As I reflect on my life and think of all the years that I’ve been around, I can certainly attest to the fact, there are always ups and downs. Some days are better than others. Some weeks are better than others. Some months are better than others. Some years are better than others. Overall, I’ve had the mentality that life is 10% of what happens to you, 10% of who you surround yourself around with, and 80% of how you respond and react to your situations. I remember after having my son, Cole with a tremendous amount of medical complexities right after birth. These medical anomalies were unbeknownst to us during pregnancy. Cole being born this way created an astronomical amount of learning how to overcome obstacles and persevere into problem solving to ensure we kept our baby boy as healthy as possible. We truly gained an understanding of how to control everything within our power to control. Sure, I always wished my son didn’t have to endure so many surgeries and overcome all those obstacles. Of course my world was turned upside down when Cole was not just simply born healthy as our daughter, Lexi so seamlessly was. However, the truth is Cole took these anomalies head on and did it with pride, perseverance, and an unforgettable sense of humor. He was an inspiration to everyone that came in contact with him. He defied all odds and overcame every medical complexity that was supposed to either severely limit him or leave him unable to function. The truth is he was unbelievably smart, capable and continued learning new things daily. I was in a constant state of amazement as I watched him do what he did, never losing his motivation to continue defying all odds. What most people don’t know is I learned more from him in eight years than I’ve learned in my entire life! I thought it was difficult as he spent the first 8 months of his life in a hospital, in critical condition. I found it challenging and heartbreaking to leave my husband and baby in Cincinnati and only visit on weekends while I worked and cared for our 2yr old in Illinois. I thought is was difficult (at first) taking him home and learning to live with all of the technology that was required to keep him alive. I thought it was exhausting and frustrating to constantly explain to people why he required a gtube to eat and a tracheostomy to breathe. I thought it was challenging to advocate for Cole in school and fight for his rights almost daily. The truth is, now, all of that seems like a breeze compared to the alternative. Honestly and simply put… F*ck 2023.
We brought in The New Year celebrating in Florida, which is a family tradition for us. We stayed at The Margheritaville in Orlando, visited Disney, and spent some time with Uncle Danny and Aunt Robin. Cole loved to spend time with them and he had this joke, never got old, with Aunt Robin to persuade her to cut Uncle Danny’s mullet. Cole adored them and the feeling was certainly mutual. I’ll never forget that trip because of the incredible kindness of a man we met at a fancy steakhouse in Orlando. The mans name was Ray and he was just so impressed with Cole’s incredible personality, perseverance, and love of life. Cole was just minding his own business with a huge smile on his face going up and down the stairs while we waited for our food. Ray just thought Cole was the coolest kid and wanted to buy him a dessert. He came to the table and we introduced ourselves. Ray’s authentic and genuine kindness, literally, had me in tears. Cole signed to Ray that he loves water and he wanted to take the glass home. Ray (who had a brass plate with his name on one of the tables at the restaurant) told the waiter to give Cole whatever he wanted. The waiter showed up with bottles of fancy water and a dozen fancy water glasses. You would’ve thought Cole won the lottery that night because he had never taken a real glass home before from a restaurant, only plastic to go cups. Soon after coming home from Florida, we spent a weekend in Wisonsin with some great friends. Again, the highlight of this trip was Cole. Watching him play with his friends Levi and Ryker. The boys were just being boys! Taking rides on the luggage carts, playing Roblox, being silly in a game of twister, making a huge line of dominoes amazed by the domino effect, and running around the hotel. It warmed my heart to see Cole playing with his friends and just being a typical boy. We came home just in time for the last week in January where we were scheduled for a CT with contrast in Cincinnati for Cole. We were determined to understand why the reconstruction surgeries (over the last few years) hadn’t been successful and why he’d been struggling with breathing and requiring more oxygen. The results ended up showing that Cole’s aorta was compressing against his trachea and we would need to schedule an aortapexy surgery. I was so scared of this news and immediately went into research mode. Anyone who knows me knows that I could be completely unknowledable about a topic, but within a week I could become a resident expert. Especially, when it comes to my medically complex son and his needs. So many things were going through my mind; Who is the best cardiothoracic surgeon? How exactly is the procedure performed? What are the risks? How long is the procedure? Does it require cardiopulmonary bypass? What’s the recovery time? How long is the hospital stay? How will I tell Cole? How can I draw pictures to explain exactly what’s going to happen to him and why? It was important for Cole to understand everything. He was inquisitive and needed to know every detail. So already the first month of 2023 was off to a rough start. The beginning of February my cousin, in his 30s died from a heart condition. We didn’t go to his services because we were getting prepared for Cole’s spine surgery for his scoliosis that happens every six months. Cole did great with the lengthening and Mark and I were glad we advocated for him to keep the traditional rods versus what they were planning, swapping to Magec Rods. Cole’s recovery was perfect timing for us to head to Gulf Shores for spring break. We rented a penthouse in Turquoise Place with my parents and Lexi’s best friend. We had an absolute blast, like every vacation. The difference with this vacation was we were trying to be so careful to ensure Cole didn’t exert too much energy since now we knew why his stamina was low and we wanted to provide him as much help as possible. The truth is, my little guy has always been a fighter and he insisted on walking right next to Grandpa, while holding his hand, every step of the way. We offered a stroller, a wagon, or to hold him but none of that is as good as walking with his partner in crime, Grandpa Bill. We spent a week on vacation and returned just in time for my Mom to get scheduled for an additional appointment for her mammogram because something didn’t look right. Meanwhile, my Mom’s cousin who I’ve always referred to as my Aunt Sharon died. Aunt Sharon read everyone of my blogs, liked everyone of my Facebook posts, and loved my family deeply. Days later on April 11th my Mom was diagnosed with breast cancer. I remember hearing those words and my heart just sinking. Everyone has had a Mother and I’m sure many have a good relationship with theirs. I have always had the upmost respect for my Mother. I envy her kindness and her desire to be such an incredibly thoughtful and good human being. I remember her working so hard my entire life to make ends meet. Her work ethic has always been unreal. One of the most selfless individuals I’ve ever had the pleasure of knowing and she truly demonstrates what it means to genuinely care for others. I feel like I can tell her anything with zero judgement. In every stage of my life, she has been my number one fan. She’s continued this unconditional love to my children, her grandchildren, and they absolutely adore her and vice versa. I, literally, felt my heart tearing apart with two people in my life that mean the world to me and two medical complexities that I had zero control over. I took it one step at a time, which is what I’ve done with everything in my life. My Mom the entire time kept the most upbeat attitude and positive perspective. Not surprisingly at all, my Mother’s focus, concern, and worry was all about her Grandson and not about her being diagnosed with cancer. The end of April, we received a call from Cole’s otolaryngologist about trying to place a stent in Cole’s left bronchi to see if his left lung could be inflated and working normally. We were informed this would be helpful for his big heart surgery moving the aorta away from his trachea. We were told by the surgeon this procedure would be a “proof of concept” and he wasn’t sure it would work, but that it would be easy on Cole. After all, he had this scope done hundreds of times before and the Doctor assured us the only one this procedure would be hard for is him, trying to find the right size stent. Low and behold, ten days into May Cole had this procedure and the surgeon punctures Cole’s aorta with the stent and he never made it out of the operating room. Twenty days before his ninth birthday. My little boy, my baby, my superhero, my inspiration, my purpose, my one and only son who had fought so hard to live the life he had and had so much more fight to give was gone… FOREVER.
The amount of support people from all over have provided me and my family is surreal. It’s incredible how people can come together and help each other in a time of need. I will be forever grateful for everyone’s kind gestures, support, and time during this unimaginable event. However, at the end of the day, with every passing month everyone else gets to move on with their life. That’s simply not the case for us. For Mark, Lexi, and I things are very different and will never be the same. Sure we wake up and we go through the motions of everyday, however, we are broken and lost beyond belief without such an integral part of our family. Cole filled our household with happiness and endless possibilities. Every morning we wake up to the harsh reality that Cole is no longer here, yet his presence lingers in every square inch of every room in our house. The toys he used to play with, the drawings he made, the places he used to sit, the milestones he achieved, the funny things he did, the bath which he loved to be in, constant reminders of the happiness that is now a distant memory. The truth is the pain is overwhelming. My heart has been shattered into a million pieces and I’m unable to escape the all-encompassing grief. Every task seems insurmountable and it’s unfortunately a void that can never be filled. The daily task of pretending I’m ok seems easier than explaining to everyone why I’m not.
In September. I decided to take Lexi to a dermatologist for acne. We’ve tried some home remedies and over the counter cleansers, but nothing seemed to consistently work. Since I was taking her I decided to have Mark and I go as well because we had never been. Go figure, they take a biopsy of one of my moles and September 22nd I find out that I have malignant melanoma. They don’t waste anytime and they schedule to remove the cancer the following Monday. I end up getting a scar that looks more like a shark bite than a mole removal. This has barely phased me. I found out, took care of it and we move on. There is no moving on with what happened to Cole. The cruel reality is that there is nothing fair about what happened to my sweet boy. We had more to do together. I had more stories I wanted to share with people. I had more signing I wanted to teach him and he needed to teach me. I needed more snuggles, hugs and kisses. Cole had more impact to make on people. He had more positivity to provide for this world. He had many more milestones and odds to defy. Mark had more goofy bedtime stories to tell him. Mark had more things he needed to teach him how to fix. Mark had more dinners he wanted to cook with Cole. Lexi had more things she wanted to teach him. Lexi had more videos she wanted to make with him. Lexi had more baking to do with him. Lexi had more memories, a lot more, she needed to make with him. We have four chairs that need to be filled for dinner. We had more grocery shopping to do as a family. We had more parties to attend as a family. We had more, a lot more, holidays to spend with our extended families. We had more vacations to take as a family. We just had so much more… To do, to say, to make, to teach, to learn, to create, and to experience.
As I continue reflecting on this year and how it’s been the worst year of my life, I start to put things together. Now I am far from someone who looks for coincidences or signs for when and why things happen. However, I can’t help but notice that in April when my Mom was diagnosed with breast cancer it was weeks before her birthday. Cole, my sweet boy, passed away twenty days before his birthday. Also, I was diagnosed weeks before my birthday. Call it what you may. Coincide, happenstance, circumstance, fortuity, or just really f*ucked up.
No joke, I think I’m done with this blog and I’m waiting on publishing since it’s got a bad word. Yes, I know so ridiculous but people judge hard and I don’t feel like dealing with it right now. Nonetheless, I receive a text in October from Cole’s Nurse Susie. Now you might be thinking… Who? If you’ve read any of my blogs or knew my son, you know Nurse Susie. She wasn’t just a nurse! She didn’t just take care of him! She loved him unconditionally and he loved her the same. So much of what he signed about was Nurse Susie. It was always so important to him to see her and be with her. On the bus if Cole fell asleep she would take off her coat to keep the sun from his eyes, even though her arm would fall asleep from holding it up. None of that mattered. What mattered was Cole! He was always what mattered for her. She was right up there with Mark and I being an advocate for him at school. He trusted her and knew that she would always have his best interest. I receive this text from her stating she has some bad news. Low and behold, she had a scan on her brain due to migraines and they found a lump on her thyroid. Turns out it’s cancer. Seriously!? CANCER!! Third person in seven months in our family. YES! I said family, Nurse Susie might as well be. The good thing is it seems like this will be similar to mine and my Mom’s cancer where they find it, remove it, and we move on. But I mean come on!! What else can happen in a one year timeframe? I’m almost scared to say something like that. After all, we still have December left.
As Thanksgiving approaches, I can’t help but feel sick to my stomach. I don’t want to celebrate Holidays, not if I have to without Cole. I don’t even know how to survive day to day without him. I still see clothes at a store and want to buy them for him. I still grab 4 sets of silverware for dinner. How can we possibly have a Holiday without him? He loved so much to see all of our extended families. Mark and I discuss how it’s going to be difficult to just go to our Aunt’s house. We discuss how we could go to Mexico with our very close friends, but we (literally) just got back from Puerto Rico. Plus we’re headed for Florida in a couple weeks to celebrate my nephews wedding. We discuss how we can cook a turkey, but pretty much pretend like it’s a normal day and just be us three. Nothing seems right and two adults that do not typically struggle with decision making are really struggling with making a decision.
We allowed Lexi to decide and she chose to head to Aunt Dani’s house so she could play with her cousin Phoebe. Makes sense and I was glad she got that chance to spend time with her cousin. It was nice to see everyone, but as I sat at the dinner table all I could think about was Cole and what he would be doing and who he would be messing with. I barely was listening to all the conversations around me pertaining to one college cousin talking about dancing on the bars the night before. Another college cousin talking about history classes and others talking about business and every other conversation taking place in the house. All of it was simply confirmation that everyone else’s life just goes on. I kept wondering how we could all get together and be missing the brightest light in the room… Cole.
The following week we headed to Florida for my nephews wedding. I knew this would be one of the happiest, yet saddest days of my life. I am so happy my nephew found such an amazing girl that I now get to call my niece and they are so compatible and their lives will be so incredible. However, my sweet boy was supposed to be the ring bearer and that’s a thought that I can’t escape. I’m sitting in the chapel and I’m holding it all in, I feel like I’m doing so well. Lexi walks down the aisle, she’s a junior brides maid, and I can’t help but have the biggest smile. She’s the most beautiful girl and she looks so grown up with her hair and makeup. Soon after Mark, in the place of Cole, walks with the ring security briefcase. All of the other groomsmen have black on black, but Mark had orange suspenders, an orange bow tie, orange handkerchief, and orange cuff links to represent Cole and his favorite color. I felt my heart tear apart and my body felt heavy. I can’t explain how I felt entirely, but it was taking everything inside me to not walk out of the chapel. I was having a hard time breathing, my chest felt so heavy, and I couldn’t stop the tears. I could tell my crying was getting louder and I have no idea if others were noticing because I was so consumed with staring at Mark. I watched him as he looked so sad, so broken, and on the brink of just losing it. We both managed to keep it together. As I sit here now writing this, I am so honored to be his wife. He is truly a one of a kind husband and father. There are not many people that would be capable of honoring their son the way Mark did so gracefully for Cole. As the evening starting wrapping up I couldn’t help but think that if Cole was there he certainly would have been the star of the show. He would have danced the night away just like he did when he went to a wedding at three years old in Nevada. Everyone gravitated towards Cole and found him such an incredible boy… Because he was!
We came home from Florida after the wedding and I thought to myself, only one more month left of 2023 and it can’t come soon enough. The three of us were sitting in the living room discussing the weekend plans and I brought up the opportunity to go to this grieving get together. I know it sounds awful to sit around talking to complete strangers about losing loved ones, but I swear I did it one evening with another Mother that happened to lose her son, also named Cole, for whatever reason it felt ok. Lexi brings up the fact that it was well into December and we hadn’t even put up Christmas lights, a Christmad tree, and Cabo (the damn elf) hadn’t come back. My heart just sort of sank as I looked at Mark and I could tell he and I would have been perfectly fine with doing none of those things this year. We quickly decided that we needed to snap out of it and get into the Christmas spirit for Lexi. We went to buy a tree, we decorated the entire house, and low and behold Cabo arrived the following morning. The truth is, Cole absolutely adored Cabo and every single morning he would wake up and look all over for him. Nurse Susie promptly learned that this time of year she needed to arrive slightly earlier because getting on the bus without seeing Cabo’s bad behavior was simply not an option. Usually I was getting a text saying please send a picture of Cabo because Cole wanted to tell his friends on the bus. I knew the elf would be such a difficult task for me and I felt my heart hurting so bad, but I needed to remain consistent and normalize things as much as possible for Lexi. I start realizing how important it is for her that all of our traditions don’t just disappear because her brother is gone. Things are different enough, things are sad enough, things are never going to be the same. However, change is hard for anyone and if there are things we can keep the same for her, we need to do exactly that. As we approached Christmas I tried so hard to not just be an entire mess all day everyday. I found times in the morning when people were sleeping to just sit in Cole’s room and cry uncontrollably. I found times to sit in the bathtub and just watch video after video of my sweet boy and his amazing personality. Christmas Eve we host every year and this year was no exception, besides the magic was missing for me. I found it difficult to get ready, I found it difficult to want to be around people, and I found it difficult to pretend that everything was ok. I found it impossible to watch everyone open gifts and I discreetly walked into another room to just cry and scroll through photos of Cole. He loved to play Santa and pass out gifts. He would have already examined every present guessing what could be beneath the wrapping paper. His ability to keep surprises was limited and he’d tell people what he bought them, before they opened their gift, due to being so excited. As we wrap up this year and I think about how this is simply the worst year of my life, I’m still able to say I’m incredibly grateful for the support around me. I’m incredibly grateful for Mark and Lexi and the unconditional love we have for each other. I’m so lucky to have a talented and dedicated husband that has devoted his life with me to create a foundation that will benefit other medically complex children, their families, all while keeping Coles legacy alive. The best for this foundation is yet to come and the incredible support we have had already is heartwarming. Looking forward to 2024 being a better year. Simply and delicately put… f*ck 2023!