I’m sitting, staring, and thinking
back to these two people I used to know.
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.
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.
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.
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.
***************
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?
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.
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.
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.
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.
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?
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.
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?
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.
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?
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?!?
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?
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.
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.
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.
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?
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.
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.
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?
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.
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.
***************
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.
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.
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.
Your daughter is so beautiful!!!!Amazing story and such wonderful parents. God Bless you all!
Thank you for sharing your story. It's a true tale of love.
AMAZING story. And an amazing family! Thank you so much for sharing =)
What a beautiful, amazing, and inspiring mother (and family). Thanks for sharing.
Thank you for sharing your story. Your daughter reminds me of mine, brought tears to my eyes. Many prayers for beautiful Aviana.
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!
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
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.
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.
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!