Not Goodbye but Until We See You Again

Tuesday night was the wake for Seth and we were both really nervous and emotional. 

 

To say this was hard is an understatement.  Our little Seth laid there looking like he was sleeping.  I was nervous he wouldn't look like himself because those last few days he was very bloated from all the fluid he was retaining.  This would be the last time we would ever see our little guy and I just wanted him to look like his happy self and I'm so thankful he did.  Dressed in his red, white, and blue "All American Boy" onesie he will forever be our little July 4th firecracker.

The amount of people who came out to support us was really overwhelming. Friends, family, neighbors, coworkers, and many more.  At least a dozen nurses from 9 North of Boston Children's were there -  I even joked with many of them about who was manning the floor?

There were tears, and lots of them, from us to those paying their respects to Seth but, all things considered we held it together pretty well.  A lot of people said "you're the strongest people/woman I know" and my personal favorite was when someone said to me "You're a rock."  Now anyone who knows me, knows I cry at the drop of a hat!  If I see someone crying who I don't even know the odds are I'll be crying momentarily with them.  I'm a blubber head!!  So this really meant a lot to me, but you better believe I still have moments, and many of them where I'm sobbing over the loss of Seth.

A few things stuck with me from that night:

* The priest explained Seth's mass on Wednesday would not be the usual funeral mass, but a mass of the angels.  So true, out sweet little angel taken way too soon.

* And the second a quote from our neighbor who is also a nurse.  He said someone in the PICU once told him, "the smallest feet can leave the BIGGEST footprints in our hearts."  That statement couldn't be truer as it relates to Seth.

Wednesday morning we were up early to prepare for the funeral since we were being picked up at 8:30.  Sadie would be attending today so we tried to make things sound fun and told her we were going to ride in a special car (limo), which she loved and said Dada should get one!!  We had the casket closed on Tuesday after the wake so Sadie didn't have to see him.  We thought it would be too much for her to process seeing him and didn't want to stir up all sorts of questions. 

She noticed the flowers she got for brother immediately, and whenever anyone was saying their prayers in front of the casket she told me they were looking at her flowers.  She did get upset when watching the video of Seth's pictures saying she missed brother but was easily distracted, thank goodness.

We got the surprise of a lifetime when our good friends, who live is TEXAS, walked through the doors.  Steve and I immediately both started crying and hugging them.  It meant so much to us that they came all the way up for Seth's funeral but also to support us.  We only wish it could have been under better circumstances and that we could have visited for longer.

Seth's service was absolutely beautiful.  Most people know I have been a church goer since childhood, attending 7:30 am mass every Sunday.  I continued attending mass at Assumption College and after getting married.  I however had a hard time going once we got Seth's diagnosis.  I struggled with faith, and how could God let this happen to my baby boy? How could he not heal him and keep him here with us?

I have heard many people say this is God's will and it makes my skin crawl.  How could something so horrific be God's will?!?!?!?  How could cancer, chemotherapy, feeding tubes, central lines, multiple surgeries, constant poking, prodding, endless testing, months away from your home, and death of an almost 14 month old baby be God's will?!?!? The priest during his sermon spoke right to me and Steve and said "this is not God's will, this is never God's will and don't let anyone tell you that."  Ahhh .... 

 

 

In his closing remarks he turned to me and Steve again and said, "grieve with love, grieve with hope, grieve with faith."  What a beautiful sentiment.

Shortly after my brother in law read the eulogy Steve and I had written for our sweet little man:

There comes a time in most people’s lives when they decide to settle down and start a family.   When they envision their future, it is full of love and laughter.  Sure there will be some hard times to endure, but nothing they can’t handle.  Whoever could have imagined three birthmarks would lead us here?  Never in a million years, but here we are.

Although Seth was only here with us for 14 months he lit up a room no matter where he went.  Those big blue eyes, scrunched nose, and infectious smile turned heads and made people stop in their tracks. 

Seth could eat puffed rice cereal for days but wanted nothing to do with his birthday cupcake.  He got pure joy out of throwing his toys on the floor and making whoever was around pick them up repeatedly. Seth loved being carried and walked around endlessly.  He was deemed the mayor of 9 North at Boston Children’s Hospital and started crying the second he reached the entry way to his room.  Seth greeted everyone with his chicken wing wave, especially if you weren’t paying attention to him. When it came to sleep Seth wasn’t interested unless he was swinging, we’re not sure if anyone has ever loved their swing like he did.

While Seth could put a smile on anyone’s face, no one lit up more than his big sister Sadie.  She loves “Brother” with all her heart.  There was no better sound than the laughter and giggles heard when they played together.  Hearing her say “Oh Brother!” when he took her glasses off or threw his toys on the floor for the umpteenth time was heartwarming.  We will continue to talk about brother and give kisses to the sky at bedtime to say goodnight.  There will be lots of questions going forward, probably for years to come, it may be through a sea of tears that we answer, but our job now is to make sure she remembers Seth and how much he loved her.

We are all heartbroken over the loss of Seth but the support Steve, Sarah, Sadie and Seth received through his diagnosis, treatment, and now, has been nothing short of amazing.  Friends, family, complete strangers, acquaintances, Seth's doctors, medical team, and the nurses of 9 North which are now family provided food, gift cards, monetary donations, help with Sadie, ears for listening, shoulders for crying and an amazing golf tournament.  This is more than anyone ever could have asked for.  Thank you.

At a time like this, there are so many different feelings – anger, sorrow, confusion – and so many questions.  Why did it happen?  Why Seth? Why did his brain respond so beautifully to treatment but his kidney did not?  We may never know the answers to these questions and that is a burden Steve, Sarah, Sadie and all of us here will continue to bear in the coming days.  Although it’s hard to say you’re in a better place we know you’re in good company.  Today we don’t say goodbye to Seth, we say, until we see you again. 

We love you and miss you.

Once the mass was over we proceeded to the cemetery. 

The Tewksbury police department has been amazing.  They kept an eye on our house during those last few weeks when we were all in the hospital and offered to do anything we needed around the house.  They brought a cruiser by to let Sadie and some friends play with the lights, sirens, and even go for a ride.  And when it came time to lay Seth to rest they sent him off with honors.  There were two officers outside on motorcycles during the entire wake. The funeral procession included a police escort along with every intersection blocked off by police officers from both Tewksbury and Wilmington.  It was really something special to experience.

As we were making our way to the cemetery the skies opened up with some serious, heavy rain.  Nothing in Seth's journey has been easy, so this was just his way of letting us know he was there with us.  Thank you to the officers, funeral home staff, friends and family who got soaked through and through during the procession and the final prayers as we had our hearts set on being grave side.

Now comes the hard part ... living life.  All the planning is over, and while there are a few things that still need to be done such as; making memory pieces from flower arrangements and choosing a headstone, there is nothing more difficult than living every day without Seth.

 

Until we see you again ...

Heartbroken

Steve, Sadie and I are heartbroken .... 

 

 

Tuesday afternoon around 1pm Seth looked like he was working harder to breath and his chest was "pulling."  Sadie and I were planning to head home for her first day of preschool Wednesday and I noticed when we were about to say goodbye.  We called the nurses in and it was decided we would up his morphine.  We weren't sure if he would settle again like the week before so I headed home with Sadie and told Steve to call me if anything changed or if I should come back.  We made sure that Sadie said goodbye to Seth and gave him kisses on his piggies. 

 

 

Before even getting home Steve called and said I think you should come back.  I gathered a few things at home and headed back to the hospital.  Thankfully my mom came over to stay with Sadie and tackle her first day of preschool and luckily there wasn't any traffic. 

 

I held Seth for hours that night not wanting to put him down for fear of missing something, missing the end. 

He had a pretty restful night but his breathing continued to be the same. 

 

Wednesday morning we changed his diaper and I got settled in the recliner with him again.  We stayed like that ...

 

We had a nice visit with one of our favorite nurses who came in on her day off and in the middle of moving just to see us and Seth.   Around 2pm Steve headed downstairs to get some lunch,  Seth's breathing was still the same.  A little while after he left I saw one breath took much longer but then he started with the same pattern he had before.  A few minutes later he took his last breath, just as I wanted surrounded by love laying in my arms. 

 

We spent hours at the hospital holding him and telling him we loved him and how sorry we were this happened to him.  How could our perfect little boy be gone?  We didn't know how we could ever leave him and we didn't know what to do next.

 

We are all heartbroken and still very much working through everything but we have a strong, sassy little girl who needs us more than ever.  I think Sadie is going to help us as we navigate through finding our new normal.  She misses her brother so much and she asks us if we miss him too.  We give kisses up to the sky every night now to say goodnight to brother.  She doesn't completely understand what is going on but at the same time does.  There will be lots of questions going forward and we will be there for her, it may be through a sea of tears that we answer these questions but our job now is to make sure she remembers Seth and how much he loved her.

 

 

 

We can't say thank you enough to everyone for their support.  Friends, family, complete strangers, acquaintances, Seth's doctors and medical team, and the nurses of 9NW which we will now always think of as family.  This journey has been harder than anything we've ever had to do before and will have to do going forward.  You all made it a little easier, thank you.

 

Now we work on our final send off to our sweet, beautiful little boy ....