Today, we light a candle in memory of...

As some of you know, over seven years ago  our daughter Payton died at the young age of four months and twenty-five days.  It is hard to believe we would have a seven year old today and that it has been seven years since she went home to Heaven. Today, December 12th is the day we remember our children who have died by lighting a candle at 7pm for one hour. Thanks to Compassionate Friends, a non-profit support group for bereaved parents, all over the world candles will be lit for 24hrs in loving memory of children who died too soon.

World Wide Candle Lighting in Memory of Children

The Christmas after Payton died, I wanted to find a way to remember and honor Payton.  I found this sterling silver candle at Potterybarn and had it engraved, "Our Hearts Remember".  It has been lit over the past seven years as we have honored and remembered Payton.  On her birthdays, anniversaries, at family gatherings for holiday events standing in as a representation that her memory lives on, her life lives on in heaven with Christ our Light and that she will always be with us in our hearts.  This candle will be lit in our home for not only Payton, but for so many other children that have gone too soon. Children I helped care for at UC Davis Children’s Hospital, children of friends who God brought into my life after our children had died and have walked alongside Aren and I in our grief journey.  As well as children who I do not know but feel sorrow at their untimely deaths. One of these children who I have loved, adored and had become a part of my soul, but I never met in person is sweet Evan Newport. As some of you may have read in the past on my blog, Evan and his family mean the world to me and God has used them repeatedly over the past seven years to bless me with their friendship. The following story was written by Scott Newport, Evan’s daddy, and I wanted to share it with you on this day of remembrance.

Two for Two
By Scott Newport

“Scott did you hear what you just said?”

“Yea, what do you mean?”

“Let me play back the recorder and you can listen for yourself.” This conversation took place at a small desk on the tenth floor of a downtown hotel in Dallas Texas. Everett Marshal was interviewing me for a Children’s’ Miracle Network radiothon in the Detroit area, my home. I was there for a Patient and Family Centered Care conference, a representative for the University of Michigan’s Mott hospital. Everett and I met a few years back; he flew in from St. Louis .

Before he could play it back, I knew what he was talking about and said, “I know its sounds odd but that’s the way Penni and I thought. Her prayer was Evan would die when he was at his best. Mine was I would be there when he took his last breath.”

Evan had an incurable heart condition associated with Noonan syndrome. After spending the first 252 days of his life in an ICU we learned medicine is not an exact science and took Evan home.

As Everett and I continued to talk off- mike I remembered another prayer I pleaded to God. This was during the early months in the hospital. Penni called me one afternoon telling me to come quick as the doctors thought Evan may die in the next few hours. Evan was four months old at the time.  I immediately turned my truck around and as I hurried to the hospital I prayed, “Lord please heal Evan’s heart and lungs. Lord, let your mighty strength be seen by all.”  Before I could even think another thought God spoke to me in my mind and said, “Scott, what if I let Evan die and through his life my greatness will shine brightly.”  That day was a turning point in my life. As a father I am always trying to fix things, make things better for family. But in this case I was helpless and that day I was comforted by knowing I could lean on my Father.

The title of this devotion is two for two but maybe it should be titled three for three. You see Evan did die last year, the day after Thanksgiving. He was doing great that morning and was playing with a Christmas globe, you know the kind that lights up and plays Christmas carols. Penni and I both walked into his home ICU and found him lifeless in his crib, both our prayers were answered.

And yes Evan’s life lives on in many shinning ways. If you walk into the University of Michigan ’s children’s hospital today you will clearly see a large hanging banner that reads, “Evan Newport Hope Award.” These are awards given to staff for excellence in patient and family centered care.  Even though the HOPE is an acronym for something else, I tell folks it also means, Helping Other’s Perceive Eternity.

Evan was seven years old when he went into eternity with our God.

Isaiah 40: 8
The grass withereth, the flower fadeth: but the word of our God shall stand for ever.

Our hearts remember.... 27 white roses....

Twenty-two years ago...my life was forever changed... and I was not the only one changed...an entire community was changed... forever.  I don't have a lot of words today for this post... really to this day... there are so few.  One thing I do say and can say... is it brought me to accept, know and love our Lord, Jesus Christ.  I still wonder why at moments, and still feel pain over the memory of this tragedy.  I will never forget my friend Chad who went to heaven that day...and all the many other childhood friends and their family members who were... forever changed.  Prayers, love and remembrance are on my heart today on this 22nd anniversary of the Carrolton Bus Crash.  I was only 12 when it happened...and in so many ways it seems like yesterday.  I will never forget and I am forever changed.  http://www.youtube.com/watch?v=XTTZ9ooBpPw
http://en.wikipedia.org/wiki/Carrollton_bus_disaster

Elmo was a "good fish... happy and brave"....

Monday the 26th, was a day I will never forget as a mom. A little over two years ago we welcomed a new little addition into our family... Avery's 1st ever fish pet... he was a red beta... that Avery lovingly named, "Elmo". Quite the fitting name for a fish that was red and made his home in a Sesame Street aquarium. Elmo first held up residence in Avery's bedroom, where the soft glow of his nightlight, would scare the dark scaries away, leaving Avery content with his company. It wasn't long before little Elmo had to put in for a change of address to the hallway countertop, due to little hands reaching into his tank through his feeding hole... leaving random trinkets behind such as ponytail holders, Polly Pocket shoes, whatever Avery felt little Elmo needed. Once she even tried to "brush Elmo's teeth" with her very own toothbrush and toothpaste! Uhm yah... what were we thinking letting a 3 year old have a fish tank in her room? Fools!

Elmo spent the good part of his life out in our upstairs hallway, lighting the nighttime trips to the potty. But, his final residence in the Bazzocco family house was the graduation back into Avery Mae's room. She was given another chance at five years of age to prove she was responsible to have Elmo share her bedroom once again.  Avery did fantastic! Never "testing the waters" again. Even growing in her awareness, the responsibility of feeding the little guy each night at bedtime. Elmo was our friend. Elmo was Avery's friend. He was her bedroom buddy and his little presence made bedtime seem a bit easier.

Over the past few weeks, we had been noticing Elmo performing strange swim strokes, such as the side stroke, the slow stroke and well... just seeming peculiar. Aren called it, I quickly brushed it off after a quick assessment and observation of him swimming like speed lighting from one end of the tank to the other. Secretly in the back of mind, hoping all was really well. All did seem well...until early afternoon Monday.  When Avery and I walked into her bedroom for "quiet time", I reached onto the dresser to grab her clock and set her time, when I saw... all was not well. I was shocked! Poor Elmo! OH NO! My poor daughter! My mind raced as to what to do… tell her now, tell her later, I can't leave her in her room to discover him herself, what do I do!? I quickly put the clock back up in front of the fish tank and asked Avery to come over to me. While praying for the right words, I gently let her know that her little Elmo had died. Immediate shock was on her little face, paralyzing my mother's heart for a moment and forever touching me, then immediate tears began to fall from her sweet face. I quickly scooped her up, held her tight and carried my big 45+ pound, 5 year old down the stairs and rocked her like my little baby that she will always be. As we sat in the rocking chair, she wept, I wept, and I prayed feverishly for God to help me with this. Despite the journey in life I have been through, I was in unchartered waters and was feeling so ill-equipped for this poignant moment. A moment in my mother eyes that could forever shape my sweet daughters view of death, grief and coping. So while I rocked her... many thoughts came to me. Experiences as a previous Child Life Specialist and working with children and talking with them about death and dying... countless past conversations Avery and I have already had in her asking and understanding her big sisters death... and my own experiences of loss as both a child and adult... all came flooding in. I had visions of my childhood and how my mother supported me through losing numerous beloved pets, family members and even young friends...and how she encouraged us to be a part of the process of saying goodbye and remembering them too. Death, loss and grief are no strangers to me, where I once turned from them and ran from the awareness of them... I'm trying more to face them and I'm still learning to accept they are a part of life. Fear them not, OH NO... I still fear them, the sting, the finality, the mind numbing blow, but I find comfort and solace in knowing that I have a Father in heaven who tells me that there is a place far better than this place.  A place where He has gone before me and is preparing a place for me, for my loved ones, who believe in Him, in Christ. Heaven is real! It is not fictional, it is not false, make believe or folk-lore. It is a real place and I rest in knowing and believing it is our final home, our final destination .  Some have asked, for pets too? Well, not sure.  The Bible does have scripture that makes me wonder, but I have not been able to clarify to say with accuracy.  In Isaiah 11:6-8 (NIV) it tells us that, "The wolf will live with the lamb, the leopard will lie down with the goat, the calf and the lion and the yearling together; and a little child will lead them. The cow will feed with the bear, their young will lie down together, and the lion will eat straw like the ox. The infant will play near the hole of the cobra, and the young child put his hand into the viper's nest." If I am understanding this correctly this is scripture from the prophet Isaiah who is talking about the "New Earth" after Christ comes back... how Christ will restore this world to a state/place like Eden.  Either way, heaven is a place where no man has seen... but if God created animals here for man to have dominion over and because He is all knowing, He knew we would befriend them, not just use them to subside off of, but fall in love with and live together with, bond with.  This is not scripturally sound, but I can't help but believe our pets are in heaven too.  But hey who knows?  God is good...all the time, so why not with something like that too.  Avery often asks me are animals in heaven?  Like the taxidermied (is that a word?) steer that she saw at Breakaway at church last year. OH BOY!!! Did that ever create confusion in her little mind:  "is it alive, was it alive, is it dead, why is it not in heaven, why is it's body still here, why isn’t it buried"... thanks Breakaway "décor staff" for making the concept of death even more confusing for my child and more challenging for me as a mom to explain. :) Just kidding. But I have told Avery, "I am not really sure, since I've never seen heaven, but I tell her why not?" Heaven is a place of perfection, glory... goodness and surely all good things that God created are there, she even asks do we eat or drink in heaven? Ugh!? Someone needs to write a book on how to answer these very specific preschooler questions, hey maybe I'll take that on some day… in my spare time!

Anyways, after about 45 minutes of rocking, my little heartbroken child fell asleep in my arms. I laid her on the couch so she could sleep. Meanwhile my other sweet child, Ben refused to nap in his crib, he missed his entire nap that day! First time ever! Not sure what that was all about, but hey the day was already not going so well, let's just pour salt on it and watch it festure!!!! So while Ben and I played upstairs quietly, Avery slowly woke up. After calling out to me, she refused to come upstairs. I was thinking she did not want to be near Elmo. I felt sad for her fear and discomfort, but understood that was ok and normal for her to feel that way.

After some more cuddling time with both kiddos... Avery began to ask more questions. One that nearly stopped my heart for a moment. "Momma, when Payton died... did you bury her at the cemetery where we go?" GULP, I wasn't sure why that was so tender for me to hear, it wasn't like we hadn't had this conversation before as we have visited Payton's grave over her 5 years of life. But to hear it in that moment and to see how she was beginning to connect the “death dots”, it was quite uncomfortable for me to hear. But I did what any good mom would do, I quickly prayed for wisdom and the right words, took a quiet deep breath and simply said... "Yes baby we did, remember how we have told you Payton's little heart was not able to work well any more... because it was sick... well her little body couldn't work any more either because it needed her heart to help it be alive... and her little soul... the part that is inside of you that makes you feel, think, talk, laugh and be who you are... that part went to heaven... so when that happened it was time for us to have her funeral" and well, that spilled into numerous other questions: "how did you bury her, in what, what did the casket look like, and on and on...” All the time she was asking one question after another so quickly I could hardly catch my breath from the previous question.  I tried to strike a healthy balance of what to say and what not to say and how much is enough, but not too much. I tried to turn the questions back to her sometimes, like "Well what do you think baby?" And there were even several questions I just had to say, "I don't know the answer to that... only God knows". I also tried to assure her of her good health, our good health and our other pets good health and that no one, most importantly her, did anything wrong to cause Elmo to die, it is just what happens. It was quite a powerful talk we had.

After our conversation, Avery said to me... "Mommy, I want to bury Elmo and have a funeral for him". So we made our way to Joanne's craft store and bought a little brown wooden box with hearts on it, pink and red paint, pink and red ribbon (cause pink she said is her favorite color and “red was Elmo’s”) and some sparkling rhinestones to adorn his box with. We came home and she went right to work. It was amazing to see how she was responding to her efforts in doing this last loving act for her beloved fish friend. She sat and smiled while designing it and frequently pointed out to me each little step she was making. When she was done she asked me how to write, "Elmo... love you really much". Truly priceless,  straight from the mouth of babes. It made me think about how healing a funeral or memorial can be for someone who loses someone or something that they love.  The acts of the experience bring about healing, connection, celebration, honoring, and letting go...saying goodbye to the one loved and lost. All throughout history, until more present day, families who lost a loved one were responsible for burying there loved ones in different ways than we do today. In doing so, it was often the men of the family that built the casket for the deceased. It was often described as a final act of service of love and depending on the financial status of the family; the caskets would often be built in great detail to exemplify ones love and grief. So... moving away from my tangent... Avery Mae lovingly made her little fish friends final resting place.

After dinner, Avery and I headed off to her first ever Daisy Girl Scouts meeting. She didn't want to miss it and I gave her the choice of staying home or going. She chose going and it was a nice distraction from the day. She met some new little girl friends, learned the Girls Scouts Pledge and planted some marigold seeds. Then we headed home with the plan to have Elmo's final farewell. We gave Avery some choices of when and where to bury Elmo. She chose at night after Ben was in bed, just her, Aren and I, outside on the side of the house by our garden. Daddy dug the hole, while Avery and I prepared little Elmo. Avery asked to use the net to get Elmo out... but then after attempting, anxiously handed it over to me. Bless her heart. While I "fished" him out, Avery carefully lined his little box with tissue so Elmo had something soft to lie on. We laid him in his soft little box and said our goodbyes and closed the box. Avery asked to put his box in the hole, so we let her, and then I said a prayer of love, thanks and healing over Avery.  Aren covered Elmo's box with the dirt, then Avery decorated it with flowers she had picked from around the yard. All done by the light of the moon and a single flashlight! I am sure my neighbors were wondering what in the world we were doing.

Then we headed on in and started her bedtime routine. Avery was seeming more like her little self by that point... bouncing from point A to point B as usual, and talking non-stop.  But in her little eyes I could still see a little grieving girl. It was breaking my heart. She continued to ask questions about why and how Elmo died and I continued to try to comfort her in my answers. And like she does every night, talked me into cuddling up beside her in bed till she fell asleep. Only this time, I wisely stayed, knowing her little heart really was not wanting to be alone. I laid there beside her, talking with God for quite some time. Thanking Him for the comfort He has given me in my life of 35 years at moments of loss, so that I may comfort others in their times of loss (2 Corinthians 1:4)... family, friends, strangers, but most importantly my sweet child.

It has been 3 days since our Elmo friend went to "Fishy heaven", which is what Avery calls it. The day that Elmo died she told me she wanted to get another fish "that day and a red one like Elmo". I explained to her that another fish will not replace our friend Elmo and that someday we can get another fish, but we need a little time to go by before we do that. She smiled and skipped off. But the grand-daddy of all questions was asked today,  "Mommy...if we buried Elmo in the ground... in his box... how come we didn't flush him down the toilet... where all the other fish go to, to get to fishy heaven in the sea... like on Nemo!" UGH! Great more explaining to do!

Enjoy this little clip from The Cosby Show... on how "NOT" to perform a fish funeral for your preschooler... I just love this show!
http://www.youtube.com/watch?v=Jo_bn2blWSY

Sweet Little One.... Till Heaven We Shall Meet

Creator of the universe

Keeper of the Stars

Guardian of the heavens

Look within my heart

Search the depths of my spirit

Comfort my aching heart

For you are also

Creator of her soul

Keeper of her spirit

Guardian of my child

~Joanne Cacciatore, PhD, MSW "Dear Cheyenne"

Sweet little AnnaBella Grace....this is my prayer for your mommy....and so much more.... look for a little girl with cute blonde curls....her name is Payton.... she'll be your friend for sure... till heaven sweet little one.  Love to you and your beautiful mommy.

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well preserved body. But rather to skid in broadside. Thoroughly used up. Totally worn out. And loudly proclaiming...WOW! What a Ride!"

~Unknown

Just a little quote I recently learned of from a mom friend who is going through a really difficult time right now... I read it and truly couldn't help but smile... at the vision it gave me.... it is soooooo true!  Love and Prayers to you Mo.

"A Triumphant Spirit"...all because of one...amazing child.

Payton's Tiny Foot and her daddy's thumb~2003

Have you ever walked in this life feeling alone? Do you ever wonder if what your going through is happening only to you. Ever feel like your walking in shoes only made for you…down a path never ventured on before? In 2003, when our daughter Payton was born, I found myself feeling this way. Life was not turning out how “I had planned” it too. News that was mind-numbing, being delivered at what should have been the most exciting time of mine and my husbands life. And a burden placed so heavy on our shoulders it nearly crushed us. And all the while trying so hard to strike a balance of celebrating our daughter’s life with grieving the anticipated loss of it. Two experiences that seemed so unfairly paired. But then God brings someone into your life that reminds you…your not alone. There are others, walking in your similar shoes. You do have someone to reach out to. Someone who can relate to your world. God did just that when he brought into my life, The Newport Family. Scott, Penni, Noah, Chelsea and Evan were brought into my life through the Noonan Syndrome Support Group (www.noonansyndrome.org). Penni and I discovered one another through their on-line email forum, while searching for hope in coping with our children’s diagnosis of Noonan Syndrome. We found hope in one another. Evan and Payton were born 15 months apart. And the Newport’s had already been where we were entering. It was through the forum that Penni and I became friends walking this journey together. We emailed, occasionally talked on the phone, sent one another tokens of love as gifts and found some peace in one another. Through each other we knew we were not alone in how our children shared such similar medical issues.

Payton Hadley Bazzocco May 28, 2003 ~ October 23, 2003

Over the years our experiences took different paths. But tragically we are walking similar paths once again. Their sweet, amazing miracle Evan , went home to be with Jesus on November 27, 2009. Over the years of Evan’s short, but triumphant life…Scott Newport, Evan’s dad, has written down many thoughts, insights and feelings. He has shared them with the masses, all in the name of a father’s love. His “Daily Thoughts” have always been tender, heartfelt stories of life with his son Evan. He continues to write his, “Daily Thoughts” as he copes with the great loss of Evan.

Scott has already changed the world, by simply living as Evan’s dad. One of the tributes to Evan’s life that Scott has accomplished is making children’s furniture out of old, imperfect, unwanted wood. Scott makes the furniture with strong, yet tender hands. And gives it to others out of love and respect for Evan. Scott and Penni’s story…Evan’s story…the Newport’s story is amazing. They bring meaning to what it looks like to live triumphantly. To persevere, to grow in spirit and in character. It breaks my heart repeatedly, as I grieve the loss of Evan…along with Payton. I rest in knowing I will hold Payton again someday and finally meet sweet Evan face to face. Meanwhile, I am asking for two things: prayer and voting. Please pray for my friends, The Newport’s, as they cope with living this life without their precious Evan by their side. I pray you ask for strength, peace, comfort and for God’s love to be seen in the valley they are walking in. Please take a moment and view and vote for a video that was made shortly before Evan’s death. A video that demonstrates, the power of the human spirit to triumphant in life’s overwhelming challenges. If he win’s you have a chance to make a difference in the lives of other families affected by Noonan Syndrome.

http://extraordinarymeasuresthemovie.com/#/quilt

(If your unable to access Scott’s video by this link, you can do a search for his video on the site http://www.extraordinarymeasuresthemovie.com/
type in the search spot for Evan Newport.  It will be the image with Scott's hands holding a wooden mallet.) Thank you for your love and support of this amazing family.

~An article written about Evan's death. 
http://www.annarbor.com/news/7-year-old-evan-newtons-short-life-brought-hope-to-others/

~A beautiful slide show of The Newport Family...just before Evan's death. 
http://www.footprints.myshowit.com/newport/index.html

Our little chair that Scott made for Payton before she died, 2003.  Her little sister Avery and little brother Benjamin now enjoy sitting in it.  .   

Thank you Scott, Penni, Noah, Chelsea and always Evan...for inspiring me.  Encouraging me.  And sharing with me your sweet little boy Evan.  I can only imagine what those two kiddos are up to in heaven.  I can almost see them now...running around in heaven with their cute little blonde curls and sweet, spunky spirits.  Eating vanilla ice cream cones (another blog entry for another time...about Payton) playing with Evan's favorite toy the flashlight...and keeping the Angels on their toes.  And meeting up for a game of hide n seek with many other sweet children, whose wonderful parents have also been brought into my life....  Thank you God for bringing good out of tragedy.  In the wonderful friendships and people you've blessed me with...so none of us have to walk this sometimes, lonely, journey alone.