I just hope you remember me

These last few months have been bizarre.  I feel like I forget how to feel or act.  We are working on getting settled into this new life.  What makes me crazy is the people that know the "new us" never knew the "old us".  Some don't even know about the struggles, the years we spent apart, and YOUR FIGHT.  Some have no clue of what a warrior you are and were.  How are we the family missing a key part.  I used to want an even number of kids, always.  I wanted every child to have a best buddy.  I never imagined the boys losing one of their best buddies.  We will never forget you, not ever, never, without a doubt.

Last weekend, I touched your hand mold for the first time since you passed away.  It was just like I think of it in my mind.  Your skinny fingers, your hand, so small, just perfect.  You used to love to play with my long hair.  Once, when I had it trimmed, you complained because you couldn't reach it as well.  Today, we went through some stuff from you room.  YOU were so loved by everyone.  The kids were blessed from the folks that thought so much of you and our family.  Your personality was electric.  And, we brought home the cotton candy machine!  I know you loved that.

We think of you everyday.  In the past year, some things have improved.  I can drive now without hysterical tears.  We talk a lot about you and what you mean to our family.  The kids know that when they see hearts, that is means they are thinking about them.  And well, your dad and I, I think we are learning to live with a broken heart.

On June 1, we will start the Change for CHOP campaign!  This money goes to Child Life, Music, and Art.  You LOVED those!  SO, guys, start collecting your change!  Our goal, this year, is 536!  The miles from our house to CHOP!  Those miles Adam drove so many times.  Those miles, we sometimes drove together.  The happiest miles and the devastating miles.  Philadelphia, especially the people at CHOP, are forever so much a fantastic part of our life.  We love you all and thank you for praying for us and sending special thoughts!!!

Mother's Day

What do I want for MD?  I want my child back, healthy and free of disease.  I want to have never seen kids on ecmo, struggling to breathe, and struggling to survive.  I wish every child had a pulse of screening and that CHD's were picked up on prenatal ultrasounds.  I wish all doctors offered families hope.   I wish every family with a sick child had a wonderful PACT team like we had at CHOP.  I wish that other mothers never have to endure the heartache that I feel each day and that not another family moment is taken for granted.  I want to have never known a child who died from PH, cardiac illness, cancer, or the million other childhood diseases that are so prevalent now.   I want every mom to feel as loved and treasured as I do by Adam and, on most days, our kids.  I want single moms to know what rock stars they are.  I want my mom friends battling disease to be cured.  I want everyone to treasure the funny moments with your kids.  Enjoy them being wild and carefree.  I want everyone to have a 4 year old tell them everyday that they are their best buddy.  I want everyone to have a 3 year old twirl around in her new dress and then tell you that you are "boo tiful".   I want everyone to have a child like Easton-a treasured soul wise beyond his years.  I want everyone to have a Weston-a warrior, bringing light into the world even after death.  I want everyone to have an Abby-a patient, caring, baby loving girl.  I want everyone to have an Emery-my bossy, bug loving, artistic child.  I want everyone to have a Sutton-the class clown always coming up with hilarious things.  I want everyone to have an Avery-a bossy 4 year old ready to take over the world.  I want everyone to have an Ellie-a sweet girl with a naughty streak.  And, I want everyone to have a Kinley-a sweet love who spreads joy by giving sweet smiles.  I want my friends who have lost children to never have endured that pain.  I want my friends who struggle with infertility to miraculously get pregnant or adopt and fill their home with sweet faces.  My hope tonight is that our kids know that they are loved more than the moon and the stars and maybe, just maybe, Weston will come see me in my dreams..  I love you all and hope you have a wonderful day tomorrow!