Thursday, April 29, 2010

Never Lose Hope 5K Run...

Adam and I are excited to announce the Never Lose Hope 5K Run and Fun Walk on September 25th, 2010.  If you live in the area, Adam and I would like to invite you to attend this event to help us honor our little boy. You can visit the official race site to get more information and also learn more about why we are running. Even if you don't run,  there are so many ways you can get involved.

Special thanks to all the people who are working hard to make this event happen -- I think it's going to be a great day!

5K Blog

Wednesday, April 28, 2010

I Almost Forgot...

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This post was orignally written April 24 2010

Yesterday as Adam and I were preparing to speak with the residents at the AI duPont Hospital for Children, regarding our experiences during Gavin's death, I felt the deep emotions welling up as I went back and looked at some things that I haven't seen since before his death. 

Today as I watch some video of my sweet little boy I realized that I almost forgot -- I almost forgot his sweet voice and I almost forgot how much life he still had in him, despite his failing body.  As I've stated here on the blog before -- it's crazy how Adam and I can talk about Gavin's death and the suffering he endured in his last year, but often times the pain of remembering his smile and sweet voice is so heavy, it literally thrust me into deep sorrow and pain.  When we think about Gavin's suffering it reminds us that his death, despite the sadness, brought along with it a beautiful gift -- the hope of a new life free from pain.  

Yesterday as Adam and I left the hospital I asked Adam what he thought people were thinking as they listened to us tell the story of Gavin's death with no tears, but rather a sense of hope and feeling of peace.  There tends to be this expectation that tears are a sign of love and without them there might be something missing -- that maybe we are grieving in an unhealthy way.  This side of grief -- the peace despite the pain -- seems to be left out of the books.  Just because at this moment my eyes are not filled with tears, doesn't mean as I remember my little boy swinging on the swings being pushed by his big sister, doesn't send me to my knees begging God to turn back time.

It's just something to think about.

At times I often wonder what other mother's feel like after the death of their chronically ill child.  I often long to know that I'm normal -- but is there really a normal?  Every death is so different -- every death experience is so different.

Gavin was granted a trip to Walt Disney World through the Make-A-Wish foundation just 6 months before his death.  His trip was one of the last times we spent together as a family with Gavin in good health.  I have never went back and looked at the countless hours of video we took on that trip.  I have been so scared at what emotions would follow.  You see -- somethings can trigger a grief that can be so deep that it literally feels deadly.  

Yesterday I caught just a few a few glimpses of that video and my heart has once again been ripped out of my chest with deep longing to hear him say my name and see his smile once again.

Gosh -- it hurts so bad, but it also feels so good.  As a grieving mother, and as time goes on, my mind starts to think of other things -- other things besides Gavin.  I'm often filled with guilt, wanting to feel the same intense emotions as I did the day we said goodbye.  It is moments like right now, watching this video, where I am once again am reminded how much I loved and still love my little boy.  




He gave this world an amazing gift -- He gave this hurting mommie an amazing gift.




**This post contains a must see Video -- click here is you can not view movie clip.



Thursday, April 22, 2010

Children's Rare Disease Network...

I have the amazing opportunity to to volunteer for the Children's Rare Disease Network and be a contributor to their RARE blog.  This is an amazing resource for families, physicians and advocates all working towards a common goal, bringing awareness to Children's Rare Diseases.  This week my first article went up on the site and I'm excited to be able to continue to be apart of the good things this organization is doing.  Come check it out.

Monday, April 19, 2010

Family Grief ...

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The loss of a child comes with a lifelong process of grief. This past week we were talking with other families who have lost children and we all kinda felt like there is something just different about a child's death that kinda sets it apart in the world of grief. Don't get me wrong - death is death, and death sucks. But there is something about losing a child that just stands out -- the natural order of life and death is disturbed and families are forever changed.

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Our families process of grief has been an amazing time of reflection, where even in the midst of the intense pain and sorrow there are so many ways God's beautiful hands can be seen moving in our family -- if we just take a second to see it. I noticed this week that all three of us seem to grieve at different times. It seems while God has been speaking Joy and Peace into Adam  and I's hearts, Madison has been going through a week of deep reflection and remberence which causes sadness and misbehavior. But her time of grief comes at a moment where mommy and daddy are feeling strong and are ready to hold her and help her through the pain, allowing us to give her the support she needs.



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Then there are the times where Adam or Myself are desperately waning to hold our little boy once again -- it seems like those see times Madi brings her sweet spirit and child like faith and understanding and reminds us through her life that God still loves us and has amazing plans for our family.




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Our grief process as a family is an amazing thing guided by the hand of God. The process remindes us of our deep love for Gavin and also Gods overwhelming love for us. It's hard, but it seems if we just take time to step out of our pain, even if just for a moment, we can see the bright warm sun peaking through the dense fog.


New Sneak Peak...

This weekend I got to shoot a maternity session, which are always fun.  I love doing kids -- they will always be my favorite but it's a nice change not to be chasing around the subject!  This mommie to be looked beautiful.  Head over to Urban Studio Blog for more!


Sneak Peak

Tuesday, April 13, 2010

Simply Mommie...


It's fascinating to look back over a span of time and see how the roles we play as a person change.  I've always been a girl, but one day I took on the role as women.  I've always been a daughter, but then I became a wife and then eventually a mother.  My journey as a mother started as a new mommie learning the ropes and later morphed into the role of mother but with intense challenges.  Every mother has one job -- to nurture.  To provide an environment for her children to grow and thrive.  My one job turned into a very difficult one -- to keep my little boy alive despite a cruel devastating disease slowly overtaking his little body. 

I was officially welcomed into the special needs community.  I was the proud mother of an adorable little girl, healthy and strong and a little boy whose every breath was a fight for life.  Even though I was still a mother -- it all changed.  Being a mother to a special needs child is a unique experience -- one that no what to expect when you are expecting book can ever prepare you for.  Being a mother to a terminal child with special needs is not only difficult but changes the very process of motherhood -- you are no longer preparing your child for life -- but rather death.  Being a mother to a terminal child with special needs along side other siblings is just a whole different scenario.



Before Gavin died I wanted so bad to be the mommie my little girl needed. I think I did a pretty good job but fact is it was very difficult. It's difficult to explain the intense battle a mother faces as she tires to give her typical children a normal life and at the same time give the child with special needs the extra time and care they need in order to thrive. After Gavin died, I took on a new roll that I haven't seen in several years -- simply mommie.This past week I've really tried to embrace my new roll -- simply mommie. All the other roles I've played over my lifetime have prepared me for this time -- to be this type of mommie.  I'm striving to become an intentional mommie -- to make an intentional effort to give my little girl the love she needs and deserves.  I know my little girl knows I love her -- but do I tell her enough.  I want to touch and kiss her more, as I now know well the feeling of no longer having that touch.  I want to let her know she is an amazing child -- to make it a point to use the words beautiful, special, amazing, important and loved as apart of our daily conversations.


For now this is my role -- and I choose to embrace this beautiful role as I know it will soon change again. 

Wednesday, April 7, 2010

New Sneak Peak...

There's a new sneak peak up over at at Urban Studio {blog}.  These are some of my favorite photos!  If you think this guys cute come over and meet his big sister!

Monday, April 5, 2010

New Insight...

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This Easter came with new and amazing insight into just what happened those many years ago when Jesus was no longer in his tomb.  As a good friend reminded Adam and I yesterday -- along with this new insight came a great loss.  The loss of our son.




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I've experienced thirty Easter Sunday's in my life and this was the first time I actually realized the significance of this amazing holiday.  For me it no longer just marks a day in Christian history remembering weekend of Christ's death and resurrection but I now see it as an amazing miracle that made to way for new life. 

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I just can't imagine going to Gavin's grave not having the hope of new life after death -- the hope of healing and restoration. Yesterday as we gathered as a little family and spent time at Gavin's stone, we couldn't help but feel an amazing sense of peace and reflection -- remembering just what Jesus did for us and for our little boy. 




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We have been spending lots of time at the cemetery this past week.  Mainly because this week Gavin's gravestone was laid down and somehow it feels like a completion to the burial process.  At first it was difficult to see that stone there as it kinda meant "it" was over -- that this season of laying our little boy to rest was over.  But I think Adam and I are both ready to move on from this time.  No more decisions needing to be made -- we can now just enjoy the sweet memories our  amazing child.

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Madison in particular just loves being around her brother's body.  She understands very well the concept of death and how his sick broken skin is buried under the ground and how Gavin's thinking, feeling and laughing all went to heaven with Jesus to get a new body and is waiting for us all to join his party up in heaven.  She probably understands it on a deeper level than most of us.  Madison and Gavin's bond is amazing.  The other day Adam I just sat on the grass and watched Madison as she talked to Gavin, decorated his grave and made sure each and every stick was arranged just so on top of the dirt.  

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I think we could all learn a whole lot about faith, trusting in God and embracing the things we may not fully understand, just by taking the time to listen and watch the faith of a little child.

It's simply amazing.

Saturday, April 3, 2010

Easter...

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Easter holds so many amazing memories. Our first three Easter's, like most of our holidays  as a family of four, were spend at AI duPont Children's Hospital.  I remember our first Easter with Gavin was a difficult time -- we had been in the hosptial for a few months.  That hospital stay began with lots of fears as this was the first time the possibility of his death was discussed.  He was an emaciated little boy weighing less than 10lbs at almost one year old -- his body was starving to death despite the TPN and tube feeds.  Anyway, as is true with most of our family memories, amidst all the sad memories there are so many happy moments that stand out.  I remember our Easter egg hunt in room 15 of 3E, we hid eggs all over the hospital room and I vividly remember an egg hidden behind the giant red biohazard bin-- telling the bitter story of our reality.  I remember at that moment having the revelation that life will not stop -- despite my child's poor prognosis, even the posibility of death -- we will live -- Gavin will live life and our little girl will experience all the joy and laughter life has to offer.


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I then think about the next Easter -- Gavin was fighting a serious fungal blood infection.  I remember sitting by his crib watching the crib rails shake and his body was convulsing from the high fever and chills.  I remember the moans that came from his broken, swollen tired body.  I remember despite his critical state, his swollen hands reaching into his Easter basket looking for all the goodies the Easter bunny had brought. I remember Madison's beautiful white Easter dress -- she had no place to go but the lonely halls of the Hospital -- but we made it happen.  Life was so worth living!

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Then there was last year, which I now consider a precious gift from God.  He gave us one Easter home as a family -- Easter memories outside those cold Hospital walls.  Gavin wore his green vest, blue Babylegs and his black converse sneakers and of course his cool hat -- I remember it like it was yesterday.  

Thank you Lord for that Easter at home.

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This Easter as I stood by my little boy's grave I was filled with such a revelation of what Jesus did for us those two-thousand something years ago.  Because of his death my little boy lives!  I, as a mother can go to my child's grave in full confidence that my little boy is no longer buried beneath that ugly mound of dirt but rather his spirit was given a new body -- free of pain and suffering, and is resting in the arms of the Almighty God -- just waiting to be held in his mommie's arms again.

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This Easter we continue to live life -- embracing the pain of Gavin's death, thanking God for the end to his suffering and remembering the beauty of his life.  These photos were taken this week -- I could stare at these photos for ever.  They show so much more than my sweet little girl -- I look at these photos and I can't help but see the beautiful grace of God, the possibility of real hope -- joy.