Family Friday: Breathing Room

Ok. I'm a filmmaker, and a mom. That means I talk about both, a lot. I'm excited by film, but the joy of time spent with my family is invaluable to me. I decided recently to try something new. Movie Mondays, Family Friday. I'll write a bit about one or the other and share on those days what's going on in our world.

The thing is, Film is how I support my family.  It's not easy, by any means. There are a great many days when I consider throwing in the towel. But then I see these two's smiling faces.

My Husband and I work from home, which a blessing and a whole lot of trouble. It's really hard to tell a three year old "no, I can't dance with you right now" and not feel that pang of guilt for not wanting to play.

But at the same time, she is a constant reminder of what's at stake here.

Recently we launched a campaign to make a movie this summer. That means we're spending even higher than average time on the computer. And it's not my favorite way to spend the day, even for a work at home person.

This past week, it's been unusually warm in Seattle (80 in April?) So we cleaned up the yard, and have been out in the sun every day, playing in the yard or letting her play while trying to be engaged on portable devices. But sometimes, you just have to put the Mac Book down and engage in reality.

So yeah, there are HUGE risks being taken, and a lot on the line for a film that means a lot to our family- in more ways than one. But today, we're engaging in Family. Taking time for us. Peace out for a bit.

See you again Monday.

Back Breaking Benefits

This has been an October full of suck. It's usually my favorite month but between family and friends illness, personal injury and mourning a family loss... I'm kind of done.

Yesterday I went for a follow up for my own trip to the ER, because you know once in a week was clearly not enough. It's the first day I feel well enough to sit in a car since last Friday (and maybe a chair for any period of time). The residual effect of the pain meds the hospital prescribed have left me on bed rest with an upset stomach for almost a week.

I call, and gently remind the receptionist at my primary care provider's office of my condition, tell her it's to follow up because of my ER trip... I have to say that three times before it clicks with her. Then we go in.

Despite the fact that I'd been there the week before for a condition that had worsened, and to follow up the ER visit, we have to wait. We wait a long time. And Ondine is starting to act like any other toddler. And because it's a doctors office there other crying babies. But these don't bother me. They actually make me smile, almost longing for when she was little and things were so much easier. Then I snap back to reality and remember it was NOT easy.

The one dad takes his son outside for a moment to calm him down. When he comes back inside I can't help myself. I shout at him.

Me: Oh my God, does he have a bilateral cleft lip and pallet?

Bewildered (slightly embarrassed) father: Yes.

Me: He's beautiful.

Bewildered (slightly less embarrassed) father: Thank you.

Me: My daughter had the exact same condition.

She goes running by. A beautiful smile, no scar. He doesn't seem to believe me. We start to chat back and forth, my husband and I start sharing our story.

I show him where she started, which was much worse than where his son is for the pallet and lip. I show him more photos of her journey, the device she had to wear, the tape on her tiny cheeks. We talk about the doctors and the NAM molding that didn't work for his son but Ondine would be the poster child for. His sons name is Evan and he has a secondary condition I don't remember. He will have many more surgeries than Ondine because of it, but I would never know to look at his precious smile.

Evan's dad asks us if people ever stared, or gawked. Yes.

I tell him how it took some time to get over myself and not give a damn what anyone thought. I can tell that it takes the guilt and frustration off his shoulders to know someone else was judged the same way, to know that someone else felt they had to explain their situation because it is no ones fault that they were born with a cleft.

His wife comes out on crutches. She tore her ACL. She and I make a fine pair in our struggle to take care of our children with our injuries. 

She sits to feed Evan using a familiar pigeon bottle prescribed for such patients. We tell her some of the same stories we shared with her husband. We ALL complain how tired we were with the first bottle we had to use, grateful when they prescribed the new one. 

We have read some of the same blogs from Seattle Children's site, and heard some of the same stories. It's actually makes me forget about my back and my wait time for  my appointment because it's such an honor to talk to another family who's going through the same thing we did.

We keep talking. No one should cry because other moms, with their perfectly healthy babies, make them feel judged- but we both experienced it. I tell her I only pumped until 4 months but then broke down in tears that I wasn't a good mom because I couldn't feed my own baby. She almost cried, because she didn't make it even that long and thought she was the only one. 

I can see the relief on both of their faces to see our before and after photos. There is nothing that a doctor or expert can say that will be the same as seeing first hand the before and after. There is nothing that can replace the anxiety with the assurance that everything will be alright as witnessing someone else who has passed through the fire before you, with you can.

I am really grateful I injured my back. You see, we were supposed to be somewhere else Wednesday evening. But somewhere else didn't happen. My appointment took too long.  And because of that we were able to share Ondine's Journey with someone new. I can't begin to tell you how the light I saw on their faces, in their eyes, when I told them "I know how you feel" and they knew that I could actually say so. 

There is nothing that takes away the fear of taking a child to a hospital completely, but I'm grateful I suffered a little so that these strangers would know they were not alone and find hope.

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.

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