National Rare Disease Day 2010...

Today is National Rare Disease Day -- millions of children are born with what is considered a rare disease.  Mitochondrial Disease is one of those rare diseases that steals the lives of children and adults everyday.  We hate Mito -- it took our little boy away.  Take some time today to learn about this rare disease.  Visit the United Mitochondrial Disease Foundation and learn not only about the disease but also the hope for a cure and of course see our beautiful little Gavin's smile on the homepage.

Even though chances are most of you reading are lucky enough not to have to deal with the effects of a rare disease -- fact is so many children and families are suffering.  Rare diseases are horrible.  One thing that makes them so horrible is that unlike cancer and heart disease, these families struggle to find community -- struggle to find people who can identify with them, who understand.  Take a moment today and say a prayer for all the families struggling to find hope.  Many of these illnesses have no cures and no therapies.  These families get a diagnosis and then spend countless hours sorting through the mystery of their child's illness.  It just stinks.

My Story...

This week I was able to share my story at the Ladies Night at Morning Star Fellowship.  It was a great night and I'm thankful for everyone who came out to hear my journey.  I was talking with a friend this week about how it's hard for me to think of what my story actually is.  

We all have a story -- some of us novels and other's nice short books.  I think our stories change as we live our lives.  What defined us ten years ago might not really be that relevant to out current story.  Not saying that the first chapters don't matter, as they really are the basis of our book, but for me my current chapter seems to be standing out as the main plot in my story.  

I'm finding it hard to actually be able to tell my story -- not because it is too painful but rather because I'm still learning what my story actually is.  I'm in the process of learning the real plot as it seems my life has taken an unexpected turn. Nevertheless I'm excited to see just where God takes my family over this next year.

I played this video to help tell my story and thought I'd share it with you.  Enjoy.

The Cold Steel Shovel....

This week has been so crazy.  I have had so many blog posts running through my head but I just haven't had the strength to actually get them all typed out.  You see -- this week has been very difficult for our entire family.  This week feels like we were all hit in the face with a cold steel shovel -- a little somthing we call grief.

As I have mentioned before, it's very crazy how grief just seems to sneak up out of nowhere.  We will be doing just fine and then all the sudden we are oevrwhelmed to the point of feeling paralyzed in sorrow, our guts churning with pain and grief.  It's a process.  A process that must happen.  I was reminded once again this week that grief in not a condition -- there is nothing to fix.  In fact the process has to happen in order to find healing.  The process looks diffrent for everyone.  For our family, we seem to find peace and joy on most days and then there are times like this past week that our faces our slapped with reality.

As I sit here looking back over this past week I am once again remined that although grief is a difficult process there is also so much beauty to be seem.  Grief is an oppertunity to receive the overwhelming grace and love that only God can give.  This week we began to throw up all the deep pain sitting in the depths of our souls, crying out all of our intense sorrow.  As more came out it allowed room for the healing to come in -- the more that came out the more that could come back in.  It's seems to be a cycle, and when we have gotten it all out we are once again starring face to face with a loving a gracious God who has never left our side during this entire proocess.  Who's love and arms have never once loosned their grip on our lives.

And then the cycle begins again.

I'm not sure how long this lasts -- maybe a lifetime.  The pain hurts but it is also a reminder of my deep love for my little boy, a love that I never want to forget. One thing I know is for sure, that even when my sorrow and pain at times hides His face -- He is still right there, He never once will leave my side.




Photo Credit: Ryan Estes -- Now I Lay Me Down To Sleep

Erin's Dream and Pepsi...

Pepsi is giving away money to help fund the great ideas of people across the country. Please take some time and vote for Erin's Dream to build a resource house for family who have lost children.  To remind you Erin's Dream helped make create Gavin's House -- our current home that was renovated to be accessible for Gavin and his wheelchair.  

Erin is a wonderful women with a big dream.  Help make Erin's Dream come true and help other families like Erin's and our own who have lost our sweet little ones.

For more information on Erin's Dream click here -- to vote click here.

Happy Birthday Madison!

I can't believe my little girl turns five today.  Did I ever tell you just how amazing this girl is?  She just really is a very special little girl and for those who have spent time with her will most likely tell you the same thing.  She has endured so many things in her short little life some which have left scars and battle wounds but there also is so much joy and excitement for life that overshadows all the pain she has witnessed.

I will never forget a day about a year ago, when Gavin was in some sort of crisis at home.  I remember the feeling of panic that was rushing through my body.  I yelled for Madison who came into Gavin's room and asked that she help me hold down her brother so I could attend to most likely his central line that I think he may have pulled out.  I remember looking over and watching her hold down her brother's arms and she just kept saying "shh shh shh," trying to calm her little brother down.  That day I realized that this little girl was special.  It pains me to know that that was only one of many times she was put into a situation that no child should have to deal with -- but it was are reality -- it is are reality.

Life I have said in past posts -- I firmly believe that God has had his hand on this little girl from the day she was born, holding her tight when Mommie and Daddy were fighting for Gavin's life, and shielding her heart and eyes from things that would make a grown man turn away.  She is destined for great things -- I'm sure of that.

So to you my little girl -- my not nearly a toddler, not preschool anymore but still not yet a kid -- I love you with all my heart.  I wake up every day and renewed by your zest for life.  I pray that this is your year.  

This is your year to find healing and peace -- your year to learn how to be a little girl.  

Pounding the Pavement...

Well, maybe not quite the pavement but I sure have been pounding the treadmill and what feels like every other price of cardio equipment known to man. The YMCA is hosting a pretend race to Hawaii and of course I took on the challenge.  Every minute of cardio counts as one mile -- and I have over 5000 to go. Am I trying to get healthy and in shape?  Kinda, but I have ulterior motives.  I'm actually having it out with God.   I know I show my strong side here on the blog but truth is I'm a mommie who just lost her little boy and I'm a women who's in need of a little time each day to tell God just how hurt I am that I have to wake up everyday without my little guy.

The gym is a great place to get it all out. I literally pound the treadmill floor with my body, telling God just how much my heart hurts and sometimes I even just need to tell him I'm a bit peeved. It seems like in the religious world,  having feelings of anger toward God is so taboo. But I think the truth is God knows we get angry.  And in a way it's a time for God to provide emotional healing and peace and maybe even a little bit of joy snuck in.

I have 90 mins each day to get it all out before God. I listen to my music and watch a slideshow of my sweet Gavin play across my iPhone and at times I shed a tear. But in the end as I listen to truth about how God is my healer how he will bring great things into my life -- how nothing is impossible for him -- the hurt and anger is faded away and I can once again find peace and joy in the death of Gavin, not because he is no longer in my arms but because I have faith and know he has been made whole.

This week marked three months since we said goodbye to our little boy.  I miss him more than ever.  I feel like if we just keep telling God how hurt we are and how much we miss him  it seems to free up space for his peace to come in.  Why hide my anger from God?  It that really even possible.

Chronically Cool Families...

We are excited to officially announce the start of Chronically Cool Families -- a parent to parent support group for families like ours who are struggling through everyday life raising a child with a chronic illness or disability.  Adam and I know first hand the struggle that comes along with having a chronically ill child. There are so many families out there who often time get isolated simply because no one can understand the challenges they face on a daily basis.

Our goal is that no family walks this path alone.  A great strength to Adam and I was found in other families -- many who read this blog, who also face similar difficulties.  Even though every story is different it's just nice to know that another family could understand, at least a portion, of what we were going through.  This group in no way will change the sick child's health but it can give hope -- hope that life is possible despite a disability -- that joy can be found even in the most stressful and chaotic moments.

Another exciting part of this group is that we will also be offering a sibling support group which will include both the effected child and his or her siblings.  When Gavin was here my one wishes as a mother is that my daughter, Madison could understand that there are lots of other children who are just like her -- having a sibling with an illness or disability.  The group will be simply a time for kids to be kids -- both with illness/disability and without.  

Group starts on March 25th @ 7pm at the Alfred I. duPont Hospital for Children.  If you are interested please contact myself or Jennifer Fenstermacher who is a social worker at duPont.