The Long Good-Bye

I've been trying to think of how best to say good bye. It's been four months now, surely that would be sufficient time to understand how. But I still haven't. I still often think I should call him, I should email him. Maybe this Christmas...

But I cant. Because he's gone. 

I feel very lucky my daughter got to know my brother. This summer, through a series of circumstances in our lives, my daughter spent a magical month at Grandma's farm. My brother had recently moved home after some heart wrenching struggles with depression and life changes. She was a magical little blessing that restored his hope and taught him to see the good in the world again.

The best way to  describe Jared is that he was my younger brother. He was four years younger than me. He irritated me in the ways only a sibling can. But he made me smile as often as he didn't.  He loved his family very much, if he didn't always know how to express it. He was generous to a fault, which is no fault at all. He even let my daughter ride on his shoulders like her daddy does. He helped her ride horses even though he was horribly allergic.

He was 28 years old when he died. 

He was riding home from work on his motorcycle. There was nothing particularly significant about the day. It's a beautiful stretch of highway between Spokane and the family farm in Rosalia. The road was open, the stretch flat and the sun glistened on the freshly harvested fields. As far as we can tell, there is nothing to indicate anything other than accident. There is simply no evidence to ever answer the question why. Who, what, where and when can easily be pinpointed. But sadly, not why.

For his memorial, the family came together. The only other time that has happened was my wedding. My step-sisters helped me reserve the Lady Washington for the services. My step-brother came in with his boyfriend and helped me put together the reception at the beach.
Even my father was there with his new wife, which hasn't happened in a very long time.

That said, I think I'd like to honor him in some small way, help people remember him the way I do. I wrote his eulogy, which I share below so you can see what I do. He may have been 28, but it can be said of him what can not be said of many: he really lived. 

It goes without saying that this makes no sense. It doesn’t make a damn bit of sense that today we gather to say good bye to my brother, and yours. Your son,  your friend.  I’d like to try and paint a picture of who my brother was.

Jared came into this world surrounded by long legged women in painted faces and fake lashes.  My memory of this is imprinted though the stories I have heard and the pictures I’ve gathered. I have a photo of him in a plastic box, cords this way and that because his lungs collapsed when he was born. But that’s not what I gather from the photos.  I see my mom’s face, and my dads. I see the love on their faces. Then there is a photo that I’m in I’m wearing a little house on the prairie smock, and holding me little brother. 

And it’s love.

Of course, like all siblings, that blissful moment of welcome is quickly replaced with “stop copying me”, “That’s MY toy!” or “he hit me!”.  I have very vivid memories of being so angry with him for copying my food choices at a restaurant that I insisted he order first so he wouldn’t copy me… only to be thwarted because, as it turns out, grilled cheese is not exactly a unique palette choice.

I also have equal memories of him telling stories of my life, exactly as I lived them. But to him, they were his stories. It didn't dawn on me until my wedding day why.  You see, we’d had some pretty epic speeches from the Best Man and the Maid of honor. Then comes my little brother. He always seems a little quite, a little nervous, but there he was. Well spoken, well written and ready to paint his own picture of the day.

He observed the world around him, looked up to people that he loved. It didn’t matter if they were family or not. And that’s one of the most beautiful things I find with this family. That we don’t see blood we see love.

Jared saw the love, though sometimes I know he didn’t feel it.  His picture of himself was a little fractured. But as Great Uncle Ernie Hemmingway says, we’re all a little broken. That’s how the light gets in.

I am sad today. I’m angry. I am more than a little broken.  But Jared was a light, even if he didn’t know it. He was a light that touched everyone here. He made us frustrated, he made us cry, he made us smile. He loved so fully and unconditionally.  I’m really grateful that Ondine got to know her uncle, my brother, our brother, as I knew him. Someone to go on adventure with, to see the world with eyes that didn’t know boundaries but saw family and love everywhere.

I love my brother, and I know that while the last few weeks have been pretty hazy, he’s been there. Whatever adventure he is on now, it’s just as beautiful as the open sea or the open road where joy swells in your heart.

 While my brother was not a walking Christian, he was saved at an industrial goth-rock concert. That's a thing, in case you were wondering. He was old enough to understand what he was doing though he very rarely set foot in a church afterwards. He was a spiritual person though, who loved people and didn't like to see anyone hurting. I found a poem and I will read it for you now, knowing that it speaks closely to his heart and who he was.

When I am gone, release me. Let me go.

For I have so many things to see and do.

You must not tie yourself to me with tears.

Be happy that we had so many years.

I gave you love, you can only guess,

How much you gave me in happiness.

I thank you for the love each have shown,

But now it is time I travel alone.

So grieve awhile for me, if grieve you must.

Then let your grief be comforted by trust.

Listen with your heart and you will hear,

All of my love around you, soft and clear.

Then when you must come this way alone,

I will greet you with a smile and say…

Welcome home.

We'll miss you Jared. Have a safe and beautiful new adventure.

Ondine's Journey: One Year.

Kids man.

They change your life and you never really know how until you have them. And you're nodding your head and raising a glass to me if you have kids or shrugging your shoulders that's what everyone says if you don't. It's just the way it's gotta be.

I guess there's LOTS of videos out there for people celebrating their children. There's the dad that shows the transition of his kid for the first 12 years (which, by the way... that takes dedication!) Same with this dad who did 1 second a day from birth for a year.

We're not that organized. We are however filmmakers so it would be just unacceptable if we didn't have some footage of her. Turned out we had 6 hours of footage. Wow. Lucky for us, my husband is an editor, and it didn't take him long to whittle it down to 10 minutes of our favorites.

If you started at the beginning with us, you know what a journey it's been. And that Ondine's Journey, while not entirely unique, it was a difficult and beautiful journey.  I hope you'll appreciate this little window into our life with her, the triumph and trails and the extraordinary beauty that just radiates from Ondine every step of the way.

Stitch Free, the Return of the Tape

So excited! August 19th and the stitches (finally) come out. This was a longer than normal stitches in situation due to schedule conflicts. The doc was out when we were in so to speak.  But huzzah they’re out! …

And the tape is back.

We knew she would have to have stints- little plastic tubes- to help her nose keep its formation after surgery. We forgot that there would be tape again.

She was NOT a happy camper.

Well such is the way of it. We don’t often like things thrown our way. More often than not we are fully prepared for one challenge and life throws us a curve.

For Ondine, the challenges will be life long. I have friends who are so excited. They think her journey is over. I don’t have the heart to explain there are at least two more surgeries.  This one was substantially cosmetic when you get down to it. The future holds a much more significant and difficult surgery. But we can only face them one at a time.

So for now, we will dutifully put her new device in and e the mean parents. Because the rest of her life she won’t remember this pain.

When the First Baby Laughed

Laughter can cure all that ails you. Laughter cures fear and mends broken hearts. Laughter lifts your spirit and shakes off despair. Laughter gives you strength through pain, and celebrates your heart. A child’s laugh is a diamond that cuts through all trouble and gives hope for the future.
Ondine laughed today.  And The day before. and will again tomorrow. Weather  it was the funny faces we made, or that we elicited joy from her tiny form, she laughed.

Each day is unique, some good some bad. Somehow that small laugh made all our struggles vanish. That small laugh restored hope on a weary soul.
“When the first baby laughed for the first time, the laugh broke into a thousand pieces, and they all went skipping about. And that was the beginning of faeries.”  I’d like to think the first laugh for each child becomes a faery. for how else do you explain the magic laughter of a child.

A Journey Begins

If I thought I had a lot of doctors appointments during my pregnancy, nothing compare to the first two weeks of Ondine’s life on earth. Or what’s to come over the first year of her life.

The first post hospital visit was a visit to Seattle Children’s Hospital craniofacial unit. This was my second visit, Collin and Ondine’s first. This appointment isn’t what were hoping for. We’re hoping for a meeting with the surgeon to discuss the trajectory of her surgery. Nope.

1st up are the nurses. They check weight, length and skin color. They have me feed her to watch and judge if she’s eating correctly. Turns out Ondine and I are pros at bottle feeding. You see, a cleft lip & pallet child can’t nurse. It’s been one of those ongoing “I’m an unfit parent” internal conflicts for me. And everyone else wants to tell me just try to breast feed. I want to scream “I can’t!” But the reality is she can’t. It’s not her fault any more than it is mine. She can latch, but because there’s a hole in the roof of her mouth and a gap in her lip she can’t get any suction.  It’s been hard for me to come to terms with but I refuse to formula feed if I can avoid it so our schedule is pump-store-feed-repeat. It’s painful and exhausting but it has to be done for her sake.
Next up is the social worker. I panicked slightly when they told me I had to meet one of those.  Luckily she turned out to be a fabulous woman whose purpose there was to make sure I had the tools I needed to care for my child. Her job is to be there to support us if we have questions, help us navigate insurance if necessary and anything else we could think of. She was the first social worker I’d ever met and trusted from minute one.

Finally the pediatrician comes in. She takes the exam even further checking reflexes, ear canals eyes and all the other standard healthy human tests. Ondine passed with flying colors. Then they were able to answer a few questions but not the main one. The answer is still 3-6 months and we won’t know until you meet the surgeon.

So we head into Easter. We have not yet met the surgeon, but we’ve met his team.

Painful Joy

3 am wake up.

During the course of pregnancy I’d come to recognize this as my nightly bathroom break, or perhaps it was time to shift to the other side because baby had decided it was time to practice her ballet bar then.

This was very, very different.

I couldn’t breathe at first. I sat straight up an immediately regretted it. My husband slept beside me and I didn’t want to wake him up in a panic if it was another false alarm. I grabbed my phone, flipped on the stop watch and started timing.  Contractions: 5 minutes apart, lasting for a minute… 20 minutes.

They had us practice in our birthing class holding ice in our bare hands to feel the pain and breathe through it. Sounds crazy but that ice burns like a mo-fo and without that mental prep, I could see how it was easy to grab the nearest intern and roar for drugs before you rip out their heart. I’m luckily stubborn enough that it worked. Time to wake up the husband.

“Babe?”

“What?! What’s wrong!”

“It’s time.”

“Are you sure? We can call the midwife.”

“No. It’s time.” 10 minutes or so later my husband and my mom had me in the car and we were on our way.  It was the most painful car ride I’ve ever endured. Not sure if it was the pain or my mom and my husband cracking really bad jokes to take my focus off the pain. Either way the drive sucked big time. Mom dropped us at the front entrance. I’m praying the doors are unlocked because I really don’t want to waddle through emergency and then up to the birthing center. Luck was on our side.  Contractions: 4-5 minutes apart, lasting for 1 minute for the last 45 minutes.

My husband checks us in at Swedish Hospital in Ballard and fills out any paper work not already prepared in our birthing plan folder. The midwife comes in and they get me into a gown, explain that they still have to check my cervix to determine if they should keep me for now or send me home.

“You made it to 5 cm dilated before coming in? I’m impressed”

“I told you I have a high pain tolerance.”

The first thing they did was put me on antibiotics with a locked IV in case I needed a bath or shower during the process. About 2 weeks prior I had tested positive for Group B Streptococcus (GBS) which is normal and occurs in 25% of healthy adult women, but can be harmful to newborns. Ergo, antibiotics.

For the first several hours not a lot happened. Meaning I did a lot of breathing and bracing through contractions. Friends started to show up. My vitals were taken, we monitored baby and the routine parade of medical professionals made their presence known to me, who they were and what their specialty was. I was tough. I can handle this. Just breathe.

Around 12 hours I broke down.

I was ready for an epidural. I felt like I had failed. I had wanted so desperately to have a drug free delivery, and with my scoliosis, it was incredibly risky .

I even had second thoughts when my midwife came in, asking her to check how dilated I was because if I was getting close enough to push then it wasn’t worth it.  Then the mother of all contractions hit me and I couldn’t breathe at all.  I was on all fours screaming in my pillow until it passed. I collapsed on the bed and sobbed. I didn’t care anymore, I just wanted to pain to stop. I held my husbands hand and waited for the anesthesiologist. What seemed like hours later, I woke up. I had finally gotten some real rest. I was able to joke again, tease my husband and hold his hand. I couldn’t feel my legs at all, so they turned off the epidural. I’d need to be able to feel at least a little in order to push.

When the pushing came time, it wasn’t at all what I expected. In the movies I see the crinkled faces and the screaming anguish. But I was drugged and couldn’t feel my legs. I felt the contraction, but barely. Time to push. To me, it felt like I was doing sit ups for an agressive trainer who wont take no for an answer.

With one foot in my mothers hand, the other in my mother in laws and gripping my husbands hand so hard I might break it, I pushed. Ten seconds. Breathe. Repeat.

I’m not sure how long this took, maybe thirty minutes, maybe an hour. And then she was here. Ondine Evelyn Neal, 8lb 15oz, 20inches long. She was purple, and crying. But she cuddled onto my chest, set foot on my belly and was a part of our life from here on out.

Everything else sort of faded away.  Pain didn’t matter, and while the doctors were busy sewing me back together in spots, I was completely distracted by the most beautiful face I’d ever seen. I was now a mother.

Perfect Children Pt. 2

October was kind of an exciting month. We had made official announcements that we were having a baby, the first for my side and the second for my husbands if we don’t count cousins (which there are a lot of them).  October 17^th was our routine exam that was to be proceeded by a standard 21 point ultrasound.  Everything was going swimmingly. Baby kicked, baby stretched, baby let us watch them fold in half and do a hand stand.  In general, baby was healthy as a horse.

But not quite. We had just been told that baby might have a cleft. We had a million questions and dark cloud had settled over our heads. We went to our follow up with doctor that very same day. 

Now, there are a list of tests that are “optional” for expecting parents designed to allow you a leg up on preparation. Some people want the whole shebang, every test available. Others would rather leave it up to God or fate or whatever they believe in, and only do medically necessary testing. For myself, I’m somewhere in between. I’d truthfully never thought about it because like many women my age, babies make us smile but we’d never considered all the things required of us to make one.

So, while the doctor had mentioned them in passing at our initial consult and handed us a stack of information packets that I sort of glanced at, we now were being pressured into tests that we had really been uninterested in before. The thing that was confusing us was that they would reassure us that there was literally nothing we could have done differently to change the outcome of a cleft. There was no history of it in either of our families.  I wasn’t drinking or smoking and we were both relatively healthy individuals. Nothing was abnormal for the first 5 weeks of pregnancy so the chances of anything environmental that had caused this we small. In fact they really don’t know what exactly causes clefts aside from lifestyle and medical history. This time, it was just chance.

Despite all that, the abject warnings about potential chromosomal abnormalities suddenly skyrocketed. Words like “down’s syndrome” and “sickle cell anemia” were tossed around like a hot potato.  Amniocentesis was optioned and pushed for as a way to determine if the baby would have any of this. These heartbreaking concepts are pushed because “we want to make sure that you have the best medical care available.” The problem with this is that these tests are very expensive and can be very inaccurate. Even under ideal circumstances they’ve had test come back clean as a whistle only to have babies born with very serious issues. So it’s a crap shoot and you’re out the money either way.

Then the real question was… well it was eluded to, without being stated. Do you want to keep this baby or not? Because that’s what it boils down to at the end of the day. If the test is negative would you keep this child?

I have always fancied myself a pro-choice individual. I’ve always consider it my body my choice, and I still do. But suddenly I faced a very real question for my own heart and soul. My husband and I are responsible adults on most days. We chose to have sex, we chose to not use any contraception. And despite all the environmental reasons in the world to have not conceived when we did… we did. Was that also chance? Would I, could I free us of a burden simply because the baby might not be “perfect” in the eyes of the world? I’d never been faced with such a question before. And it disgusted me that it was a question I had been forced to ask myself.

The more times the amniocentesis was pushed, the more I felt like that was what modern science was saying to me. If you take this test, you can get rid of it, if you don’t your stuck.

I fucking hated that thought.

I hate that it made me hate pregnancy and question every fiber of my soul because I suddenly didn’t know who I was any more. Who was this doctor to suggest that imperfection was not beautiful?

By the time we left my husband and I felt lost. But I had made up my mind. No test, in all the world, would change my mind. This child was mine, my blessing and my responsibility. So fuck your test and let me have my baby in peace.

I promptly found a new doctor.

The moral of this story is not yet over, as it is not yet written. But what I do know is that all children are beautiful in the eyes of their creator. I understand some of you may not believe that, but they are. This child, my child, will not only live, but will be as sassy as mommy, as strong as daddy and look at this world in absolute wonder. 

Prefect Children Pt. 1

This may come as a shock to some but I’m a Christian. I know, mind blowing isn’t it? I can still be in shows like HAIR and work on a horror film folks. Still the same me, just with a little faith in something greater than myself.  I am a liberal leaning Christian and my husband tends towards a more conservative Christian. So sometimes we don’t always agree on the fundamentals. We’ve had those fabulously heated arguments about the basics but because we love one another and can’t imagine a world where the other isn’t part of it, we always come to terms with our disagreement and try to see it from both sides, with mostly success.

Then along comes baby. And everything you thought you believed with every fiber of your soul is challenged. For starters, there’s a lot of things you don’t know and a lot of answers you’re expected to give without ever having known there was a question to begin with. It can be as confusing as it is overwhelming.

I feel a bit like they were making up for the first 3 months I was on set of my husbands first feature and there were all kinds of tests. Blood tests, urine tests, ultrasounds, more blood tests and on occasion a written exam… I’m kidding. Or am I?

These are a monthly part of the ritual now. Once a month you check in to make sure mama and baby are developing on target, because despite our differences there are some consistencies about every pregnancy that must be met. So October 17th I went back in for my monthly check up (I swear I’ve spent more time at the doctor in 4 months than in 6

years) preceded by a 21 point ultrasound, whatever that means.

It was the first time I really felt pregnant. This wasn’t just a little floating blob that may or may not be a fetus, but a living breathing (metaphorically) being inside of me. While the movement I felt left me feeling more gassy than anything at 18 weeks, I could really see baby for the first time. How baby loved to fully stretch out their legs from one side to the other.

Baby was sassy as could be, mouthing at us and not letting us get a clear shot of their face but distinctive poses to see a very healthy spine, legs, arms, fingers and toes. Not to mention a very strong heart.

We had already decided we wanted to know the sex of the baby, but we also wanted to make that a special moment at a reveal party, my mother-in-law’s suggestion that I loved.

So they put the information in a pretty little envelope, sealed, and then went to get the doctor.

Now this isn’t our normal doctor, it’s the doctor assigned to the unit for radiology and ultrasounds. Never met him before, he’ll never see us again. He doesn’t do more than introduce himself blithely and dive right in.

“Well your baby is healthy, but looks like they will have a bilateral cleft lip.”

Do you know what it’s like when blood freezes? It’s painful. You can’t breathe. Your whole body aches and ever muscle in your body tenses as if you’re lifting Atlas’ burden.

“Excuse me, what do you mean?” The doctor proceeds to explain that there is bulbous tissue around her mouth that is typically indicative of a cleft lip and or pallet. That it’s too early to know anything for sure but that the amount of tissue around her lips makes him suspect a bilateral cleft lip.

He asks a few personal questions about health habits of me. Do you smoke? No. Do you drink? Not since I found out. Is there a history of cleft or other birth defects in your family? No.

Well, then it’s just bad luck.

“Excuse me? Bad luck? My baby is not bad luck, you egotistical asshole! My baby is a blessing. You are the only bad luck that’s entered my life and your bedside manner is shit!” Never mind that this was inside my head and not what I voiced. I was trying too hard not to cry. I looked at my husband and he was in exactly the same place I was- ready to strangle the doctor, fighting tears.

We took our pretty little envelope with our card that revealed if baby was a boy or girl with us and somberly got back in the car. We hardly spoke.

Clefts, we had been told, were incredibly treatable and incredibly common. They are much more common among boys. That 1 in 700 children born will have it. But neither of us knew enough about them to have the slightest idea about what to do next.

So here we are, at a dark place. And the challenges to our faith and trust in God and each other were just barely about to begin.

To be Continued....

The Only Gift I Have, For Mother's Day

Because I’m a starving artist, I don’t often have the means to treat my family to the wonderful things they deserve. And when holidays like Mother’s Day come up, I don’t know how to give without going even more broke.

This year an opportunity came up to write an essay with the grand prize being a day package to Olympus Day Spa.
Here is the essay I wrote. (ps. I WON! pps: You want to win with the wife/girlfriend Get her a package here)
________________________________________________________________________________________

My mother has always and ever been a fighter, and a lover. A fighter because she has an iron will to accomplish the impossible. A lover, because no amount of hardship or mountains she had to cross would ever dampen her spirit of generosity.

When I was a little girl, I lived in a fantasy world. Most children do, but mine was filled with Tigers, and Elephants and magic. My mother was a dresser for a stage show at the MGM Grand in Reno, NV. I was the stage brat running around under dancers feet and weaving in and out of the catacombs of a theater that was very much a little Neverland.

I never knew how poor we truly were.

I remember one Christmas distinctly. We had a huge roast turkey and all of the trimmings. There were presents under the tree and a fire in the hearth. She took my hand and led me and my younger brother into a homeless shelter where we spend the morning serving others. For me it was a game. And when we came home I won the prize of a wishbone. What I didn’t know that my mother had barely been able to afford the turkey, let alone any presents. We were at the bottom of the bottom for income, surviving on table scraps while she worked full time to support myself and my younger brother. But to us, it was ever an adventure. Rain or shine, she loved life and made sure we did too.

Years later I would finally understand it. How she would go without so that we could have. How she would smile so that we would know that everything was ok. I remember living in a dream world because my mother made it so. She allowed us to be kids. She allowed me to be a young girl who discovered the world on my own terms. She held me when I hurt, taught me when I was wrong, and led me to be the best person I can be.

My mother taught me to be a woman who loves first, questions second and commits to the ones I love with an undying devotion.

The Heart of Beethoven

So my mother has this inherit knack for finding poor lost animals. There was the black Pot-bellied pig running down the interstate she mistook for a dog. The 2 dogs outside a big box mart that she just couldn’t separate. The cat named Mr. Murder in honor of the film she was working on that magically hopped in the transpo van and decided he was staying. Buddy the golden retriever that dug his way IN to our yard. There was a turtle, a horse, another dog, a litter of kittens, another dog and a partridge in a pair tree.

I’m sad to say because of this I am now immune to their cute pathetic plight.

Then Beethoven happened. (*click link to see video*)

This little guy is aptly named for his condition: he’s deaf. He’s also smart as any jack russell terrier that has ever lived. He already knows hand signs for “No” “Come” and “Sit.” He’s learning to heel but I’m convinced this is more because he figures if he follows you he won’t get lost and he can’t hear the dog barking at him from he opposite direction.

Beethoven is a-friggin-dorable. And I’ve been sucked in. He’s smart enough to yip when he needs something and manages to communicate what that is more effectively than some humans I know. So what if he walks like he’s drunk, he has no balance due to deafness so back off!

We’ve noticed he is slightly afraid of the dark and terrified of stairs. But with practice and treats three weeks ago he went up them all by himself. Down he still needs practice and set of hands ready to catch him if he falls, but he’s learning. He’s so smart. He watches and observes everything. He calculates and the decides if or what he needs to do. Usually with a bounce to his step and a wag in his tail. He absolutely loves life.

Sometimes I wonder about Gods plan and the universe in general. How do you decide what’s right and what’s wrong? Are you making choices just for you or for some higher grace? Beethoven has given us a challenge like no dog before him and no dog after him ever will. You can’t just call out to him, you have to touch him. You have to be involved in his learning. If our purpose in having a dog was to teach us to be better parents, little Beethoven was perfect for that. He was not a demanding dog, but he required that you love him unconditionally so that he may return the favor.

Beethoven died today….

His little body has not been doing well for a little over a week. We’ve tried every tactic under the sun to give him a happy home that made him healthy, but he caught a cold that turned into an infection and weather the infection attacked his body, or his body couldn’t sustain through the infection his organs started to fail. Everything but his heart. His eyes asked for the pain to stop, he huddled close the those he loved most and had come to know as his family. He nuzzled close, just had always done right before bed time.

There are no words to describe the void in my heart. Perfect strangers, young and old wanted to touch him, even if only for a moment. Perfect strangers who wouldn’t help their best friend move, wanted to reach out and say hello to this little guy. Perfect strangers noticed him from across the street or down the block, because when Beethoven walked down the street, there was a wiggle to his step that said life is beautiful, and needs to be treasured.

Watch the Beethoven Slide-Show