All of the times that I spent loving you

I didn't realize all of the way to show love until there was you.  I gave my all for Adam and Easton but, you needed a different kind of love.  A love that I had to dig deep in my soul to find.  I had to be an advocate, a cheerleader, a caregiver, a nurse, a personal assistant, and a decision maker.  None of those are my strong suits.  Before you, I was afraid.  Afraid of the things I never know.  I didn't even know I was afraid of them.  I remember the day, in your PICU room, the sweet echo guy.  He was so young and he looked terrified.  I was hanging onto his every single expression and when he sent out whatever 911 call, he sent that called every doctor in the hospital in, that is a feeling I will never forget.  I was begging him and hysterically crying for him to tell me what was wrong.  How could anything be wrong?  I had a ton of ultrasounds?  I ate the right stuff.  He told me a doctor was coming to talk to me.  Adam came back (he had run home to get clothes) and together, we watched a small Indian woman, draw us a photo of Weston's heart.   Fast forward, 9 years.  You would be 9.  Adam and I are sitting in the office of your cardiologist, the woman that saved your life.  I didn't want to go there.  I cried the whole morning, I was mean, I was hateful, and I just wanted to run away.  No one wants to hear bad news and I was certain, we would have some awful surprises.  We had everyone that ever walked into Weston's room check out whichever kid that happened to be there, but I was still so afraid.  Walking in, I wanted to throw up.  I spent a lot of time checking kids in and then we got to the echoes.  We met Eddie (wonderful) who eased my mind immediately by talking to Easton like a friend.  Maybe he could feel my mommy eyes glaring at the screen or that if he had seen something bad that I was going to vomit in his lap.  Yes, I hovered.  As the kids got passed back and forth (Adam and I traded out in the hall), I got to catch up with Amber, her lovely nurse.  Amber was a Godsend.  Everyday, for so long, I would call her and leave a message that Weston had a crisis and we would be in at 8am.  She was a blessing and a welcomed smile.  Dr. Anand came in during every echo to reassure me.  Thank you, Jesus, the kids all have healthy hearts.

I want to encourage my mama friends to get your kids checked.  I know it is scary.  I am so grateful to Adam that he forced me to face my biggest fear!

The things I remember

For so many years, since Easton was born, our holidays were meant to be perfection.  Ornaments, crafts, special outfits, the whole 100 percent.  The first year Weston was in the hospital, I seriously exhausted myself making the kids and him do an ornament per day.  The next year,  we were so lucky to be in Philly and he was at GOL with us.  What an amazing day.  We stayed in PJ's all day-all against the GOL House rules.  On December 1, 2013, I got the ABC Christmas movie calendar.  Weston was super sick.  It was my job to make this the best ever.  (Imagine having a giant rock on your shoulders).  We brought in decorations, and then, his tree got tossed over in a rush to replug in his oxygen.  Our poor nurse (he had no kids but was amazing), immediately swept up the glass as tears rolled from my eyes.  This was going to be the best Christmas ever, damn it!  That is right, come hell or high water, we were all going to have memories.  Then, came the call.  Weston went to surgery, the kids all got to see him after and see that he was doing well.  The littles were swept off by my amazing friend, Laura.  Come Christmas, Weston was reintubated.  He had no interest in Christmas and all of the kids presents were piled in the bathtub in his room.  Our sweet friends, the Terruso's took Easton and Santa surprised him with concert tickets.  Thank God for them and Laura.   It was that day, as Adam and I sat  wondering about all of the unknown, that I felt the spirit of Christmas.  I knew about God and was a firm believer but, what I had never had was the feeling of seeing strangers care for your child, give their time up with their own family to spend with someone more needy, move our elf "shelf" around and make sure that Weston's every need was met.  They were the people that small talked with me because I need to talk when I am nervous, they were the people who bounced Ellie as a baby when I was so sleep deprived, they were the people who kept me sane.  I loved their stories of restaurants and dating.   We shared funny stories and recipes.  That love, that love for others is really the "magic" of Christmas.  What they were able to give to me will never be able to explained.

While Weston will never celebrate another holiday with us, here on Earth.  I know his spirit is near.  Many Angel friends have gotten pregnant with their Rainbow babies, one of Weston's most beloved nurses finally got engaged to her long time bf, other loved nurses are traveling to amazing places and helping children, and so many people have sent us sentiments of love and how they feel Weston is close.  It is because of all of you that I feel a little better, a little closer, and a little more loving towards everyone this holiday season.  Adam and I hope you all have a most Blessed holiday.

Dear mama of our transplant Angel,

While today, two years ago was the day Adam and I had been waiting for, for Weston, we had also been praying for you for years.  Life shouldn't be like this.  No child should have to die.   It is just unnatural.   But, last night, two years ago, your daughter passed.  You decided then to make the amazingly brave decision to donate her organs to children you didn't know.  In the middle of your tragedy, you gave my baby a second chance at life.  Grateful doesn't describe it.  Adam and I spent years while Weston waited on the transplant list hoping for God to give you peace or for God to intervene and Weston not need a transplant.  Two years ago, millions of people started praying for you because you are the mother of Weston's Angel donor.  I hope those people still keep you on their minds because I think about you everyday.  Although Weston's transplanted life was very short, you gave us the gift of knowing that we had done all we could do.  You, unknowingly, helped us move the earth, moon, and stars to keep him on this earth.  So, today, wherever you are, I hope you feel surrounded by all of the prayers and thoughts and love that I ask all of Weston's followers for, for you.  In honor of your daughter, Adam and I challenged people to sign up to be organ donors.  So far, over 3,000 have done so.  I hope that you know that your gift was not in vain and that we treasured the months after transplant.  You allowed our son to celebrate another Christmas, take another bubble bath, ride is tricycle around the CICU, and most importantly, spend time with his brother and best friend.  You gave us the gifts that no one else could.  Please know that we will never forget you or your daughter.  We will think of you daily and your admirable decision.  I hope others are as brave as you and sign the organ donor card or do it online at http://1.usa.gov/19QysQ8

Merry Christmas, from all of you

Today, the kids and I got the Christmas decorations out of storage.  You all will never know how much those mean to me.  When Weston asked for ornaments, I was like "what?".  He received thousands of ornaments.  Today, as I unpacked the paper boxes that Stephen so lovingly brought us, it took my mind back.  Back to that happy time.  Back to when Weston was a fighter and I was a total believer in the process.  He were all still wanting him to get that transplant and he would rock that.  So, I think now, did he really rock it?  Is transplant what we SHOULD have chosen?  I have mixed feelings but, I know that 1000% we did everything under the sun to keep him going.  I know we cheered him.  I know we loved him.  I know that the kids kept him lively. I know that we did everything we could to get him to gain weight.  So, where do you come in?   Many nights I laid awake on his couch, looking up at his ornaments.  I remember them so vividly.  Every ornament let me know that someone, somewhere was thinking of him.  In such a weird way, I think that is why he asked for ornaments.  He knew Adam and I needed that support.  So, please know that this Christmas is just the same.  We will hang Weston's ornaments and know that so many people love him and our family.  We will have a tree of love from all over the world.

Thanksgiving was awful for me.  Giving thanks felt like ripping my heart out of my chest.  It took my breath.  This year, somehow seemed worse.  Not the circumstances, I was surrounded by friends, but it just took me back to our last Thanksgiving.  Adam ripped off the door to my oven.  It could have been hilarious but I cried.  Thanksgiving needed to be perfect.  All hospital holidays need to be perfect.  His nurse called and we were juggling everything to come.  I felt like such a failure.  But, in true Keeton form, we rocked it.  Weston and the kids ate and ate, we fed the staff, and everyone took a nice nap.  Best moments.  

For the next few days, we are challenging you to give 5, give 5 dollars to http://www.karisheartfoundation.info  They were amazing during Weston's stay and just amazing.  Please put it in your heart to give 5 for Weston.

dealing with grief

The last few weeks have really had me thinking about people say careless things to people dealing with grief.  Unfortunately, unknowingly, I know I did it to people that I love and care about.  Before Weston died, I thought our life would be different.  We believed in miracles.  We cherished everyday. We worked ourselves to death to care for him and the kids and try to maintain a relationship.  It was not to be.  When Weston died, I knew it was my fault.  The weight of the entire world was on me.  Adam can never know how I felt in that instance of telling the doctors to just get off of him and me ripping lines out.  I think it was pure panic and torture.  I felt like I was screaming-or maybe just whispering.  My ears were burning.  I was doing a marathon in place.  My heart was bursting before my eyes.  As time went on, I read many of my prior posts about Miracles.  I even posted that the people that Weston touched were the Miracles.  That is exactly true.  To this day, I get messages from strangers about how we touched their lives.  For the Angel families that I hurt, please know that it was not intentional.  Our babies were all miracles.  Our babies all defied the odds and rocked this world in a way that we may never even know.  No, I will never have another baby to replace Weston and I constantly wonder if God took Weston because he knew that his personality and our family was too wild for a post transplant lifestyle.  Or maybe, God just said, Matthew 

28 "Come to me, all you who are weary and burdened, and I will give you rest. 

29Take my yoke upon you and learn from me, for I am gentle and humble in heart.  

I was weary in his last months.  I knew he was going to die.  I 

go back so many times to the last morning.  He had not been himself for so long,  Adam brought me a chair for rounds because I was so woozy from not sleeping and being pregnant.  I had talked to Dexter days earlier and we exchanged a few words about how I was going across the street and it was the first time I had left in a long time.  I talked to my best friend Laura.  I don't know about what.  She had our other kids.  I just remember her telling me to tell him that I love him.  So when we got the call, after we had left for brunch, my heart exploded.  Adam was in charge of all calls.  We were running but in slow motion.  In that moment, everything I believed was stolen.  Adam and I told Weston to go to Heaven and that he was so brave.  Then, there was a stolen silence.  Nurses and doctors  trying to calm us or clean him or lay more blankets down to step on.  And then, somehow we were laughing and telling jokes.  Those are the signs of love.  Mike T.  took Easton to play video games.  Nurses and doctors came from all over to tell us how they loved W and us.  

That is a day I will remember forever.  But, my favorite days, the days that mean so much to me were the days at CHOP and home where Weston lived.   Many years ago, he came home a few days ago on the 17 month anniversary at CHOP.  We celebrated every month!  Why?  Because he didn't die!

This kid-his hatred was July, my birth month.  From July 1-July 31, his heart and lungs would try to die.  He would pull through every year and he a rock star.  Every July, Adam and I would go into meetings that were filled with panic (from all parties) and love.  Tissues were passed around because we all knew what these meetings meant.  

As I look at the kids talking about their fun experiences with Weston, Ellie talking about her life at CHOP (seriously, this kid is a total Dr. Hanna girl), their lives may really not be normal but they had the best life.  They had a special life.  

So, I miss this big kid-he would be 9 now.  That is so big.  Maybe he would not want to be carried in my arms anymore?  Maybe he would be a math whiz?  Maybe he would read for me instead of his fav hospital teacher?  But then, maybe we weren't cut out to be transplant parents?  Maybe we did something wrong?  Maybe his life meant more than we will ever know?  

But, without a doubt, I know that there is another world, much better than this and I feel safe in knowing that Weston is there and waiting on me.  He will forever be 7 and I will be able to carry him around forever.  

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.