Grief…Year 1….We love you and miss you Rylee

The giggles, the belly laughs, the fun, the cuddles, the hugs, the loves. The dance shows and the singing concerts in the family room. The sneaking to get food from the panty, the cannonballs in the pool, the sweet I love you’s. What I wouldn’t give to have any of that back. My whole life I have heard that saying, “What I wouldn’t do to have one more day….” I never really fully understood it, until we lost our Rylee. Now I would give anything to have just one day back.

I honestly can not believe it’s been a year without our sweet girl. It’s like I just lived the worst year of my life, blinked, and now it’s a year later. No one, absolutely no one, can prepare you for the loss of your child. You hear things and you wonder how it might be, but to live it is a whole other thing. The first few days are spent in just utter shock and horror with what you just had to witness. Then the days after, the world spinning around you while you stand still. Days of crying so hard you can’t breathe. Sleepless nights, and I mean all night with no sleep. Days of why? Days of how did this happen? Days of did we do enough? Days of just honestly trying to remain living.

It was 340am and we knew it was coming. Labored breathing and eyes closed. I won’t go into too much detail to save you from it. I have written this paragraph over and over and deleted it and deleted it. I want to share all of the details with you because I truly believe so many just do not truly understand the horror and sadness. What we had to witness was truly unbelievable. But I’ve decided I will spare you the in depth details. We sat there holding her hands and kissing her forehead, telling her it’s ok, and how much we loved her. Mike was determined he would carry Rylee out of our home. I was so incredibly proud of him for carrying her. We were determined to make sure Rylee had all of the dignity in the world. She deserved every single bit of it. Imagine the saddest movie you’ve ever watched, then multiply that sorrow by ten thousand. That was the scene that unfolded. The details were horrifying. To grasp the depth of this loss is to understand how profoundly it has changed us, how we act, how we process grief, how we struggle to move forward while those haunting images linger, and how we have been irrevocably transformed.

To understand what a family goes through when losing a child is literally the unthinkable. For someone who has never known the deep pain of losing a child, it might seem as if the person simply passed away and gently faded from existence. You don’t fully grasp what goes on behind the scenes, or how it has transformed the person you love who is experiencing this loss. You might see a change in the person for many reasons. The PTSD, the trauma, the images that you are now left with are endless and vivid. So please understand us when you are talking to us and we stare out into space. We are trying to focus on what you are saying, but we simply just can not. Grief is an interesting, long, unbelievable, unpredictable, unimaginable and the saddest roller coaster ride you will ever be on in your life.

While learning to live with this hole in our hearts and fatigue in our bodies, yes, you will see us happy, laughing and enjoying our lives, but the next minute crying that you may not witness. Many times we might be having fun at a concert, a trip or a softball game, and then the next minute you feel sad because sweet Rylee isn’t with us to experience such happiness. Maybe a smell, a sound, a song, a person who looks like Rylee or acts like her or laughs like her, and instantly you are triggered. Being triggered is a hard thing to understand because it comes out of nowhere. It can hit you when you are watching tv, at the grocery store, walking on a school campus, driving in your car, and ten thousand other ways. We’ve learned how to navigate and endure these triggers. Grief is not for the faint of heart, and I wouldn’t wish this experience on anyone.

I have to talk about Reese for a moment. I know we all have truly amazing kids, but Reese is very special. This kid has endured beyond the worst thing you can imagine. Losing her twin. To say this loss has been challenging for her is a complete understatement. For Reese, being a teenager today means juggling the demands of school and challenging classes, maintaining friendships, participating in sports, navigating social media, and facing countless pressures, all on top of losing her sister. I won’t get into her private day to day and personal challenges that have taken place, but let’s just say I know without a doubt that Reese is truly a strong person. She has pulled herself out of the deep dark hole that she has been in. I’ve used the analogy in the past about tripping and falling into a dark hole and hoping someone comes and gets in with you. Reese hasn’t had many friends get in that hole with her.

The unfortunate part for Reese and her grief is her age. She wants friends to support her, not just adults. We all want a best friend to be there for us when we need it. Listen, we know that kids her age have never been through anything close to what Reese has. There is simply no judgement on that. We know they don’t have the capacity to support Reese. Honestly, her friends shouldn’t know this feeling of such deep sadness and horror. I’m glad they do not. But that doesn’t change the loneliness that Reese has felt this year. Her friends get to be stress free, playing sports, going to fun events, while Reese is left with the loss of her best friend forever.

The amount of emotional work that Reese has put into herself this year has been so amazing to witness. A year ago she was so sad she could hardly function, failing grades, distant friendships. And now she is seeing the light. She ended this semester with a 3.8 GPA, friendships are blossoming again, she is smiling and looking to her future. She has worked hard to understand that now she lives her life with Rylee walking beside her, not without her. I’m not saying that with a flip of a switch she is not grieving any more, she is, but you just learn to better control it and compartmentalize when you need to. If an award of bravery, fight, honor, love and a willingness to survive could go to anyone, it would go to Reese Faythe Clark. We couldn’t be more proud of the hurdles this last year. Rylee, we know, is with her and so proud too.

In regards to Mike and I, our journey hasn’t been easy either. You know that book Men are from Mars and Women are from Venus? Well that has been us this past year when it comes to our grief. After our loss my grief was so intense that I just wanted to snuggle and talk about her non stop. Where Mike was more compartmentalizing the loss, as he was trying to work as well. It’s a fact that men and women have different brain structure, which means women likely have a vocabulary for grief and need to communicate with others, while men want to explore and discuss their experiences using cognitive processing. Men also want to fix things and problem solve, where I was finding I didn’t want him to fix my sadness. I just wanted him to acknowledge it and give me a hug. Through a lot of work on both of our parts we finally have a healthy ebb and flow between us. We know our boundaries and we have learned to support each other. Our love runs very deep for each other and our family, and because of that we will conquer our loss together.

During Rylee’s final days Mike and I looked at each other and said Rylee’s life will not be for nothing. She is not going to pass away and us just say well, that was a nice 16 years with her. No way. We knew we had to do something. It was important for us to keep her legacy going. Right then, the idea of the Rylee Grace Foundation was born. We knew Rylee had a generous heart. She would often sneak toys into her backpack to share with friends who didn’t have as much, always finding joy in giving to others. Our Rylee Grace Foundation provides comprehensive support to families affected by pediatric cancer, offering financial assistance for mental health services, treatment support, chemo sweatshirts for pediatric oncology patients, and small acts of kindness through thoughtful gifts.

We have to thank all of you for donating. We are overwhelmed with happiness for your beautiful and thoughtful donations. You have no idea how much it means that you would take the time to donate, and that you believe in us and our foundation. We have so many great things that we have already done and so many fantastic things in the works. Here’s a glimpse into how your donations have made a difference. We’ve sent an oncology family on a trip to create lasting memories, funded horseback riding lessons for a young girl, and supported a wonderful young man who lost his sister by providing him with sessions from a top child life specialist, all thanks to our foundation. We plan to send a newsletter very soon with all of our updates and future plans. Your generosity is bringing so many smiles to kids who truly deserve it. From the bottom of our hearts we thank you.

I want to express my heartfelt gratitude to each of you who has reached out with calls, texts, cards, hugs, and kind gestures, and who have simply acknowledged what we’ve been going through. Your support has meant the world. Thank you for allowing me to express my emotions, for patiently listening to me repeat myself day after day or week after week. Thank you for your comforting hugs, and for never trying to rush my healing process or fix me. I appreciate your understanding when I haven’t been able to respond right away, or when I’ve needed time to myself.

Thank you for not only sympathizing but empathizing with me, for stepping into my darkness and shining your light, hoping to bring a smile back to my face. Your thoughtful words and recognition of this horrible loss we’ve experienced mean so much. You understand that this journey of grieving isn’t something that can be rushed or easily resolved overnight.

I’m grateful that you’re willing to ride this emotional roller coaster with us, even during the difficult moments that may be challenging for you as well. I recognize the pain you feel seeing us in pain, and I deeply appreciate your desire to help and support us, even though you can’t change what happened.

Thank you for your unwavering presence, your compassion, and your willingness to share in both the sorrow and the hope for brighter days ahead. Your support has been a beacon of light during these dark times, and I cherish each of you more than words can express.

Over the past year, my friendships and family relationships have become even more precious to me, as I’ve realized how quickly things can change. I’m here to ride your waves with you, always by your side. I would do anything for you, and if you ever find yourself in a dark place, I will gladly jump into your dark cave to help you out. I can’t thank you enough for your support. My true friends and family have stepped up in incredible ways, and that means the world to me, especially knowing how busy your life is.

To Reese’s Tribe….

As Reese’s Mom, I couldn’t be more grateful. To Reese’s grandparents, close adult friends, and school counselors who always care. To her amazing wonderful epic supportive teachers, her softball lesson coaches who always made her smile, her flag football coaches who encouraged her and checked on her, her travel ball softball coaches who always uplift her and believe in her. Minus her Varsity softball coaches who did not care or support her. 🙁 It was because of you and your thoughtfulness that Reese excelled. From the bottom of our hearts we thank you. We will NEVER forget you.

To my animals…

To my Koda Bear, who we originally got for Rylee, but she ended up right away being more of a therapy dog to Mike and I. She literally can feel our emotions and runs over to us to try and take our pain away. I can’t tell you how many times I have been crying or upset and she would feel my pain, come over and lean on me. One time in the hospital with Rylee the Child Life Specialist brought her dog in to see her. After snuggles with Rylee this dog came over to lean on me. I made a comment about how her dog was comfortable and leaning on me. She responded that she is doing her job of taking my pain away. She explained that when dogs lean on you, it’s their way of comforting you because they sense your energy and want to provide the support you need. I’ve since experienced this firsthand with all our animals, but especially with our Koda girl.

Our Brody never left Rylee’s side. He knew. He always knew about Rylee’s illness. He slept every single night in her room at the base of her bed. He protected her, loved her and supported her. His love was beyond words incredible to Rylee. He was her protector every single day. Brody was a 13 year old German Shepard, which was old for a Shepard. After Rylee passed, he held on for a few more months to tend to us and make sure we would be ok. Brody is now in heaven with Rylee, running and playing right next to her. Best friends forever.

After Rylee passed away I questioned many times, hoping she was in heaven, but you can’t help but really wonder about heaven and where people go. Is she ok? Is she alone? Who is she with? As a mama bear you can’t help but worry even after they are gone. I started to watch the show “Theresa Caputo: Raising Spirits,” and I am now completely convinced that heaven is real and that we are always surrounded by our loved ones. These are my heartfelt thoughts on the afterlife. While I may not be a scientist or a Bible scholar, my belief in this is unwavering. If you ever have the time to watch, please do. Theresa’s show has brought me such comfort, insight and hope. She has gotten me through some dark sad days. PS. I am now on her wait list…..Ha

We thank you, Rylee, for blessing us with you. If I could only be blessed to have you in my life for 16 years, or not have you in my life at all, I would do it again in a heart beat. The day I held you in my arms for the first time was the day I knew immediately I was given an immense gift. To know you is to be given the best gift in the whole world. How did we get so blessed? I live my life now in honor of you. Thank you for being kind, honest, loving, funny, witty, smart, my cuddle girl, my best friend forever and my everything. I miss you every single day when I wake up, all day when I breathe, and I thank God for you every night before I sleep. We love you forever and ever my sweet angel girl.

We will miss you forever and always. We love you Rylee Grace oxoxoxo