and again. If you were upbeat and on top of the world all the time it wouldn't be real. I do it every now and again for a day or two then give myself a talking to and get over it. For a while...
    It's all part of the job and thanks for saying it out loud. X

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  10. I was in the midst of needing a good cry when I came across this post. Thank You. I'm trying a new approach with potty training my 7 year old son who has CP. My husband works long hours, so it's just me most of the time. I know he doesn't understand that I still "grieve" that life we were supposed to have. I still struggle with feelings of guilt-'What if there was something i did wrong to cause his premature birth'?(It doesn't matter that countless times i've been assured there wasn't) I still struggle. I envy. I'm angry. I have a good cry and then I pick myself up until the next time. I'm glad i'm not alone...

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  11. My moments tend to come in public gatherings when my girl is in a crowd of other tween girls.. and I do the one thing I shouldn't do...compare, or think about those other parents and how LUCKY they should feel and how they don't even appreciate the simple things.

    With Zoe's ability to verbalize her thoughts comes the good and bad.. the heartbreak coming when she says things like" I like learning things with you because I will need to know how to do this when I am a Mom." Or i want to have a car like this when I learn to drive.. and the good.. when she said "When you were gone it felt like a piece of my heart was gone.." okay, I am sure she heard that last one in a song, she is crazy for one direction and boy bands like that!" lol.

    I would guess that like me, crashing back into reality and being a little tired leaves you more vulnerable. I get caught up some times in pretty pictures, these days vacay pics on Facebook, where I sigh and think I wish it were that easy for us!

    right there with you!

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  12. I think all of us as special needs moms and dad feel that way at different times. last week for me was STILL buying baby food although joseph is 2 1/2 already :( what can ya do....gotta keep moving, doing what you can and so much more for them. at the end of the day i am his voice and he is my heart. -Genevie

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  13. I. So. Get. It.
    This was my facebook post on Sunday, after an unexpected trigger left me sad...

    Grief can be a funny thing. It can show up and punch you in the gut without much warning. I've bathed it, I'm going to feed it, (I would offer it some wine if I weren't home alone with my girl), and then I'm sending it on its way. Hopefully, it won't show its face around here again for a long while. ‪#‎Don‬'tLetTheDoorHitYa

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  14. I agree with the Anonymous who posted this (in part): If the neurotypical family I'm most acquainted with attempted a meal with any of those kabob variations, they'd have to order out for plain pizza (none of those gross green basil strips, and no vegetables!) or the kids wouldn't eat at all.

    I have a neurotypical family and while most of the time we "happily chow down," there have plenty of times --especially when the kids were younger -- when I've wracked my brain trying to think about what this one will eat, what that one will eat, and what I can eat (GERD issues). I think feeding a family is hard, period.

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    1. I'm afraid you don't get it. This really isn't about one meal. It's about everyday things, things most people don't notice, we (parents of special need children) see and have to deal with on a daily basis. Not only did we have to deal with them yesterday but we have to worry about them for all our tomorrow's. Are we complaining, NO!, just stating facts. Almost everyone, no matter the situation, has a pitty party every once in a while! It's a long and sometimes hard road, but oh so worth it!!!

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  15. Ellen....
    Interesting that you would be posting this right now. Because I just overcame a cosmic mood swing-infused pity party {Which persisted for one and a half weeks. I fought it until eventually becoming defeated.} All because I am learning disabled and different. However. What I have learned is that even though I fall hard, and these mood swing-infused pity parties put me through an emotional hell, they are healthy. How so? Because every time, I gain a little perspective, growing and learning along the way....
    --Raelyn

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  16. We all have our moments. And you are right, it's ok.

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  17. Thank you so much for this post. I love our life but there are moments (often triggered by a picture or seeing another family) when I just want to cry and be upset. And it is okay to cry. And I was just reminded of this last night when on the way home from one of Kyle's therapies, his younger sister (age 6) couldn't hold the tears in any longer and just wished that her brother could play with her, like other siblings do. My husband and I knew exactly how she felt and knew that at that time, she didn't need us to talk or tell her to look at the bright side or to think positively...she just needed a good cry.

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  18. I always hate when I sink into self pity, but it's always nice to know that I'm not alone. We can't keep it together ALL the time and there is nothing wrong with that.

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  19. I love this post. I'm a true believer in admitting to the (sorry can't think of a better word) icky feelings so you can let them go. If we're guilted into saying, "no, I never feel pity", then we (or at least I) am not being honest. The more we talk about it, the more the stigma goes away. Thanks for being a well heard voice in the conversation, Ellen.

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  20. As a grandmother of a wonderful special needs little girl, I too get the pity party blues but not so much for me - for my son and his wife and my other granddaughter who is not special needs. I ache for them and the emotional and financial stress they are under and that I will not be able to help my boy with his journey for much longer. I do the best I can and like the above commenter said, "I am his voice, he is my heart..." I told my son and daughter in law, "the squeaky wheel gets the grease, and you must be her squeaky wheel..." This is a wonderful post for families that those who read it all understand - thank you.

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  21. Hi -- maybe the word we need isn't "pity?" Which has such negative connotations. Maybe "I was being human?"

    Just yesterday at the cottage D and I were playing cards and I couldn't help getting stuck on thoughts that Ben would never be able to play this game (understand the rules and the mental math involved). Of course I asked D if he had considered this and he said "of course not. I'm not morose. He'll do something else." I think the longing for normalcy is natural, but I think some of us by nature get more trapped in these really useless thoughts that go nowhere and make us feel so terrible. I think being gentle with ourselves when we feel this way is important -- and maybe some people have practical strategies for how they stop themselves from going too far down the road?

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    1. As usual, you are right on the money. Oh, and board games have made me think that, too. For me, articulating the thoughts out loud with Dave helps. So does hugging Max, because the physical connection (and maybe those endorphins!) bring me back to reality, in a good way. It's hard to be sad in the face of his happiness.

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  22. I've been suffering from a pretty huge dose of this lately. So thank you for being honest about your moments of self pity. I sure wish I lived nearby. I'd love to have coffee or tea or a diet pepsi with you, Ellen. Your posts always seem to speak to my heart. Thank you.

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  23. I think all special needs parents go through this in the beginning and then with time these moments become fewer and farther between. I definitely struggled with this initially until I realized that "pity" is the most unhelpful emotion and I wanted everything that I do to benefit my child and with that thought I rarely go there anymore. So glad to read that it's a rarity for you! Awesome post though... I think more people should write about the good and the bad because that's real life!:)

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  24. Oh my gosh, Ellen, I can't tell you how much I needed this. Ya know, the thing I think I love most about reading posts written by fellow special need bloggers' is that you guys always somehow manage to legitimize the very feelings I have. Like, I didn't even know this was a normal, acceptable feeling, until I read your post.

    We're going to be heading back to the states next month, and we're looking to buy, possibly build, a house. And do you know what I find myself feeling? Self-pity. I feel bad because I can't get the two-story home I've dreamed about my whole life. I'm sad because I won't get to wrap garland and lights around a beautiful staircase, or put a tree at the top of that staircase, at Christmastime. We could technically buy/build a two-story house and install a chair lift, but my husband and I have agreed that, since we have a choice, it would be best for Liam if he didn't even have to deal with a chair lift.

    I know, I know. I know what you're thinking: Is this chick REALLY complaining about having to buy, possibly build, a new house?! Really?! I know I sound like a spoiled brat. I know that other parents would give ANYTHING to have the ability to build a brand new, ADA compliant home for their child with Spina Bifida. I know how fortunate we are. I KNOW this. And yet...I still find myself somehow mourning the loss of my dream two-story home. But, ya know what? That's okay. I'm gonna let myself feel it, and then I'm simply going to turn the (metaphorical) page. :)

    Thank you so much for this post.

    Brigid
    thepinkrollercoaster.com

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  25. Most days i feel like i'm in this alone .My son was diagnosed around the same time my father died in car accident ,my mom was with him she was badly injured i could't even say good bye to my father because it happened in my native country .
    i felt lost ,i fought even though i knew ...i knew well before his doctor said anything i knew it was autism
    i have a loving husband who can't handle any discussion about autism he thinks our son is going to outgrow all this ....It feels good to know i'm not alone.Thank you

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Thanks for sharing!



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