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Our kids have all kinds of special needs, mild to severe. Some of us grieve the loss of our children. We do the very best we can, which often takes a toll on us. We come here to share our feelings with other parents who understand. We're searching for every parent of a child with special needs. Welcome!

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Tuesday
Feb022010

Grief

I sit on the park bench eating cheesy popcorn and watching young children on the playground. I am enjoying the day, the sun on my face, and the smell of fresh grass.

Randomly I think, I wish Samantha could run and play with these kiddos.

And there it is, the cold hand in my cheesy popcorn; the presence taking up too much space on the park bench, blocking my sunshine. My Grief….

“Really?” I say. “I didn’t invite you. Get your hand out of my cheesy corn.” Instead, I end up having to scoot over, making more room for my Grief.

Grief comes and goes when I least expect it.  I’ll be in my car, driving along listening to music and I’ll catch it in the corner of my eye, kicking the back of my seat.

“Hey Heather.”

“Aww crap, what are you doing here?”

“It’s been a while. I thought I would stop in for a visit.”

“Well, make sure you fasten your seatbelt and be quiet. Samantha’s sleeping and I don’t want you to wake her up.”

“Can I change the station?”

“No.”

“Can I play with the window?”

“No, you can just come along for the ride.”

 So we go on the ride together; fingernails thumping on the dashboard as a reminder of who decided to show up today. Yes, I am quite aware of your presence, you don’t need to remind me.

Grief’s appearance used to rattle me, send me into the bathroom, crying hysterically. Render me worthless for a day. Sometimes it still does but as Grief has been established as a consistent visitor in our household, we have drawn up a contract. We have an agreement.

As the mom of Samantha, a child who does not walk or talk, a child who is suffering from a mitochondrial disease, I will grieve. I will grieve for many dreams that will not come to fruition. I will grieve for a life I thought would be different.

I will grieve at times. And I will not grieve at times. I will laugh at times. I will not laugh at times.

Grief can come into our house but is not allowed to stay. If allowed to stay, it would devour the corners of our house. It would suck up the oxygen in the room. It would consume me.

And that is not acceptable.

Grief tends to run within the Special Needs community. I bump into him quite often.

How are you?

My daughter had pneumonia. She is in the hospital on a ventilator.

I look around and see Grief, sitting on the couch, smugly picking at dirty fingernails.

And I meet those who sadly keep very, very close company with this unwanted guest. Grief hangs over them like a shroud. It is hard to laugh. It is hard to love. Because in copious amounts Grief tends to ooze; like a nasty septic wound…draining life from us.

But we still have to laugh, we still have to play, we still have to live….life carries on…

….and on

....and on….

I cannot, at the end of my life say….well, it was long, hard and I was sad.

Surprisingly, our relationship is not based entirely on conflict. My interactions with Grief have allowed me to see myself entirely raw, unprotected, and exposed. At times I feel that I have lost my skin…..yes, here I am. Be careful, that’s my beating heart you see there. Oh no, no, do not touch.

I am no longer afraid to approach others regarding their own tragedies. I bring up the tough conversations. How is your mother? I am sorry for your loss. I am so sorry your daughter is in the hospital.  I hug, I cry, I listen. Not because I am an uber-sensitive but because I know Grief sometimes travels alone except when he travels with his favorites… Isolation and Loneliness.

Sometimes Grief shows up at a party…..drinks my wine, eats my last bite of fudgy dessert. It’s an annoyance really but since Grief is not a constant life guest, I have learned to tolerate the time we spend together. Sometimes we even enjoy an introspective moment or two.

We have set the rules and sometimes they are followed. We cannot have a permanent impy, uninvited, grievous house guest...we don't have the room...not in our lives, not in my heart...life is too short and despite the bad things that can happen... life is too sweet.

Reader Comments (10)

Oh, thank you for that well written post! I find grief visiting me at unexpected times. In fact I think he was following me around today and I didn't notice him sitting in the corner.....Oh, how I wish he would call first. I think I will put the link to your post on my daughter's blog today. - Ainsley's Mom http://ainsleyrae.blogspot.com/

February 2, 2010 | Unregistered CommenterAinsley's Mom

Breathtaking, literally. I know this grief of which you write. We have a similar relationship. I've always wondered where it went when it left my home. Apparently, it likes to hang out at the park and eat cheesy popcorn, too.

February 2, 2010 | Unregistered CommenterNiksmom

So that is who keeps moving my stuff!

I am also posting this on my blog as a favorite. Your post really articulates the presence of grief in my everyday life. Beautiful and True.

Pia
http://jonathansvoice.blogspot.com

February 2, 2010 | Unregistered CommenterPia

I bumped into grief last week. When I wasn't looking he stole some more of my daughter's hearing. From her good ear, gosh darn him. I wish he had had just told me he wanted cheesy popcorn, I would have gotten him a truckload

February 2, 2010 | Unregistered CommenterSheri

Beautiful post. I like the idea of getting used to "talking" to our grief as in "oh, it's you again." We need that comfort level to know it won't consume us. Thanks!

February 3, 2010 | Unregistered CommenterLouise Kinross

Thanks! Really--thanks!

February 5, 2010 | Unregistered CommenterKirsten

Nice. I have been accused of being "accepting" of our daughter's differences as though it's a bad thing that others cannot relate to, as though there is no sadness at all for me ever. But it's this understanding with despair as a temporary and occasional guest that makes the good come into clearer focus for me.

Very nicely articulated.

February 7, 2010 | Registered CommenterInsideout510

Beautiful Absolutely beautiful.

February 25, 2010 | Unregistered CommenterJoanne

This really resonated with me. Thank you for putting very difficult sentiments so eloquently into words. THANK YOU.

February 23, 2011 | Unregistered CommenterRosana Shah

I jus t read your post about Grief. I don’t have any kids with special needs, losing hearing or anything like that.
I'm writing you today because Grief is no different, it does not care about the person or even the circumstance. It is lonely and lost. It finds me in times when I don't expect it to. I find that Grief is the rain on a sunny day, the feeling I get when I remember the loss of a LOVED one.
Its visits are important, serial and poignant.
It reminds me that I am alive when things are dying or transforming around me. It could be faces, feelings or even thoughts of "Once Upon Time".
Sometimes I find it as comforting as my teddy bear; it allows me to do just that Grieve.
I've lost two of my Best Friends in the last 2 weeks. Both died, one of a heart attack and the other one was killed.

Sometimes I hear a knock at the front door. I hesitantly go and find Grief waiting for me. I don't let it in... I try not to let it in... I even hold my breathe until it leaves..... but to no avail, I let it in.
I think that God has a place for Grief, I know that it is not perminate. He (Grief) is a traveler
a visitor of sorts. I don't hold back. I release and let go, knowing that I am held in its arms till I am ready to go forward. It’s a warm hug on an awful, rainy day.
Then a Grief smile gets up and leaves.
I am back to the "New" and improved me. I love my 2 friend. I miss them everyday there not here and I know that it is time to move forward knowing that they are there working to change the world.
I Know that I am being held in the hands, the hands that creates, loves and see's everything about you and me.
And you wonder why you’re taken care of.
For me and Grief we have said enough.
I find it quite exciting. I Googled My friends name "Joey" and found this wonderful blog. Thank you for letting me release the grief I have inside. It may not be the same situations and to me Grief is Grief anyway you look at it.
I’m reminded from The Divine that nothing is lost, torn away. It has a purpose, that is to carry us over the rough parts of life with love and compassion.
So thank you Grief, thank you for showing up to take care of me.
Now its time for you to go. We have all had enough.
Till next time.

April 24, 2011 | Unregistered CommenterChristopher Steele

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