Odilon Redon - Le Silence
I've been walking around in a daze, it seems like, for days.
Days of daze.
After my post with all the free f words, I felt sort of bad. I wondered if my father had read it and whether he hated it. I wondered whether the lady who is going to interview me next week for a job read it and if so,
whether she thought I was not the sort for the job. I wondered whether I had gotten too upset about the insurance company not having any sense of urgency but doing what I think is systematic obfuscation. I wondered whether I have just had enough of all this and my tolerance has completely disappeared.
A well-meaning friend mentioned another friend whose daughter is on the autism spectrum. That child is hard, my friend said about the other friend's daughter. I mean, I know Sophie is hard, it's all hard, but at least she can't move around a lot. Then she mentioned that our friend, the mother of the child, always has a smile on her face. Now, I've spoken to this woman many times because she's dear to me, and she doesn't always have a smile in her voice. She has lots of despair and many tears -- perhaps less and fewer than I, though, so that comment stuck to me pretty much all day.
She always has a smile on her face.
I know my readers and I know that many of you are jumping to my defense right about now. I didn't spend much time chastising myself for not having a smile on my face very often, especially of late. I thought about the toll caring for Sophie has taken on me. I'm not sure when the tipping really happened -- perhaps around year ten? That other child is not eight years old, yet, so technically Sophie is twice her age. That's twice as many years of dealing. The smile, I admit, is rarer. I'm not sure why I feel pressure, the tiniest bit, I guess to be
stronger
more cheerful
less complaining
more tolerant
more accepting
but I do.
Days of daze. A daze of days.
Daze means both to stupefy (verb) and to be blinded by light.
We are all well-meaning, however misguided, when it comes to coaching others on how to feel or think. Bottom line: none of us are walking in your shoes.
ReplyDeleteYou are not obligated to feel what others suggest you SHOULD feel; keep sending out poignant and heart-rending dispatches that tell us what you DO feel. Your readers, acquaintances or intimates, will decide how to respond from there. A Hail Mary burst from my lips the instant I read your plaintive message about Sophie this week. There are many, many ways of knowing and feeling, and also of supporting. I wish you the benefit of all of them.
Mary
I love my daughter to bits and she ground me down to the ground with her needs. There were many nights that I just cried because I didn't know how I could get up and do it again the next day. Every day was hard.
ReplyDeleteWhat I hated most was people who said, I don't know how you do it. It's not like you have a choice!
I know how you feel and you're not alone. Sending a hug.
I've given up blogging again, my effing husband found my blog, again, but I'm going to keep on reading.
Always having a smile on ones face os not honest.
ReplyDeleteSometimes the tears speak louder than the smiles. I woke in pain at 2 am last night and thought of you, and Sophie. And prayed.
ReplyDeleteI feel quite stuck in a culture where smiling faces are vastly overrated. .... and "at least she can't move around a lot" is such a weird thing to say. I'm sorry.
ReplyDeleteI have to be honest, who cares about others' smiles? the problems I have with my health are vastly different than those Sophie has, yet like you I am tired of dealing with this issue day in and day out. Exhausted, spent, bone tired of the effort that I don't know how to keep going. And no, I don't feel like smiling even when it doesn't hurt. You have a healthy psyche. You don't allow those things that fester and infect when left inside, suppressed and ignored be another reason for further stress. You deal with them, and get them out of your life until the next time. You don't cling on to them to perfect a very effective path of self-victimization. I for one welcome your honesty but you already know that. This is your blog, write away and toss back to the Universe what you can. There is no reason for you to edit or to censure yourself. That is dishonest and cowardly.
ReplyDeleteAnd when I feel through your words the despair of dealing with insensitive systems bound and determined to dehumanized the process, it is more than rage what I feel. It is also encouragement to keep on fighting them until no one needs to beg for a human right to medical attention.
Any news yet about the bed?
As I sat in tears this morning,with my tiny 3 year old daughter placed between my legs,trying desperately to get even the tiniest of spoon fulls into her mouth,as she clenched her teeth and batted the spoon away,and spit it out,I could not muster even the faintest of smiles.When she signed "cry".I cried harder.
ReplyDeleteThank you for sharing your joys and most especially your sadness,so unselfishly with us.Eases our own journeys a bit,knowing we are not alone.
Here is what I have learned and am still learning - you must be true to the emotion because that is all that is truly real. I am an over-intellectualizer and that has worked against me from time to time. And I certainly know that my thoughts are not true all the time! So, let the emotions speak, you need not cover them. Yes, have your boundaries and appropriate places for the emotions to speak, but please don't cover them with a smile (no matter how pretty!).
ReplyDeletethe comments above are perfect.
ReplyDeleteas are your emotions, because they are yours.
you honour ours when you share with always the right amount of honesty , class, and pure love.
I really really hope that in some tiny way myself and the other like me here can be a small relief from a world that wants a smile on your face- much less all the time. You know what I want when I come here? YOU.
ReplyDeletexoxp
i meant 'OTHERS like me'
ReplyDeleteM - Thank you so much.
ReplyDeleteDeb - I'm sorry to hear that your blogging efforts are continually stymied. I hope you are well!
Carrie - Some people do it well.
Leslie - I am sorry to hear of your pain but so appreciate the thoughts.
Kimmie - The "things people say" has always struck me -- I think it's the writer in me that notes them...
Allegra - What can I say to your never-ending support other than I wish we lived closer to one another.
Heather - I'm sorry for your struggles, sorry for all of our struggles. Love to you as you struggle --
Lovelyworld - I'm a bit of an over-intellectualizer as well -- in fact, I think I "over" just about everything!
Deb - Thank you.
Maggie - Thank you.
I'm sorry but some people can kiss my ass.
ReplyDeleteYou get up every morning! You put one foot in front of the other and you fight for your daughter!
You are honest and you are amazing.
That's all I have to say about THAT!
Hey, thought I would come visit because I liked the name of your blog.
ReplyDeleteI don't like the word 'should'
Life is too short ro fret over what is/isn't said when and where. If you feel like crap, and don't want to smile... so be it. There are no rules... except the stupid ones insurance companies write.
Good luck.
ro=to
ReplyDeleteOne day I may just learn to check my comments, before I post... not afterwards...
Dear One,
ReplyDeleteThe comments written already are so wise and loving I feel I have nothing original or helpful to add. So I am going to be happy with: ditto!
You amaze me every time I read your blog. You seem to be among the healthiest minded people I'm aware of. If you were to "smile" when dealing with those insurance policies, I am afraid that the terrible contrast between reality and what your experience is would break your face.
It has been said, "What others think of you is none of your business..." which I find to be an interesting concept. Your life is your work, no one else's.
And I love you.
I think this expectation to smile under all circumstances is cultural. I think the more "western" a society, the more its members are expected to have control over their emotions (especially the negative unpleasant ones that make others feel awkward) and have a flawless public facade. In some cultures it is absolutely acceptable to wail loudly and openly when experiencing grief.
ReplyDeleteI remember when we found out about Izzy's diagnosis, the doctor kept smiling reassuringly while explaining the prognosis of her disability. If I didn't have a filter between my mind and mouth, I would have asked him why the heck he was smiling when my dreams are being shattered in the background.
I don't see why anybody should expect you to smile while you are helplessly watching your daughter having seizures or stressing about her condition. One of the things I love about you is that you are honest and genuine and your posts are full of heart.
There are moments when I have been DONE too. And you have 10x10x10 of what I've ever had. And I've felt like a not good enough mom because maybe the DONENESS indicated a shortage of mama-love on my part.
ReplyDeleteBut now I know that life is hard and I have a never ending supply of mama-love. As do you.
Sometimes life just sucks the big one and sucks our energy.
So, yeah. What Ms. Moon said.
xoxoxo
I'm just going to say that you are absolutely wonderful and perfect, in your own way, just as you are. If I get started saying more, I am sure I'll say too much. xoxoxo
ReplyDeleteAs someone who actually does see you in person, I would say that you have a smile on your face as often as pretty much everybody else. And I think that's fairly amazing, considering the extra stress you are under on a daily basis, and have been for so long. So don't be hard on yourself.
ReplyDeleteThis did not leave me smiling. I'm sure those were well meaning words of encouragement, but she missed, terribly. And that hurts more than one who says nothing.
ReplyDeleteYou don't have to smile for me and if someone doesn't hire you becaue of an honest blogpost, you would never be happy working for that person.
And if you're not happy, how will you S M I L E?
That comment from your friend made me very sad. Because she obviously very much misread the mom she was talking about.
ReplyDeleteIt sounds like you have a much truer picture of the mom's emotions.
xo
I honestly take my hat of for you. Maybe I would have been different given your circumstances, maybe having a special care child would have made me think more and act less. It is impossible to know, but in my normal life, where I have ever so much to be thankful for, I am not the calmest person. Mind you, I never had any role models in this regard and where I am at is so much better than where I was 10 or even 5 years ago, and learning to cope with my temper has all been a self-teaching experience.
ReplyDeleteRegardless, I am in awe that it took you that long to throw a hissy fit. Which is also sometimes perhaps needed, but which we always feel bad about afterward. I know the feeling of guilt that can come after such a temper tantrum. Try seeing it as a learning experience, or a much needed blowing of steam. Steam that might've scalded your children or other loved ones if you had kept it inside much longer. You let it out in a post, not at an actual person. Your safe in blogville even if you sometimes forget to wear your smile.
We always do the best we can given our information, experience and beliefs in any given moment. Don't berate yourself.
For all that you know, maybe the insurance company read your post and realised that they needed to do something asap before they get super-duper bad publicity and your post actually got your daughter the much needed treatment.
Maybe. Maybe not. Who's to say in a world filled with variables. What I know for sure is that one day I would like to say that for x amount of years I have always worn a smile on my face...
As the recipient yesterday of a comment about my son that was not meant to hurt me but did, I certainly take issue with the "can't move around a lot" qualification. *sigh* Thinking of you, sending love.
ReplyDelete