Twelve

Happy Anniversary Bee!

Ha! One of our very first pictures together...16 years ago!

There's no one I would want to share this journey with, but you.

❤

Because of You

Before you were born,

You were teaching me.

"But I want one."

"Well, you can't have one."

Tripping and falling all over myself.

In and out of that fertility clinic.

Pricked, prodded, punctured.

Over and over.

IVF or adoption?

Adoption.

This will be our way!

You weren't even born,

Yet, you were stretching and pulling me.

A difficult process,

But I knew it would be fine.

All because you were on the other side.

Who knew,

More struggles.

Unexpected waiting, baby blues, and bonding.

You were making me tough,

Just like you.

It was finally all becoming worth it,

You were worth it.

Then,

You were gone -

But not.

And here we are.

Again,

Here you are.

Always.

Pushing me.

Stretching me.

Further and wider.

More than I ever thought possible.

Baby girl ~

These eyes have seen what eyes should never.

These ears have heard what ears should never.

This heart has hurt in ways a heart should never.

Often times,

I haven't liked it.

But through it all,

You've shown me what I would never.

I suppose I should say,

At a level I couldn't have without you.

From the big -

To love deeper, and give that love more freely.

To appreciate whenever possible, and look for it everywhere.

To give pause, and compassion always.

To try to gain a full understanding, before speaking.

To think - forwards, backwards and inside out.

To think - not so much, and just go with it!

To be kind first, and everything else second.

To always try to reserve judgement, as everyones' shoes fit different.

To always trust your instincts, as deep down - you know what's best!

To never say, 'if that were me' - because it's not and I don't really know what I would do!

To try and be present, with myself and others - because that's where it's at!

To always remember - drama's for the birds, and guess what? The birds don't like it either!

To always give, more than I take.

To enjoy this day, as it may be my last.

To the smaller -

To do my best to let go of control, as it's all just an illusion anyway.

To let up on keeping the house the way I used to, it's just not all that important.

To try and let things people say roll off, there's reasons beyond my understanding.

To forgive more, and move on faster.

To remember until the day I die, I always have the power to change for the better.

Baby,

Without one single word...

You sure have a lot to say.

I sit here with you,

Day in,

And day out.

And you know what,

You are my guiding force.

And I am your work in progress.

Before you were born,

You were pushing me to the outermost.

And chances are,

We will outlive you.

But I'm not naive,

So who really knows.

But if so...

After you're gone,

You'll still be guiding me.

You will carry me throughout my entire life.

You have shown me what my days, weeks, months, and years here are all about.

And the truth is...

Once you know,

You can't un-know.

So, if I remain before you're free,

You will also have taught me how to die.

And that is the one thing that's terrified me most my entire life -

Losing my family.

And you,

You will teach me

Once again.

And someday,

In my death,

I know you will be there,

Once again,

Showing me how.

And I know there will forever be a certain level of peace throughout -

All because of you.

Today

Today, it's a beautiful day.

A perfect 61 degrees right now.

The house is silent.

Aviana is sleeping, peacefully.

Rainey is exhausted from hours of swimming in Lake Tahoe.

We are calm in mind and spirit.

I remember.

Another day started this way...

4 years ago today.

But I have a feeling, 

This day,

Today,

Won't end the same way.

I do however know,

That many people,

Around the world,

Today,

Will experience their own...

Worst day ever.

When life as they formally knew it,

Is over.

Done.

And a new life will appear.

Against their will.

One that is unrecognizable.

One they wish were escapable.

If only, 

They could just crawl back into the former.

As I sit here,

Calm,

And devoid of the complete and total chaos of those first days,

My heart aches for those who are in it.

And the me now,

Wishes to say to the them today,

I know it's bad,

And may always be - to some degree.

How could it not?

But at the same time,

The will for it to be okay,

 Will eventually always shine brighter.

If this helps...

From me to you,

With love.

If possible, choose wisely from the beginning.

Surround yourself in those who love and care for your family...always.

Go easy on yourself, it's a long haul!

Let yourself feel the weight of all that is grief and loss.

Never let anyone tell you how, or when, grieving is right for you.

We all walk a different path on this journey...

And that path - it's our own.

You will never be the same person you once were, don't expect that of yourself.

Embrace the small; beauty lies everywhere we look.

An outlet of some sort is a life saving place to let it all out.

This is a tough one,

But comparison is the root of all evil, it's a lose-lose every time!

Give to and help others, it fills the soul in unimaginable ways.

Laugh whenever, and as much as possible.

If you can, envision the course of a lifetime,

And not just the small of this time frame.

Even though the pain will never fully leave,

You will: 

Smile, 

Live,

Love,

And be happy.

And life -

It's only over,

And done,

If you choose for it to be.

Maybe it's just me.

And this is not you.

Grief is unique,

And shouldn't be pigeonholed.

My love to all who are experiencing their worst.

❤

Black Beauties

Look who came to visit my dad, a mama bear and her little cub. Aren't they the cutest. Especially the picture towards the bottom with the cub looking down at her from the tree.

❤ ❤ ❤ 

Notes From a Dragon Mom

Oh the bittersweet beauty of Emily's every word...

***

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.