Monday, December 21, 2015

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.

Saturday, December 12, 2015

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

Friday, December 4, 2015

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.

Wednesday, November 18, 2015

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.  


Friday, October 30, 2015

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.

Thursday, September 17, 2015

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.

Wednesday, September 2, 2015

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.

Friday, July 31, 2015

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.

Friday, July 3, 2015

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!

Saturday, May 30, 2015

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!!!

Saturday, May 9, 2015

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!  

Tuesday, April 21, 2015

And, I have never missed you more

We went back to Philadelphia this week with a handful of tasks-see our old friends, celebrate Weston's donor and recipients at the Donor Dash, and to meet with Dr. Hanna for our autopsy conference.  Doesn't that just take your breath away?  Weston always wanted to help people.  He would always say that he hoped that if he died, his body would be used to help others.  Amazing.  Walking inside was almost too much to take.  It was exactly like before except my baby wasn't there.  His rooms were occupied by different kids and we were visitors.  My first visitor badge ever-not the bracelet I was used to having.  I am so glad my friend Patrice was there to help us because I was a mess.  We walked through visiting. We started the day by coming to visit the floor.  I  met the new PH doctor, Doctor Hopper.  I wanted to hug her and tell her that I had heard so many wonderful things but I thought that might be weird.  We saw Stephen and he looked just the same-very dapper and ready to embrace the kids.  Stephen is a good guy to see first.  His laid back nature just sets you at ease.  Easton was so excited that Stephen knew that he was getting ready to be a Boy Scout.   Every step, I was reliving over and over.  We walked the halls that I bribed Weston to do PT through.  The halls Weston plays hide and seek.  The bazillion times I went and got him ice and water from the nourishment room.    We looked out the same windows that Weston would look outside to the people walking.  I remember Meredith and I telling him when he was going to get out of the hospital and he was going to be outside with those people.   I had to resist wanting to go to his old rooms just to make sure he wasn't hiding.  I am sure that is so not normal but our little kids felt it too.  Ellie and Avery both asked if we were there to pick Weston up.  We kept telling them over and over that Weston wasn't living there but, I secretly know he is.  He is floating around, playing pranks, giving kids belly laughs, and watching fireworks from Dr. Spray's office.   I was so glad to see so many people that had been through the thick and thin with us but, of course, we missed so many.  New nurses had no idea why our big family was hugging the fellows-the same fellows that I had told them on their first day to please not kill Weston.  Nothing gives you a HELLO to fellowship like a crazy, hormonal mom (with a newborn) being over protective.  It was so great to see them.  Like a proud mom, I could see how they have grown and changed.  They are an outstanding bunch!  We went to eat at Mad Mex.  On the way there, we took the back way and it passes by where the morgue sends their kids out.  I thought my heart was going to stop.  That was Weston's final goodbye to CHOP.   Mad Mex was our local spot but somehow it felt so different.  Then, it was time to meet with the man of the hour-Dr. Hanna.  The kids were so pumped to see him.  The kids have always loved on him but Ellie, well, she has a special place for him.  The big girls always want to call him on the phone, Avery wants to tell him what to do, but Ellie, well, she is just his girl.  She asked all day about when we would see him.  Easton was upset that he couldn't come to our conference.  He is such a star- a rock star among brothers.  Sutton runs behind just soaking it up and becoming the best little brother ever.  Patrice took them to the car while Kinley stayed and visited.  Dr. Hanna gave us some answers-Weston's death was very quick, specific to his lungs, painless, and, we both agreed that it was every single bit of drama and trauma that Weston would have wanted.  He was always a kid with flare and he wasn't going to let us all be weeping around him when he died-he was going to die with the fireworks that he came into the world with-it was going to be his way.  Dr. Hanna went on about how Easton is destined to do big things.  That gave us peace of mind because deciding to bring your 5 year old to live in the hospital with you is not exactly an easy decision.  He also said something really astounding-he said he felt like Weston's siblings were his lifeline.  They forced him to keep on and kept him grounded.  That made me so happy.  We have always questioned whether giving Weston so many siblings was the right thing but, it was.  They loved, hugged, kissed, fought with, kicked, pinched, bit, beat up, and, in the end, mourned him.  While it was definitely a hard visit, coming back was just like coming home to family.  It was great to hug everyone and let everyone, even June, the therapy dog, know how much they meant to Weston and our family.  And, for that, I am so grateful.


Friday, April 10, 2015

One Year Plus: Now What?

One Year Plus: Now What?

It has been over a year now, and here I sit missing my boy. Over the last year I have been angry, mad, lonely, lost, happy, sad and about every other feeling you can be. My marriage has been the best and the worst, we have fought and cried. To put it simple the last year has been hard.
We where finally able to all live under the same roof for the first time. It is a weird thing to have to get to know your wife a second time. Thankfully we were able to find an Awana’s for the kids to go to, this was such a blessing for Julie and I. The kids got to do their thing and we got two of the most important hours to work on our marriage. I am so happy that we have had this time to reconnect.
The kids have also had their up and downs. They missed us and we missed them. It is so good for my heart to be able to hold my kids again, to be able to see them everyday is so good for me. It is such a wonderful thing to see the kids all together and playing. The kids have shown me so much, the way they remember Weston and tell stories of the fun times they had together.
So after over a year what have I learned, I have learned it is not easy moving on. Life sucks sometimes, yeah it sucks, that is just how life is. I have learned that marriage is hard, and marriage after the death of a child is even harder. Weston taught me many things and maybe the most important was to enjoy life now. 
I would challenge you to enjoy life now and never stop working on your life. Love your family, love your kids, and love you spouse (or whatever). Love will get you though a lot but work will also be required. 

Thanks to all who have help me and my family.






AK

Saturday, April 4, 2015

Emptiness





Emptiness 

An empty spot at the table.
A count that is just not quite right.
My world is not that stable.
One missing every night.

What, I would give!
What I would take!
Where did you go?
Now all I feel is alone?

The darkness must not win.
If only just for their sake.
I can not believe you are gone.
The Doctors must have it wrong!

This pain is so real!
The weight is to great!
Why would your light need to go?
To soon for my taste, to little time indeed.

Can you still see my need?
My world has fallen apart!
My family is incomplete!
How do I hold this together?

What can I do?
What new love can there be?
Can you send a clue?
I am down upon my knee!…..

Just waiting…waiting….waiting!!!!



AK

Monday, March 23, 2015

A Simple Thank You

This is for everyone who has every help our family. On this, his one year, we just want to say Thanks!




A Simple Thank You

How does one person thank so many? I have no idea.

How does one person so dear to me touch so many people, in so many ways? I have no idea. 

How does a group of people give hope to so many little children everyday? I have no idea. 

How does a person give back to such people? I have no idea. 

How will I ever get over the loss of one so dear? I have no idea. 

How does this one thing bring such renewed hope in me? I have no idea. 

How does one person thank so many for so much? I have an idea! 

Thank You.



A.K. inspired by W.K.

Saturday, March 21, 2015

Desperation

As the days passed and things continued to get worse, Weston had so many tests run-MRI (thank you Dr. Licht who so kindly came in on his day off to show us all of the slides of Weston's amazing brain), CT Scans, bedside broncos, more sedation,  more episodes, more CPR,  more blood work, a line placed in his foot,  and a spinal tap.  In sheer desperation, we reached out to everyone we knew-every single person that came near Weston got inundated with a million questions about what they thought could be wrong with him.  I realize now, I was hysterical.  Adam and I were desperate parents looking for an answer.  Everyone wants an answer for what is wrong with their baby and an easy fix.  Unfortunately, the answers weren't coming easy.  The tests all looked ok.  Of course, Weston was blazing his own trail.  Sundays will never be the same.  Although, his Angel-versary is on Monday, Sunday will always be the day when my heart hurts the most.

Adam and I are so thankful for the outpouring of support for "Feed the Fire".  I don't have a total number yet but I am pretty sure we will break 100!  That is amazing.  Thank you all for feeding your local heroes who took the time to make such a difference in Weston's life and make him feel so special!

Sunday, March 15, 2015

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.

Friday, March 13, 2015

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!!!

Wednesday, March 4, 2015

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!  

Monday, February 23, 2015

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"

Friday, January 23, 2015

The Land of Tears


“It is such a mysterious place, the land of tears.” 
― Antoine de Saint-ExupéryThe 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.