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.

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 🙂

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.

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

This post is from the amazing Martin Family. When I think of the good things Samantha got from preschool I think of Caroline and Max and the very special gifts they gave us.

Samantha had a ‘dalmation’ coat that was spotted. Max would meet her at the preschool door saying ‘Puppy coat! Ruff, ruff! Puppy coat!’ and he would help take the coat off.

I still cannot give that coat away.

I never knew two small children who knew my daughter….loved my daughter they way that they did.

What Mom, sweet Rebecca does not mention in her post is that their fabulous party raised over $500 for our foundation.

Two sweet little people decided to forgo their birthday presents and raise this money. My favorite, most-enduring story is that Max did not want to give us the money. He wanted to wait until he was an old man, until he went to heaven. He wanted to give the money to Samantha himself.

I am amazed.

I think maybe we all saved each other. In Caroline and Max’s world, Samantha has not gone anywhere, she is a fairy, a smile, a rainbow, a bit of light and they carry her in her heart everyday. In my world, they remind me to live my life with her, on my shoulder everyday…to embrace who she was and the joy she can still bring.

Thank you Martin Family- this is their post….and this is the Martin family, could they be anymore beautiful?

Dear Miracles for Mito,

Two years ago I carried my son Max into a special needs preschool for the first time. I carried him because even at almost three years of age he lacked the energy and coordination to walk very far. There was another child being carried in that day. She was a few months older than Max, but she looked much younger. She was cradled like a baby in her mother’s arms. She could not sit up or hold up her head very well. I watched them.

The mother, Heather, looked so pulled together, so happy, despite what was obviously a very tough situation. I felt embarrassed. Here was someone dealing with so much more than I was and she was handling it so well! What was her secret? I wanted to talk to her. I was desperately lonely in our world of unknowns. But I could not talk to her, I didn’t know how.

The months went by and my older daughter Caroline fell in love with that little girl, sweet Samantha. Every day at pick up she would go over and sit near her and watch her. Sometimes she brought things to show her, even though she was not sure if Samantha understood. Caroline connected with Samantha in a way I will never quite understand, they just clicked. Max too loved Samantha, he shared his mornings with her for a whole school year. Every day he would report to me if Samantha had cried. “Antha cried.” He would say with the saddest look on his face. He was so concerned for her. I was told later by Heather that he even tried to stop her from picking up Samantha’s wheel chair one day. He was not sure who Heather was and he was not about to let his dear Antha’s chair be taken away.

Finally in the Spring I got up the courage to talk to Heather beyond the small chit chat that happens in the school doorway. Max was due for an MRI and a Spinal tap at Children’s Hospital and Samantha was there at the same time. Samantha was hospitalized due to another of her many medical battles brought on by mitochondrial disease. Heather took the time to talk to me and my husband as we waited for Max to get out of radiology. I had meant to be there for her, to try and be supportive of their situation, but she was the one who was there for us. We agreed to chat more and to get together.

When Samantha was out of the hospital they came over for a visit. Caroline stayed by her side the whole time. The very first book she read on her own to anyone was read to Samantha that day. Meanwhile Heather talked with me and encouraged me. Heather understood, like it says on the Miracles for Mito web site: that no one should ever walk this journey alone. By that time we knew that Max had a rare metabolic disorder, but we also knew there was a treatment and that he had a positive future. I was slowly finding my way and accepting that we were on a different path in life and that it was ok to be on that path. Maybe I too could be that pulled together woman walking into preschool with a smile on my face.

It was only a short month later that Samantha passed away. It devastated me beyond description. Samantha and her mother had changed us. They had loved us and encouraged us even when their own plate was full to overflowing. Samantha had touched my children in the most beautiful way. They adored her. Heather and Samantha had shown us how joy is to be had even when life is tough. They gave us a gift of a new way of looking at life’s trials.

We wanted to give a gift back to them. My husband and I had planned an early birthday party for the kids to try to take advantage of the nice weather. I asked Max and Caroline if they would like to forgo presents to raise money for something that could help other children. I gave them choices; I wanted it to be their decision. Without hesitation they both agreed that they wanted to raise money for Miracles for Mito. In the past year it was a rare week that went by when one of them had not mentioned Samantha.

The party was a true celebration for our family, it was about more than just birthdays. It was about the journey our family had taken over the last few years. It was acknowledging our fresh perspective on life. A perspective that Samantha herself had deeply impacted.

We no longer walk alone and we don’t want any other Colorado families to have to walk alone either. We are honored to pass along the birthday generosity of our friends and family to Miracles for Mito to further that goal.

Thank you,
Rebecca, Ray, Max and Caroline
http://www.waitingroomlife.com

Today I am posting on the Get Born blog. It’s interesting posting on a parenting site but if you know Get Born, you know it’s not your typical….’how-to-make-paper-mache’-pumpkins’ site.

Get Born can be a little meaty.

Pass me a drumstick 🙂

Hello.

I’m back.

It’s been three weeks and I have missed you.

I’ve thought long and hard about why I left for a while and can give you a very long, detailed list….work, hubby, eye brow waxing, belly button lint collecting, making a sweater from said belly button lint, remembering to inhale, forgetting to exhale….remembering to exhale…..long, hard exhale.

But here is the truth.

Grieving sucks.

Not only does it suck…like math homework and cleaning the toilet but it SUCKS, it sucks the very life out of you. It reminds me that I am a fragile person, that I am not as strong as I think I am. It drinks my mental and physical reserves like honey and then smacks it’s lips and asks for more.

Bastard.

And I have realized that when work seems out of sync, life seems out of sync, hubby and I seem out of sync, that I have no reserves to draw on. I hide in my little toe while my alter ego, ‘It’s-All-Good-Heather’ tends to my basic life support, toileting, the brushing of teeth, combing of hair, the inhale and the exhale. She is a good care-taker.

It’s-All-Good-Heather searches for my big girl pants only to find they are at the cleaners, she gathers reserves in tiny droplets….like collecting morning dew in baby leaves, she finds things that bring laughter and joy to draw me back out of my little toe.

It takes a lot of work- I can be quite stubborn- therefore It’s-All-Good-Heather has no time to blog….nor would she want to……topics seem silly when I hide in my little toe and she must worry about making sure my hair is brushed.

So that’s where I have been; hiding, gathering reserves, searching for joy in tiny crumbs and fighting that bastard Grief within the confines of my baby toe.

Fighting Grief in the baby toe is tough; it’s crowded, dark and particularly stinky when I wear my Keds with no socks. The good news is that there is no where I can hide and there is no where Grief can hide. It’s like High Noon.

I worried about telling you where I was. I like to be happy. I like to find joy. I like it when I like my life. But it isn’t always the truth and I know, know, you can handle the truth.

Have I mentioned how lucky I am to be surrounded by smart, resourceful people?

Here is Deana’s post. Full of great, great information on Mitochondrial resources.

Thank you Deana!