Thanksgiving -- On A Whole New Level...

Growing up I was always taught that Thanksgiving is a time to think about what we are grateful for -- the blessing we have in our lives.  I remember in Sunday School making little crafts often times listing the top ten things we are grateful for this past year.  In all honesty,  do we really actually take the time to think about just how grateful we are.  It's weird how our human minds work -- it's hard to recognize the good things in our life until they are gone.

This year my heart is overwhelmed and my mind is just about shot from the countless hours going back and thinking about the past four years.  Did I ever really thank God for life?  Not only my life but the life of my husband and the life of my children.  Life is such a funny thing.  We tend to think it's guaranteed -- and then *poof* one day it is gone.

I really feel in my heart that Adam and I tried to make the best out what we were handed over these past several years.  But I just have to think back at all the times I should have been thanking God and instead I was looking for a new day, a way out of our situation.  

Even when life seems unfair, when jobs stink and children are getting on our last nerves -- there is so much to be thankful for.  I remember the day before we took Gavin off the bipap -- I looked at the monitor and just prayed that one of those breaths would be triggered by his own little body.  Each time a breath was taken without the ventilator forcing the air in -- my heart jumped with such excitement. My entire being was so focused on each and every rise of my little boy's chest.  

 If only we lived each day as it was not only our last day of life -- but our last breath.  

God -- thank you for life. 

Going Back...

Today was the first day I walked through the doors of DuPont Children's Hospital -- without my little boy. There are so many different feelings going through my tired emotionally overloaded mind. It feels weird to enter that building as Karen Owens, not Gavin's mom. Even though I believe I will always be known as Gavin's mom or the Mom who never sleeps, as I found out I was known as for Gavin's first year of life by the nursing staff, there is part of my title that has forever changed.

I am now a mother who has lost her child -- I have joined the unwanted club of grieving mothers.

In an odd sort of way there is so much peace in walking through those doors-- after all this was a place of healing. We would bring Gavin through these doors not knowing if these were his last moments only to walk back out a week or so later with our little Boy still hanging on to life. I walk through these doors today as a broken women finding healing by giving back to the place who has given me so much. This place gave us safety and most of all it gave us more time with Gavin and more time as a family.

Today we were able to donate Gavin's infant warmer to the unit we lived on for the past three years it was a much needed piece of equipment as the current warmers on the unit as so old and annoying.  I was also able to  drop off a proposal for a support group we are going to be starting at duPont.  We re very excited to launch this new support group early next year!

You all are rockin' the Babylegs Campaign -- keep up the great work and spread the news! We can keep those chubby legs warm this winter!

Photo Credit: Ryan Estes, NILMDTS

Babylegs Campaign...

We are so stinkin' excited to announce our Babylegs for Kids campaign!  What are Babylegs you ask?  They are the amazing leg warmers that our little fighter wore his entire life and what many parents of medically fragile children have come to know as a necessity.  Having a child with tubes is difficult but trying to find clothes for a child with tubes can be even more challenging.  Babylegs provide a great way of keeping their little legs warm without having to have them in pants.

During hospital stays many parents find it difficult to keep their little ones warm while dressed in the yucky hospital gowns.  Bundling them up in nice warm pj's is often impractical and unsafe particularly for children who need to be frequently examined by the hospital staff or children with lots of tubes and wires.

Lets help keep those chubby little legs warm this holiday season!  We will be accepting donations of new Babylegs up until December 21st.  You can use the contact our family button on the sidebar of this page to email out family to find out the mailing address.  You can purchase Babylegs at places like Target and also at babylegs.com.

What a great way to honor our little fighter!  Gavin loved his Babylegs and we did too!

Remembering...

When Gavin was admitted to A.I. duPont Children’s Hospital for the last time about one month ago the memories from that day sit like a cold rock in the bottom of my stomach.  He had a high fever with spells of low O2 saturations and Adam and I felt he needed to come in to be admitted.  As always Gavin’s attending Doctor was right there to support us in our decision and had us come right in.

Dr. R met me down in the ER and the words he spoke will forever stay in my memory.  He walked in the room like a man with a purpose.  He’s not very good at hiding when there is something on his mind -- in fact his very presentation was something I had always dreaded over the past three years as it was usually followed by some kind of bad news of difficult decision needing to be made.  He sat on the bed next to Gavin sleeping in his wheelchair and looked me in the eye.

Does he have anymore good days?  

It was that simple.  In that very moment I came to the painful realization that I have not really seem my little Gavin in many months.  The Mito had begun to take his mind.  He would scream for hours on end, not wanting anything in particular.  He would either sleep for days or be unable to sleep for days leading to delirium.  We needed to inject intense psychiatric meds into his little 3 year old failing body just to keep him safe from himself -- the pulling of his lines, the thrashing of his body.

These are the things I remember -- these are the reasons I will forever be grateful to Gavin’s doctor, our friend,  who reminded us that our little boy was gone -- it was time to let him go.

These are the reasons I will forever worship a holy and sovereign God who wouldn’t dare let my little Gavin suffer another day more than he had.  

These are the reasons Adam and I find perfect peace in knowing that our little boy is no longer suffering.

Photo Credit: Ryan Estes Photography, NILMDTS

Finding Our New Normal...

I kinda feel like I am having a flashback in time, when Adam and I first came to the realization that our life was not normal -- when we found our new normal. Our new normal included a life of chaos, uncertianty but was also filled with lots of life and love. It was defined by hospital walls, yet held the anticipation of all life had to offer once we found freedom for a few weeks or days at a time.

Gavin is gone. Although I would do anything to have my little boy back, truth is he is not truely gone, as his very essence pours from our little family. Our very souls hold fast to the spirit of hope, love and joy God chose to teach through Gavin's life.

This begins our new normal.

Many are wondeing just how Adam and I are doing. The truth is we are doing pretty good. I can't begin to explain te heartache Adam and I experienced while watching our baby boy suffer for three and a half long years. When I say suffer mean true suffering that no human being, yet alone a child, should have to endure. The last 52 hours of Gavi's life made Adam and I fully understand that Gavin's work here on Earth was finished. Gavin's little body was done -- his spirit was ready to experience God's total and perfect healing -- our family was ready to receive God's total and perfect healing.

We will never forget.

Please never forget our little fighter. Remember the impact he had on your life. Welcome us back into your lives -- we ate ready to redefine life as we know it. Feel free to ask questions about his last days. We want and long to talk about our little boy. His death, although so painful, was a beautiful experience we will never forget -- laying cuddeled up with our baby boy and watching God's total healing power flow through Gavin's broken tired body.

If you are wondering how Madison is doing -- just look at these photos. Although she misses her little brother I think she too is finding healing -- freedom. She is finding peace and is more than ready to have her mommie and daddy back!