So You Wanna Be a Cowgirl...

Aviana started Ride to Walk yesterday. She loved animals before, so I figured this was the best way to get  her out and closely involved with some awfully beautiful creatures! 

Doesn't her horse just take your breath away? 

His name is Ranger.

Ready to Ride

The paparazzi runs rampant in this place ; )

This one was so cute, I told her she could stay...

Avkin... ❤

Oh the tears as they rode away...

They stretched her all out : )

Towards the end, she fell asleep. She did this when we started her in school too. They told us at The Institute, when brain injured kids get overstimulated they tend to shut down or tune out, but once they become comfortable, they will tune in. We notice Aviana's way of tuning out is to just fall asleep.

I'm sure as with school, after a few weeks, she'll stay awake the whole session : ) 

Out...

Sweetie Pie.

A Girl and Her Horse

Setting off for the day, I just never know. Simple errands involving check marks off my mental list. Sometimes, somewhere in there, lifelong impressions are left. Happy is the heart, which experiences this kind of person; this sort of interaction.

Yesterday, Aviana and I were bouncing from here to there. Christensen's Saddle & Feed was next up. There, we would have her precious, little head fit for a helmet, as today we start with the horses. Aviana's hair was up like this...

so I needed to take it down in order for the very nice woman to be able to first get to her head. Now you all know what lies beneath, but this unsuspecting woman had no idea. 

Poor Avi is at the mercy of her dad's antics, and has no say. One night before a bath I hear, 

"Hey hon, come here," and walked in to this...

He said, "Look, it's Aviana Ross!"

Two nights ago, right before a bath he was texting my mom and uncle this next picture.

I won't tell you his caption.

Anyway, this is more of what she looked like at the store, but with a little more volume. More on the side of what you're used to...

The woman could not believe how much hair she has. I explained that we had even cut about 5 inches off some months prior. She was amazed! She looked at my hair and then inquired about her dad's hair. I explained that I didn't know as we had adopted her from Guatemala. 

She let that simmer for a second, and then expressed her admiration as this all must be quite an undertaking. I explained that Aviana was once a well child and briefly told her what happened. She had to blink back the tears. She was really empathetic.

She soon went back to get another helmet and I walked over to look at the shoes. I found the cutest pair of cowboy boots and wanted to get them for Aviana. They were absolutely adorable. I could visualize our girl on the horse with these green and brown beauties. With them in hand, I asked the lady about them. I then ran over to Aviana, showed them to her and asked her if she liked them. I excitedly held them up to her foot. I was picturing them with her cute jeans, shirt, and on the horse. 

But then, the hot sting of reality. I got lost in the moment. It happens. Practicality pulled. Brain injury rules. The former life is lost, and like a slingshot, I'm flung back into the realm of the brain injured.

The woman was on a ladder in the back, helping me, and I had to stop her. I explained I wasn't able to get her the boots. I let the moment get the best of me. The truth is, her feet are turning inward and I wouldn't be able to get them into a cowboy boot. I smiled and apologized.

We carried on. We looked at all the other cute stuff. Socks, stickers, and stuffed animals. The woman was asking if Aviana would want this, or like that. Finally, she said she wanted to buy Aviana a little horse purse. She tore the price tag off, walked over to Aviana and lovingly talked to her and rested it on her when she realized she couldn't take it. 

I melted, for so many reasons. The kindness - once again - of some people. For how Aviana brings these people into our life. For this woman to actually see Aviana. For her to care for Aviana, and us. For our two worlds to come together, on this day. For her genuine love.

As all these thoughts were swirling my mind. I was doing my best to hold it together. She rang me up, and then I asked if I could giver her a hug. We met halfway around the counter. I thanked and told her how much I appreciated her. Guess what...yep, I started to cry. She did too.

It's people like her that help pull me along this path. 

When you have a girl like Aviana, people tend to look the other way. I know the majority care, and it's mostly out of discomfort. I never fault them, but the truth is - when people look right through her, for whatever reason, the hurt is all the same. So when people actually see her, and love her, my heart...I have no words. 

Some people are placed into your world. Yesterday was one such day; one such interaction. Every time I look at that little horse I will remember that woman, but most of all - I will remember all of the kindness and love she showed us.

Some Things Never Change

When our two worlds, our two girls, collide - an indescribable feeling always arrives. 

Aviana used to love clothes. She especially used to love trying them on. Every time we went to the mall, she would attempt to make it an all day event. We used to pick out a number of things for her, and she would want to stay in the dressing room and try every last piece on her tiny little body. 

She would spin, grin and twirl as if she were the only one in the mirror, more like...in the world. And I, well I would just sit on the sidelines and admire. She especially loved to look at her booty! Towards the end of each outfit, she would turn to me with a cute, little knowing smile and pause. I took my cue, "Yes baby, you look adorable!" Her consensus was always the same....every single outfit looked perfect on her...even if it was a size too big or small. Finally though, the clothes ran out and we had to go, but she never wanted to. That's the breaks girl, you can't live in a dressing room.

Some things never change. In her heart, she still loves clothes. Every time I buy her new outfits, her eyes light up and she carefully inspects them. While we're out shopping, I show her skirts, shirts, dresses, and then...onto her lap they go. I imagine it might be amusing to the people who watch. They must hear me talking, to what appears myself if they don't see her, "Honey, what do you think about this color? How about this one? No, you don't like that. Come on...that's crazy, Labor Day rules don't really apply! You've been reading too many magazines. Put the People down, and tell me what you think about this dress?" In all seriousness, I watch her eyes and her expression. Sometimes I can tell, other times - I just have to guess. All my chatter while this speechless, cutie pie rolls around with stacks of clothes toppling higher and higher. 

I'm grateful for any little thing that sparks those sweet eyes and that beautiful face. God...am I grateful! For those are the very things that carry me through - 

moment by moment, breath by breath.

I was without her this particular day, but apparently I struck it just right in her eyes. 

The pictures are blurry, but I just love this one. 

Surveying the goods.

When we put the skirt on her lap, she looked down at it : ) 

Hmmm...which outfit should I wear first?

Daddy may be asleep, but I'm still thinking about what I'm going to look like in my new clothes this week : )

Yay, The Lights Still Work!!

As we continued along, we knew we had to do something. Have you ever had something go down the wrong pipe and cough? Your eyes water and it just feels kind of awful. Well, this is what Aviana was experiencing. I felt like this was happening to me more than normal, so I would know exactly what was happening to her and feel the urgency.

Often times, I have to admit...I would start crying. It was an insult to injury moment. Why? Because eating is a basic function of life. Eating - something she loved. Eating - something she couldn't successfully do anymore. Poor eating = even poorer quality of life.

To the layperson, they might just simply look on and say, "hey, that child isn't eating well...just pop a tube back in her" and call it a day. Again, our shoes are not anyone else's, and while yes of course part of us wanted to do that, no decision is ever that simple.

In the beginning a tube wasn't an option for us (until UCD told us to give her a chance), but again - the things we have gotten used to...we must always take a step back and question ourselves once again. As I have said multiple times on here...for us - her quality of life is a key component. Is going back to a tube part of a quality life? We were between a rock and a hard place - in so many ways.

1. She was eating her food by mouth and tasting all that we were making, but she was coughing and getting tired of eating.

2. She often times, doesn't like to open her mouth.

3. Feeding was taking anywhere from 30 minutes to 1 hour, and often times could only be done by certain people...mostly Dave or myself.

4. She would be going through another surgery, and as part of keeping her comfortable, we're trying to avoid surgeries.

5. Guess who they wanted to perform the surgery? Yes, that doctor. I would never have let that happen, but that office would have been involved, and I would have had to come face to face. Talk about emotions in motion.

6. We've had the tube before and while it's not that bad, we just didn't want for her, or us to have it again...that is - if we could figure out a way to avoid it. In our experience, as careful as we were, they leak, get clogged, the stoma site was a little interesting, and the durable medical equipment department at Kaiser was no picnic.

No matter all these things, because she was struggling to eat, we realized she shouldn't have to - and neither should we, or anyone else who fed her. There had to be a better way!

In the meantime, we decided to have my cousin's daughter start watching Aviana a little bit here and there so we could go to dinner, etc. We could only go between meals though, as we didn't think it fair to either of them to have Sydney feed Aviana.

Thankfully, a lightbulb went off over Dave's head one night. He looked at me and said, "What do you think if we blend up Aviana's food like we used to for tube feedings and have her drink it through a sippy cup?" He went on to say that it would most likely stop Aviana from coughing. Sydney would also then be able to feed Aviana and we would be able to stay out longer. I was shocked! A tube feeding through her mouth?!? What?!? Why had we never thought of this before?!? It was absolutely brilliant! Would it work? It could solve every single one of our problems.

1. She would still be tasting the food through her mouth, but she wouldn't cough!

2. She would probably open her mouth!

3. The feeding time would be a breeze!

4. She wouldn't need another surgery!

5. There wouldn't be any worry of who's doing what!

6. There wouldn't be any tube to worry about! No clogs, leaks, DME, or stoma site to worry about!

* It would add some quality to her life, because she wouldn't be coughing - yet it would at the very same time take some away, as she would be drinking her food : /

We dusted off the old Vitamix and got back to blending! We were excited to see if all this would work for the comfort and ease of everyone involved!

Avi sweetheart...would you like some liquid gold? 

And the verdict is...Avi sucks each meal down in less than 5 minutes! And she doesn't cough. And everyone can feed her with ease now! And, everyone seems much happier about the feeding situation!

Actually, I shouldn't say everyone. There's one certain little pup that's not too happy about the new feeding arrangement. She's no longer in demand. Her 'clean up crew' services are no longer in dire need. I know she'll come around though...she's highly adaptable. I've upped her treats : )

***

We can't believe this didn't dawn on us sooner, but at the same time - I'm just so happy Dave thought this up. 

When I really think about it...it all makes perfect sense to me. It's a strange concept when you're on a full blown mission of recovery and then have to change gears, and scale back on everything! It's almost like you are in reverse, yet moving forward. I tried to wrap my brain around what I just wrote. So yes, it takes time. There's so much that goes into every single solitary decision involving Aviana and her care. It's like cities built upon other cities; so to understand - one would have had to walk all her streets. Isn't that what all of us are like? I have a feeling : ) 

The Food Chain

In December of 2009, we visited The Institute for the very first time. On our first break, we cornered one of the doctors and briefly explained Aviana's accident and how she had just failed her swallow study. We asked him how we should proceed? He quite simply said, "you feed her. If she doesn't use it, she'll lose it." He told us to start off slow and build up. And so we did, all the way until we got her feeding tube out 2 years ago this August.

We started to chop her food up more coarsely, to see if she could handle it. At first she was getting better and better. But then slowly, she began to regress, as with all of her therapy. The little, tiny bit she had gained, she had lost. She always got tired and stopped. As with feeding, she did the same. At the time, we were with her amazing doctor at Kaiser. He was working with us all the way through: with her liver, her feeding, with everything. He was talking with the nutritionist, the feeding specialists, consulting with many in an effort to help us.

At this point, we had also very much so seen the writing on the wall, and realized that Aviana was not making any strides on the program she was on and had stopped. We had very much so accepted our reality, and even enrolled her in school. We were making changes in that general direction, both mentally and physically. But prior to the accident, food was Aviana's number one thing in life. Anyone who knew her, knew the girl loved to eat, and eat, and eat. She loved everything and anything, just give it to her! So food was the one thing we wanted to preserve. In a world full of loss, we wanted for her to be able to taste her food, if we could.

As you all know though, we had problems feeding Aviana. She didn't like to open her mouth all the time, which poses a problem for eating, right!

Her best doctor was bound and determined to help us. He explained how this amazing feeding therapist (outside of Kaiser) would come to our house and perform all these assessments. They would watch me feed her, they would analyze over the sessions, etc. They would come up with a plan. Together, we would figure this out, because he and I agreed, it had nothing to do with her brain injury and everything to do with her behavior. She was exercising her Meekie muscle of control. Everything was going to be put into motion. I was so excited!

Well, along comes the botched liver biopsy, and guess who gets sold down the river...exceptional feeding program and all! US! He pawned us off to a Kaiser pediatric psychologist?!? In email form and all. I was furious. I shot back an email, and he made up some lame excuse. Stick a fork in me, I was d-o-n-e!

I later talked to the psychologist and very respectfully asked if he'd ever worked with a brain injured child like Aviana before, but furthermore - one with these sorts of feeding issues. I further explained that I didn't want to waste his time, or mine. He turned out to be one of the most amazing people I've ever talked to at Kaiser. He told me he had looked through our whole file before talking to me. He knew everything and had first apologized for our accident and all we had been through. He then asked how everyone was doing. He went on to say he had never seen parents go to such extremes for their child. He heard me out about all that was promised in regard to the feeding program, and then after the failed liver biopsy how I was automatically transferred to him. He said how sorry he was, and how he understood exactly what happened, "we were promised a Mercedes, and drove off in a Yugo!" He then said with all our knowledge, and all we had been through in the feeding department thus far, he did not believe he could be of any help to us and didn't want to waste any of my time.

I had a nice, long conversation with him...it was more like talking to a friend than anyone else. I so appreciated his compassion and honesty.

After I realized Kaiser would be of no service to us, I was at a loss. I soon turned to you for help in the feeding area. I tried everything you all told me. Some worked for a while, but as with everything...Aviana grows tired of the routine.

I have unintentionally gone on too long...I'll be back with Part 2 of this story : )

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.