Complete funk

Guys and gals, I am in a complete funk.  Halloween was a favorite of Weston.  He rocked Halloween every single year.  Of course, our kids have fabulous costumes and love the trick or treating but, I think so often, of his Halloweens.  Maybe his last Halloween when Ellie ate so much cotton candy that she had it up her nose?  Maybe the one before that when he got tremendously ill after he trick or treated? So, this year, I am trying hard to let the kids do and be what they want.  Our fav costume that Weston wore was the flaming hot cheeto costume.  Adam and I have it in our bedroom.  Everyday, I may take 7 kids out but, in my heart, I am always taking 8.

Some days are just better than others

Sometimes, I think about all of the things your dad and I miss out on with you.  When I went to the homeschool equivalent of parent teacher night, I walked past one class very quickly.  Thankfully, my childhood friend was the teacher so I am sure she knew why I couldn't look in her direction.  You would have been in that class.   I see those kids and it is hard to imagine you in there.  I am sure you would have rocked 3rd grade but WOW, that seems so old.   I don't always think about you being big because we struggled so hard to get you to grow.  I saw some pictures of you yesterday.  Those hospital days feel like yesterday and an eternity away at the same time.  In so many ways, I miss those days.  Everyday knowing you were being cared for by the very best but, I will never ever miss the scary days, the dark days, and the ones where only tears were shed.

I was thinking tonight how yesterday, Kinley took her first steps while I held out a treat.  You loved treats and your first time walking was so you could eat a banana.  I think about what you are doing in Heaven, a lot.  I know Heaven is a wonderful place and I am sure you are cared for but, I would enjoy a little glimpse.  But then, maybe that would make me miss you even more.  My biggest fear is that I will forget you.  That I will forget the memories, the funny jokes, and the sound of your voice.  As much as I love listening to videos of you, at the same time, it hurts like pins and needles.  I may never understand this life but I know that I miss you to the moon and back.

You are turning 9 but you aren't here

Maybe, every Angel parent feels this way but I cannot fathom Weston being 9 years old.  In my eyes, he will be forever, my tiny, adorable, 7 year old.  He will be the tiny boy that I carried on my hip for so long.  The one that I would scoop up to smooch all over his precious face.  9 year olds are big, they are half way to adult.  Weston had a lot of adult in him but he always loved for his dad or me to pick him up and carry him.  One time, a doctor asked why I was carrying him ( he was 6, at the time).  I was very honest and said "Because, one day, I know, I won't be able to".  I cherish everyday with our kids.  I never want them to feel like they are leftovers.  They are amazing and keep Weston alive everyday.  It really hit me the other day, at Open House for our homeschool community, a childhood friend is teaching what would be Weston's class.  I have a child in all of the other grades except hers.  I walked quickly past her classroom trying to not cry.  On the way home, I talked to God a lot.  What did we do wrong?  I heard a sermon a few weeks ago on the trials of life.  God gives them to you so you can overcome and love him more and be a testimony to others.  Well, friends, I do not feel that way.  Not today.  Some days, I feel right in line with that.  I know that we have helped so many families and parents after Weston died.  I feel wrong to say that I still don't hold a grudge against God but, at the same time, I am so at peace that Weston is in Heaven being taken care of by my grandma and dad.  Other days, I am selfish.  I want our baby back.  I want to walk him into his class and say hello, I am Weston's mom and he is very special.  I want to see lab results on how well he is doing.  I want to cheer him on for 6 minute walks.

What does his life mean for all of us?  Well, Weston loved giving things.  He loved giving out treats.  I would buy candy so he could give it out to parents, kids, nurses, and doctors.  His life was all about giving!  So, tomorrow, Adam and I want you to pay it forward, in honor of Weston's Birthday.

The best thing we ever did was leave our kids so we could take a vacation

Adam and I have been married 10 and a half years.  We have never vacationed without our kids, except for our honeymoon.  Over the past years, we have struggled.  We have lived apart (because of Weston's health), we have grown apart, we have lived separate lives.  A year ago, we decided to change that.  We were going to make time for "us".  Us as a couple.  After Weston died, we fell into the "we will make everything ok for our kids" routine.  We did a great job of that but we didn't take care of each other.  We tried to learn to live together again-to coexist in a way.  We co-parented but it wasn't that same spark.  I was worried we were destined the same fate that so many other heart, transplant, and angel families have-DIVORCE.  We fight, don't get me wrong.  We can even make other people cry while we fight.  But, at the end of the day, there is no one that I would rather have this crazy life with than Adam.  So, a year ago, we decided to take a vacation without the kids (gasp).  No kids, no babies, no diapers-just us.  Geez, how scary is that.  We decided to go on a cruise to Alaska (Adam was afraid I would try to come back to the kids if I got homesick).  We prepped everything perfectly.  The little kids stayed with Paulette, Cheeto stayed with Pam, and the big kids went to camp and spent the weekends at Ginger and Greg's.  Adam and I flew away to begin a vacation.  It was life changing, to say the least.  We were friends.  We had things to talk about.  We enjoyed being together and shared a lot of fun activities.  We laughed together at getting into wetsuits.  We learned to communicate by kayaking together.  I learned that if I ever cruise with Adam again, I need a balcony because the man loves to sit outside (rain, shine, hot, or cold).  I learned that we both love something about living somewhere remote---well, kind of remote.  I need wifi.  Let's be real.  We both loved Vancouver.  The friendliness was overwhelming.  The transportation was impeccable.  Adam and I walked the streets holding hands.  We discovered new places.  We browsed the markets and enjoyed finding treasures for the kids.  We talked about Weston some too-not in sadness, but, he made it known that he was with us along the way.  On the last night, we were voted cutest couple.  We had met a singer at the restaurant and told him a little of our story (just that we had 8 kids and never vacationed without them-we left out Weston dying and our crazy dog).  As Adam and I danced and the whole bar clapped and cheered, I knew that THIS was the man I married.  This was my sweetheart and we made it.  We made it through all of the crap, we made it through unbelievable strife, and we survived-together.

I have so many friends that have never left their kids.  I want to encourage you all to find somewhere for them to go and spend a night, a weekend, a week, or even 2 weeks to reconnect with your husband.  It was absolutely amazing for us! I think it is easy to get our lives wrapped completely around our children but, soon, they will be grown and we will only have each other to live with.  Healthy marriages are so important.

And there we were, 2 years ago

I will never forget today, 2 years ago.  Weston was sick.  He had a weird cough.  We brought him back to CHOP and he was too sick to cath.  He had a cath, on this day, after a night in a pod.  As many of you can imagine, I should send apology letters to the babies in the pod with him.  He told us he was going to take care of them for the night.  Right before his cath, Dr. P (standing in, bravely,  for our main man, Dr. Hanna) called us over to the nurses station to tell us that Weston may not live through the procedure.  That really set the tone for the rest of the day.  I was hysterically crying constantly and walking around with a box of tissues.  Adam was a rockstar and was consoling me.  Weston told us that he wanted to be awake during the cath and we agreed to let him be awake unless he was in pain.  Hours passed.  Thai food arrived.  Right as Weston came back, Adam ran down to get the food.  Dr. Dori (God bless this man's heart) came and told me he would never cath Weston again because he was too sick.  We were heading to the conference room.  Meredith was taking Easton to the playroom.  Everyone looked like they had been crying.  BAD BAD BAD, I knew it was just bad.  Our conference room was filled with folks.  Dr. Peridon was honest and told us Weston was going to die without a transplant soon.  Heather tried to toss some words in.  I was busy hyperventilating and gagging.  I thought I was going to projectile vomit on this poor doctor.  Adam rubbed my back, Meredith kept saying my name, it was an out of body experience.  My mouth watered and I just kept choking.  Dr. Rossano was a rock star.  He asked what we wanted to do.  We decided we would continue with the transplant list but, we wanted to get Weston out of the hospital.  He talked about DNR's and all of the things encompassing that.  But, Weston wasn't going to have that, he was going to power through it and rock his transplant.  That kid gives me hope and strength everyday!

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!