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Experiencing Grief

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While I would never characterize my life as simple or easy (HAAAAAA!), I have been incredibly lucky in one very specific way: I have not yet, as an adult, experienced the loss of someone to whom I was very close. So in some ways, I feel I'm something of a stranger to grief.

The closest I'd come until fairly recently was the grief of losing my first marriage, and my hopes/dreams/plans associated therein. It's not the same, of course, but it followed a similar trajectory and kind of came out of nowhere to bite me on multiple occasions when I "should've" been well past mourning. The up side is that time, therapy, and then a much healthier marriage have largely resolved my associated issues and pain. (Remind me to bake my wonderful husband some cookies. He is awfully swell.)

And now I'm struggling and grieving, and I feel like I just don't know how to do it, how to get through it, how not to throw down the rest of my life and stomp and cry "It's not fair!" But nobody died, which means that outsiders don't necessarily understand. So I keep living and writing and shopping for groceries and paying the bills and trying to pretend I am not grieving every day, every hour.

Yesterday I wrote a post for Work It, Mom! that generated a lot of discussion, and a fair number of people saying, "No, I don't agree with you," and I was back there in comments, reading, listening, responding, and feeling sort of like, "YES, this is a conversation worth having." My head was COMPLETELY in my work and it felt great.

And then the phone rang, and it was the school. It was Monkey's parapro. "Mir, don't panic," she started out. "But we can't find Monkey. He got really angry with me and ran off."

I couldn't even process what she was telling me, exactly. How do you lose a 5th grader in a school that isn't even all that big? The follow-on made it a bit clearer: There had been "an incident" in class, he'd melted down, he ran to the guidance counselor's office (his "safe haven" in times of stress), she wasn't there, he took off around the corner ... and by the time the parapro caught up, he was gone. Just gone.

She called because they thought he might have left the school and headed home. They had mobilized in the building, of course, and were searching there. As she filled me in and I pulled on my shoes and prepared to rush out, all I could think was that if he was angry and impulsive enough to run out of the school, there was no way he was going to stop and look both ways anywhere he had to cross the street. Which meant I might well be running out to scrape him off the pavement.

I was about to hang up and go when I heard shouting on the other end of the line. And then I heard a giant EXHALE from the parapro. "We have him," she said. "He's okay. It's okay. Let me call you back in a few minutes." I agreed. I put the phone back on its base and sat down at my desk.

I couldn't stop shaking.

Later, I got the rest of the story. He hadn't bolted, not really -- he went where he was supposed to be, next, but the parapro had forgotten he had a special activity, and then the teachers who were supposed to be there were a little late. No biggie, not really. Monkey was surprised by all the fuss. He was very apologetic.

When he got home yesterday afternoon and I tried to talk to him about it, he started screaming at me and crying that no one understands him. I bit back and said, "Oh, honey, that's not true!" Because it sort of is true. I opted to pull him onto my lap and give him a giant hug and tell him we could talk about it more later, but that right now he just needed to know that I love him so much.

Last year, when he was finally diagnosed, we were in a dark time, here. Monkey was in The Pit. (You know The Pit. It's not that you can't see the light waaaaay up above you, it's just that you have no possible way

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Barbarahughes 134 pts

I think grief over a marriage is real grief. I wish you blessings in that, Barbara

loraleechoate 7 pts

Grief doesn't have to be death.

Some of the most painful grief in my life has been the death of a dream and life I THOUGHT I would have.

Mourning that loss.

(Ask me how well I was when I saw yet another penis on the ultrasound with my youngest after having 3 boys. I adore my little Butterlump. ADORE. WORSHIP.LOVE. But I was in serious, painful mourning for the daughter it looks like I will never have.)

And the thing that truly sucks about THIS kind of grief? (And I relate here. Differently, but I relate.)

It will age with your son.

And you.

Because his milestones and life events won't be how you thought they would be.

It will make an appearance from time to time and that is normal and ok.

Grief is like that long-time friend you know you can't break ties with but that you also can't put up with any of their crap or they will end up mowing over your boundaries and borrowing your power tools from your shed without permission.

Acknowledge it and like any friend you can speak bluntly too, tell it when to get the hell out of your house and go home already. ;)

xoxoxoxoxoxxo

Thedomesticgoddess 6 pts

I'm one of those lucky ones that has two kids, both autistic, opposite sides of the spectrum. One is quite like your Monkey (gosh your stories resonate) and the other is pretty darn profoundly autistic. People constantly compliment me on how well I handle it, how great I am, how strong I am. But they just don't see how much I grieve. Some days, like you, there's only so much I can do.

It hurts, sometimes it sucks and sometimes I wouldn't have it any other way.

Domestic Engineer, Total Babe and SAHM
www.thedomesticgoddess.wordpress.com ( http://www.thedomesticgoddess.wordpress.com )

denverlori 5 pts

beautiful blog. my heart empathizes with you! advocating for your child is one of the most difficult and sometimes most rewarding jobs in the world. i have a 2e 13 year old and I can tell you middle school was a godsend for us. i hope today is a good day for you and your guy!

Lori
www.denverlori.wordpress.com ( http://www.denverlori.wordpress.com )

difbutdeterm 12 pts

I have experienced the loss of close relatives and the grief of the loss of the life I wanted for my child. They are very similar. At least to me they are anyway but everyone grieves differently so some might not agree with that.

I can completely see and understand how hard this must be for you. All anyone can do is allow themselves to feel their feelings full force and just let the process take it's time to resolve.

I wish you all the best of luck coming to terms with this new life. And thank you for sharing your feelings and story.

Jen shares her life of special needs with a special needs child at Different But determined ( http://differentbutdetermined.com/ ).

wantapeanut 8 pts

Beautiful post. My son, only 3, was diagnosed with autism as well. I've spent much of this past year grieving the loss of the child, family life, marriage and future we're not going to have. It is especially hard because I have a much harder time accepting this than my husband.

But I also have the perspective of having lost my brother to cancer, so I am thankful for my son's health, that we got a diagnosis so young and that we are able to work to help him have a great life. After all, our kids are probably never who we expect they are going to be, typical or not.

Kathryn W. 5 pts

I don't know much about having a child with autism. To be honest, I am not a mother yet, so I don't know much about having a child at all. I do, however, know a thing or two about grief (too many long stories). I think just by writing this article and expressing your feelings that you are handling it beautifully. By just doing chores, packing lunches, etc to keep your mind busy and focused on something else, you are helping yourself cope. Remember, though, every now and then, it is okay to allow yourself some alone time to cry or scream, or do whatever you need to do to just "let it out" (I like to blog, but it also helps me to have a good cry on occasion).

Also, I just want to say that I admire your strength.

----------------------------

The Soap Box ( http://www.blogher.com/andthatsmysoapbox.blogspot.com )

kyranp 6 pts

I'll be sharing this one. What a moving piece of writing.

Kyran, Notes to Self ( http://www.notestoself.us )

SueW 7 pts

I have a different situation, but you said all this so well. I think there are days where we just have to let the grief wash over us when it comes. And then there are amazing days, and we take those for what they are too.

I keep thinking of the It Gets Better Project that has been in the news these past weeks. Middle school is so hard for even the most typical kid, but mostly it really does get better. I wish sometimes I could get just a little glimpse of my special needs kid as an adult - just to know that the story turns out ok.

Hott Mama 6 pts

My knees shook as I read about the incident at school. So thankful that the day ended alright.
I understand how you grief for your son, missing how different his life could have been. My husband was diagnosed with early onset Parkinson's Disease at 50. We have 4 children of which two were only 4 and 3 years old... boys!
I miss lots of things; him coaching soccer, wrestling, dancing with our girls... or me! Life has changed. Sometimes, I think it just sucks!
Then I remember what Michael J Fox said about living with PD. He never asks God to take away his disease; just for bigger sholders to carry it.
We live each day celebrating our health right now and do as much as we can today; because the fact is that he probably won't dance at our daughter's wedding or play football with our sons.
So, yeah... I understand your grief. Hang in there! It is hard... and sometimes it just plain sucks.
love, a
here's where I process it all:
www.excusemecanitellyousomething.blogspot.com ( http://www.excusemecanitellyousomething.blogspot.com )

Cougel 5 pts

Cougel

I don't have a child yet, and while I can't relate (although I can understand the pain), I CAN relate to the grief associated with the death of one's first marriage. I was married 14 yrs to the my college boyfriend and it still surprises me how painful it was, and can still sometimes be (especially compared to other divorces I know who seem to have weathered it more easily). He appears in my dreams like my deceased grandmother does. I think that the "death" of any hopes we had for something, the stark finality of a certain path or picture we had of our future, is legitimately "grievable."
Great post.

kgirl 6 pts

reading this. My friend's 5yo daughter was just (like, yesterday) given a preliminary diagnosis of Asperger's. You've given me a little bit of insight as to how their future may look. The only thing I'm glad of is that her, and your, child has such wonderful advocates.

Karen authors the blog, The Kids Are Alright ( http://kidsarealrightto.blogspot.com/ )

mcwhclan 5 pts

Thanks for sharing this story. I am a parent of a child with ODD and I work with families with kids with ASD and other special needs.

I have often described the grief that goes along with this as coming and going like waves. That it can knock you off your feet at the least expected time.

Thanks

blogging about life stuff at http://mcwhclan.wordpress.com

j_gumieny 6 pts

Brilliant post... I for one have experienced more grief in my 32 years than I ever imagined I'd live through but with this grief has come light. I still don't know why my mom took her own life or why my brother tried to do the same but I do know that things are okay... Life has moved forward and we've adapted. You're son is so blessed to have you and your understanding... Our thoughts are with you!
Blessings.
j
www.gfinkfamily.blogspot.com ( http://www.gfinkfamily.blogspot.com )
Beneath the Acacia Tree

Joeymom 5 pts

OMG, I have been blogging about this and now am in the midst of a new wave, and just adore the last line. Because, seriously? The grief isn't welcome. The depression of having another phone call with another crisis? I'm too busy. It can just go away, thank you very much.