Tuesday, September 28, 2010

{Pee Pee From Heaven}


Amazing things happen in our little minivan -- lots of conversations between Madison and I that not only help pass the time but gives me an amazing glimpse into her little mind.  After Gavin died Adam and I had to make some crazy decisions that we were not prepared for -- things that parents just don't ever think about.  We were asked by the funeral home to provide some clothes for Gavin to be buried in.  This took Adam and I completely off guard.  First of all -- we choose not to see his body again after we said our last goodbye at the hospital and second -- Gavin never really wore real clothes.  He was a shirt and baby legs kind of kid --- and I didn't really want to give any of his clothes away, where I could no longer hold them up to my face and try to smell my little boy's scent.

Never the less -- we picked out Gavin's red long sleeve tee and his black rock star baby legs.  After the funeral director left, Adam and I kinda laughed because we wondered if the guy even knew where the baby legs went and if he was wondering where Gavin's pants were.  Did they put a diaper on him?  Our family has since always smiled at the thought of our little boy running around heaven in his red shirt and babylegs with his little butt sticking out!  

So now that this week has brought some much needed rain it has also sparked, once again, some amazing conversations about Gavin up in heaven and how he doesn't have any pants on and he certainly must be peeing on us -- that's what all this rain is.  

I know it sounds kinda crazy, but it's the little things like that that helps Madison and us heal.  It's the thought that God has healed our little boy -- spared him from a life of suffering that makes us smile.  'Cause after all, Gavin couldn't pee here on Earth -- so pee from heaven is certainly something to smile about.  

Monday, September 27, 2010

{Never Lose Hope 5K Recap}


This weekend was the first annual Never Lose Hope 5K run and fun walk!  Thanks so all the people who came out to support us and help us remember our amazing little boy!  We had a decent turnout for our very first year -- and a very small planing committee.  I think the total number of participants was around one hundred twenty five.  Not to bad.


No matter our numbers -- this day was so special to Adam and I.  Just taking some time to honor the life of Gavin and remembering what he taught us in his short three and a half years of life truly meant the world to our family!


The money raised will be go towards the debt that was accumulated when our home was renovated for Gavin.  The money is not going towards us or our mortgage -- just the contractors and various others who donated there time in advance before the funds were actually there.  To those who are not familiar with our story, Gavin never made it home to this house but rather died that same day as the house was completed.


Even though this was obviously not the expected outcome, our little home has provided us with a fresh start and holds the sweet memory of our son.  Now, in true Gavin spirit, we will be able to take advantage of all the handicap accessible features in this home to help give another child an awesome life!



A percentage of our proceeds will also be given to the United Mitochondrial Disease Foundation -- in hope that one day treatments and eventually a cure can be found for this horrible disease. 

Thanks again to everyone who helped make this a day filled with hope and healing!

Thursday, September 23, 2010

{A Different Way of Doing Things}


I've felt this huge relief to finally be able to talk openly about our upcoming adoption.  We are so happy and words really can't even begin to describe how excited we are to soon meet our baby!  When we started this process early this year we went through major changes in our mindset on just how a family becomes a family.

We humans don't deal with change very well.  We are serious creatures of habit and so many times we assume that just because we haven't done it this way before -- it's a less beautiful experience, or it's way more difficult.  We often miss out on so much joy and excitement by limiting our world -- limiting God.

Adoption is different.  I never had to be FBI fingerprinted to give birth to my children.  I felt amazing experience of my babies move in my belly and knew about when to expect them and if they were a boy or girl.  Different is just as amazing.  


This past week we received news of our first possible match.  I'm not going to go into detail on the child, simply because it's just a possibility.  This is one way this process is so crazy.  I was given two photos to look at.  As  a mommie it's so stinkin' hard to look at this beautiful little one and not see my baby -- not dream about the incredible future we could give this child -- but I'm trying.

Gavin's life prepared us is so many ways for this process.  One things our little boy taught us was the incredible peace that can come from fully trusting God -- trusting him in life and also trusting him in death.  Adam and I fully trust that God already is preparing our little child -- and when the times comes he will make that child available to us!

Thanks so much for coming on this journey with us -- supporting us with your encouraging words and prayers!

**These are old photos from last year -- my little girl has grown so much.

Monday, September 20, 2010

{Exciting News -- You Don't Want to Miss}

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Have you ever had that feeling in your gut that let you know that you were right smack dab in the middle of somthing amazing?  Adam and I have always had a special comfort and peace in knowing that our lives have been set on this amazing path -- not left to navigate on our own -- but rather intricetly orchestrated by God through our seasons of life.

We have lived an amazing life together as a family.  We have two beautiful children who each in their own way was given a special gift to touch and teach this world the meaning of true life, beatiful peace and amazing hope!  After Gavin's death Adam and I felt that Gavin left behind a special gift for our family -- the ability to continue on.  Our family will never "get over" or "move on" from the death of our little boy.  Rather, we choose to continue on with life, holding his memory and legacy deep in our hearts.

Gavin also left us with another amazing gift -- to care for another child.  

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Adam and I are so extremly happy to announce that the Owens' family is growing!  Adam and I have been in the process of adopting a beautiful little one to join us on this crazy cool life we call our own.  We are doing a domestic adoption, taking a child out of the foster care system and giving them a chance at a wonderful life.  We will be taking a child under the age of 3 with special needs, not as intense as Gavin's, but a child who needs a family just like us.  

Madison is so exctied!  She is very ready to have a sibling around to play with and grow up with.  We certianly have taken Madison's needs into consideration when deciding on what level of care our new child will need.  

We have been in this process for about seven months and are exctied to begin to share this part of our lives with you all!  To be very honest we have been very anxious about sharing this news with the general public.  Mainly becasue, one thing that we have learned throughout our journey, is that it can be very difficult for people to truly understand our lives through reading the pages of a blog.  We fully realize that not everyone will be able to understand how this will work for us.  To be honest, before I walked in my current style shoe, I may not have fully understood.  Adam and I have prayed, talked and utilized the supports around us to come to the descision that this was right for our famiy at this time.  And yes -- we are so stinkin' excited!

Adoption is an exciting process.  It's a beautiful process.  It's also a God directed process.

We are finished up our home study and will begin the matching process in the next few weeks!  Once we are matched with a child, which will be done by looking a children's profiles given to us by our social worker, we will then begin to process of bringing our little one home!

As a mommie, the thought that I have a child is waiting out there just for me, is breathtaking. 

To think that God has already choosen another sister or brother for my little girl totally blows my mind.  

Having faith that God is directing our steps, just like he has all along, brings so much peace to this process.  

Our seat belts are fastened -- we are ready for our next huge adventure!

Sunday, September 19, 2010

{Mito Awareness Week Begins}


Did you know that this week in September in Mitochondrial Disease Awareness week? Most likely the answer is no -- not because you choose not to care, but rather like so many other rare diseases you’ve just never been exposed to this life -- this reality.
I remember back in 2005 when my little girl Madison was born.  My world was filled with nothing but thoughts of my sweet baby and the life that she would live.  I loved watching her grow -- hitting her milestones and making mommie and daddy so proud.  
I never realized that while we were living in our healthy world other parents were watching their children die.
It’s a harsh reality.  When you enter the world of degenerative and terminal disease, it’s like stepping in an alter reality -- where everything that you once knew to be right and logical, somehow gets turned around.  It’s a world filled with suffering, dreams never fulfilled, and futures never lived.


In 2008, when our son was diagnosed with Mitochondrial Disease it was sadly to late.  We were told that the disease had progressed to the point that there was nothing more that could be done.  Our team of doctors switched focus over from searching for some kind of treatment that would work to giving our little boy the quality of life is deserved -- this sadly meant that his life would soon end.
On November 8th 2010, we watching the Mito take over his little body.  Although nothing can take away the pain of loosing our sweet Gavin, the thought that our son was no longer fighting this horrible monster brought peace to our heart. The monster of Rare Disease is big -- bigger than any child or adult should ever have to fight.
Gavin was 3 years old. 
Before I entered this crazy life I never realized that doctors actually utter those words, “there is nothing I can do.”  Most of us assume that if we take our children to the Hospital they will be fixed.  Sadly so many cures are yet to be found.


“There are currently just over 7,000 rare diseases identified, affecting 30 million people in the US alone. Although these numbers are staggering, what is of even greater concern is that approximately 75% of those affected are children, making this disease category one of the most deadly and debilitating for our country’s children.”
But there is hope.
The Global Genes Fund has been accepted to participate in the Pepsi Refresh Project, September 1 – 30 in the category amount of $250,000. Money raised through Pepsi Refresh Project voting contest will help build a funding platform to help speed-up rare disease research by easily connecting rare disease groups and foundations with financial supporters.


There a millions of children still fighting right here in our country.  
Click here to vote or text 102614 to Pepsi (73774)

Wednesday, September 15, 2010

{Show and Tell}


There are many things that we face as a family who has not only walked the journey with a chronically ill/terminally ill child, but also as a family who has lost a child.  Something we just bring a different perspective to -- this is really starting to more obvious as Madison has started school.

When Madison started school she not only started a new season of her life but also begun a new season where no one knows about her past season.  This has so many positives, like a fresh start and opportunity for new experiences, but also can hold a few challenges.

Today Madison had show and tell.  The topic was all about me.  Wow.  Madison has a pretty big story to tell right now.  The death of her little brother is still rather fresh and I'm sure she is at a point in her life where she feels rather torn between holding on to her grief and also letting go just a bit and making new memories and a new life still remembering her brother but allowing other experiences to enter her world.

Last week she insisted on bringing a photo of our family from our Now I Lay Me Down To Sleep session, just before Gavin died.  Even though these photos are so very special to our family, they obviously are not appropriate for a class of five year olds!  I talked her out of it and we decided on a more appropriate family photo, a photo of Gavin and her, a snow globe and a stuffed dog.

This a a big day for her.  I wanted to be sure she felt that she could openly talk about her family, on whatever level she wanted.  I contacted the school and her wonderful teacher made sure the guidance counselor was there to support Madi as well as the other students.

I received a call from the school this afternoon saying she did great and that the other kids in class asked great questions and Madi did a great job answering them.

Next hurdle will be the science lesson on nature -- what is dead and what is alive.  The teacher talked about this in orientation and Adam and I just looked at each other and smiled! 

Friday, September 10, 2010

{The Day Zoe Died}


Yesterday was a day to remember in our household -- yesterday our little fish Zoe died.  If you know me personally you probably know that I am not a pet lover.  I once had a dog named Amy, who I considered my best friend, but once she barked her last bark, I never re-entered the pet loving community.


There was just something about this stupid fish that made yesterday a challenging day.  We purchased Zoe a little over three years ago when our life was lived more within the walls of Dupont Children's Hospital than in the outside world.  Adam and I thought Zoe would be a great addition for Madison, something she could call her own, something special for her to talk about other than her sick brother.


Zoe just like Gavin lived a crazy life.  This fish lived week after week with no food or clean water.  A few months after Gavin died Zoe stared doing crazy things like floating on the top on the water on her side.  She couldn't swim if we fed her, so we only fed her every few weeks.  We prepared Madison that Zoe wasn't looking very good and she may soon die.  To our surprise, Madison was very excited about this.  At first she insisted that when Zoe died we would go burry her next to Gavin.  Later she began working on a grave site, as she referred to it, in our back yard.  But then Zoe defied fish world odds and started to perk up and swim again.


Until yesterday when I found her at the bottom of the bowl.

Like I say in almost every post -- Grief is a crazy thing.  It literally sneaks up on you in the most unexpected ways and times.  I looked at that fish and my heart sank.  Madison had a tough night prior and insisted on sleeping with a 8 by 10 photo of her little brother.   This was just bad timing for another death.


I love how God takes unexpected moments, and chooses to have us just experience emotion.  I think I needed that yesterday.  Feeling sorrow is extremely healing -- having hope in the moment of sorrow is even more healing.  Knowing God listens to my pain and then helps lift my head again -- simply beautiful.

In the end I went out and got a replacement Zoe. Not my typical parenting style -- I'm normally all for teachable moments.  


But not right then.  

That was my teachable moment.  After all, it's not like my little girl hasn't had her fair share of loss.

Wednesday, September 1, 2010

{First Day of School}


The day has come and gone -- Madison's first day of Kindergarten.  It's kinda crazy where I am mentally and emotionally at the end of this monumental day.  I am so proud of my little girl.  I looked at her this morning and I saw a beautiful little lady -- perfect in every way, even in her imperfection.  I saw my baby who not so long ago I held in my arms -- fitting perfectly in the bend of my arm.  She has grown in so many ways.




Grief is a crazy thing.  It seems to sneak up at the most unexpected time.  As we prepared Madison for her first day of school I couldn't help but be constantly reminded that we were supposed to be doing this as a family of four.  I know Gavin was totally watching her get on that big yellow bus and probably -- most likely,  totally freakin' out and kicking his skinny little legs with excitment up in heaven!





I have lots of wonders about this upcoming school year. This is just a weird place in the journey of parenthood.  Today was the first day that I was not in complete control of my child's life.  Giving up control is a difficult thing for this type A Mommie.  As scary as it is -- I guess amazing freedom can be found in giving up a little control -- pushing her a little further out of the nest and trusting that God will give her a safe landing and show her the most spectacular view on the way to her destination.




Ok -- here we go.  One day down, Oh so many more to go!