Happy 10th Birthday, Baby Boy!!!!!

I remember when they told us about your heart, Adam and I just wanted to make it till surgery, then tie the next, and the next, then tie 5.  5 seemed OLD.  5 IS OLD IN HEART WARRIOR YEARS.  I dreaded the day that marked Weston's 10th bday.  I get overcome with emotion  and I cannot find the balance between taking care of the kids and wondering what Weston would be like today.  I wish I could explain all of the love and concerns heart moms, dads, and siblings carry 24/7.  It is like the club you are unfortunately apart of but love the company you have

I cry a lot.  I miss a lot.  I am jealous a lot.  I want our baby but, I have to believe that his life is better in Heaven.  I have to believe that above all, he was sent to earth for us to all learn to love each other, show kindness, and perform good works.

This child taught the world to love a little harder, be a little stronger, and to eat Hot Cheetos like they are going out of style.  And so I miss you, with all my heart.  It is a pain that I hope others never feel because a part of my heart is just gone.  But, I love you, and I hope you had the best birthday ever, in Heaven-with all of the ice water and hot cheetos that could ever be included.

We are challenging people to make a 10 dollar donation, in honor of his 10th bday, to the CHOP Radiothon.  http://us3.campaign-archive1.com/?u=47bbb84caeeffd33e1f67f493&id=57e2299ccd&e=bddc7e2a67

July, well, it is just hard

Early on, in Weston's life, we had this rhyme that was so crazy but "every July Weston would try to die".  For my long time readers, you get it.  The fear of July was constant.  It always began July 1.  It would come in like a lion.  It was always about the 4th of July that we got the "chat".  The first year that we had the "he will die soon" chat, I almost passed out.  The second year, I was hysterical.  The third year, I almost threw up on the doctor standing in.  Those memories don't fade.  You don't have end of life talks about your baby and then those moments leave your mind.

Weston had so many ups and downs in his life.  I just thought, without a doubt, that he would make it.  For 3, 4th of July's, we celebrated at CHOP and the one before that, we were at DUKE.   It seemed completely normal.  We would party it up watching fireworks at a special spot.  We would eat Rita's water ice and hot Cheetos.  Every year, I would say "Next year, you will be out of the hospital".  I can't decide whether I was lying or not.  Maybe I couldn't believe it myself.  When you are in that moment, denial is the first feeling or maybe that is hope.  I never really could decide.  I always felt like I was bordering both.

Yesterday, our friend Caelen and his mom Katye were flown to CHOP from Miami.  She is so incredibly kind and wanted to know if it gave me bad memories.   I told her no.  My memories with Weston are never bad.  Even the day that we let him go off to Heaven surrounded by the people who loved him.  My favorite stories always seem to have him-either alive or hanging around.  Kinley recently started pointing to him and calling him "Wes".  She is a kindred spirit and a total old soul.  She is going to give us a run for our money.

A few weeks ago, I had the hardest question from the kids.  Easton asked "will my child have PH or a CHD?"  How do you even answer?  Technically, Weston's defect wasn't genetic but there is nowhere near enough funding for CHD efforts so the numbers are about 1 in 100.  I tried to explain this with counting bears and with a bunch of other things.  All that anyone focused on was that Weston had it and he DIED (as was screamed several times by them).

Then, when I thought all was calm, we take Sutton to the ENT to find out he needs surgery to remove his tonsils and adenoids.  I try to be calm at doctor appointments but as soon as he mentioned surgery,  Sutton starts talking about how he can't have surgery at 7 because Weston was 7 when he died.  But the end of us talking, I was crying, Sutton was crying, the doctor was likely crying, and I am pretty sure I may have cussed PH and CHD's a whole lot.

But, it isn't fair.  I have friends who lose their kids everyday.  People always ask how I know them.  Our Philly Heart Mom family is huge.  Our Philly Angel and PH Angel mom groups are great.  We have an outlet.  I am so grateful for them and for all of my CHF and PH family. If I ever have a question, I always have a lot of responses.  You all are amazing.

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.