Saturday, January 30, 2010

Girls Day Out...

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After a terribly long an difficult week it was decided that since Daddy was going out with the guys to the Philadelphia Auto Show that the girls needed to get out as well!  Madison and I decided to go to the movies and see the Tooth Fairy.  It was a great movie and I had a wonderful time spending time with my little girl. 

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I have been struggling a lot with the effects of Gavin's death on our little girl.  After starting her in Art Therapy the therapist has pointed out some stuff to us that Madison struggles with as a direct result of her difficult first four years -- it's hard to hear.  Even though I know without a shadow of a doubt that Adam and I both gave Madison everything we could give, both physically and emotional, fact is there were so many factors that we had no control of and were inevitable such as lack of stability and being put in situations that even would scare a grown man or woman. I often feel so much pain -- just to know that my little girl is in pain.  She misses her brother.  She is bored -- and it's not boredom that can be solved by more activities or a play date.  It's a missing piece in her life -- the same deep painful void we as adults feel after loosing Gavi.

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With all my worries and concern for my little girl I somehow still feel a pretty good sense of peace.  I am choosing to trust in God -- that in the times Adam and I could not provide for Madison, while we were in the moments of crisis and trying to keep Gavin alive, He came and stepped in.  When she needed  to be held -- He was there to hold her.  I still worry as a mother but I'm also choose to believe God's hand has been on my little girl since the day of her birth.

Just look at her -- she is so stinkin' beautiful, way beyond her cute little smile.

Thursday, January 28, 2010

Clarification...

I didn't really want to address the comments on my last post but today decided that I should. We get some negative comments every now and again and usually just let it roll off our backs -- after all we are the ones who choose to make our life public.  Some comments are people just trying to stir things up and I choose just to ignore then as not to fuel their fire. Others are trying to help but in the end their comments hurt just as bad. 


To start off I just want to remind you of a few things that I think will help people understand my last post -- Adam and I watched our little boy suffer for three long years. We watched the very life be sucked out of him. We watched him go from a talkative little boy who loved to play with trains and trucks to a child who suffered with intense episodes of delirium and would scream for hours inconsolable. We watched as each of his organs began to be effected and overtaken by his disease. We watched him fight infection after infection each of which took a harder hit on his sick little body. Worst of all we watched our little boy endure a horrible death -- a 52 hour long episode of drowning in his own fluid.


The moment of Gavin's death brought our family an intense overwhelming time of both sorrow and joy. Our prayers were answered and the little boy that once lit up a room with his smile was now able to smile again -- in total perfect health.


A day or second does not go by that I do not think of my little boy who came from my very flesh, who I once held in my arms and gave every ounce of my energy to, caring for him and making sure all his intense medical needs were met.


So here we are now. Gavin is gone. And although I would give everything to lay a blanket over his grave and lay on the ground with my body pressed firm against that dirt -- just trying to get a little closer to his flesh, I can't. So Adam and I are taking all the thing that we feel Gavin left us behind as "gifts" -- having more time, more freedom, a new life and we are moving forward.


People need to remember this just because we are moving forward does not mean in anyway that we are leaving our little boy behind. Gavin's very essence is woven through our family, his spirit is what our family is all about. And for the joy part -- how can we not feel intense joy that our little boy is no longer suffering? Our joy is the testament of a loving God who chose to not let our son suffer any more -- and begun the healing of our hearts.


So there you have it. This is where I am at. Please remember that this is a blog. There is a real live family behind these words. There are real emotions and moments that don't get put on this page -- simply because these are just words. I am just a women longing to find my place here on Earth, my place as a child of God and the answers to how I will live the rest of my life without my little boy.

Tuesday, January 26, 2010

New Season...

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There have been so many changes in our life over the past four months that they all seems to get lumped together under the heading of Gavin's death.  Everything from losing Gavin, to moving into a new house that same weekend as Gavi's death, all the holidays, catching up with old friends, me getting a job, Madison starting new classes at the YMCA and the list just seems to go on.

In all these changes there is one change that has really been made clear to me over the past week.  Our family is entering a new season of life.  This new season, or time of our life, isn't just because Gavin is no longer with us -- it's much more than that.  This new season means our house is no longer a nursery -- there are no baby toys or diapers.  If we sleep in we can probably expect that Madison would have gotten her self up, turned on the TV and maybe even made her own breakfast.  This new season is actually kinda nice.

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Even though Gavin's death is still so heartbreaking for all of us, one of the things that helps me cope is to take time to thank my little boy for all the little gifts he left behind -- after all he is the one who kinda pushed us into this next season.  I think about how in the sorrow of Gavin's death he left Adam and I such a deep sense of joy -- a deep joy that we hadn't felt in a long time.  He left behind freedom for his family, giving us the ability to just go where ever we want to go and spend as much time with Madison as we want.  He helped us to find the deepest love for each other and the intense desire just to be a family -- our little family of three.

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As we enter this new season, there are so many unknowns -- we have so much to learn regarding how to live.   It seems to be a time of discovery and emancipation from dependence on others -- a time to make our own path.  I must say, so far I'm really liking this place in life.

Friday, January 22, 2010

Before and After Photos...

I know many people have been wanting to see some before and after photos of our new home, "Gavin's House."  For those who do not know, before Gavin died our community came together to renovate this home so that it would be accessible for Gavin and his wheelchair.  His room, which is now my office, was complete with a plumbing and plenty of cabinets and counter space for preparing IV fluids and meds. This house is an amazing blessing to our family, and we are excited that we are now taking steps to officially purchase this property in the next month or so.  


Adam put up a nice slideshow of some before and after photos -- go check it out!

Wednesday, January 20, 2010

Thinking...

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There are so many times I tell myself that the pain of loosing Gavin is getting a little better, but then the flood of emotions come where I remember just now much I miss my little boy.  He is gone. As odd as it sounds, there are many times I have to remind myself of that.  With all the suffering that is being shown on tv from the suffering in Haiti it has once again reminded me and made fresh not only my own loss but all the other families that are dealing with terminal illness of their children.  I heard of a few children that have passed away this week, and although I do not know any of them, my heart hurts knowing all too well the intense pain they are feeling at this very moment.


Take time to let your heart break for people who are suffering.  So many times we, including myself, choose to just ignore.  Somehow it makes it easier for us to say "no" when the cashier at WaWa asks us to donate one dollar to the American Red Cross to help provide aid in Haiti.   If we choose to ignore suffering, so many families walking a similar path to ours will never find the love and support we have found.


It's really sad.  Today I'm choose to open my eyes and just remember -- remember that even in my own hurt and pain there are so many other's that are suffering.

Sunday, January 17, 2010

Six Years...

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Six years ago today Adam and I were married -- we offically started our life together.  Looking back on these past six years I just can't believe all that has happened over our life together.  We have walked together through some very difficult times -- yet we still stand here six years later and I think I just might be more deeply in love now than ever before.

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You have walked with me through these past six years and have given me so much and more.  You have taught me who I am as a women and you have given me two beautiful children.  You chose do "this" together, never leaving me alone but holding me up during the most difficult times.

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We have experienced so much joy and we also have experienced the deepest of pain.  Thanks for being who you are -- never changing, always consistant, full of love and my support.


Tuesday, January 12, 2010

SheROX Triathilon...

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We are happy to announce that we will be forming a team to compete in the 2010 SheROX Triathlon Series in memory of our little boy Gavin.  You can join our team a few different ways --  The first is to enter the race as an individual, second is to enter the race as a team of three, each completing a different leg of the race and you can also enter as a team of two, with once member completing two legs of the race.


We already have one relay team and are looking to get at least another two teams together.  There is no money being raised it's just a time to help us remember and honor Gavin and the impact he has had on our lives.


There is a fee to enter the race.  All information on the actual race, course map and registration forms can be found on the SheRox webpage.  I will be ordering shirts for our team to wear for race day and training!


What do you think?  Ready to push yourself? 


 I know I am.  

Friday, January 8, 2010

BabyLegs for duPont...

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What an amazing morning we had at the A. I. duPont Hospital or Children -- the place where we lived the past  3 1/2 years, the place that we not only started Gavin's life but also watched it end -- our second home. This place has given our family so much -- much more than just caring for the medical needs of our sick little boy.  This place gave us comfort, hope, friendship and the people in this hospital walked us through some of our darkest times -- always there ready to listen and support us. With that said, it feels so incredibly awesome to give back to the place that has given us so much! 


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Our family spent to morning with some of the hospital staff taking photos and handing out the bins of BabyLegs to the staff from many units of the hospital so they could take them back and give them to the children as they need them.  Due to the current strict visitation policies due to the flu we were not able to walk around to all the units but we were able to spend from time on our unit 3E.  They dedicated a closet to our little boy where items can be stored that are donated for the children of that unit.  It was an amazing feeling to see Gavin name right on the wall -- making an impact.


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Thanks again to all the people who made this campaign possible.  Thanks to all who donated.  Thanks to BabyLegs for matching our donations and really taking this little fundraiser to the next level.  Thanks to the Hospital staff for welcoming our donation.  Most importantly thanks to my little boy for teaching us all about hope, love and joy and giving us the strength to keep your spirit strong -- making an impact and changing lives!


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Thursday, January 7, 2010

United Mitochondrial Disease Foundation...

We were very excited last year when the United Mitochondrial Foundation asked to use a few photos of our little boy to use on their new website.  Well, the new site has launched and my heart is so happy to see my little boy's smile giving hope to those living with Mitochondrial Disease and hope that one day a cure will be found.  Click here to view their new website.


UMDF Site

Tuesday, January 5, 2010

The Final Numbers...

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The BabyLegs Campaign is officially over and although they are still coming in -- and we are gladly accepting them, we are done counting and have some final numbers to share with you.  Adam and I are both so grateful to each and every person who donated to our campaign.  When originally posted this campaign I was thinking we may be able to collect a hundred -- and I am so stinkin' happy to say that we raised over Two Thousand pairs of BabyLegs.

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Not only are we excited to touch the lives of ill children and their families at the A. I. duPont Hospital for Children but we are also so happy to do this in the memory of our little boy -- our little fighter!  We miss him so much and this is one way we can continue our healing and find joy in suffering.

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You all are amazing.  I will be sure to take lots of photos of our special day at the hospital.

Sunday, January 3, 2010

Taking A Deep Breath...

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Anyone else just ready to take a deep breath in, hold for ten seconds and then slowly release?  I know I am.  It seems that ever since Gavin died our life has been one giant whirlwind, which is kinda cool and fun but at the same time left it's marks on our tired bodies.  We are ready to get in a serious routine.  

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For those of you who know me you know that I am a woman of routine -- I run a tight shift and I like it that way.  How do you think we managed to life our life as active as we did with our little boy who required around the clock intensive care -- it was all about the routine.  Since Gavin died, my routine needs to be redefined.  Life is no longer run by the next med dose or next iv infusion but rather it now needs to be run by giving my little girl a sense of normal life.  We will do lots of fun things and make lots of new friends but we will also make sure to have quiet time, down time and time as a family.  That's easier said than done -- especially for a women who has thrived on chaos over the pst few years.


We will do it -- as a family.  We are excited for lots of new things happening this year, new opportunities and new goals to be accomplished!