The day I felt 1 millionth of your pain

I debated on sharing this because it is way too personal but I needed you all to know.  After K was born, I immediately went into shock.  It wasn't PPD, it wasn't grief, it was somewhere in the land of PTSD.  Something took over my body.   I took K's vitals constantly, barely slept and only then, with my hand on her chest because I was so used to counting Weston's breaths, that I could also count the rise and fall of her chest in my sleep.  I was convinced that she would die of something that was hidden.  Something that we somehow missed on the ultrasound or the fetal echoes.  In the first week of her coming home, Adam called my doctor and made me an appointment.  Things were not normal with me and so, they put me on an anti-depressant.  OK-this will make me better.  I felt more normal.  Some things didn't change like me counting her breaths, taking her temp, and having the unwavering feeling that one of my kids could just die at any minute.  I was functional, super functional but blurry.   Around Christmas, I was laying with the kids and felt "ants" crawling on me.  I immediately was convinced I was having a nervous breakdown or an anxiety attack.  I went back to my doctor and he upped my meds.  I didn't feel right. I started having odd neurological and muscular things happen.  At night, my legs would twitch.  So weird.  I started seeing a counselor in March.  When I first talked to her, I had several twitches.  She was alarmed and so was I.  My parent and extended family like to die of more common things like heart disease and cancer so something rare and neuro muscular was not likely in my genetic cards.  She asked how I would feel about weening down to see if I started feeling better-or started feeling anything different.  I went slow.  I was only 250 of Effexor.  It took weeks to go down and down and down.  I didn't have a lot of issues until the last ween.  I regret not telling Adam that I was weening (Hello, I didn't want him to think I was crazy or addicted to a pscyh med that was supposed to make me better).  However, after a few sleepless nights, I had to tell him.  I wasn't sure if I was afraid he would be disappointed or what.   I always scheduled my weens on Friday so I would have him here on the weekends in case I had side effects.  The last ween was the WORST.  I was fine during the day but at night, the twitching, the irritability, and the insomnia were so bad that I was convinced I was going to die.  I was sweating all of the time, buckets and buckets.  To do that all over, I would have read online about what helped others.  Finally, I got some relief with some benedryl and was finally able to sleep for a few hours one night.  

Those sleepless nights made me think so much of Weston and our heart kids weening off of these lifesaving drugs.  I was a sweaty, crazy mess so to think of how they feel is just unimaginable.  I remember holding Weston and rocking him as he twitched or sweated or had desats.  You never forget those moments as a mom.  

I have been off of Effexor for 3 weeks.  I have lost 10 pounds, don't have to take a nap EVERY single day,.  I have cried a bit more than when I was on it and I am certainly more in touch with my emotions.  I feel clear.  It is like a fog is gone and I can actually function without a daily nap.  Adam saw the best result when I laughed at a movie we were watching.  It wasn't that the meds caused me not to laugh but they made me seemingly indifferent to happy or sad emotions.  

Parents, I do not want to discourage you from getting mental health help. Getting on meds was the best thing I have ever done but, I want to encourage you to also see a counselor and be leery of side effects that seem bizarre to you.    I never took anything while Weston was in the hospital and I regret not taking care of my mental health then.  Parents too often say, oh I will later, but then it snowballs into something very serious.  If anyone ever feels like suicide is the answer, please call the hotline and talk to someone 1 (800) 273-8255. Sometimes, it does feel like you are alone but suicide is not the answer.

From the outside, looking in

The day that someone says that something is wrong with your child's heart is life changing,  Suddenly, you are sucked into a life of medicine, surgery, rehab, recovery, and heart wrenching decisions that no one ever wants to make.  The days of having a heart child are very "warrior like".  Every heart mom, dad, and family go above and beyond the typical "go team" challenge and we all go into fight to flight.  You celebrate the good times because they are clearly a miracle and beg God for help during the bad times.  I remember walking to CHOP praying with the kids, everyday, going over the South Street Bridge to CHOP.  I prayed out loud for each one of them but more so, in my head to just let us all get through the day alive.

Then, Weston died.  Suddenly, you aren't a heart mom exactly anymore but you are the freaking furthest thing away from a normal mom as ever.  You empathize with hospitalized families in such an intricate way but you have to keep your comments to a minimum because if you let a new heart mom know that your child died from their child's illness, you will feel like crap.  It is never easy to tell a new heart mom that your child fought but didn't make it.  Maybe they think they gave up or that we weren't good enough at cheering them on, but you are automatically the outsider.

If all of this isn't enough, the physical and emotional and spiritual tolls are life altering.  Everyday, my heart hurts like being stabbed.  It doesn't go away.  I never ever forget that I am missing one of our kids.  I see kids that would be his age and just cry because that seems so big.  Then, there comes the crying.  I cry all of the time.  Ok, so I get myself together for the day but sometimes, still, I wake in the night just sobbing.  How could God take him?  Adam and I went through so much.  We split our family apart for years fully expecting our faith in God to allow Weston to return home with us ALIVE.  My biggest fear was having a carseat but no child to fill it.  I thank God for a lot of things-the love from Philly and our local community, the great care that Weston had, but never, ever will I understand why he felt like Weston needed to go to Heaven.  It was his plan, I guess.  But that is where my rift is.  God and I will never be the same.  I believe and I stand back a bit.  Adam and I go to a parenting class that I love.  Phil is a great teacher and he makes us think.  He is also the only preacher than I have ever told that I want to run away from church.  Going into church now makes my heart pound so hard that I can't even hear for the start.  That is what being an Angel mom is.  We celebrate our Angels because they will always be in our heart.  I am forever Easton, Weston, Abby, Emery, Sutton, Avery, Ellie, and Kinley's mom.  Angel moms, celebrate your Angels.

That last month

Everyday is just like yesterday.  People may say that you get over it but, especially for that last month of Weston's life, I remember every moment.  I haven't cried in the car in a very long time.  One of my best Angel mom friends, Jennifer S. told me once that she stopped crying in the car around the first year.  I guess that was true for me.  Except, yesterday, I cried all day.  I cried at the store.  I cried in the car.  I cried just thinking about Easton becoming a big kids and going into a middle school high school community year after next.

Our trip to Philly this past weekend was AMAZING!  I know Weston lives in Philly.  I just like to follow his footsteps.  We would go to the park for him to play.  The Terruso's, Millie, and Patrice are so dear.  His favorite doctors and nurses all weekend.  And my Philly Heart Moms being absolutely amazing at the CHF Ball.  I adore the CHF family.  Such wonderful folks putting on the spectacular event!   It was just the happiness that dreams are made of and I could feel Weston all weekend long. I kept walking through Rittenhouse (I kept losing things that I needed) and so much reminded me of our walks. Our final dinner was a surprise (we didn't know we would stay the extra day in Philly) but one of our fav PA's met me at the Jefferson Institute to help me with the kids.  Adam was busy doing school work (more of this later).  Karen and I rocked it!  Few people will volunteer to go with you to a museum you plus 8 kids-1 borrowed.

We proceeded onto dinner.  Dr. Hanna and Stephen were already there.  It was just incredible.  Kinley was afraid of him last time but this time, she was intrigued.  Ellie talked nonstop, Easton picked his brain, and Sutton fell in love with Stephen.  Seeing Sutton love on S was just like the Weston love. We ate so much overly delicious food and spent so much time catching up.  There were a couple of empty chairs but as I saw Dr. Hanna holding Kinley, I knew W was there.  If you know her, she is a screamer.  She does not like anyone new.  She went to him and studied his face.  He fed her plates of yummy food.  Ellie talked his ears off.  She was nonstop.  If you don't know, Dr. Hanna is her favorite person ever.  We have a hard time telling her we are going to the pediatrician because she requests a Dr. Hanna consult.  We missed Heather and Rachel.  Two of my fav gals.

I want to thank you Philly, for loving Weston and for loving us!  We always look forward to next time.

Thank you all!!!!!

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.