Nitty Gritty Dirty Grief

Free Range Tom

I like Thanksgiving

I like any holiday that involves food and gratitude.

Hello Thanksgiving.

I am hosting this year and tonight I found myself at the grocery store among the Butterballs, the Jennie-O’s and the Pilgrim’s Pride Turkeys. The advertisement on the outside wrapper said they have all been injected with buttery sauce to make them extra juicy. Personally, if I were a turkey, I do not want to find myself with 20 other turkeys, injected with buttery sauce.

I felt sad for my fellow turkeys.

“Do you have any free-range turkeys?” I asked the butcher.

“They’re over here. I think we might be sold out, oh here’s one. They are really expensive so we don’t order a lot.”

I looked at the last free-range Thomas; the $50 free-range Thomas. Hi s cousin was only $15.00 and injected with buttery sauce. His cousin was a bargain but I pictured Thomas on a free-range turkey farm, wearing turkey tevas and doing laps on the turkey track.

Perhaps Thomas was happy.

Silly thought, Thomas is a turkey, a domestic turkey, who perhaps does not care if he is a free range, teva-wearing turkey but these are things I want lately.

Because I can; we can afford a $50 organic, fed-on-organic-turkey-feed only- turkey. We are not paying for college or day care…..not anymore.

And in some little way, organic Thomas makes me happy so I put him in the cart.

I go through the grocery store with my list and find myself at the pharmacy filling a prescription. I know the pharmacist well she filled Samantha’s meds many times. When we could not find Samantha’s elite, non-generic seizure meds, this pharmacist called around the state to find what Samantha needed.

Tonight she greets me with a warm smile, fills my prescription quickly and asks me how I am. I smile back and tell her I am just fine.

I introduce her to Thomas, my organic turkey.

Ironically, I fill a sense of calm as I shop for Thanksgiving. I put together a bouquet of Fall flowers and I realize I don’t have my re-usable bags. I leave my cart to run to my car and get my bags.

Because I can; I have all the time in the world.

Hubby can wait for dinner. It is just us and he can wait while I run out to make sure our plastic bag collection doesn’t grow larger.

I load Thomas the organic turkey, my prescription and my reusable bags into the car and run my cart up to the young man collecting carts.

Because I can, I have all the time in the world.

There are certain times when I feel that she is right there.

As I start the car, the song If I Die Young starts to play. This song came out right about the time that we lost her. I feel a silent sense of protest every time it plays on the radio but something about the lyrics soothe me.

Lord make me a rainbow, I’ll shine down on my mother
She’ll know I’m safe with you when she stands under my colors
Oh, and life ain’t always what you think it ought to be, no
Ain’t even gray, but she buries her baby

A penny for my thoughts, oh no, I’ll sell ’em for a dollar
They’re worth so much more after I’m a goner
And maybe then you’ll hear the words I been singing
Funny, when you’re dead how people start listening

I go home, put Thomas in the fridge and have a slice of pie made by hubby’s co-worker:

“I am thankful to work with you,” says the card on the pie.

It is tasty pie.

Life is never what we think it will be but maybe if we notice the tiny places of gratitude; if we refuse to be injected with buttery sauce, we return our shopping carts to their proper places and recognize when the world is trying to reach out to us, Thanksgiving might be just be……Thankful.

Nitty Gritty Dirty Grief

Mexicoma

I fell off the face of the earth again.

This time more physically than mentally.

Hubby and I took a week in Mexico; our second big trip since we lost Samantha. This trip felt much more relaxed- not necessarily something that we had to do in order to move on without her but time that we needed to spend together, enjoy each other and just be.

It was good…just to be and to be with each other.

We recently attended a wedding where the best man said to the newlyweds, “if you decide not to have children, decide to become each other’s child.”

What an interesting thought; to take care of each other that deeply and wholeheartedly.

Sometimes it feels as if Hubby and I are dating again, getting to know each other without the expectations of what we thought would be our life, getting to know each other with our loss and getting to know each other as just each other.

It’s dating again with a deep understanding of who the other person is. Dating, while knowing that he will silently reach for my hand as we walk by a father playing with his daughter on the beach.

Knowing where the hurt is without saying it; covering up the boo-boo and sealing it with a kiss.

Perhaps at times we all need to be each other’s child.

PS- pics to come as soon as I clean the sand out of my bathing suit 🙂

Nitty Gritty Dirty Grief

Dragon Mom

I am cheating today. I am posting words that are not mine.

But Emily Rapp, in her ultimate wisdom, has posted what we all think and continue to think even after we have lost our child. This journey is and continues to be, the ultimate, tragic, love story.

Notes from a Dragon Mom:

Emily Rapp is the author of “Poster Child: A Memoir,” and a professor of creative writing at the Santa Fe University of Art and Design.

Santa Fe, N.M.

MY son, Ronan, looks at me and raises one eyebrow. His eyes are bright and focused. Ronan means “little seal” in Irish and it suits him.

I want to stop here, before the dreadful hitch: my son is 18 months old and will likely die before his third birthday. Ronan was born with Tay-Sachs, a rare genetic disorder. He is slowly regressing into a vegetative state. He’ll become paralyzed, experience seizures, lose all of his senses before he dies. There is no treatment and no cure.

How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

Depressing? Sure. But not without wisdom, not without a profound understanding of the human experience or without hard-won lessons, forged through grief and helplessness and deeply committed love about how to be not just a mother or a father but how to be human.

Parenting advice is, by its nature, future-directed. I know. I read all the parenting magazines. During my pregnancy, I devoured every parenting guide I could find. My husband and I thought about a lot of questions they raised: will breast-feeding enhance his brain function? Will music class improve his cognitive skills? Will the right preschool help him get into the right college? I made lists. I planned and plotted and hoped. Future, future, future.

We never thought about how we might parent a child for whom there is no future. The prenatal test I took for Tay-Sachs was negative; our genetic counselor didn’t think I needed the test, since I’m not Jewish and Tay-Sachs is thought to be a greater risk among Ashkenazi Jews. Being somewhat obsessive about such matters, I had it done anyway, twice. Both times the results were negative.

Our parenting plans, our lists, the advice I read before Ronan’s birth make little sense now. No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t.

All parents want their children to prosper, to matter. We enroll our children in music class or take them to Mommy and Me swim class because we hope they will manifest some fabulous talent that will set them — and therefore us, the proud parents — apart. Traditional parenting naturally presumes a future where the child outlives the parent and ideally becomes successful, perhaps even achieves something spectacular. Amy Chua’s “Battle Hymn of the Tiger Mother” is only the latest handbook for parents hoping to guide their children along this path. It’s animated by the idea that good, careful investments in your children will pay off in the form of happy endings, rich futures.

But I have abandoned the future, and with it any visions of Ronan’s scoring a perfect SAT or sprinting across a stage with a Harvard diploma in his hand. We’re not waiting for Ronan to make us proud. We don’t expect future returns on our investment. We’ve chucked the graphs of developmental milestones and we avoid parenting magazines at the pediatrician’s office. Ronan has given us a terrible freedom from expectations, a magical world where there are no goals, no prizes to win, no outcomes to monitor, discuss, compare.

But the day-to-day is often peaceful, even blissful. This was my day with my son: cuddling, feedings, naps. He can watch television if he wants to; he can have pudding and cheesecake for every meal. We are a very permissive household. We do our best for our kid, feed him fresh food, brush his teeth, make sure he’s clean and warm and well rested and … healthy? Well, no.

The only task here is to love, and we tell him we love him, not caring that he doesn’t understand the words. We encourage him to do what he can, though unlike us he is without ego or ambition.
Ronan won’t prosper or succeed in the way we have come to understand this term in our culture; he will never walk or say “Mama,” and I will never be a tiger mom.


The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves.

We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself, though this runs counter to traditional wisdom and advice.

NOBODY asks dragon parents for advice; we’re too scary. Our grief is primal and unwieldy and embarrassing. The certainties that most parents face are irrelevant to us, and frankly, kind of silly. Our narratives are grisly, the stakes impossibly high. Conversations about which seizure medication is most effective or how to feed children who have trouble swallowing are tantamount to breathing fire at a dinner party or on the playground. Like Dr. Spock suddenly possessed by Al Gore, we offer inconvenient truths and foretell disaster.

And there’s this: parents who, particularly in this country, are expected to be superhuman, to raise children who outpace all their peers, don’t want to see what we see. The long truth about their children, about themselves: that none of it is forever.

I would walk through a tunnel of fire if it would save my son. I would take my chances on a stripped battlefield with a sling and a rock à la David and Goliath if it would make a difference. But it won’t. I can roar all I want about the unfairness of this ridiculous disease, but the facts remain. What I can do is protect my son from as much pain as possible, and then finally do the hardest thing of all, a thing most parents will thankfully never have to do: I will love him to the end of his life, and then I will let him go.

But today Ronan is alive and his breath smells like sweet rice. I can see my reflection in his greenish-gold eyes. I am a reflection of him and not the other way around, and this is, I believe, as it should be.

This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today. Now. In fact, for any parent, anywhere, that’s all there is.

Nitty Gritty Dirty Grief

BOO!

Happy Halloween!

I’m not a huge Halloween fan. The pressure of a costume, nasty, nasty candy corn, the color orange….eh, I can take it or leave it.

I DO miss dressing up Samantha in some crazy adorable outfit; maybe that’s the crux of it….darn you Halloween and your cute bunny rabbit costumes.

Every year my friend Jill takes an entourage of ladies on a haunted house tour. I went two years ago but last year decided to pass. I had seen enough of death and I felt a bit like a zombie, thank you very much.

This year I said that I would go.

And I questioned my decision.

I had a conversation with myself in the mirror as I geared myself up for an evening of creepy crawlies and half-dead actors.

“Isn’t your life traumatic enough? Why are you going on a haunted house tour?”

So I thought about it…..

And I started to laugh…..

“I am going on a haunted house tour because Zombies ain’t got nothing on me.”

What do we fear in a haunted house? We fear the unknown, the unexpected…

Unexpected?? Sign me up.

We fear being afraid.

We fear the dark.

I realized I had dealt with these fears for the last five years and as a result Frankenstein is a pussy cat.

So I went with my friends and screamed when the creepy man chased us around with the chainsaw. I ran around like a crazy chicken when the mad doctor followed us through swampy, abandon hospital ward. At the end I found myself laughing hysterically.

It was kind of fun to be scared and not have it mean anything at all.

Go ahead….give me your worst crazy witch lady. I double, dog dare you.

At the start of every tour, the guide would say, “Don’t touch the monsters and they won’t touch you.”

Can’t touch this? Ha! Bring on the monsters.

In the end, real life on a bad night is much more unexpected, can be terrifyingly real and sometimes, yes….the monsters can touch you.

Haunted House? It’s a piece of candy corn.

Candy Corn? Now that’s frightening