King Peter- In Memoriam

 Today marks the 1 year anniversary of Peters death.  I've struggled this week. It seems the closer to October 1st it got, the more emotional I was. Every little thing set me off. TV shows, songs, commercials. Anything. This morning it was hard to get out of bed. I just wanted to stay with the sheets over my head and eat a gallon of ice cream and cry.

Hard to believe this sweet boy has been gone for a year.  

1 year ago I woke up to what was  the worst day of my life, and one of my absolute worst nightmares. I guess he had done so well for so long, I thought it would just continue on forever like that.  We knew we heeded another heart, but never in my wildest dreams did I think we would wake up to find him gone. I thought I had more time. We always think we have more time.

I miss his quirky half smile, his odd sense of humor, his random Dr Who or Flash quotes. This kid could watch a movie once and recite lines back to you.  He was obsessed with Avengers and Marvel and DC and Dr Who. He loved to listen to music. He seemed to get along better with adults than he did with kids his own age.  He was always an old soul, even when he was little. He loved talking to people and joking around . He loved his brother (he wouldnt admit it out loud to us,  but he would tell other people).

 He loved food more than anything.  This kid had champagne tastes from day 1.  I could put anything in front of him and he would eat it and then say "mmm, you can make that again".  One time we were out to eat, he was probably 7 or 8. We were at a steak restaurant and the waiter told us the specials, one of which was a cedar plank grilled salmon fillet with blah blah blah. Finn got Mac and Cheese and Charles and I both got steak and when we got to Peter, instead of ordering off the kids menu like he had been instructed he casually said "uhhh, I will have the salmon please".  (for 24.95!!!!).  I said NO YOU WONT!!  He would not be moved.  So guess who had salmon that night? He was always one to add onions to everything. He loved banana peppers and jalapenos, and salsa and spicy food. He could eat sushi like there was no tomorrow. This kid packed it away and when he would get full he would burp and say "oh I just reset my stomach" and continue to eat more.  He had a hollow leg that he put everything away in because there was not an ounce of fat on that body anywhere. He could tear up a cheesesteak from Penn Station!  And dont put ice in his drink, he hated it.  He never drank pop, only lemonade and fruit punch and water (no ice!).

I spent 19 years taking care of him, keeping him alive, dr appointments, surgeries, medications, disability hearings and claims and all the other stuff.  When he died that was all taken away and I had almost an identity crisis.  I had been a caretaker for so long that it was foreign to me that it was no longer an option. 

It has been weird not having him around to constantly argue with Finn.

I was going through a scrapbook my friend made, and there were all these notecards that people had written their memories of Peter on, and to see just how loved he was really touched my heart. His kindness, his wise beyond years attitude and actions.  He truly touched everyone around him that he ever met. There was something excessively special about Peter and I am just so grateful that I got to be his mom and be part of his lasting legacy.

I miss him more than words can say, it is a gaping hole left by his departure.  

I am sure that as I write a memoriam next October 1 that it will perhaps have gotten a little easier. I doubt it, but one can hope, right?

I miss you Peter more than I can ever say. I love you beyond compare and know that one day we shall meet again. ♥

KING PETER

I havent written in almost 2 years. 
I have been so busy, and 2019 my life was flipped upside down.

Our oldest son, Peter McBride (KING PETER) passed away.  He was 19 years old.
As many know Peter was blessed with a 2nd chance of life in 2005 with a heart transplant.  The first 5 years of his life were basically spent in a hospital, or sick and not feeling well, tired, blue, and lots of other trial and tribulations.  After that transplant he was a new kid. We had 14  more AMAZING years that we thought we would never get with him. He had a few minor bumps in the road, but all in all he had a whole new lease in life!

In June of 2019 we noticed his feet started getting some pretty severe swelling, we took him to his cardiologist several times but all the EKG and labs would  came back normal. They would have us increase his lasix, or make sure he wore compression socks, or cut out salty snacks, or drink more water or elevate his feet at night.  These measures would help a little bit, but then he would go back to the pitting edema.  We went on vacation and noticed he was tired, he couldnt hike as much and as long, and wasnt his usual chipper self.
In August we had his yearly cardiology appointment and biopsy/catheterization.  They found that his descending aorta was narrowed to the size of a dime and had to go in and do a stent.
 His poor body could barely handle the stress and anesthesia and he was in ICU for a week.
He was finally released and given strict instructions of light activity only, extra lasix to get all the extra fluid off and lots of rest.  We did all that. 
At that time we were told his heart (which was received in 2005 as a transplant) was going through transplant failure and we would need to hold onto it for as long as possible but it would need to be replaced. We were to start the transplant evaluations and told he had a few hurdles to overcome. He had pretty deep scar tissue from all his past surgeries as a baby and from his first transplant. Because of multiple blood transfusions and immunesuppression medications he has been on since he was a baby, his antibody levels were maxed out. (which means if given a new heart his body would immediately attack it). He was prone to arrhythmia (as was evidenced in his ICU stay). 
But we were going to go ahead with the evaluations and see what we could do, all the while taking care of what we had left in the meantime.

September 30th. He had a cardiology appointment.  Dr no longer used the word "Hurdles" when talking about transplant approval.  He specifically used the word "obstacles". He then mentioned that Peter was at a high risk of sudden cardiac death due to the type of arrhythmia that was common in transplant failure.  That was a complete SHOCK to say the least.  that was the first time that was even mentioned to us.  We didnt say anything to Peter, didnt want him to worry. 
 (When we started the transplant relisting process I kept getting the nagging thought "What if he isnt approved"? 
Every dr visit I would feel more and more discouraged and I would feel like a 2nd transplant was going to be an uphill battle. In the back of my mind I always thought  "what if".
I never made that admission out loud except to my husband who would always say "I dont know. Im not going to think about that until we get there".  SO of course I felt like the Debbie Downer every time I would think it.)

That cardiology appointment was his last, They had scheduled a CAT scan to see how bad his scar tissue was and then we were going to start the other dr visits etc.  I wasnt feeling very well, so That night we ordered takeout, he had a good dinner that he enjoyed.  We watched Masterchef together (something we did every night). He hugged me goodnight and went downstairs to his bedroom.
The next morning his brother went to go get him up for early morning seminary. He screamed the most heart wrenching scream, a sound I will never in a million years be able to get out of my head.  "Help! Help me! No no no no no! Hellp Help!!  Charles rushed downstairs and yelled up "CALL 9-1-1!!"
I said what happened, whats wrong?
"Peters dead!"

Apparently he had passed away sometime in the night. He had his laptop set up in bed to watch videos for a little bit like he did every night, he was undressed. But he was on the ground.  When it got hot Peter would lay on the floor and cool off, and it was unseasonably warm that week.  He had this little wooden step stool that he would use to get into bed and he was laying on the ground with his shoulder on the bottom step and his head on the top step.  He hadnt fallen, he was in a natural, graceful position like he had purposefully laid down. The rigor mortis was such that I assume he passed away very shortly after going to bed that night, maybe 11pm? It was 6am when he was found.

The rest of that day was a total blur. I dont remember much of anything.
We received an email from his cardiologist that he was almost positive that Peter passed away from an arrythmia, and had Sudden Cardiac Death. it would have been painless and fast.
In doing research SCD is fatal if not caught immediately. People who have survived say that they felt super tired and next thing they know they were in a hospital bed.  I think that Peter suddenly felt tired and didnt have the energy to hoist himself up into his bed, so he just laid down on the ground like he would do on occasion. I think he just fell asleep and died peacefully.

In the past 6 months I have come to finally accept that he is gone.  Sometimes it feels like he was hardly even here at all. I think back and it is hard to remember . He was like an angel that was sent to us to teach us a lesson and then he left and we cant remember him being here.  Sometimes it hurts so bad I cant breathe.  Sometimes I will find something random that reminds me of him and cant help but smile. I am a jumbled bag of emotions. I miss the king so desperately sometimes.  Other times I am okay because I know he is in a better place surrounded by his loved ones.

I look back and I can see the signs. I think I had been mentally preparing myself because I couldnt shake that persistent feeling that he wouldnt be relisted and we were going to lose him.  I think Peter sensed something as well. After his stint in ICU we had a month of a completely different boy.  He was so loving, and wanted to be with us all the time. He wanted to play games and spend as much time with his family as he could. He was wiser, more serious, took his responsibilities more seriously. He had matured almost overnight.  He made sure to hug and kiss and say I love you more often (this was NOT a huggy kissy kid). He made his last month worthwhile. 

I miss King Peter more than I can say.
Over the next week or so I will be typing out all the words that were spoken at his memorial service.
RIP King Peter, you are one of the noble and great ones. I love you! Til we meet again.

HAPPY BIRTHDAY PETER

Saturday was Peters birthday.

#9.

where has the time gone?

Peter did really well this year.

We are 6 months between biopsies. He did well in school. He worked extra hard with his PE teacher (Thanks Coach C!!) to increase his stamina, endurance and athletic prowess. He really improved!! He was a terriffic kid in school for the month of march, and had a great make a wish trip back in October. What a great year he had.

so Happy Birthday King! I love you!!!

Will post pictures later.