Losing a Child to Sarcoma – guest post

Many times our posts are reports, other times they are meditations. Rarely do we bloggers feel competent enough to offer advice.  Erin de Sousa offers us a beautiful post today.  It comes from wisdom borne of pain and loss.  Erin is in her fourth year of blogging even though she lost her daughter two years ago.  She is one of that group of survivors that continues to contribute to the community even after the battle has ended.

She writes at MAURA. Now what do I call this blog? “This blog used to be called “Maura vs.Toby”.”Toby” was a four-pound Unclassified Sarcoma that surgeons removed from Maura’s abdomen in April, 2008. She died on May 19, 2009. Toby’s evil spawn may have killed her body, but Maura lives on. The tumors, on the other hand, were incinerated. They are gone. And she is in pain no more.”

If you would like, you can make a donation to M.D. Anderson in Maura’s name.

Dear Friend,

First, never ever ever apologize for writing to me. You are right: I DO get it. I’m one of the few people you know who truly gets it. I reached out to you last fall because I knew you needed someone like me and, frankly, I need you, too.  It’s true that I’ve lived this longer than you have, but so what? My support group leader has been living this new reality for seven years, and she still needs someone like me, too. Just like I need her. And, btw, she is very emotionally healthy now.
And, someday, you will, unfortunately, have the opportunity to be there for someone else who will join “the wretched club.” It will be a tremendous blessing to you.

I know I’ve said this to you before: everything you are feeling , I have felt (feel still, sometimes or lots of times): the devastating loss, the agonizing , hard-to-breathe heartbreak, the absolute hopelessness and searing pain. Agghh! It’s horrible and awful and so incredibly hard to think it could ever get easier.

Forget the idea of moving forward. I think it’s a bad phrase because we don’t EVER want to move forward if that means moving AWAY from our daughters. So, leave that phrase to the blessedly ignorant. I haven’t come up with a great substitute phrase, but it needs to be one that doesn’t involve going away, although I like the whole journey imagery. Maybe think of it as adjusting, learning to live in your new reality. I’m still working on the perfect sentence. When I find it, let’s market it and make a fortune!

Do not hide her pictures or nick knacks. Do not avoid her friends. Do not avoid talking about her. Do not forbid the mention of her name. That doesn’t mean that you can’t postpone talking about her if it makes you uncomfortable. Some people you can cry in front of, others, not so much. And some days you don’t feel like you can handle the tears, so it’s okay to avoid and postpone.  Example: Lydia brought me the DVD of the play that she wrote and performed about Maura. I did not watch it while she was in town, nor did I watch it with Joel or Danielle. I watched it by myself just this Sunday. I thought I might prefer to cry by myself, without having anyone check on me or worry about me. And I knew that I might want to wail a bit; yes, wail…loudly. So, I just needed to be alone.

I’m not trained, so I don’t want to say yes or no to you being clinically depressed. Please consult a qualified physician.

But, regular depressed? Heck, yeah. It’s called “sadness.”  You are very, very sad. And it’s normal. It’s an emotion that God invented. And deep sadness proves that we have loved deeply.
I think that after a year you might be able to look back and see that the pain has shifted to where it’s not right on top of your heart so much.
I know you don’t want to feel the pain, and I can promise that it will get better. It will get better. It will get better.
Here is my prescription:
Go out, even when you don’t feel like it.
Don’t expect to feel better when you do. You might, but  probably not.
Go grocery shopping, even if you just push the cart.
Walk around the block.
Put gas in the car.
Go to your daughter’s house.
Go out to lunch.
Go to church, but sit in the back.
Rake a few leaves…not many…in the front yard.
The trick is to push yourself to go out, but not to have any expectations of feeling any better.
The triumph is simply to get out of the house and within 10-50 feet of another human being not closely related to you.
Eventually, you’ll get stronger, but you won’t notice it for a long time.

The what-ifs can be devastating. It’s hard not to fall into that trap. Every time I start to wonder about her medical treatment, Joel reminds me, “No more pain.” he’s right. Anything else would have prolonged her suffering. God didn’t need one more radical treatment to cure her. He could have done so on Day 1. Or Day 301. That brings up another source of pain: why didn’t He? I honestly don’t have an answer for that, or, better said, I don’t have an answer that is good enough. None of the answers I’ve come up with, or the ones that others have kindly bestowed upon me are good enough. Duh. Because nothing I can imagine can justify God not wanting my daughter to live here on this earth with me. Nothing. And I fruitlessly keep trying to imagine what could. That’s where faith really helps. Or is it hope? Or both. In either case, most of the time, I’m okay with waiting until Eternity to find out the answer. I suppose by that time, it won’t matter anymore. (Hope involves waiting…that’s always easier to understand in Spanish and Portuguese since the two words are one and the same)

And remember that happiness and sadness co-exist.

from: MAURA. Now what do I call this blog?


About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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