Sunday, May 30, 2010

Gavin's Birthday Give...

I look back over the past three birthday's our little boy was able to celebrate and my heart and mind is flooded with amazing memories. This year, despite his death, we are making it no different. In celebration of Gavin's fourth birthday we are organizing a Birthday Give -- a way to give back to the hospital that helped give our little boy 3 1/2 amazing years of life.

Our family lived most of Gavin's life inpatient at the A. I duPont Hospital for Children on unit 3E. This is a unit that takes most all of the babies and little ones, that are non surgical. They are labeled a respiratory unit but in reality they get all kinds and again mostly all the babies, not matter what the diagnosis.

We could not have asked for a better group of people to become part of our family -- they provided us with the love and support we so desperately needed during our many years of medical crisis, watched along side us Gavin's little body fail. They welcomed us with open arms, and stood by our side as Gavin took his last breaths. We sensed that even though it was our child that was dying -- we were made to feel like they too were saying good bye to one of their own. These memories are priceless.

In honor of Gavin's Birthday we are organizing a donation to this unit of the hospital. One need that we know of is a nice stroller. Many times when the parents need to leave the room, either just to get something to eat or needing to run home or even to go to work -- the hospital staff tries very hard to make sure no child is left crying alone in the patient room. The hospital has lots of fun red wagons that they use for patient transport but for little tiny babies this is often a little impractical. So we would like to purchase a new stroller for the unit to own, for use with it's patients and also for the families use as well.

Another need is new baby toys. This is one thing always lacking at the hospital -- mainly because if you have a little one chewing on a rattle, most staff or parent wouldn't dare take if from the child on discharge. The toys go home with the families, which is fine, but they need to be replaced! So we are also collecting new small baby toys such as rattles, teethers, link and roo's and other small items.

All of the toys donated will fill up Gavin's Closet on unit 3E at the Hospital -- not only will they fill up Gavin's closet but will also make lots of families and kids very happy!

To help fund the purchase of the stroller we are looking for monetary donations. One dollar can do amazing things, if every reader of this blog donates just that -- one dollar! We have set up a pay-pal account that you can directly donate into, or if you feel more comfortable you can send both toy and monetary donations to our PO Box, listed on the sidebar of this page.

We realize that many people don't like to just give money to any old website or cause -- we get that -- so no pressure. But rest assured we will bring you along for the ride and keep everyone informed about how things are going -- not to mention provide lots of photos when we make the delivery! We would like to make the delivery towards the end of June.

Thanks from the bottom of our hearts for helping us allow Gavin's legacy of hope live on -- touching lives and bring joy to the children and families at the A.I. duPont Hospital for Children!

Thursday, May 27, 2010

It's Summertime...


I do believe summer is here in full force -- well at least it sure does feel that way!  This week every month is a crazy time for our family -- we litterally travel all over in just a matter of a few days.  Earlier this week I met with the Family Advisory Board, a committe that I'm apart of, at the A.I. duPont Hospital for Children and then yesterday we had another meeting Lancaster.  Tonight we get to travel back down to Deleware to meet with the Chronically Cool Familes group.   These things keep us pretty busy but are so rewarding!  After many years of being on the receiving end it 's so very liberating to be able to give back!

Because summer is here, or at least on it's way it means one exciting event is just around the corner -- Gavin's Birthday!  Our little fighter would have turned four this year.  It makes me smile just thinking what his little healthy self looks like in heaven -- I'm sure his hair is styled all cool and spiky and I just bet he even has a cute little attitude to match.


In honor of his birthday and in celebration of the amazing legacy he left behind we will be organizing some type of donation to the inpatient unit we spent most of Gavin's life living on.  I'm not quite sure what we will be collecting just yet -- today I will meet with administrators to see just exactly what they need.  The BabyLegs are gone -- and went over really big at the hospital.  I can't explain just how grateful all the families and hospital staff was for your help in making that campaign a huge success.  

Anyway I'll be posting our new Birthday campaign as soon as I get it all organized -- but of course I would  love to hear if you all have any ideas.

Sunday, May 23, 2010



The other day Madison and I went back in the yard and played with my old lacross stick from High School.  I'm not sure I've ever seen her more excited to be with mommie.  It was the best feeling just to watch her face as I would give her praise for each good throw or catch -- she was so happy!


Happiness is a funny thing.  It's so easy to get tangled up in the if I had or when I get this then I'll be happy game.  Adam were talking last night about this crazy culture we live in -- how in the world did we let ourselves as smart human beings allow ourselves to get so brainwashed by our own people -- allowing others to tell us what will make us happy.


I'm learning true happiness comes from being in just the right place -- the exact place God's wants us to be.  Our happiness is not defined by life circumstances -- if that was the case I'd be doomed.  Our happiness is totally and completely wrapped up in the concept of God's unwavering Grace. 


Happiness comes from understanding that I am so flawed and make really stupid choices -- but despite my lack of,  I am loved, never forgotten -- not alone.


Wednesday, May 19, 2010



I could probably write for days recounting the many life lessons I have learned over the past few years.  It's amazing how many times when you are in the deepest of pits it is in those moments where if you allow yourself to hear and feel -- what seems like a situation with no way out, turns out to be life changing and a stepping stone on life's journey. 

I use the phrase allow yourself the hear and feel, because this has been one of my greatest lessons.  Life is simply a series of choices.  We have choices to make when we are living the good life and also difficult choices to make when we are living in crisis.  The process of making a difficult choice can be so intense -- it's this internal battle of craving control all mixed up with our free spirit just wanting to break loose.

I remember so vividly the moment I realized that my little boy was going to die.  We had been talking about his death for years but I always thought in the back of my mind that it would never happen -- despite his failing body and the ever growing list of medical equipment and meds that were keeping him alive.  Gavin's doctor was out of town and my heart was so closed to anyone else telling me anything about my son's condition. I had a trust and bond with Dr. Raab that I will never forget -- I trusted him and watched as he fervently fought for my little boy's life.  While Dr. Raab was out of town another doc had the horrible job of dealing with this mother -- not only this mother but a mother who he knew would soon loose her son.  Poor guy.   Anyway, Gavin had been dependent on oxygen and eventually that was not enough and he needed the support of hi flow vapotherm, a heated air that gives more support than traditional O2.  I remember vividly the night the vapotherm failed, Gavin's lungs were getting worse and it was obvious that things were getting bad -- fast. 


The covering doctor walked into the room with an empty look on his face, I knew he had nothing to offer us -- there simply was nothing more they could do. We made the plan to put Gavin on bipap, which for Gavin acted like a ventilator as he was not really breathing on his own.  I had a great plan how Gavin was going to be placed on the bipap, we would take him home and we would continue on with life the best we could. I remember the adrenalin flowing -- I was so determined to get my child home.

"I don't think he is going to make it home.  I'm not sure he is going to make it through the night."

Those were the words that stung like salt in an open wound.  Reality had hit. I knew my little boy was going to die.  It was at that moment where I began to learn a very difficult lesson.  When we are in crisis it is so easy to sink inward, to put our fingers in our ears and to just shut down.  What I found is that the more time I had with unplugged ears the more I heard -- the more I heard from Him.  Making the choice to believe that I had not been forgotten -- my child had not been forsaken, even if my inner soul questioned -- making the choice to have faith when my mind's understanding was way behind brought freedom like I have never felt before.

When choices are made to trust and believe even in the midst of horrible suffering, restoration comes. 

There is no greater feeling than the feeling of restoration. 

We are a family being restored.  We have made the choice to allow him to turn our mouring into dancing, we have givien him our sadness and he his turing it into joy.  It's an amazing process but like any process it takes time.  We still hurt and miss our little boy, but in this amazing beautiful way God allows us to still feel and experience joy.  We are living life with great excitment -- excitiment that we will once again see our little boy, only this time he too will have been restored.

Monday, May 17, 2010



I've been a mommie for five and a half years and have two beautiful children.  Part of me feels like life has always been this way -- the feeling of being childless seem so faint. Then there are the moments where I'm stopped dead in my tracks and have a major what the heck did I get myself into moment. Lately those moments are coming more and more frequently.

In case you don't know already, or if you are just living in denial -- being a parent is so freakin difficult. Parenthood is this crazy dance combining love and affirmation with a dash of discipline and a twist of pure insanity.

Add grief to the parenthood tango and it's just a huge party -- one that feels completely out of control.

It's so difficult to try to sort out all the influencing factors into Madison's **ahem, difficult behavior. Why is she acting out -- is she just acting developmentally appropriate and this too shall pass, is she tired and we need to slow down, is she sick or is she dealing and coping with the death of her little brother?

You see grief in a young child looks so different from adult grief. Young children do not have the capacity to put into words the deepest hurts that live in their hearts. It often comes in the form of defiance, longing for mommie and daddy to discipline just so she can put an emotional and physical feeling to the hurt deep inside.


Madison has dealt with her grief in amazing ways -- she talks, sings and draws all about her brothers life and the painful details of his death. She seems to do everything right and perfect but like I learned shortly before Gavin's passing -- death is anything but perfect, planned or predictable.

Last week Madison and I participated in Camp Madison -- a three day mommie and Madi event to celebrate good choices made and bad behaviors that have gone away. Each day Madi was able to choose one activity that we would normally not do, such as see a movie and she also planned the meals for each day. We ended camp with a family trip out to eat and made sure she knew just how proud she makes Mommie and Daddy every day.

I will probably never be able to sort out what is going on in her beautiful little mind. I can only choose to hold her hand and walk with her through her grief as much as possible. I'm learning not to make such a big deal out of the bad behaviors -- we acknowledge and redirect but there often is no need to let tempers fly. Rather Adam and I are trying to make a celebration out of the good choices our little girl makes.

I'm not a dancer and never will be -- just ask my husband. But I'm learning to conquer one step at a time. I can only pray God would take my crazy clumsy steps and make a beautiful dance.

Sunday, May 16, 2010

New Sneak Peak...

Come on over and see my lastest session with these two - well actually these four.  We are so proud to call John and Susan our good friends and couldn't be more happy for them.  


Friday, May 14, 2010

Mother's Day Without Him...

Photo Credit: Ryan EstesPhoto Credit: Ryan Estes

These past two weeks have seriously been a complete whirlwind.  Life is really good right now, but sometimes really good living brings lots of stress.   I'm the type of person who likes to take on the world -- if I'm asked to take on a project and I have the least bit interest in it, then I'm all over it!  I like living this way -- it keep things exciting and I tend to just do better overall amongst the chaos.

This past Saturday, which happened to be six months since we said goodbye to Gavin, I spoke at a ladies event at a local church and had the amazing opportunity to share our story -- Gavin's amazing story.  I consider it to be the hugest honor to share the incredible things that God did and is doing through both the life and death of our little boy.  I shared the video I created which is basically a whole bunch of blog posts all put together to kinda recap our life these past few years.  As I sat there and listened to the things that I had written almost 4 years ago, I was literally blown away.  I sat there amazed as I recounted the journey God led us on.

I wasn't sure how this first Mother's Day would go -- after all how does one celebrate motherhood when part of very essence that makes me a mother is gone forever.  As the day went by I started to realize that this day isn't bad at all, or at least no less difficult than any other day that I wake up without my little boy calling my name.

If anything Mother's Day was a special time for me just to remember that I am, and will always be a mother to two beautiful children.  It became a day of reflection.  A day of reflecting on the mother I am today -- the past that sculpted my present and that which is creating my future as a mother.

Pardon The Mess...

Sometimes life can get so incredibly crazy, right?  I'm experience a bit of chaos (all good), but I really wanted to start the new blog design.  Please pardon the mess as it is not done yet but I didn't have time to put up an "under construction" sign.   

So welcome to my mess.  I promise it will look great in a few days -- and all the buttons will work...


Monday, May 3, 2010

2010 Philadelphia Broad Street Run...

-10 copy

On Sunday Adam took part in the Philadelphia Broad Street Run, a 10 mile race in the city.  We had so much fun in all the craziness which come from 30,000 participants!  Adam ran this race in memory of our little guy, which made it extra special for all of us!

Doing things in Gavin's memory is such a huge part of our healing process.  Taking the time just to remember him, in any way or form, is just special for us -- it brings an opportunity to hold him tight again, even if it's not in the physical sense.

Madi also got to run in the kids race and according to her she was the fastest kid around!  


Saturday, May 1, 2010

Adjusting to Peace...


Adam and I are the pround owner of a 2001 Ford Windstar. I have to admit when we first purchased this van a few years back I was not a big fan of entering the "mommie driving minivans club", but it was a much needed step in our journey.  We had purchased the van to prepare for Gavin's first wheelchair and after I started driving it around I quicky fell in love.

Our van does not have much monetary value but it holds so many memories of my little boy. We had used funds raised by our community to have the van equipped with a wheelchair ramp so Gavin could use his new power chair -- sadly Gavin died two days before we picked up the newly renovated van.

To get back to my point -- our van is great but has this crazy glitch where sometimes when I drive the airbag light starts blinking. Every time I see that darn light flashing I can help but flinch just waiting for the airbag to blow up in my face -- it never does but I still flinch every time.


This is a perfect example to help explain my current state in life. Things are so quiet, filled with lots of peace and normality of life, but there is still a huge part of me waiting for that airbag to blow up right in my face. After living in intense crisis for four years it is a huge adjustment to be living in peace. Could it be that this peace has been there all along -- just hidden underneath the chaos of our crisis?

It's something to think about -- something for me to think about. In the meantime I'll soak up all the peace I can get my hands on. It sure does feel good.