Saturday, March 27, 2010

Spring is Coming...

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I've been doing lots of thinking lately regarding our current place in life.  It's been almost five months since we said goodbye to our sweet Gavin and started this process of redefining normal -- finding life after death.  Last week we had what felt like a sneak peak at the change in seasons.  The sun was shining and as I looked out our front door through the cold hard dirt were signs of beautiful flowers beginning to emerge.  At that moment God started to pour out this incredible analogy into my head that I heard in a song, written by a man who tragically lost his little girl.  

The song speaks of death as winter -- it's cold and harsh and often seems to linger on forever.  The pain of watching Gavin suffer in his last days was like a cold winter wind that just burns your skin, seems to pierce your very soul.  As time is going on God is doing this incredible work in my life.  His healing of my hurting heart is like the first signs of spring.  We know the beauty of summer is coming but the work comes in the spring -- the digging, the planting -- cultivating the very earth that will shortly begin its display of beautiful color and wonder.

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My spring of healing is a time of intense emotion -- grieving the fact that my little boy is gone, that my hands can no longer touch the life that once was.  It brings up pain that is hidden deep in the earth yet somehow out of the depth of that pain this beautiful thing emerges.  My spring of healing sends my soul churning with excitement -- the chance of new life, of new beginnings, of restoration -- possibilities.

This past week we have witnessed our little boy's legacy of hope and healing spreading and touching people's lives.  I was able to attend my first meeting as a council member of the Family Advisory Committee for the A.I. duPont Children's Hospital.  During the meeting many of the members including families, doctors and hospital administration already knew of my little boy and our family.  We have heard many stories, including this one, about how the Babylegs Campaign is touching so many families -- even spreading to the earthquake victims of Haiti, as a team from duPont took down a bin of Babylegs to hand out to the families they were helping. We were able to launch Chronically Cool Families, a parent to parent support group for families dealing with chronic illness or disability -- a group that was formed to honor our little boy.  

Spring is an amazing time.

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"I'll never let go of this hope that I have that tells me spring is coming. Watch the ice melt away -- the kids are coming out to play.  Feel the sun on your skin -- growing strong and warm again. Watch the ground -- there's something moving -- something is breaking through -- new life is breaking through.  Spring in coming."    -- Steven Curtis Chapman

Wednesday, March 24, 2010

New Season -- New Design...

Spring is here and that means one thing -- it's time to take lots of photos!  I'm excited to start another year with hopes of great things to come.  I figured it was only appropriate to give the old photo blog a new look for the new year -- come check it out...

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Tuesday, March 23, 2010

Chronically Cool Families -- This Thursday...

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This week begins our new support group at the A.I. duPont Hospital for Children.  Adam and I are so excited to be able to help provide a place for parents with special needs children to find community and understanding.  Life with a sick or disabled child is difficult, no matter what degree of disability or illness.  Finding other parents who understand what daily life is like can be just as difficult.

I remember the feelings is isolation and feeling like our family just didn't quite fit in -- Chronically Cool Families is a place for parent to break out of isolation and fit in just fine!  It's not to late to sign up.  Just send myself or Jennifer an email to let us know you are coming and if you will be bringing you children to the sibling group.  Feel free to just come check it out -- if it works for you we would love to have you back!


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Thursday, March 18, 2010

Random Thoughts About Death...

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Even though death is one of the most natural things that occur during the cycle of ones life, to me it's the weirdest.  Today I spent some time at Gavin's grave and as I walked around for a bit, I realized how even though everyone experiences death, you don't actually have a real awareness for it, until you have lost  someone close to you.   The reason I say this is because one of the things I noticed today at the cemetery is just how many people die each day -- every time I go back to see Gavin there are at least three or four new graves.    I've driven by that cemetery almost everyday we were outpatient over the last four years and never once did I ever notice a new grave.  Not once did I ever realize just how many people are in a season of grief.

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Today as I drove out of the cemetery there was a lady standing at a grave, kicking the dirt off the headstone  and paying her respects.  Although I would never do this -- I wanted to just go say hi, as if we are part of a club.  Weird huh?  I guess it's just that feeling of wanting to belong to a group -- even if it's a club I would never in my life choose to join.

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As I stood and stared down at my little boy I just had this weird feeling --  what was I there for.  I'm not sure why, but there is this sense of peace just being in the presence of his body, even if his spirit is long gone.  I wasn't sure if I should cry or do jumps over the pile of dirt that covers him.  Then I started thinking about some cool things I could do to spruce up my little boy's resting place -- all which are not allowed at the cemetery, like dumping an entire bag of wild flower seeds and pushing them down into the dirt. Can you just see it?  This 5 foot by 3 foot patch of a bazillion colorful flowers -- Limerick Garden of Memories would not like that.

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A few months back Madison started on this mailbox project.  I thought it would be a great idea to place a mailbox at Gavin's grave so Madi could drop off all her pictures she draws for her brother.  Well, it was finally finished and we dropped it off a week or so ago after the snow melted.  I saw it there today and it made me smile.  

I love that even though Gavin is gone, he is still a very real part of our family.  

Tuesday, March 16, 2010

Madison's Tonsillectomy...

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Yesterday was a very weird day from the start to the end. It was kinda like one of those moments in life where you all the sudden stop and have this creepy sense that you lived this moment in time before.  Yesterday was Madison's big day -- the huge monsters in her mouth were removed in hopes that she will be able to stay illnesss free for more that a week at a time and also that her speech would catch up with her peers.  

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Our day started pretty darn early and included a 5am gym run for me and an early breakfast consisting of jello and apple juice for the soon to be patient.  We all packed up and headed down to duPont Children's Hospital to send Madi off to surgery -- the same operating room that helped give our little Gavin more time on earth here with us.  It would not be strange for Gavin to visit the OR up to four times, maybe more a month.  It was one of my most least favorite places in the hospital -- yet the one place that gave me hope that we were actually "doing" something to help our little boy.

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As we helped Madison get checked in, I can probably assume all our minds were being flooded with memories.  All the same equipment that Madison's brother lived with attached to his little body she was now getting her chance to try out -- for real.  Madison asked if she could bring a photo of her brother into surgery with her -- she griped that photo the entire visit.  He went into to OR with her and was there in recovery by her side.  

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One of the most surreal moments came after Adam and I came back into recovery and waiting for her to wake up.  Adam stepped away for a minute and I sat there and starred at my beautiful little girl.  As I looked as her soft pale face and watched her breath through the LMA tube and O2 mask, our nurse said, "She looks just like her brother."  I'm not sure what touched me more, the fact that Madison looks like her little brother or the fact that this women who often took care of my little boy still remembers what his face looks like.



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As I watched Madison wake up and experience the pain of the surgery for the first time I was reminded who our little boy dealt with this day in and day out -- just gave me a nice reminder why his death was ok.  Needless to say it was a weird day -- trying to comfort my little girl while my mind was replaying the life and death of my little boy.

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In the end, Madison did an amazing job.  She woke up from the anesthesia like a champ and drank and slushy and ate a popsicle right way.  She was saying, "Ahhh" for anyone who asked and was feeling pretty darn good with all the pain meds.   She did great when we got home and ate more than we expected including a bowel of soup and mac and cheese.  Last night as a little rough, but nothing that a little ice pop and chased by pain meds didn't take care of.  This morning she is running around the house with mommie reminding her that she just had surgery yesterday and she needs to relax.

She is just like her brother.  My children don't know how to relax, or complain.  They love life -- even if it includes some discomfort.  

Gavi -- Thanks for watching over your big sister yesterday.

Wednesday, March 10, 2010

Lots of Things...

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Some of you may know that this coming Monday is a big day for our little girl -- she is getting her tonsils and adenoids out!  She has been sick for about six months or so with either strep or some type of viral tonsillitis.  So with her current illness streak and in combination with her speech delay it was decided that they need to come out.  I'm very aware that this is the most basic of procedures but it come with an interesting twist for our family --  we are taking Madi to the very OR that cared for our son for 3 1/2 years. The same people who worked hard to save our sons life will be taking care of our little girl.  It brings me great comfort but also brings up so many memories.

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This first time I took Madison to duPont for her ENT appointment was one of the most surreal moments, it was as if I brought the wrong child -- I wanted so bad to be standing there checking in Gavin.  It was just a very weird feeling.  I think being at dupont brings up a lot of emotions for Madison as well.  She is a little more difficult to read but I can tell her thought just by looking at her face -- she has developed this "I was just reminded of Gavin" face.  It's a tell tale sign she is feeling a little sad.  But like us all a little talking about Gavin and his crazy little baby monster teeth smile and we are all smiling again.

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Other new things that are happening these next few months include my new place on the Family Advisory Committee at the Children's Hospital.  I am very excited to go back and help give all aspects of hospital planning a parents persecutive.  I'm excited to give back a little to the hospital that was are home for so long.  Adam and I will also be taking part in the annual "Death and Dying Seminar" at the hospital.  This is a seminar for all 2nd year pediatric residents.  We will have to opportunity to tell our experience of the death process in a panel type interview.  We consider it a great honor to be able to play a roll in the education of these doctors and also being able to tell the amazing story of both Gavin's live and death.

I'm sure I'm missing something, as it seems like our calendar is filling up with things to do over the next few months.  It makes me very happy -- giving me a chance to carry on the memory of my little boy.

Monday, March 8, 2010

Peter's Place...

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A few weeks ago our family was able to hook up with an amazing nonprofit organization called Peter's Place -- a Center for Grieving Children and Families. This place is right up our alley. The first time we went for our intake I was drawn in by to bright colors and cool designs.


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The center is set up so that children can be in groups together with peers dealing with a similar loss. Madison is in a group of young children all who have loss siblings. Their play area is equipped with all kinds of toys which are great avenues for expressing their grief. They even have a sand box with little wooden caskets -- which some may find disturbing, but it is a great way for children to play out the death of a sibling.  Afterall caskets, cremation, graves and funerals are a huge part of their lives and our kids need to know that's ok.

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At the same time Madison has group Adam and I are able to sit with other families and talk. Our first group was eye opening -- I never thought I'd been there hearing about others children's deaths and understanding the deep hurt. It was a great oppertunity to just sit and listen and to feel a sense of community -- even if it's a community we never wanted to belong to.



Wednesday, March 3, 2010

Thoughts...

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Grief is a crazy thing -- sound familiar?  I think you are going to be hearing this phrase a lot for a while.  I'm learning that grief is a long process, one that cannot be understood and a process that changes almost daily.  Just as I think I've got things figured out in my mind and heart I seem to be thrusted into a new stage of the process.  I guess it's kinda like parenting -- once we think we have our children figured out they change and all the tricks we once used no longer work.


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Just today I was at the gym and thinking about life.  I was thinking about how at that moment our past reality was hard for me to even claim -- did that all really happen?  That's kinda what I was feeling.  I started to feel very numb, almost a little guilty that my heart wasn't overwhelmed with sadness and loss.  I was just kinda there -- not overly happy and not sad -- just kinda there.


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When we pulled into our driveway Madison and I took a little time to clean out our van, as she tends to use it as her own personal garbage can and like her little brother rips everything to shreds leaving a nice mess of little tiny papers behind.   We were about to get out of the van when I reached underneath the seat and pulled out an old used medical mask that my little boy once wore.  I held it to my nose trying to get any scent of what was once my little fighter -- it was gone.

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My heart and soul have been churning ever since.  I was once again pushed right back into the reality that was once ours, our sick little boy -- but more importantly our amazing child who defied the odds, who had a smile that could melt the coldest of heart and the sweet spirit only God could give.  Gosh -- grief sucks.  But as I have said before I welcome it in the same way I first welcomed my little boy into my arms -- it reminds me what I miss so much, it reminds me of special bond that only a mother can son can have, it reminds me that like his birth -- out of my pain can come the most beautiful of gifts.