One of my "net" friends posted this on a hypotonia board I frequent. I think its really a truly wonderful piece of writing on how we in the SN community deal with "open ended grief"

Grief by Heather Schichtel

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?”
“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 is too short and despite the bad things that can happen... life is too sweet.


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