MEMORIES

Today I'm grateful for memories.  I'm grateful that we made many with you, knowing that you wouldn't always be here with us.  Whenever I see this picture, I think of the anticipation of going on your Make-A-Wish trip to Disney World.  None of us had EVER been before.  Thanks to you we were able to take the whole family down for a once in a lifetime vacation.  It was hard work getting you ready to go.  Your trip had to be post-poned 3 or 4 times due to the fact that you were really sick and in the hospital.  The Dr.'s even thought you might not make it.  It was a scary time, but the thought of going somewhere warm and fun with you and the kids kept us hopeful.  After a 40 day hospital stay we finally got to take you home.  (vent and all...just in case you needed it)  It was overwhelming but I was so determined to make it work.  We left 2 days after coming home from Dartmouth.  See how good you look in this picture?  (besides the fact that you are tired)  This was right before we walked out the door to head to Florida.  Thanks for so many good memories Ben.  I need them, especially this month.

xoxo

Mommy

KALEB

I don't always hear much from Kaleb when it comes to Ben.  He tends to keep it on the inside mostly.  But I always know he's thinking of him.  He came home last night and woke me up to show me this picture that he had colored for Ben.

My letter to you....

Benjamin,

I miss you terribly.  Sunday we went to the Make-A-Wish Christmas party without you.  That was hard.  I got most of my tears out in the beginning when I saw your wish granters.  I just couldn't help it.  They were a big part of your life, enabling you and the rest of your family to do such fun things together.  I'm so thankful for those memories and that they made it possible.  After the tears we jumped right into action, helping where we could and just enjoying the spirit that was there.  Your brother and sisters had a wonderful time - no surprise there.  We even got to be on the news because of YOU.  I will never turn away an opportunity to talk about you...even if it means that I have to do it through tears.  Today I took your brother up to Dartmouth to see one of YOUR doctors, Dr. Peppin.  She was your neuro-opthomologists.  Remember her?  She is an eye/brain doctor.  Since Kaleb has a cyst on his brain, she takes care of him too.  She's a little concerned about your brother and thinks he needs to see your most favorite doctor, Dr. Filiano again.  It's been over three years since Kaleb has seen him.  I smiled inside because you know what?  I know he'll take great care of Kaleb and make sure that whatever needs to be done will get done.  He's pretty amazing that way.  Driving up there always gives me time to reflect on the many trips that we would make up there together.  Just me and you.  That was our time and I loved it.  I loved sharing you with the many nurses and doctor's that took such great care of you.  Remember how we would make cinnamon rolls for all your favorites up there and you would wear the Santa hat and we would make deliveries all over DHMC?  I did that with your brother this year, except he wouldn't wear the Santa hat, and he didn't really want to make the deliveries either.  Silly brother of yours.  I missed having you by my side.  I miss doing all of these fun things with you.  I hope you know that.  And I hope you know just how much I miss you and how my love continues to grow for you...

xoxo

Mom

A loving gift

Junior and Heidi sent our family this lovely Christmas gift. (scroll down)  Click on the picture if you want to read the poem or see the ornament better.  You might want to grab a tissue or two in case, it's hard to get through it without tearing up.  Thank you my dear friends, from the bottom of my heart.  We are grateful for such loving and thoughtful friends.

DECORATING BEN

My parent's are doing a great job keeping Ben's grave festive.  My mom bought these pumpkins for Ben's grave a few weeks ago and then today my dad came home with this CUTE Christmas tree.  (first Christmas tree to go up in the cemetery by the way)  It wasn't until I was standing there, after he secured the tree in place, that I realized Thanksgiving is tomorrow and this will be our first one without Ben.  But in the midst of sadness, there is much to be thankful for.  I'm so thankful that I was lucky enough to be his mother.  And I'm thankful for the knowledge that we will be reunited with him again someday.  We love you Benny!

Baclofen Trial

I was looking back through some of his hospital pictures tonight because GOSH DARN IT I miss him.  Tonight I was at a church meeting that happens twice a year.  I was sitting with BB and her husband just like I do every time we go to.  About 10 minutes before the it started, I realized that it was tradition for me to always bring Ben in his jammies because he LOVED being out with us on our date night.  He was welcome company too.  Always so well behaved and very quiet.  His absence hit me hard.  This was the first time we didn't bring him.  And then the tears came...and came...and continued for a little while.  Thank goodness I wore my hair down and could hide behind it.  It's moments like that that hit me completely out of the blue.  These pictures made me smile tonight.  His baclofen trial was done up on the fifth floor of Dartmouth in a part of the pediatric section called "Pain Free".  It's like a version of the OR except way friendlier for children.  And because I was a regular there, they were always so good about letting me stay during the procedure.  They knew I wouldn't get in their way or faint.  They even let me take pictures when they were putting him to sleep.  These were taken sometime in 2008.  I think I was newly pregnant during this stay and really, really sick.  If I remember correctly, I had just had surgery myself the day before to place my port.  My favorite picture of this series is the last one.  He had been sleeping (due to the anesthesia) for hours and I was sitting by his bed waiting and waiting for him to finally wake up when out of nowhere he opened his big, blue eyes.  I always loved seeing those blue eyes of his.  They were so beautiful.  Looking at these pictures makes me miss all those great people up at Dartmouth.  Wishing somehow things would always stay the same but knowing that life doesn't happen that way.  And I also know somehow we grow stronger from our ever changing lives, whether we like it or not.  So I guess it's a good thing, right?  And even though it's really hard, I'm forever grateful for the strength and the growth that I have gained from my earthly experiences because I know I'm one step closer to becoming the  person that my Father in Heaven wants me to be. 

(even though sometimes I go kicking and screaming)

TRIBUTE TO BEN

Some of you might know that Steve helped coach the Laconia Varsity Football team last year as well as this year.  Because the coaches and players love Steve, they wanted to dedicate this year to Ben.  We were honored.  The players wore his initials on the back of their helmets in memory of him.  

The team had leftover stickers and so Steve brought them home to put on the kid's basketball sneakers.  They were really excited to be able to honor Ben while on the court.

Here's to YOU Ben.

xo

GRAVE MARKER

This process has been tedious.  I'm hoping we are almost there.  I decided last minute that I wanted to change his picture.  I didn't really like how the other one came out and thankfully a good friend of mine convinced me to change it.  She reminded me that every time I visited his grave and saw his picture, I would always regret not getting it the way that I really wanted.  Sometimes I tend to settle so I was grateful for her advice.  I love his picture for a lot of different reasons.  I love that she captured his hand with his thumb in between his middle and ring finger.  That was classic Ben.  It reminds me of his wonderful nurses and caregivers that took such amazing care of him whenever he was in the PICU.  (it's a sign for N, nurse)  I would love some feedback if you have any.

VISITING MY SON

I hate that it's getting colder.  Even though I know he's not really in the ground, it's hard to know his body is and that I can't do anything to keep him warm.  While I was visiting with Ben, I took a knife from the car and dug up the rocks that made the E and the N so that they weren't 'mashed' into the dirt anymore from the big truck that ran them over.  It looks much better seeing them on top of the dirt instead of mashed into the dirt.  I always try to find something to do while I am there because other wise I just sit and cry the whole time.  

Sitting with Ben gives me time to reflect.  And I find it so interesting that at this point in my life, who would have thought my path would have led to this?  Me, sitting at my son's grave on a cold November evening at the age of 37?  It's not anything I ever imagined for myself as I was growing up that's for sure.  But you know what?  If 8 years was all I got with Ben here on this earth, I'd take it over and over again.  I feel like the luckiest mom in the world to be HIS mother.
I love you Ben, and I miss you just as much.

xoxo

Ben's CUTE factor...

...is WAY off the charts with these pictures.  I loved putting hats on him because they accentuated his CHEEKS.  And what marvelous, kissable, squishy cheeks he had...all the way up to the end.