Tuesday, March 7, 2017

Just a glimpse

Sad probably isn't the word.  I don't even know the word.  Night comes and I start to panic.  Yes, normally, you would think I am just a typical crazy person so meds will help.  So, I have tried those and no, they aren't it.  You cannot help the sadness, over losing your child, with meds.  It somehow leaves you in a crazy place where you are picking up the pieces.   After Kinley, though, I needed something to keep myself together.  It wasn't her, it was the compilation of losing and gaining in the same season of life.   I miss Weston, insanely, because a part of our family is missing everyday.  The other night, Adam said " You fell asleep crying and haven't done that in awhile".  I had no idea that I was even crying myself to sleep.  That was my go to mechanism to cope after W died.  Adam would fall asleep and then I would sob myself to sleep.  That was a good system until Adam caught onto it and we had a lot of serious talks about sharing our feelings, no matter how small.   I am not a good share-er in the one on one.

I am so angry.  I don't even know who or what I am angry at but the top picks of the moment are CHD, PH, and anything related those.  I am angry that my friend's kids are sick-not just "oh you have a cold" but "Oh, your kid might die".  I am angry that the world is more focused on crazy crap than helping the people that I love.  How do we have the best technology but still cannot cure any heart defects.  Some, like Weston's, aren't even detected until after they are born!  

Then, we have Sutton.  Sutton was so little and he stayed with the girls and vacationed while W was in the hospital for some of the time.  If there is anything that I could do, I would bring him back and keep him.  He is 7 and absolutely terrified of dying this year.  He is so wild and carefree that it is shocking that he thinks about that.  He asked me if he was going to die, the other day, and I almost threw up.  He is totally healthy and death isn't something a 7 year old needs to think about but he does because CHD and PH murdered his brother.

I hope to be as brave as Weston, one day.  Not today.  Today, I want to cry.    I don't want him to grow up in Heaven because I want to be able to carry him .  I want him to be taking care of his friends and the friends that he never met but they were joined by heart defects.  BUT, most of all, I want everyone in Heaven to tell him that we love him and did the best that we could to make him better.  Everyone did anything and everything we could have ever asked and we love them so much for it.  I don't know if I will ever stop feeling the agony that we did something wrong or chose something wrong but-I know he is in Heaven, pain free, loving on everyone that this crazy earth sends his way.

So, to celebrate his Angel-versary, we will be feeding the firemen that Weston loved SO much!  Please join us!  I am send out the magnets this week.  This is our way of saying thank you to the brave people that not only made Weston's life special but are the quiet heroes everyday!


Saturday, December 31, 2016

Please, Be Kind 2017

2016 has been hard.  Recent days have brought together a lot of harsh realities for me.  While the rest of the world was concerned with these famous people dying, my friend's kids were struggling-snuggling to breathe, struggling to have their heart function properly, struggling to live.  My sweet Angel Mom friend, Kelley, and I run the Philly Heart Angel FB group.  As I sent a recent message to a brand new Angel mom, the reality hit me-this sucks-and not in a this will ever get better way but this is the reality of ever mom or day that has ever lost a child.  You never get over the "Welcome to the worst group to ever be in in the whole wide world" kick in the face.  The Angel group though, they are the glue to my soul.  They are people that know my pain in the same way.  That means so much in this crazy world.  

It is easy to forget how fragile human life is.  For my friends suffering from congenital heart defects, pulmonary hypertension, lymes disease, MS, RA or any of the other bazillion health issues that take away the normalcy of life, I have thought of you all many times this year.  I have tried to become more educated on your diseases and to be more sympathetic of your symptoms.  I promise to be better about checking on you and your kids in 2017.  I will be annoying.  I will bring you food and text you random funny stuff and yes, that is how I show my love.  

Today, I facebooked a quote from Neil Gaiman.  "I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You're doing things you've never done before, and more importantly, you're doing something."

We are doing something.  We are being proactive and have had a crazy year of messes, new friendships, and yes, we even realized that we were stronger in ways that we never knew.  

The holidays have kicked me in the stomach more times than I can count.  I have wanted to lay in bed and cry over missing Weston, over thinking about what we would be buying him for Christmas, over the thought of him being a big kid, and over Kinley pointing at his picture and saying "hey Wes".  She knows him.  She has a lot of him in her heart.  Forgetting him is one of my biggest fears. 

As most of you know, we will be gearing up for "Feed the Fire 2017" here shortly.  We celebrate Weston's Angel-versary, every year, by feeding firemen from around the world.  Sweet friends all "adopt" a fire department and take them snacks or meals.  Last year, we fed over 200 fire departments.   You can sign up on Facebook at https://www.facebook.com/events/112880475881118/ or online at http://www.signupgenius.com/go/10c0e4ea8a82eaa8-2017

So, tonight friends, I am so thankful for all of you for holding me together this year.  I am thankful for our friendship and laughter.  From my sweet husband who is WAY more patient than me to our wild kids to the heart moms to my Angel moms to my Philly friends to my scout families to my homeschool moms to my everyday people-I love you and wish you the best in 2017!  In the words of Weston's best friend Megan, "Let's Rock This".  

Tuesday, September 6, 2016

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

Saturday, July 2, 2016

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.

Saturday, April 30, 2016

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.

Wednesday, April 20, 2016

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.

Friday, February 26, 2016

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!!!!!