One Year. 365 Days. 525600 Minutes. 

How can it be one year since you earned your angel wings, Weston? Time has flown by so fast, yet moments and feelings seem like they linger for eternity. For days I have been pondering what I want to say to you. How can I put into words how much we miss you? How much we love you. How much we need you. How much we are thankful for every single moment we had with you.

My sweet boy, I hope you are at peace in Heaven. I hope you are happy, smiling and still as sassy as ever. I hope you are listening to Reggae music, watching Disney movies and running around - free from tubes, pain, and fear. I hope you have made so many friends; welcomed new ones into your heart and allowed old ones to guide you on your new journey. I hope you have found the biggest, brightest mobile and a new hedgie to keep you calm. I hope God himself has been giving you "Peter Pats" when you couldn't calm down and the angels have been snuggling you (and constantly bouncing you) in their wings. These are things I dream of still being able to do for you - but we cant. I hope you are showing off your amazing smile and personality and are growing up in a way we can only dream about. 

Weston, there is not a moment in my day where I do not think about all the wonderful things you will be and already are. You are so strong and so brave. You are handsome. You have amazing hair (and eyebrows) and the most heart-melting smile. You are sassy and always keep your Dad and I on our toes. You are a ladies-man (we see you Auntie Caitlyn). You are perfect. You will forever be our son and we will forever love you till no end. You have shown the world that heart warriors are truly the mightiest warriors - as strong as they come. You have proven that anyone can find positivity in any situation - its all what you make of it. You lived an entire lifetime in your short 6 months on Earth and I would give anything to relive every moment with you again. 

You have taught us so much and continue to be the greatest teacher we never knew we needed. I often reflect back on your short life with us and I am always astounded on how much you were able to endure and how much you were able to change me to my core. You, my little love, are the epitome of strength and bravery. You are my hero. You are my world. You have taught me how to love hard, how to let go of (some) control and how start living for here and now. You taught me that it is ok to take risks - if you truly believe in what you are doing. You taught me its OK to stand up for what I believe in and to follow our dreams - because truly, nothing else matters. You taught me it's OK to set boundaries, even with loved ones - because when it comes down to it, we all need to make healthy choices for ourselves. While the lessons you have taught us continue to guide our lives - it's the lessons that are still blossoming that keeps us moving forward. We are learning to be better people and to know what it means to devote our lives to something "much bigger" than we are. 

Oh sweet Poot, where would you be today? Oh, what wonderful things would YOU be? Would you be out of the hospital with a new heart? Would you be snuggling with Remy and getting into mischief? Would you be walking, talking, eating? Would you sleep in your crib or still need to be right by my side? Would you like playing with toys and still love bedtime stories every night? Or,  would we still be fighting for your life? Would we still be in and out of the hospital - living in constant fear of what is going to happen next? While we will never know those answers - we do find peace in knowing you are where you are supposed to be. Safe, healthy, calm - watching over us, hopefully with pride, love and joy. 

My boy, we haven't touched your room or your things in exactly 365 days. Its there for you - all of it; right where we left it when we brought it from your home on West 3. One day, your Dad and I will go through all of those things, but for now it sits - still in some ways waiting for you to come see it. We know you would love it. Still every now and then, I sneak into your room when I am restless at night and just smell your blankets. I need to smell you, feel you and kiss you. I need to imagine I'm still with you and remind you no matter what - I love you. I miss you. I will never forget you. As the story goes, "as long as I am living, my baby you will be". 

We miss you so much down here. We think about you constantly and are trying our best to live each and every moment of every day in your honor. We still are figuring out what life means without you. How will we survive? How will we get through the next holiday, the next day or even the next hour? How will we watch our loved ones and friends move on with their new babies, new jobs or new experiences - while we sometimes feel stuck and lost in our grief? Bottom line is we miss and love you more than any words could describe. None of this is fair. None of this is OK. But, were choosing to continue forward in your name and your honor. We are choosing to remember you every minute of every day. We are choosing to live our lives with passion, purpose and positivity all because you taught us how. 

Often times, its daunting - exhausting even, to think about what I am feeling or how to appropriately articulate what we are going through. I recently told someone I feel like I am trapped in an empty room. No windows; only white walls. How does that equate to emotions? Someone much smarter than I am I'm sure has an answer to that. But for me, that is how I describe my current stage of grief. Blank. Empty. Cold. White. Distracting. 

Yet, here we are. We have survived 365 days without you with us. It has not been easy - it's actually been really, really hard. So hard - I could never describe it with words but, your Dad and I are doing it together. We are finding ways to continue to pick each other up and rely on our amazing support system as much as we can. While we may not be doing everything perfectly, better believe we are trying to do our best for you. We have so many things to catch you up on since you have been the best guardian angel.

Poot, since you have been an angel:

We wrapped you up and held you close for hours after you left your body. We sat there in amazement at how handsome and truly perfect you are without all the tubes and wires attached to your body. We welcomed your hospital family into our own - forever remaining thankful for all they did for you (and us). 

We dove back into volleyball - something that has always been a source of comfort, family and community for us. While it was not easy, Dad was able to keep his commitment to his team that he made before you passed away. What we didn't know at that time was how lucky we would be to have an amazing support system with the girls and families that made this horrible time in our lives just a little bit easier. We are two of the most competitive people you will ever meet, so for us, using competition and staying involved was the right choice. Thank you for putting the perfect people in our lives when we needed them, Poot.

Weston, I knew that I needed to do things that would improve the lives of others like you. I have a strong medical background, worked in healthcare and went to school for too long to not use those talents to some degree. I began serving as a parent volunteer for NPC-QIC through Children's Wisconsin. I spoke about your story at the Children's Wisconsin Miracle Marathon. With the help of Dr. Handler and others, I started to develop a journal to help other families who maybe didn't have the background knowledge your Dad and I did (more on this soon). I was meeting with various organizations, trying to find a spark that would ignite my passion for improving the lives of those with CHD. Thank you my love, for introducing me to Callie and Project Buabloo. I am now the Director of Engagement and Apparel for Project Bubaloo. We are working hard to raise funds for CHD Research - truly making a difference in the lives of littles like you. 

We had our first Project Bubaloo event - Hops for Hearts - and it was amazing! I got to speak about you, your miraculous journey and how strong you are to hundreds of people. Your story has continued to inspire people from all walks of life and I feel honored to share it. This upcoming year, Project Bubaloo be hosting Hops for Hearts and the Ultimate Heart Race to help raise funds for kiddos like you. It truly is amazing what a group of talented people who are passionate about making a difference can do. 

We always wanted the staff at Childrens to know how much we love and cherish them. They did so much for you and for us, we know we could never thank them enough. I have continued our tradition of providing West 3 "gifts" for every holiday since you left - Valentines Day, St. Patricks Day, Easter, Your 1st Birthday, Halloween, Thanksgiving and Christmas/New Years. From candy, to cookies, to pizza, to the non-alcoholic bloody mary bar - you know I can't help myself when it comes to the holidays! It makes your Dad and I feel good knowing we can do just something small for the people who became our family through you. West 3 - we will always love you and be endlessly thankful for all you did for Weston. 

At Christmas time, it was hard without you. We knew at this time last year, you were really sick. We were desperate to keep you on the heart transplant list but even more desperate for you to show signs of your sassy self to us again. While this never happened, we were surrounded by love and positivity throughout the holiday season. This year, your Dad and I decided we were going to put up 4 trees in the house - two of them were for you. My Poot, you received so many AMAZING ornaments when you were in the hospital, it was a blessing to spend time going through all of them again. While we had hoped to have that tree in your room and have it be a reminder to you of all the people that were rooting for you on your journey - it now serves that purpose for us. 

Weston, you changed me to my core and with that, I knew I needed to change my purpose and drive in life. Mentally, I needed a change from what I was doing. I wanted to be able to spend time with CHD related things and also start something in your honor that I knew we could be successful at. Your Dad and I thought long and hard about how we could bring many of our passions together. We wanted to honor you and how you taught us to live with passion, purpose and positivity. We knew we could combine our passion for giving back, our love for athletics and our knowledge of the apparel and merchandising industry into one. With that, we started WKP Apparel. To say we have been busy is an understatement but it all we could have hoped for. We are now working longer and harder than we ever have before but we also are giving back to our community and organizations more than we could have imagined. We wanted to provide high-quality clothes, outstanding customer service, fun and creativity while also focusing on giving back to our community. For us, it hits everything we needed. Another avenue to spread your story, impact the lives of others and give back. Thank you, buddy. I cannot wait to see what 2023 has in store for WKP Apparel. 

To put things in perspective, in the 7 months since we started WKP Apparel in 2022, we were able to give back over $16,000 to our partners and most importantly to Project Bubaloo -which goes directly to CHD research. Without you, none of this would be possible. You truly are amazing.

Weston, I could continue writing to you, about you and for your for days. For now - we will leave it as this. We are endlessly proud of you. We miss you more than words could ever say. We see you in every sunset and still need those reminders to know you are there. Thank you for being ours. Thank you for being you.  We miss you, Poot. 

A few things we want you to never forget:

- We cant go over it. We can't go under it, We have to go through it. 

- You are the mayor of your own city.

- You are brave and strong.

- One Love. 

Listen to all the Reggae music. Get all the peter pats. Watch the biggest mobile in the sky and never stop watching over us.

We love you, Weston Kayne.

With all of our Love,

Bryon, Sam and Weston Pangborn

#positiveforpoot #WesStrong #heartwarrior #1in100 #CHD