Friday, November 09, 2012

Special Needs Spotlight: Aviana



I’m sitting, staring, and thinking back to these two people I used to know.

They were young, spunky and in college, meeting for the first time, only to be married a few years later.  The two were fierce, but unknowingly naive in thinking they could plan out how many kids they wanted, and about how far apart, to boot.

The two, of course, were us and we ran straight into a wall of reality in the form of infertility.  We later chose to adopt.  But after surviving that long process, and some pretty weighty bonding issues for me, our daughter was hit by a car and ended up severely brain injured.

So this is our story, the real one, as opposed to the sucky fairytale alternate that has a habit of sometimes running in our heads and wreaking all kinds of havoc.

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Miggy:  Jen you have a unique special needs story.  Many special needs stories begin at an ultra  sound, at birth or a few months later as life unfolds.  Your story starts with a car accident.  Can you take us back to the day of the accident, the day your life changed forever?  When did you know this accident was going to be life-changing and how did you cope?

Jen:  Our daughter Aviana was out with my mom and stepdad for the day while I was out shopping for her 3rd birthday party decorations.  I had forgotten my cell phone in the car, and when I got back, I had numerous missed calls.  The first was from my mom, and when I checked the message, I heard the most animalistic screams telling me that a car had hit Gary and Aviana.  But it was when the nurse simply asked if I could make it to the ER and wouldn’t tell me if they were ok that I knew something was drastically wrong.

Once at the hospital, the doctor came in and told us Gary was battered and bruised from head to toe, but that he was going to be ok.  He said Aviana wasn’t going to make it and that she had taken the full impact of the accident to her head.  He said her brain was swelling rapidly.  He then explained that, as a last ditch effort, they could remove a piece of her skull, but they had to move quickly, and needed an answer right away.  He explained once more, that she would have severe brain damage and he wasn’t sure she would survive the surgery.  I wasn’t sure what to do, so I called my husband.  He happened to be working in Tahoe that day, so we made life and death decisions over the phone while he was speeding down the freeway.  We decided to tell the doctor to go ahead.  She ended up having two pieces of her skull removed at that hospital.  Once stable, she was life flighted to our local Trauma 1, and had another piece removed the next day.

I coped the best I could.  I was initially sick to my stomach because my first thought was; “Wow…we’ve finally come so far on this whole parenthood journey and now this?” I knew I needed to try my best to focus.  I was being pulled in so many different directions.  Our daughter had just been through a horrific surgery, and my mom and Gary were absolutely beside themselves with guilt and grief --I felt an overwhelming desire to protect them from everyone.

My husband and I banded together as one, and learned everything we could about brain injury and what decisions we should make for our daughter.  It was the best way we knew how to cope.  Along with that, all four of us got ourselves into counseling right away.


Miggy:  How does Aviana's TBI affect her and your day-to-day life?

Jen:  Aviana’s brain injury affects many aspects of our day-to-day life.  It fires on every level.  She is unable to crawl, walk, or pretty much move at all, so she relies on us physically for every one of her needs.  Mentally, a brain injury is an interesting thing to keep up with.  At first it was a huge learning curve medically, but now it has transformed itself into a conglomeration of school, therapy, nutrition, feeding, doctors appointments, and most importantly - keeping her comfortable.  I think the emotional aspect can be the most difficult though.  It can sometimes be really hard to sit and stare a brain injury of this magnitude in the face all day long.  If you let it, it can easily eat you alive, so we try to focus on the positive, love her the best we can, make the most of it, and realize our lives really could be much worse.



Miggy:  What are the biggest worries you face for Aviana?

Jen:  When the accident first happened I was a serious worrier.  Those first weeks in the hospital, I was a one-woman firing squad.  I quickly learned that with brain injury, there are no answers.  So, rather than being completely miserable all the time, we were forced to learn to cross every bridge when we come to it.  We don’t think much about the future at all, as it proves to be a waste of time, and energy.  If the thoughts come to mind, we shut them down pretty fast, as it is not worth thinking about now.  But the ones that do enter our mind only to be deflected are:  How are we going to manage to carry her when she gets bigger?  When is she going to die?  She has an unrelated liver problem on top of her brain injury, and due to that is unable to have a transplant, so when is her liver going to fail?  These are just a few examples of future bridges to be crossed.


Miggy:  Now for a lighter question, have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Jen:  I’m sure, as others do, we have many.  Off the top of my head, our daughter doesn’t really look injured; so many people in public often think she is just sleeping.  Because she’s still in diapers, we sometimes need to check it, so we don’t ever think twice about just grabbing her crotch.  I’m sure when people see us, especially my husband, do this in public, to a 6 year old little girl…they are wondering what the heck is wrong with us?!?


Miggy:  How can people best approach or respond to your child? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Jen:  I think the best way to approach Aviana is with love.  She understands what people are saying to her, and about her.  She receives love just as we all do; she is just unable to respond like most all of us do.  We have been fortunate in never having anyone saying anything hurtful to us, but yes, I think this can be a very awkward situation for everyone.

I honestly don’t think these types of situations can be avoided though, but I do think we can talk more about ways to handle them when they do happen.  I think it’s only natural for people to be curious.  Because it’s not something people normally see everyday, they may say the wrong thing, because they simply don’t know what to say.  And I think that’s okay.  Maybe it’s best to just use our situation as a learning opportunity for all of us, and remember to be gentle with each other.

Our daughter has seizures in public, where she is drooling and sometimes makes loud noises.  While it is sometimes sad for me, as it is yet another glaring reminder of what we lost that day and what she once was, when people look on, I’m sure it is more with compassion and concern for all of us, than anything else.


Miggy:  What is the biggest lesson you’ve learned since Aviana's accident?

Jen:  I try to be as mindful as possible.  I try to take notice of everything… from the very small, all the way up to the big.  And when anything good, or great is happening, like a bloodthirsty mosquito, I suck every ounce out and bottle it up, as I know full well that on a dime, things can change and we can be in hell once again.

I also try to laugh as much as possible.  We try not to take ourselves, or our situation to seriously around here.  My husband and I joke about it as much as we can, as that is what has definitely carried us through some of the roughest time of our lives.


Miggy:  From infertility to Aviana's accident, you've had a lot of challenges on the road to parenthood, yet (from what I can tell) you seem very at peace.  Did this come all at once, do you still struggle with it...in other words, what have you learned from these experiences that the rest of us could benefit from?

Jen:  It definitely has not come all at once, and we are surely a work in progress.  We are at a point now where we are better than we have ever been, and for that I am grateful.  But I know this process well by now... and it ebbs and flows.  It has been close to 3.5 years and our daughter has shown little to no progress.  Acceptance was definitely a bitter pill to swallow.  Once we learned to love her for who she is and began to accept her beyond the progress she was or was not making, we were able to live again, and our lives were much more fulfilling.  I’m not saying it isn’t still hard at times, because it is.  What I am saying is ~ it was a complete and total paradigm shift.  We now look at her in a different light. Rather than dragging her back and forth across the country, and through this therapy to that, and all the while wondering which we will move onto next, there is a newfound peace within our household.  She is now our little Miki Feek. Our little girl.  The one we love, hug, and kiss on.  With her, we have finally found a much-needed balance…one we will never lose sight of again.

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Oh Jen, I don't even know where to begin...that was amazing.  Not many families could rise so beautifully and gracefully out of the ashes of such a tragic accident.  So much wisdom in what you wrote.  One of my favorites lines: 'Once we learned to love her for who she is and began to accept her beyond the progress she was or was not making, we were able to live again, and our lives were more fulfilling.'   Once again I just feel so much love for a girl and a family I've only met through the internet.  Thank you so much Jen.  It was a pleasure.  
To read more about Aviana and her incredible parents check out their family blog here.  

Again if you or anyone you know would like to be featured in the special needs spotlight series please email me directly at thislittlemiggy at gmail dot com.  

Have a great weekend.          


12 comments:

  1. Anonymous9:39 AM

    Wow. Jen, you are my hero. Seriously - and not because of the tragedy of your story and your amazing grace in facing it everyday. I have been through the infertility, and the adoption, and very very different difficulties with our child, but I identify with so many things you wrote, and feel so inspired by your thoughts. Thank you. God bless you.

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  2. WOW. I feel truly inspired, humbled, and in awe. Thank you for sharing your story- I will think of your words often. Thank you for shifting my perspective too... your strength is a gift and it blessed me even though I'm a stranger to you. I wish you blessings, hope, love, and light.

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  3. Anonymous4:23 PM

    Your daughter is so beautiful!!!!Amazing story and such wonderful parents. God Bless you all!

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  4. Thank you for sharing your story. It's a true tale of love.

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  5. AMAZING story. And an amazing family! Thank you so much for sharing =)

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  6. What a beautiful, amazing, and inspiring mother (and family). Thanks for sharing.

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  7. Anonymous7:06 PM

    Thank you for sharing your story. Your daughter reminds me of mine, brought tears to my eyes. Many prayers for beautiful Aviana.

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  8. Anonymous9:35 PM

    Aviana, a daughter of the King. God is with you in this! What an amazing conversation you will all have together in heaven someday. "When we all get to Heaven, What a day of rejoicing that will be!" This pain is temporary. Thank you for loving her. It helps all of us love our children more! Lean on Him. God loves all of you!

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  9. Thank you all for your comments, I appreciate them more than I can put into words : )

    ***

    And Miggy....thank you so much! I feel the very same way about you, and your family. When I heard about your blog, I was at first looking around to see if this was a place I wanted to share our story. I found you to be honest, straight forward, true to your feelings, but yet dedicated, inspiring, and so incredibly loving. So it was then that I thought this the perfect place and asked you : )

    You are doing such an incredible thing here, bringing us all together, creating a place of somewhat commonalities in a world where we can often feel otherwise isolated, while at the same time opening us up to new and different ways of thinking about things.

    I hope you don't mind if I do the same sort of thing in the future on my blog, and I'll invite you as my very first family if you'd like : )

    My love to you ~

    Jen

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    1. Jen--

      Thank you so much for your kind words. I really do love doing this spotlight--it's been a blessing to me and I hope to others. Yes, of course I think that would be great to do a version of this on your blog and I'd be honored to be a part of it. Even though I have my blog, I still love sharing our story. Just let me know and I'll be there. :) Hugs to you. And thanks again for your fantastic spotlight.

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  10. I "met" Jen online after the accident and after she started blogging. I've had the pleasure and great fun to see her twice even though we live about 10 hours apart. We talk on the phone and I can assure you she is one of the most HONEST, true, funniest, people I've ever met. Aviana is just the sweetest girl and my daughter, also from Guatemala, talks about her all the time and asks when she can see Aviana again. Jen, Dave, Aviana and their families are so amazing and again, just so HONEST!!!! She can make me laugh so hard at some of the dumbest things and that is what I consider a sign of someone who is so strong and can handle things you never thought possible. What you see is what you get with Jen and I love her dearly.

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  11. loved this. her attitude towards others' staring or saying the wrong things was so encouraging. i can't imagine how it feels, but being on the other side, i know it's so hard to know how to be kind and not offensive to people who aren't typical. i love her words "remember to be gentle with each other" and "when people look on.. i am sure it is more with compassion and concern"
    what a great attitude!
    i hope to be better at giving people the benefit of the doubt.. thank you!

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