Resolutions and Trying Not To Feel Left Behind

First and foremost, Happy New Year to all of you reading this.  I hope you have all had a safe and happy holiday season, a Merry Christmas, Happy Hanukah, and everything else that we as humans celebrate this time of year.  We had a (thankfully) relatively low-key holiday season where we did as little as possible, ate as much as possible and tried to take it easy in anticipation of putting this year behind us.  We can use the excuse of Will but honestly, I think this is how we would choose to celebrate anyway 😊

2023 was certainly not what we expected but I think back to where we were last January 1st and I’m happy that we are on this end of things, having Will diagnosed with RASGRP1 and executing on his bone marrow transplant to rebuild his flawed immune system.  It’s been a busy year and that’s an understatement.  I think I can safely say we had 150+ trips back and forth from home to Phoenix Children’s and back this year and I’m probably undershooting it. 

I’ll start off by updating you all on Will since that’s what we are all here for.   He’s doing well.  His eating is progressing, his output is declining (if you know you know), and we have had minimal complications since we came home a few weeks ago. 

His energy levels are still low unfortunately and his little legs can barely get himself up and down the stairs but he’s trying to build back up his strength.  He’s still really swollen from the prednisone, and selfishly our goal now is to get him off of that so he can feel more normal.  Unfortunately, that is a very slow process to ensure he has recovered from the GVHD so we keep trying to practice our patience in the process of miniscule tweaks to his meds.

Trying to keep Will’s spirits up at the BCCD Clinic last week with a quick Selfie. I’m sure he’s smiling under that mask!

His hair continues to grow back slowly and in a rather unfortunate reverse horseshoe pattern but a month from now I expect his head will be mostly covered.   He’s taking it all in stride and is just excited for it to be growing back in, he’s even joking about his new “eyebrow” where his hair is growing back in faster along his hairline.   Emotionally I think things have been a little more challenging for him as this whole process continues to wear on him but outside of a few small cracks he puts on a brave face. 

Through it all he continues to grow and change just like any other 11 year old kid.  It’s weird to look back and see how much he has changed from a personality perspective over the last year and even more in the physical sense.  We have been so hyper focused on him every minute of every day that we haven’t really stopped to look at the macro sense and see just how much he has changed.  He’s grown up so much during this process and will continue to do so.  One example, he’s really gotten into food, more specifically the preparation, execution and the why of how things taste the way they do and spends a lot of time researching and watching videos on it.  He’s right up my alley on that one! 

We are also rapidly approaching day +100.  For Bone Marrow Transplants that’s a milestone day where we start evaluating Will from the before and after perspective to see how he’s coming along.  So that will all likely be picking up in the next few weeks but again so thankful and relieved to be on this side of it. 

From a family standpoint, a few weeks ago while trying to meet the responsibilities of Father, caretaker, manager/employee, it all started coming to a head and feeling very overwhelming as we came home from the hospital and took over 100% of his daily care.  So, I decided to take a brief leave of absence from work for a couple of weeks.  I’ve been blessed with a great boss, a great team and a great company to be employed with and everyone stepped up to the plate to help me step away for a few weeks.  I’m by no means a work-a-holic, I practice and preach a very healthy work life balance, but Kim likes to give me grief all the time that I’m never actually away from work and there is a lot of truth to that.  I’m always monitoring email, taking quick calls, etc…  It somewhat comes with the territory but its also a bit of a weakness that I have that I’m always trying to do better and to set a good example for my team. 

Will has been spending much of his time in our room since we came home. We brought his mattress in so he could sleep by us during the holiday break. I think he got used to us being together in the hospital as he doesn’t want to be alone much now. That is a real cat (named Cola) on his feet this time instead of the stuffed animals from the hospital!

This time around has been different though as with things slowing down at the end of the year, I was able to step away from about 95% from my responsibilities.  It helped that we have been so busy with Will’s care that there is little time to think about anything else.  It’s made a world of difference for me and my mental health though.  I think Will enjoyed it as well, he’s practically been begging me not to go back to work this week.  One of the greatest side blessings with all of this is the amount of time we’ve been able to spend with him.  I’ve really learned a lot about him over the last year including the fact that out of everyone in the family I think he and I have the most similar sense of humor, a fact that I feel very sorry for but love having a constant audience who gets my bad jokes 😊 

That time out brought us to the end of 2023.  I have had the end of the year circled on my calendar for a while now.  The end of the year signified a clean break from the overwhelming events of 2023 and I have been subconsciously looking forward to turning the calendar over to 2024 for a while now.  That was until my brain caught up with my subconscious and reminded him that we aren’t even half way through this year long process for Will. 

Case in point, the calendar turns to 2024 and we have a clinic appointment first thing tomorrow morning where we anticipate Will needing another infusion to help with some of his lower levels.  I have to remind myself that just because we have a “fresh start” with 2024 that Will is still smack dab in the middle of this and nothing really changes overnight for him.  We are still going through the same levels of care, same clinic appointments, same cautious approach to his non existent immune system, etc…  None of that really seems to care that it’s 1/1/24.

But in honor of the season, let me share a few quick resolutions for next year:

  • That we can make less than 30 total trips to Phoenix Childrens Hospital this year.  Seriously I can’t miss you if we never stop meeting like this! 
  • A clean bill of health for Will at the one year mark (September 2024 for those keeping track)
  • To use Will’s situation in someway to help other kids and families that are going through challenges like us.
  • To listen better, especially to my wife and kids. 
  • To take some of my inward focus and turn it out words on to others.
  • To spend more time helping others progress than I spend on myself. 

That brings me to my last point and it’s a pretty selfish one, however I saw a post on Instagram this week that talked about how cathartic and healthy it is to share our problems, challenges and weaknesses with others.  I always feel guilty, like I am complaining but if you have been reading the blog we have come this far so why stop now?  Allow me to indulge some more and continue in the spirit of transparency and selfishly for my own benefit 😊

When you go through a major life challenge there is a period where, if you are lucky and have an amazing support system, everyone and everything rallies around you.  Help comes out of the woodwork with meals, phone calls, letters, etc…   Time then passes and naturally you get better and life goes on. 

Except it doesn’t. 

Alex’s death wasn’t something that impacted us for a few weeks, months, or even a year.  The support comes fast, everyone wants to help then they naturally go back to their families, their life, etc… and we hope we have the opportunity to return the favor, but in the meantime we feel like we are still stuck in the same situation while it feels like everyone else can move on. 

Time heals all wounds right?    

I found the following quote several years ago after Alex’s death and it becomes truer with each passing year.  I’ve shared it many places before, but it does a better job putting it all into words:

“As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out.

Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too.”

I can sit here now and say years later that the waves never do stop coming.  It’s a similar situation with Will right now in a way.  We have been going through this process for over a year now, and probably have at least nine more months in front of us with direct care and something he will spend the rest of his life with to some degree.  We are in it for the long haul and while we realistically do not expect the world to drop everything and focus on us, that doesn’t mean that we don’t wish we could just pack up and move on with you all as well. 

We all have our challenges though whether big or small.  You don’t need to have the death of a loved one to appreciate this.  We all have times where we will feel like we are stuck while everyone else is moving forward and there is nothing we can do about it.  I hope this year that I can lead the charge on reaching out to others more frequently, just to let them know I’m thinking about them, I appreciate them, and I love them.  There frequently isn’t anything material to do, but the thoughts, words, actions, all mean something even if they feel pointless when we are doing it.  It shows we care for one another, that we are all in this together and that none of us will feel left behind. 

3 thoughts on “Resolutions and Trying Not To Feel Left Behind

  1. Beautiful, Shawn!! Love you so much! Here’s to a year you and your family feel on top of the waves. 🙏❤️🤗

  2. All I can say is hanging to the life preserver and never give up. Yes, your friends and family are always by your side helping you stay afloat. Love you and your family and God loves you as well. You’ll come out stronger than ever. You have a new mission now and that is to help others stay afloat. They need your support. They might feel there is no end y o this, but you know there is. You can help them recognize this and never give up hope. Write a book son, there are do many others that needs your sweet words of encouragement. Love Dad

  3. Shawn, there is a big difference between sharing what is going on and complaining! Well, okay, according to the Oxford Language dictionary to complain means to “express dissatisfaction or annoyance about something” so I guess by that definition you are complaining. But if you didn’t have some “dissatisfaction” and “annoyance” about your situation then I would question whether you are human!

    Keep sharing – it’s good for you, and for everyone following this blog. 🙂

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