The day it all changed

I will never forget us coming in for the day and I knew you didn't recognize me.  You stared in a distant gaze.  Your movements were sporadic at best.  Your eyes longed for you dad and me but we couldn't figure out how to help you.  You just kept starting.  I think you were starting to say goodbye.  God knew we would need that comfort.   We needed just a little more time.  In hindsight, this is the day that we lost touch.   I hope and pray that you went to Heaven that day awaiting a land of milk and honey-or hot cheetos, sour candies, and your best buddy Meg.   This is the day, I feel that you began your journey to Heaven and God was giving us sweet time to say goodbye.  You woke up and said Mama and a few other words before a fever of 105 came.  You were so restless that you ripped out your picc line. We had to strap our hands down because you were so feisty.   I am so thankful that you had your favorite nurses to care for you during this time.  We stayed in the sleep room and Meg would update me.  I would come check on you, on the cooling blanket.  You seemed so cold and yet so hot.  It wasn't fair.  You had fought and fought.  You were the Little Prince.  Somehow, I heard a small voice say this was the start of the end but I couldn't believe it.  That was unacceptable.

A year ago

I take myself back everyday-maybe it is torture or therapy-I really don't know.  I look back because I want to gaze at your sweet, steroid filled face and look at your sweetest smile.  As we near your one year Angel-versary, I realize that next year, I won't be looking at the same things.  How have we been a family for an entire year without you, my Little Prince?

On your Angel-versary, on Earth, we plan to Feed the Fire.  We want to feed the firemen and police heroes that have made such an impact on you life.  We are overwhelmed by the generosity of others because THEY have made this happen. AMAZING!

Yesterday, we were able to meet one of your fav nurses dad's.  It was AMAZING.  He may have never been able to meet you in life but hugging him just made me feel like he was so in touch with you.  Maybe I miss Philly more than I ever can admit.  And then, maybe it isn't Philly, maybe it is just you.

I miss your jokes.  I miss the creepy thing you had on the back of your bathroom door to scare me.  I miss your crazy tastes in food that caused me to order out from a zillion different places.  I miss your grocery lists.  I miss you.

Not a day makes my pain any better.  It is unreal.  I see so much of you in Kinley.  I have no doubt that you loved on her before I got to hold her.

I never thought, more than a year after transplant, that this is the celebration we would be planning.  Not once.  Not ever.  But here we are.  I hope that on your Angel-versary, you roller-skate through Heaven giving out lollipops, ice cream cones, and Flaming Hot Cheetos with you best friend Megan. I hope that Papaw Mitchell, my grandma and grandpa, and my dad are there to cheer you on every minute.  Go wild sweet prince!  Enjoy it!  Happy Angel-versary!!!

Feed the Fire

As your one year Angel-versary approaches, my heart hurts, my stomach is in knots, and I just want to hide in the corner and cry.  Your dad and I relive everyday through my Time Hop ap.  It is a mixed blessing to relive those sweet days with you.  Your super round face from the steroids-I can still feel how they felt-your sweet long fingers, tiny baby toes that I used to kiss, and the softest hair in the world.  I think about your smile and you asking Dr. Spray, ever so sweetly, if he had your old heart and lungs in a jar on his desk.  You are a warrior my sweet little prince.  God blessed us with you.  Now, it is our turn to give back to those that helped you (and our family) SO much!

Weston LOVED the firemen and so many firemen blessed his life. Let's show them how much Weston loved them and take meals. For the volunteer fire departments, we will plan to take Gatorade, Water, and snacks. For the other departments, we are thinking pot luck or other hot meals. Please list what fire department you would like to help with and I will add it to our master list. We encourage you to reach out and meet your local firemen in honor of Weston. Please message me so I can send you a card from Weston's Warriors to deliver with your goodies.

I miss you forever and always!  

11 months

“Grown-ups never understand anything by themselves, and it is tiresome for children to be always and forever explaining things to them” 
― Antoine de Saint-Exupéry-The Little Prince

Today is our sweet Easton's 10th birthday that horribly coincides with his brother's 11 month Angel-versary.  I was secretly hoping Easton would be busy picking out everything he wanted to do and would forget about last year.  But, that didn't happen.  After he picked out his cupcakes at the bakery, he said "Mommy, remember last year when we gave out doughnuts with Weston.  That was his last good day mommy."  And it was true and it was all I could do not to just fall into a ball on the floor crying.  Then, I thought about all of the times that Easton was brave for Weston.  So many times, even as young as 17 months old, Easton kissed Weston (W was 9 days old) and said "I wuv you bro".  Maybe, just maybe, Weston was being extra brave for Easton.  He would never have wanted to die on his best friend's birthday.

I warn you, and myself, the next 28 days are going to be brutal.  Watching the end of your child's life unfold is like a dagger to your heart.  I have thought about getting rid of my "Time Hop" and abandoning all social media for the month but that would not be helpful because, so many times, you all uplift me.

Recently, I have been dreaming of wandering the halls at CHOP.  I can't decide if I am looking for Weston or what but it just feels so much like home.  I have even dreamt of sleeping on the plastic couches.

So, for the next 28 days, bare with me.  I still feel so much heartbreak.  I just wish I could have known how to "fix him".  And maybe not consciously knowing that he was dying was a great gift.  I remember in one of the last days, I ran across the street to grab lunch.  I bumped into our Chaplain (who is one of my fav folks) and he said something like "What does your heart say".  I have thought about that so much because that day was the first day that it was come into my mind that Weston might not survive.  I quickly put it out of my mind not speaking of it again because I never wanted Weston to think that I was giving up on him.

I have to remind myself a lot that he is whole in Heaven.  When Adam and I get there, he will be running, free of oxygen, wires, tubes, and hopefully, he will jump into our arms and say "I was always the brightest star in the sky, I never left you"

The Land of Tears

“It is such a mysterious place, the land of tears.” 
― Antoine de Saint-Exupéry, The Little Prince

I am there.  I am in the land of tears.  I know such pain that I had never known had existed.  10 months seems unimaginable.  I am so afraid to forget the memories and too scared to remember.  Ellie turned 3 today.  Ellie's life has been such  whirlwind.  She has never had a bday at home!  We found out we were pregnant a bit before we left for CHOP.  I am sad.  Sad to think of you, Weston.  And sad to think of those we have left behind.  I browse through pictures that make my stomach turn to knots-the kind you get before crying yourself to sleep.  Your dad is so strong.  He holds us through it all.  He is our rock.  Always and forever.  Kinley was sick the other day.  I found myself counting her breaths in my sleep, just as I did with you. I woke up thinking I was on the couch at CHOP.  Then, I was sitting in the dark scared and confused.  I miss you, my little prince.  The kids miss you too.  Easton is so brave-you have to be standing on his shoulder giving him pep talks constantly.   Please keep loving on him. Emery cries a lot about you.  She is so tender hearted.  I know that wishing for you to be back is wrong.  You are in the perfect place with the perfect body.  Still, my sweetheart, I yearn to hold you and carry you without oxygen or a backpack.  My tears seem so insignificant because they cannot bring you back.

And I miss you

Maybe that should be the title to every blog?  I think of you everyday.  The kids reminisce about you everyday too.  No day goes by without them talking about you.  Their memories are so sweet.  But, tonight I miss you.   My mommy heart aches.  Santa came to the house to see the kids tonight in his firetruck.  You loved the firemen.  You always told me how you wanted to be a fireman.  I didn't have the heart to tell you that it was never going to happen because of your heart and lungs.  I am so thankful to our friends at so many fire departments but especially the Philly Fire Dept and the Bloomingdale FD that were kind enough to give you your dream.  I love you and miss you to the moon and back my little prince!

Happy Angel-versary donor family, and Happy Transplant-aversary sweet boy

The title really speaks for itself.  Adam and I have such mixed feelings on today;  We were so incredibly happy that Weston was finally going to get a new heart and lungs one year ago today, we knew that another family was without their baby at the same time.  How do you overcome that?  How do you thank such selfless people?  We chose to honor Weston's donor-last year, and this year by having people sign up to be organ donors.  Last year, thousands signed up in honor of Weston and his sweet donor.  To me, organ donation is the ultimate gift.  His transplant meant our family was brought together and for a brief time, we planned on going home.  Thinking back now, God had other plans.  A year ago, just a couple of hours ago, Adam and I went to dinner with friends.  They were getting Weston settled and we had a moment to grab a bite to eat.  Upon arriving back, the prince was doing great.  As soon as he heard our voices back in his room, he tried to sit up.  He arrested.  The next minutes are a blur.  Adam and I were in a corner of his room begging God to not take him.  Meg came over to talk us through things while fav nurses did CPR on him.  Dr. K ordered in VA ECMO-Adam and I will NEVER forget that.  Dr. M, a new surgeon whom I had heard rave reviews about and had met earlier that morning came in, prepared to do ECMO.  At this same moment, doctors were being paged from their Christmas party across town.  So, as news spread, doctors started running.  Now, in retrospect, it was Weston's way.  He loved to be the life of the party.  At the time, it was horrifying.  I am so thankful for Jeff Chase.  Jeff was a total boss taking care of the entire code.  Lori, Erin, and Keith all did a fabulous job.  You can't just thank people who saved your child's life.  There just aren't enough thanks in the world.  Finally, once everyone thought he was settled, Adam and I went to the sleep room and cried.  We cried for the donor family that we had prayed for, for so long.  We were happy that it was finally Weston's turn at transplant, But, the future was so unknown after the arrest.