Audrey Update: One Year

by Ashley on August 20, 2014

in Audrey, Me

Jeremiah 29 11-12 (6s)

For 5 years I’ve waited to write this post.  I’ve dreamed of it, written it in my mind, and anticipated its “publish” moment, which I’d planned to be Monday evening.  It’s good, it’s (mostly) positive, and with all the thought that I’ve put into it, it should be easy to write….

but it isn’t. 

Instead, I’ve tried 5 times over and each time I do, I end up in a mess of tears.  Sometimes they’re spilling down my cheeks, other times I feel like they’re falling from my heart drowning the breath right out of me.   

I’ve been trying to figure out why it’s so hard to put everything there is to say into words.  The best I can figure is that it’s this weird blend of relief, joy and fear – what if I put it into words and then…the walls come crashing in and take the good away.

I’m a rational, God loving, woman of faith, who knows better than to believe that saying it out-loud will make it go away.  I don’t believe in “knocking on wood” or “Murphey’s law” (Ok, maybe I believe in that law…just a little) and know that this won’t change reality but there is a massive part of me that’s afraid that it will.  That the enemy of my soul will take my words, smash them up and smear them in my face.

I’m not going to let fear win though, I refuse to live in the negative “what-ifs” of our future and let it destroy the beautiful “here & nows” of our present.  So I’m going to swallow back the urge to barf everywhere  take a HUGE breath, and jump

For the first time, we have reached a 1 year hospital milestone for our Audrey!

Update 1 year - Audrey tooth

Monday, August 18th 2014 was exactly 1 year from the last time I awoke, in the wee hours of the morning to the wails of a fever ridden, sick little girl.  One year from the last time I drove in the dark of night begging God for our safety, for my baby, since the last time we were admitted for tests, IV’s and medicines.  In 2 days it will be 1 year since the last day spent, an admitted patient in a hospital.

There are scarcely words to express how saying that, knowing that feels.

Update 1 year - graduate

Audrey’s health journey is far from over, I know that.  There are still issues and concerns we face on a regular basis (see update below) but this milestone feels HUGE to me, to us.

For the first time in 5 years I feel like I can actually dream of a future for Audrey that doesn’t include hospital stays.  I can hope for answers or miracle cures, that will allow us to move on.  For a day when I won’t look at her with suspicion of what’s under the surface, or touch her face in the night with trepidation that her skin will be on fire.  For something other than what it’s been since she was 10 months old.

Hope.  That’s what it is, pure, beautiful hope – something I’ve felt void of for so very long! (and then there were more tears)

Update 1 year - silly sisters

So now, for the update:

The Good – on a daily basis Audrey is doing well.  She’s spunky, filled with laughter, life, and words, so many words (this sister can out talk her Mama, a feet many deemed impossible….).  She’s reading, and learning new skills daily and ready to start Kindergarten.  There are teeth falling out, and new ones quickly coming into replace them and her hair is finally growing in at a normal rate.  The last patch that was thin, with a little baby hair from the last time it fell out has grown out, being replaced with beautiful “big girl” hair!

The Not so Good – There are still days Audrey is SO pale, her energy lagging & unusual lethargy sets in.  She is growing in height (WHOOT!) but still losing weight.  Her appetite is back to normal, if not a bit increased but we can’t seem to get her weight up.  Her urine also still gets the mysterious smell, which has a few times now migrated to her skin.  One morning in particular the bizarre smell coming from her body was so pungent it had permeated her sheets, bed protector, clothing, hands, and hair.  It took a long shower & wash to get rid of the worst of it.  At her last blood test most of her numbers had improved (!), some still concerning and her immune markers were dropping.  Not what we’d hoped for but MUCH better than what they were. 

As always there are no explanations for us as to what is happening and for the moment, while I have calls into different docs we have no appointments waiting.  We’re in wait and see, watch and record mode – who knows what her body is going to do, good or bad.

Today though, I’m going to relish this moment, the ability to write this post and the hope that I have that God is good – no matter what the outcome is.


Thank you for all of your prayers, love and encouragement over these years. To the friends who have listened to me go over and over all that is happening with our girl (I’m trying to not talk about it any more, I know everyone gets tired of hearing it) and who are encouraging us on this journey.  We love and appreciate you all!

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Disney Princess Girls

I am SICK of hearing about how Disney Princesses are the reason that millions upon millions of girls & women suffer with self esteem issues.   Women around the world are griping and complaining that these figures & dolls, with their “perfect bodies*” are unrealistic and make our daughters feel less than, ugly, fat (you KNOW how I feel about that word) – unworthy.  But here’s the thing….

No.  They don’t.

Have you ever noticed that the women complaining are simply that – women.  They are people of many shapes, sizes & ages who’s hearts, bodies & self-esteems have been damaged over the years by the media, the vicious voices of others and the “perfection propaganda” swirling around constantly whispering “You’re not good enough, you’ll never be good enough”.   And now as grown women they’re looking at these characters with the same critical eyes they look at themselves with. 

It makes me sad, none of us should ever look at anyone, especially ourselves the way that we do.  We’re all worth more than the horrific things we say to ourselves (trust me I know, I say them too) – but Disney didn’t put those words in our heads…..we did, the “real world” did.

Now, turn around and look at your little girl and see these characters through her eyes. 

Do you see it?   The wonder, the awe, the inspiration? 

I do, here let me show you…

Belle isn’t teaching our girls to be a victim, oppressed by the hand of man (as is often implied).  She’s teaching them to look deeper than a person’s outward appearance, to replace cruelty with compassion and when you do, you’ll get a chance to see their hearts.   

Ariel isn’t telling them to be rebellious and sneaky, battling for a man’s attention at all costs.  She’s showing them someone like them, someone with dreams and curiosity, someone who sees the beauty in new things, in other worlds.  Her story also shows them that sometimes we make poor choices, and that our parents will always find out (because we will always find out) and that comes with consequences.  Push come to shove though, no matter what we’ve got their backs, because again we will always have their backs.

Merida teaches our daughters that women can be strong, independent and brave.  Merida lets them see that a lady can be both polished (it’s a work in progress) and adventurous – we don’t have to choose one or the other.  They see that we don’t need a man to be OK, we’re strong for who we are, not who we’re married to.   

My best part of Merida’s story is her relationship with her mother.  Let’s face it, if you’ve birthed daughters then you’ll know the mother/daughter dynamic is like nothing else.  As our girls watch their story unfold they see they are not alone – everyone has battles with their Mama from time to time, it’s normal and it will be OK.  Even, when you think you’ve done the worst thing possible, the smoke will clear and she’ll still be there.  You’ll forgive each other and move on because that’s the part that makes us so unique, our love & our bond run deep.

Anna & Elsa aren’t just princesses – they’re sisters and they’re hurting.  As the music captivates the audience (and the soundtrack makes mothers’ ears bleed…), and teeny Anna begs her sister, “Do you want to build a snowman” our girls not only fall in love with her sweetness, they start to feel a connection to the sisters.
Every little sister has a moment she feels the bond with her big sister begin to change, when the “best friend” dynamic starts to melt into their individuality and when the loneliness sets in.  Alternatively, the big sisters know the pain of that change, feeling their bodies, their lives becoming something new, uncharted and even scary in a way that can drive a wedge between sisters. 

Then our daughters see it, the message, the thing that I want more for my girls than almost anything else – loyalty, family, love.  If we teach our children nothing else in this life I want them to know that not only do Corey and I have their backs, but that no matter how dark, how scared, how alone they feel they will always have each other.  Elsa & Anna did an incredible job of showing them exactly that.

These princesses our girls love so much are teaching them to be compassionate, adventurous, and determined.  They’re giving them glimpses into the consequences of poor choices and the forgiveness of a parent.  They allow them to be strong, independent and courageous, and remind them that when all else fails, and your world is shattering, your family, your sister (brother fits in there too…trust me I have one) will be there to help you pick up the pieces.

Disney isn’t teaching our girls they’re unworthy, ugly or fat – instead I think Disney is doing quite the opposite.  They’re walking along side us, helping us to raise joyful (just listen to your 7 year old belt out any Disney princess tune, you’ll find her joy), confident girls who hopefully will maintain some of those beautiful values as they grow into powerful, strong women.

(*Perfect is all relative and seriously, I’d like to talk to whomever it is that decided that a plastic perma-panty wearing doll was a perfect body?)**For disclaimer sake – this is in no way a sponsored post.  Disney doesn’t have a clue who I am, and they certainly didn’t ask me to write this.  It’s my heart, my soap box and my voice, alone. In case you were wondering**

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