Dear Cole,
I could have never anticipated all the emotions that would overtake me after you unexpectedly passed away. Heck, who am I kidding? Of course, I could have never anticipated the emotions because I could have never expected you would not have made it out of a procedure you had seamlessly made it through so many times before. I knew after hearing those words (the second time) from the surgeon, “we lost him” you were gone. It became even more of a reality when Daddy and I went to the operating room to see you one last time and there you laid on the operating table covered in blankets, completely lifeless. I begged for you to wake up, I begged for you to let me take your place, I hugged you so tight and kissed your face and never wanted to leave you. My heart hurt so bad, but it wasn’t just my heart. My body was numb, I felt an overwhelming sadness and, literally, was sick to my stomach. From that second, nothing in my life would ever be the same and I would need to learn how to cope with all the firsts without you. Truthfully, I didn’t even know what that meant at the time, but as each and every first occurs, it’s like a knife twisting in my heart and an emptiness that no matter how many people are physically around me, I feel so alone. At this point, I’m not sure the firsts or any of these feelings will ever go away.
On May 10, 2023 Daddy and I left you, all by yourself, at Cincinnati Children’s Hospital for the first time ever in (almost) nine years. We didn’t want to leave you, in fact, we wanted to just hug, kiss, and hold your cold body forever and never walk away. We actually contemplated for a few seconds staying in Cincinnati, but we wouldn’t have been allowed to stay with you and we had the most terrible news to share with your sister so going home made the most sense. I still don’t truly understand how Daddy made it home driving, but your Father is one of the most impressive humans and he never ceases to amaze me. This was the first time ever that Mommy and Daddy, together, drove home without you from Cincinnati. We cried uncontrollably, confused at how something like this was even possible and held each others hands so tight. Son, you probably just assumed that all Mommy’s and Daddy’s love each other unconditionally like your parents, but it’s unfortunately not always like that. In every situation your Daddy and I have been able to pick each other up, encourage each other, and create the neccessary support the other person required to be our best self. This drive home there were no words of support, no optimism offered, and zero possibility of looking at the glass half full. We are both shattered, broken, and nothing that was said or done would fix it unless it meant having you back. The heartbreaking feeling of leaving you alone on the operating table was a feeling of guilt I didn’t even know was possible. The feeling of leaving you at the hospital, all by yourself, lifeless, felt so wrong but we had no choice. There was no way we would have been able to stay with you and your sister needed us more than ever before. We spent over an hour in the car contemplating how to deliver the news to her. When we got home and told this awful news to Lexi, I saw for the first time her anger, anger like I’ve never seen in Lexi or anyone and how badly she wanted to kill the doctor for killing you. The screams she let out and her mannerism of grief was the first time I’d seen that in real life. I thought stuff like that only happened in movies. That night as Mommy, Daddy, and Lexi just laid in your bed crying that was our first time laying in your bed without you. For the first time, I didn’t sleep a wink because I couldn’t stop the tears, your Daddy cried all night snuggling your Jake doll that he dressed in your favorite spiderman pajamas. The house was so quiet. It was the first time with no machines alarming, no suctioning, no oxygen concentrator humming, no ventilator swooshing or beeping, and no heating chamber sounds. Literally total silence which was never the case in our house. For the first time since you came home, at 8 months, we didn’t get up to suction you, give you water, silence the alarms, or feed you. I’ll never forget (years ago) when we decided to increase your feeds during the day, ensuring the same caloric intake, and decrease the feeds throughout the night. This ended up being good for your tummy, good for potty training, and one less time of Mommy and Daddy waking up throughout the night. I would recommend every Mother of a gtube fed child forgo a night feed and add one (if possible) during the day. Son, what I would do to be able to wake up multiple times per evening to take care of you! I would get up every five minutes to feed you if that meant I could have you back in my arms. I promise I would do it all over again with even more gratitude and zero complaining. Mommy and Daddy had it all figured out. We really did! We took turns and honestly we were so used to it, it didn’t even phase us. Everything we do is as a team and it’s what makes our relationship so strong. Taking care of you was no exception. You were our purpose and for the first time, I’m not sure I have one. Rarely did we complain except when you took your vent off to tell us you needed water and, literally, the water was at your bedside. I remember scolding you once (maybe a handful of times) for waking me up to get you water and from that point on, if you took your vent off for water and I was coming to your room, you would sign where’s Daddy? Son, I would wake up every minute to get you water no matter how close it was to you, if I could. The things you take for granted, the things you never think of, and all the regrets that come once someone is gone is something I was incapable of understanding before May 10th.
The first morning without you at about 5AM I made coffee and just cried (uncontrollably) as I stared, for the first time, at your empty bed. I remember the times you would wake up early and need a suction, water refilled, fresh ice, etc and I would joke with you about Mommy needing coffee before I can help you. You were so funny and such a little comedian that if I came to your room in the morning, you would ask me did you have coffee yet? Everything about you made me better, forced me to be wiser with proper research and encouraged me to be the most effective human being with a tremendous amount of responsibilities. People would always ask how do you do it all? I used to always think, it’s all about having a good routine and an even better perspective… YOU taught me that! Son, I don’t need to tell you about schedules, habits, and routines because you knew these oh so well. You insisted on knowing your schedule everyday and you would ensure everyone else around you knew your schedule as well. I will never forget the last schedule you signed to me right before the anesthesia team took you back to the operating room. As you sat in your favorite red wagon, you signed, first they put me to sleep (you would cup your hand over your trach) because that’s exactly what the first step was. Then you signed, next they will put a camera down my airway, then I’ll wake up, next we will go home. Then, I will see Lexi and Grandma Joy, and then I will have a sleepover with Lexi. That’s exactly what the plan was son and my heart breaks everytime I think about how I responded with yes, that’s right. I was continuing to confirm that this was a no big deal procedure because you had it so many times. The only difference with this procedure was supposed to be the placement of the stent. I’ve attempted to tell myself that you went back to the operating room as happy as can be, got to sit in your red wagon for the first time instead of a hospital bed (per your request) and didn’t feel a thing when all of this took place. I know this is selfish, but none of that helps me feel better. You should be here, you should be with your family, and there is no better place for you than here with us. We knew you better than anyone else and when people say you’re in a better place now, it’s because they truly didn’t know you. It didn’t matter if it was a doctor appointment, school, a birthday party, or even a vacation, your most important stop was always home. You loved your house, you loved our home, and you loved being with all of us. I would joke around with you about living with Grandma, Grandpa, or even Nurse Susie. You would beg them to stay or beg them to come over everyday and I’d joke about just packing your bags and going to live with them. That was the best way for me to get you to just say bye and stop begging. You would immediately sign, NO! Mom you’re just joking. I would concur everytime, yes, just joking. I’m shattered, I’m broken, I’m lost, I’m hurting so bad, and the last thing I’m thinking about is a damn routine that exists without you in it. Mommy had a routine (same one everyday for years), waking up, doing pushups, making a cup of coffee and sitting with Daddy on the couch every morning to talk about any and everything before you kids woke up. Most mornings we talked about passive income and our next adventure. We’ve literally had thousands of conversations about how we can keep generating revenue, business adventures, and achieve greatness. It didn’t matter how many times we had a similar type of conversation, it never got old, and we were both always excited to talk to each other. At 6AM I’d start your feed and get the cat a can of tuna and fill up her dry food. For the first time I didn’t start your feed and I also forgot to feed the cat. In fact, it was day three when I realized the cat had dry food, but I had not given her tuna in days. My routine has been completely disrupted and I don’t have a new one yet. Honestly, I am not even interested or ready to create one.
The first time we all piled in the car to run and grab lunch at Portillos and go get orange flowers to plant for you, it seemed so weird. We didn’t have you with us and you would have certainly been there wanting to buy stuff. Cole, your love for shopping was serious. You would beg to go to CVS, target, or walmart regularly. You really preferred going with Grandma and Grandpa because you knew you would, likely, be walking out with more things and whatever you asked for. For the first time, we went to Portillos and didn’t order you a large water with ice. You loved water so much and you could chug it so fast. I’ll never forget how proud you would get when you would chug water without taking a break and drink a huge amount, while Mommy, Daddy, and Lexi would cheer you on saying chug it! Chug it! Chug it! Everyone was so impressed. The truth was because you utilized a trach to breathe, you didn’t need to take a breath because you could drink water and breathe simultaneously. I remember thinking we are in big trouble when you turn twenty one because there is no one that would be able to shotgun a beer faster than you! No matter what restaurant we went to or how many glasses of water you already had, you insisted on getting water. It was a routine for all of us and your big sister was such an advocate that she would always remind us about your water. I’m sure part of it was you tapping everyone on the shoulder telling us you wanted water with ice, a lid, and a straw. The other part was your sisters need and desire to include you in every and anything. Cole from the time you were old enough to drink water, you’ve had a preference in what cup you drank your water out of. The funny part is Lexi was the same when she was little. The difference was when Lexi turned two years old I was firm with her and she could either have the cup I gave her or not have water. Son, I truly did try this with you but you were stubborn enough to choose not to drink water and due to your kidney issues, I really wanted you to stay hydrated. I could have given you the water via your gtube and I had many times. However, at the end of the day, your control over things was limited and if you wanted control over the cup you drank out of, I was going to allow you that control. It wasn’t always easy, you went through a phase where you needed a large McDonald’s cup. Those cups really aren’t meant to be forever cups so we were constantly buying new ones. I remember when one broke late at night and we had to wait until morning and I immediately ran to get you another one. After that episode we ensured we had an extra one on hand. We also learned to grab a bunch of straws and keep them in the pantry. Those straws really aren’t forever straws either so we were constantly swapping them out. I’ll also never forget when we went to a nice restaurant on vacation with Grandma and Grandpa and everyone got a fancy type wine glass for their water and you got a plastic cup with a lid and a straw. Your response was absolutely priceless and it didn’t matter who knew ASL or who didn’t. You would make certain that people knew what you wanted and needed. You, immediately flagged the waitress down and told her that she needed to get you a glass, same as everyone else. However, you also wouldn’t allow them to take the plastic kids cup because you wanted to take that one back home. The best part is, we came home from that vacation and you insisted drinking your water out of a wine glass. That wine glass was by your bedside for weeks and I just recently washed it. I still haven’t washed your blankets and pillow cases and, truthfully, I don’t know when I’ll be able to. I sit in your bed and snuggle your blankets and smell your pillow. I just miss you every second of everyday and everything reminds me of you. Anyway, after lunch we went to buy flowers and Lexi and her friend Bailey, yes the one with the rainbow bear. Remember when you wrote a letter to Santa asking for Bailey’s rainbow bear? The best part was you didn’t want the same bear as Bailey. You, literally, wanted Bailey’s rainbow bear. It was so funny, but when you had your mind made up on something, changing it was not an easy task. Bailey and Lexi got their own cart and I know you would have been right there with them adding to the cart. They ended up getting $200 worth of (mostly) orange flowers.
For the first time Mother’s Day, four days after you passed, did not at all feel like Mother’s Day. It was such a hard day and I didn’t even want to acknowledge it was Mother’s Day. This made me sad for Grandma Joy and Grandma Barb, but it didn’t feel right for them either. Nothing feels right without you! Lexi asked me not to cry because all I’ve been doing is crying and so I did my best. This is our little secret, but when I couldn’t hold it in, I’d just go where she wouldn’t find me to do my crying. The truth is Cole, I’m so broken and I can’t even imagine a day where I don’t simply break out in tears thinking of how badly I want you back. We wanted a baby boy, I carried you for 35 weeks and I loved you from the moment I knew you existed. That love for you grew each day as I was in complete awe with your love to live and all you were willing to fight for. You were a complete inspiration, an utter miracle, the purpose we needed, and you completed our family of four. I tried my absolute best to be strong for Lexi and I was grateful she had Mandi, Layla, Leona, and even Adreana and Matthew stopped by. With less than three weeks until summer, we’ve allowed Lexi to just stop going to school because she doesn’t want everyone to tell her they’re sorry and talk about it. She’s been allowed to have a sleepover every night with one of her friends. All of her friends parents have taken turns allowing their daughters to spend the night and skip school to comfort and support Lexi. For the first time, we stopped having dinner as a family at the dining room table. It just doesn’t feel the same without you. No matter how many times we tried to give you a much smaller portion of food (since you don’t eat orally) you never allowed it. You would make Daddy get you the same amount and the same stuff everyone else had. You had dinner with us every night and on nights where you wanted to be on the vent in your room, you made sure to get our attention and made certain you were given a plate of food in your room. I miss you knocking on the wall, pulling off the vent, or ringing the bell for our attention. The best was when you would video call me from the other room or when you would text me. Mom, come to me was your favorite text. I would always ask why? What do you need? You always typed suction. You rarely needed that, but you knew that would get me to come right away and you didn’t want to wait. You’ve always been so smart and always made sure we knew what you wanted and your persistence was incredible. For a little boy that couldn’t speak, you certainly never allowed that to prevent you from having a voice. You definitely had a voice, it was through ASL for those who knew how to sign. Or… It was pointing and in some cases taking someone by the hand and showing them. You would also text people when they were having a hard time comprehending. Son, you simply didn’t allow others to not understand. Dinner will never be the same without you putting fingers in your Dad’s plate. Daddy always had so much patience for you and always allowed you to touch whatever food he had and shared with you constantly. You could have had the exact same sandwich, but you wanted a taste of Daddy’s. I’m sure when all the activity dies down and we no longer have non-stop company, we will do dinners again at the table because that’s an important family time and we need to do that for Lexi. This will be hard son and there will never be a time, I won’t be thinking about you and how you should be sitting in your seat at the table with your family. We would tend to use dinner time to talk about school and because Lexi would always say the best thing about school was coming home and the worst thing was going to school. When we asked you about school you would give school a thumbs down with a big grin. The truth is, you liked school and you, especially, loved all of your friends and your teacher.
Your 3rd grade teacher came to our house to drop off your belongings. I can see it now, you would be throwing your hands up in the air like, what?! Her coming to my house was an option? She should’ve just done school with me at home! Yes, son for the first time she came to our house and we didn’t go to the school to see her. This was a much needed visit for us. On a regular basis you would come home and tell me that I was signing wrong. I accepted it the first ten times, but eventually I would joke around back with you and try to get you to tell Mrs. Hutchins that I’m not deaf, I’m a hearing Mom so all I know is what YouTube tells me and I’m trying my best. You and I would both laugh and I found out you never told her that. Of course you didn’t son. You were a people pleaser and in school you had the upmost respect and best behavior. You tried so hard and didn’t want to disappoint anyone, especially your teacher. The impact you had on her is incredible! Cole, you loved her so much and would always tell me how funny she was. I was so grateful you had her and you were progressing so well. Son, you don’t know this but Mommy and Daddy fought for your well-being every single day. Doctors, insurance, Surgeons, procedures, surgeries, therapies, medicine, and school. I will forever appreciate her for allowing me an opportunity to not have to fight for you related to school this last year. I’ll never forget what she told your Dad and I during the first parent teacher conference. She, literally, said if he can overcome all of these medical obstacles he can certainly learn the academics. She had high expectations for you and she was willing and able to spend the necessary time to understand how you received information and tweak her teaching style to achieve the best results. Cole she is absolutely devastated about you being gone and she is also a very thoughtful person. She had the whole 3rd grade class write you a note and your DHH class write you letters. They painted a picture of the horizon and it says Cole will always shine bright on our horizon. She made a beautiful photo album with all the pictures from you over the last six years at school. She had shirts made for all of us, orange of course, because she knew that was your favorite color. We even got orange bracelets that say DHH Rocks and For Cole. The amount of people you impacted and touched during your six years at that school and in this world is absolutely unimaginable. Lexi clung to her and wanted to show her every Likee video and wanted to share every story possible. It was so funny to see the picture of you wearing Lexi’s pink cat headphones at your desk in school. Mrs. Hutchins explained that you wore them for two weeks straight and you told her you could hear better with them on. The best part is they were not even plugged into anything. Cole, I miss your sense of humor so much and I truly did look forward to you being a comedian with a mustache when you grew up, which was your aspiration. It’s funny how some kids want to be a firefighter, a police officer, or a teacher but mine wanted to be a comedian with a mustache. I supported this 100% and although I never truly understood the mustache part, I thought it was absolutely perfect for you. I’ll never forget how you thought I was trying to change your lifelong aspiration of being a comedian to a ring bearer. I had to explain that being a ring bearer was only one day during a wedding for your cousin, not the rest of your life! I can’t help, but think of all the stories I should have for the next nine years and beyond. It’s not fair that you were robbed the opportunity to continue living your best life! It’s not fair that we have to learn how to be a family of three! It’s not fair that your sister has to learn how to cope with all of these unimaginable emotions! It’s not fair that she has to wonder if she is an only child now! It’s not fair that she lost her best friend! It’s not fair for any of us and it’s certainly not fair for you! You had the schedule that day all figured out. They would put you to sleep, look at your airway with camera, you would wake up, go home, see Lexi and Grandma Joy, and have a sleepover with Lexi. I’m so sorry your schedule wasn’t followed! I’m so sorry you didn’t make it out of a procedure that you absolutely SHOULD have! I’m so sorry that this happened. Im so sorry you are NOT here! Im just SO SORRY!! I would do anything to change it. For the first time, I have no words, no advice, and certainly no resolution.
The first time we packed our stuff to go to the cottage on Friday May 26th without you was so hard. The night before Lexi grabbed your orange suitcase out of the attic and packed herself. Cole, you would have had that orange suitcase out a week earlier and had every stuffed animal that could fit in that luggage. Your other favorite thing to do was grab a garbage bag and shove all your animals in that and put a couple outfits in your suitcase. Nonetheless, you were packing usually days before we left for trips. You were so smart and strategically dealt with either Mom or Dad based on how the end result would benefit you. When it came to stuffed animals coming along on vacations, you would tend to negotiate with Dad. It makes perfect sense! Dad was much more lenient, not at first, but you always ended up with more animals than what Dad initially said. You did the same thing when it came to bed time. You always preferred Daddy. The best part was, I would hear Daddy talking for Huggy Wuggy and other animals when you should have been sleeping. The two of you would be laughing so hard and you adored his silliness, no wonder why you wanted to be a comedian. You were so intuitive and you knew Daddy putting you to sleep would mean more awake time and so that was always your choice. I, literally, felt sick to my stomach the whole time we talked of even going to the cottage. I really thought since you were not here it would be too difficult for me to go. Lexi insisted on us going and celebrating your birthday, like we did every Memorial weekend at the cottage. You talked about your birthday and going to the cottage and Lexi knew it was important to fulfill that wish for you. We left and I barely spoke the entire time in the car. Mandi and Lexi were in the backseat and Daddy took a lot of work calls. I just kept reading this blog and adding to it. I tell myself that these blogs are therapeutic for me, but they also make me sad. Cole, the truth is no matter what I do right now I am sad. I could have never put into words how much I loved my children before your unexpected death. However, unfortunately, I think I can now. It feels like an intrical piece of me is gone forever, it feels like I can never live life to the fullest as we did before. I truly love my children more than I love myself and they created a real purpose for me. I’ve always wanted to be successful and pushed myself to the limits, way before children. However, children gave me a true purpose where I was not only responsible for being successful and making a difference, but I now had a priority to raise decent human beings and felt solely responsible for protecting them. Cole, I will always have a part of guilt inside of me for what happened to you. The truth is, no matter how much I think about this situation, you were robbed of your opportunity to continue fighting in this life that you deemed so important. We made a choice to have all of your medical needs primarily done in Cincinnati. We didn’t know any different at the time and we only did what we thought was the absolute best for you. I know all of this, but that doesn’t change the fact that the Doctor we chose for you also made a huge mistake that took your life. People that didn’t know you could easily say Cole was a sick boy, in pain, and had so many medical complications. Medical complications? YES! Sick boy and in pain? NO! Many people have told me you’re in a better place. This is completely false! I knew you better than anyone else and the best place for you was at home with your family! Son, you were born with a lot of medical complications, but that’s what was so impressive about you. Not a day went by that I wasn’t in complete awe with you and your personality. Son, in this world there are so many people that are negative, complain about their circumstances, and make excuses for their behaviors and outcomes. Cole, you have forever had major medical obstacles to overcome and you overcame each and everyone of them with a huge smile on your face, the cutest dimples in your cheeks, and love in your heart. You were truly inspirational and you forced our entire family to have a better perspective. It was impossible to complain over circumstances and we learned from you how to persevere into problem solving. I will be forever grateful for the incredible example you bestowed upon me. I mean it when I say you made me a better person.
The first time we pulled up to the cottage and I walked into our bedroom I was devastated. I, immediately began to cry hard. You wanted to be at the cottage so bad and you would have been so excited to have been there. The first thing you would have done was find Grandma Joy because it was important for you to tell her we we had arrived. Next up would be that dang raccoon. No matter how old you got, I’m convinced you would have pulled that thing around and brought it on the boat with us. Grandma Barb and Grandpa Bill came with this time, I know that’s not usual for this time of year but due to the circumstances I’m glad Grandma Joy asked for them to join. You know how sometimes you just needed your Mommy? Well, don’t tell anyone but I’m like that too… Still. The first time we went out to Friday fish fry at the cottage, it felt so weird all of us being out and you not with us. I was trying so hard to keep dry eyes, but as soon as Grandpa said I miss my buddy, it was over for me. I needed to walk outside of the restaurant because I didn’t want to make everyone else upset. Lexi and Grandma Barb came out right away too. Lexi wrapped her arms around me and said Mommy please don’t be sad, I miss him too but he wouldn’t want us to be sad. Cole, she’s so stinking smart and she’s so accurate too. You were a total people pleaser and cared so much about other people’s feelings. The first time we took the boat out it was so hard because there was no way we were taking that out without you! Your love for boating was absolutely unreal, especially because you were not a huge fan of the sun. Although you weren’t a huge fan of the sun or a huge fan of the sand, you were a total trooper and would deal with whatever we put you through. Boating was different, the sun didn’t matter. You loved pulling the kids on the tube in with the rope from inside the boat. You loved standing holding on while the boat was going fast. You loved driving the boat, even all by yourself. The best part was so many people, especially your Grandparents were so nervous and worried about you. You were definitely small for your age, but smarter than anyone truly knew and you were all good when it came to boating. In life in general, you knew limits and you were never a dare devil. On the boat, you also knew your limits, but in the boat, always a dare devil. I loved how when all the kids would climb and hang from the tower in the boat, you would do the same. It took you years to be able to climb like that, but once you could, you were unstoppable. When you got tired, you loved sleeping under the glove compartment in front of the passenger seat. Lexi went under there this time and said this is what Cole would do, right Mommy? I am so lost and feel so horrible that I don’t know how to make Lexi feel better. I don’t know the right words to say and I certainly don’t know what to do for her. She tried kneeboarding off the boat and she was very hesitate so in an effort to motivate her, I said do it for Cole’s Birthday. She totally jumped in and gave it a try simply because of you. She was unable to do it and got extremely upset. She ended up running into the school room at the cottage and cried. When Daddy checked on her she explained she was so upset because she wasn’t able to do it for you, for your birthday. I felt completely horrible and clearly what felt like the right thing to say at the time, ended up not being the right thing. I feel this exact same way with Daddy. He is hurting so bad and I’ve never seen him so sad, but I don’t know what to say or do to make him feel any better. Cole, you completed our family and without you, we are not complete.
For the first time, we drove home from the cottage on your birthday, the day after Memorial Day. Usually we would drive home on Memorial Day and we would go back to work and you kids would go back to school. We got home and there were orange ribbons on all the light poles and trees down our street. We also had sun balloons with blank notecards to write you a letter and release the balloons. Mandi girl was with us so she wrote “Happy Birthday Cole! I miss you so much and I’m sorry I didn’t come and visit. I miss you. I hope you have a good 9th birthday. I’m so happy I met you. Love Mandi.” Lexi wrote, “Dear Cole, I hope you have an amazing 9th bday up there and I’m so so sorry Cole. I heart U 100 Billion (1CB).” Lexi also wrote the Happy Birthday song on the back and then she wrote on another notecard and it said, “This is something words can’t express. I’m so sorry I didn’t wake up earlier to say goodbye. You’re 9 years old now. I’d do anything to have celebrated it with you. Remember Lexi hearts Cole 100 Billion and Lexi will always love Cole 100 Billion. Dad wrote on 3 notecards and I still don’t know how Daddy got 3, but I guess he just had a lot to tell you. On the first one he wrote, “Today was a hard day to spend without you Cole. Your 9th birthday without you feels so wrong. I miss you so very much. Your amazing personality, smile, and heart made me whole. I will always remember every second. I love you Cole.” On another one he wrote, “Cole Happy Birthday! It’s your 9th birthday and I am so incredibly sorry you didn’t get to be here with us in person. We had so many plans for what you wanted and I know you would have loved it.” Cole, I was bawling and could barely write, but I managed to fill the entire notecard with “Dear sweet boy Cole, Happy 9th Birthday. You would be shocked with all the smile sun balloons in the yard. It’s super special, but you deserve nothing but the best because YOU are the most special. Love always Mom.” The next day I filled out another notecard and it said, “Today you are 9yrs old and one day. I’m so proud of you for all the obstacles you overcame and you are the most impressive human that ever walked this earth. You taught me all about perspective and it’s not what happens to you, but how you deal with it. I love you forever and always. Thank you for everything you taught me. I’m a better person because of you. Love Mom.” Daddy wrote another card and it read, “Cole you turned 9 yesterday. The weather was beautiful and warm. I know you would have hated being outside and would have wanted to go inside in the air conditioning. You were always such a good sport with doing things we wanted to do even when it wasn’t your favorite. I miss you so much and my heart will forever have a hole missing. You were one of the best things about me, you were my glue. I love you 1CB.” Your bond with Lexi was completely unreal and I loved that you and her would complete a heart with your hands and sign I heart you 100 billion (1CB). It made my heart so happy to see the bond you and her had. Lexi had the idea that each of us would read what we wrote and release the balloons at the same time. There was not a dry eye there and all of us were bawling. It was the hardest thing for me to do, but I was so grateful for Lexi to think of that idea.
The following Friday Mommy and Daddy dropped Lexi off at aerial silk and went to the store to walk around. It felt so wrong being there without you. Almost every isle I thought of something that you would be picking out. The color orange was everywhere. I don’t know if it’s because we are now more conscious of it or if orange is just the new popular color. We saw chairs, clothes, swimsuits, shoes, everything was orange. I started tearing up when we walked past a huggy wuggy doll. I’ll never forget how bad you wanted the pink and blue huggy wuggy for Christmas. I’m so glad you were persistent on wanting that for Christmas and it makes me even more happy that we spent $200 on those things, even though we were very hesitate and almost decided against it. We’ve slept with them every night in our bed since you’ve been gone. Son, as we walked around I seemed to have noticed every young boy and it made me so sad that you were not with us. I don’t know how long it will bother me to see other young boys or how long it will remind me of you, but I can’t imagine ever feeling different at this point. We even saw a little dress shirt for boys with a tie and I immediately thought about how cute you’d look in that. For a second there, it’s almost like I forgot you were gone and I was going to buy it. While we were walking we saw a game place and for the first time, since you’ve been gone, we saw a huge claw game. I teared up immediately and your Daddy and I talked about how much you loved those games. I’ll never forget on our way to Cincinnati one time we stopped so I could use the restroom. Low and behold, there were claw machines in the entry way of the gas station. I remember being in the stall thinking that maybe when I was done we would bring you in for a minute to play. Well… I get out of the bathroom and see you and Daddy playing every claw game in there. You insisted on playing until you won.
Your Daddy and I are preparing for your celebration of life and we went to St. Andrew’s Golf course to see the venue. It was a large room for 300 plus people with an outdoor area and looked much more like a wedding room than a funeral. This is what we are looking for. Cole, you were one of the most happy kids I’ve ever laid eyes on and you would want a gathering with all your loved ones and you would want it to be a happy time. You didn’t like to see people sick, you didn’t like to see people hurt, and you certainly didn’t like to see people sad. We were discussing the packages with the event coordinator and the entire time I am sobbing on and off while walking around. I just couldn’t keep it together and finally she sits us down at one of the tables and we are discussing food. She looks up asks which one of your parents passed away? I told her it was our 8 year old son, while crying. She couldn’t, at all, keep it together and she was sobbing too. You could totally tell she was trying to keep it in and didn’t want to just completely lose it, but it was taking everything in her. She was no longer worried about how many hours we had the room and told us not to worry about the food minimum. Literally, anything she could do to make this whole process easier is what she was trying to do. Lexi came up and gave me a great big hug. The lady asked Lexi if there was anything she needed and Lexi responded with Cole loved the color orange. The lady immediately started making accommodations to have orange napkins and orange flowers. When we were getting ready to leave she leaned in and just gave me the biggest hug. We both were bawling in each others arms and I, literally, had only known her for less than 30 minutes. We walked out and Daddy and I knew this was the place. It wasn’t about the venue or the food and it wasn’t about the price, but it had everything to do with how this lady just made us feel and we knew without a doubt we picked the right place. I just couldn’t stop crying that day and now everytime I drive past this place I tear up. I’m sure it will be even more difficult after we have your celebration of life there on July 8th.
The first time I took a bath and used a bath bomb I immediately started crying. I have been, intentionally, avoiding bath bombs because I knew it would make me sad and think of you. Son, you had such a love for baths even though water was dangerous for you with the tracheostomy. You would always want a bath and you insisted on having the bath with a bath bomb or two. I remember the first time you asked for your rondo in the bath (years ago) and I was adamant that you couldn’t have it in the bath. Those dang hearing devices were so expensive and not waterproof. However, you insisted on having it just for one minute because you wanted to hear the water running. This about melted my heart and everytime you took a bath and wanted your rondo while the water ran, you got it! I’m so sorry that I would sometimes lock the door when I was taking a bath. It’s one of those things where no one needs to be in the bathroom until Mom wants to either go to the bathroom or take a bath. Then, all of a sudden, the whole family wants to be in the bathroom at the same time. I would do anything to have you sit beside the bath and ask me a million questions or just tell me whatever you wanted to tell me. It breaks my heart now that I missed out on being with you because I thought I needed Mommy time in the bath.
The first time we went to a waterpark without you felt so different. You were not a huge fan of waterparks because you didn’t want to be really hot and you also would never do the slides. Therefore, you were limited to the shallow end of the pool and the kiddie area. Nonetheless, you were happy as long as you were with your family and we would make certain that you were comfortable and we did as much as we could for you to have a great time. So many times we go to places like this, we rent the cabanas because we don’t want you to be too hot and we always wanted you to have shade. It felt so weird for me to sit in the cabana without you while Lexi, Daddy, and Mandi went down the slides. I wanted to lay out, but I ended up going down the slides and on the lazy river because sitting in the cabana without you was just too hard. I would watch every little boy and think how bad I wanted my little boy with me. Cole, it was not common for me to pay much attention to other kids. I was pretty tied up with you and Lexi and really wasn’t looking all around at other kids. It was and has been so different since you’ve been gone. I can’t help but to notice every young boy around your age.
The first time we met baby Frankie, your sister immediately fell in love. She wanted to hold him, snuggle him, and didn’t even want to go to horseback riding lessons because she wanted to be with him. She ended up going to horseback riding and meeting us at St Andrew’s Golf Course where we will be having your celebration of life on July 8th. I struggled just walking around the room and showing Lisa everything. I had to walk out because I was getting emotional and it was only going to get worse. Lexi had the opportunity to stay back and babysit baby Frankie and this was like winning the lottery for her. She loved every second of holding him and pushing him in the stroller. She was singing to him and just seeing her so happy made me happy. When we were driving home, she said she wanted to see baby Frankie more and he reminded her so much of you. I wasn’t sure of the correlation so I asked for her to explain. Lexi felt like she missed you being a tiny baby since you were in the hospital until you were eight months. She also felt like baby Frankie is so little that he will mimic others and you used to mimic everything she did. I wasn’t sure I could see the comparison, but (truthfully) it’s not about me and if Lexi sees something and it helps her I will do whatever it takes to make her feel better about this whole situation.
The first time I saw a red wagon, in fact it seemed like every few steps there was another red wagon, we were at a carnival. I just wanted to curl up on the ground and cry. You loved your red wagon so much and whether you were sitting in it or pulling your animals in it you always used it. The unimaginable void that I have right now is so real. The overwhelming sadness is so intense and it, literally, causes me to struggle with breathing. Daddy and Lexi went on a bunch of rides and after eight or so Daddy’s tummy didn’t feel very good. When we were younger, we were similar to Lexi and could’ve rode roller coasters all day. However, something happens when you get older and it’s not nearly as fun to spin really fast, causing a headache and an upset stomach. Lexi was having fun with all of these and right now we are just trying to distract her with as much fun as we possibly can. As soon as Daddy decided he was done with the rides, she begged for me to join her on these things. I would have rather not, but during these times I’m finding it difficult to tell her no. We go on a handful of rides, just enough to make my stomach feel uneasy from all the spinning. As we are walking to our car, Lexi says she can’t get the bracelet off and it’s too tight. I recommend scissors and almost said we have a pair in your brother’s suction machine. It makes no sense that you’re not with us, either walking around the carnival or being pulled in a wagon.
The first time I packed my suitcase, after you were gone, and threw away all your extra medical supplies such as the trach ties, HMEs, and suction catheters. I, cried the whole time and it actually felt wrong to throw away the extra supplies… Just in case. I know it doesn’t make sense, so much of my life doesn’t make sense right now. After less than one week, after your passing, I posted on the trach Moms site and an IL special needs site all of your medical supplies. I thought for sure, me giving your supplies to other families in need would make me feel good. Cole, the other day when a Dad of a special needs kiddo came to get your feeding pumps and chargers, I cried while giving them to him. He had tears in his eyes and he gave me a big hug. Literally, a complete stranger and we were able to provide something that is so costly and so required for their little guy to get the proper nutrition and I didn’t even feel good about it. Son, for years I have mentored other Mothers and given extra supplies to families that need it. My heart was always so full doing these things and giving back felt amazing. It’s almost like the icing on the cake was always when a family asked how much they owed me for shipping the supplies and I would tell them… Nothing, just pay it forward! Every person that has taken your supplies, since you’ve been gone, has been so hard for me. The day the DME Company came to get your ventilator, suction machine, and oxygen I was bawling. I feel horrible that I haven’t mentored or spoken to another trach Mom or hearing parent of a deaf child, but I just can’t right now. Helping others cope with their living child while mine is not just isn’t something I am capable of… At this time.
The first time I got on a golf cart after you were gone, it took everything in me not to just bawl my eyes out. No matter if we were camping, at the cottage, or when we would rent a golf cart on vacation you wanted to be in it all the time. I remember when you wanted to go with Jay so bad on the golf cart, but you didn’t want your parents with you. Cole, you were so independent and you just wanted to have a good time without being hovered over. Jay was just nervous you might need a suction or some type of medical support and he just wanted you to be safe. We came to the cottage for the week of Father’s Day with the Lee Family and they brought their golf cart. Just seeing the golf cart made me sad and miss you. I’m starting to think it doesn’t matter the situation, the location, or the company I can’t stop thinking about you. I started this blog believing that I could recall all the firsts after losing you and how each one made me feel. Cole, I just miss you so much and every smell reminds me of you and every place I go, I think of you. There is not a time of day I don’t find myself just completely overwhelmed with heartbreak. I have to consciously put a smile on my face to look happy. Your sister’s happiness is something that genuinely makes my heart happy and this last trip to the cottage she spent a good amount of time with Ryker. I know what you’re thinking, that’s not common because she brought Cassidee and she typically plays with Astryd. Well, all of that is true but for whatever reason she really gravitated towards Ryker this time. I kept thinking it’s probably because he’s closer in age to you and he maybe reminds her of you also. They made hot tubs using half barrels, tarps, and carrying hot water in pots from the cottage to outside. I remember when you and her would do this. Almost every summer she would makeshift a hot tub and you and her would team up to ensure the water was warm. I remember always thinking with your help, since you were using a 20oz cup full of hot water instead of a huge pot, this might take a while. Somehow I always got roped into helping you two and ended up carrying the majority of the pots of hot water. She also allowed Ryker to draw a picture and she would try to draw the same picture. I remember you trying to draw exactly what she drew. So much of me wonders if she was doing with Ryker what she wishes she could’ve been doing with you. Nonetheless, it was making her happy and I was thankful she had him this trip.
The last three years we’ve had many of your preoperative xrays and staph screenings completed at urgent care, near our house. You were always such a trooper and knew we were just doing xrays and a swab and you displayed complete braveness. For the first time, Lexi woke up with her eyes stuck shut from mucus. As soon as I saw her, I was pretty confident she had pink eye. Your sister has always been so healthy and never really needed to go to urgent care. I remember when she was nine months old and contracted coup, that’s the first and last time she was at that urgent care for herself. As I’m driving there all I can think about is you. I already can tell by the lump in my throat, it’s going to be difficult when we get there. When we walk in and we’re signing in at the kiosk Lexi mentioned how she remembers the last time we were there with you and she really misses you. I tell her I know and I miss you too. She’s totally right and it was earlier this year, since your lengthening was March. I, immediately, had an overwhelming sadness overcome me and thought about how you should be here. You would be asking me a bunch of questions and ensuring your schedule consisting of just xrays, swabs, and then going to CVS before going home. Most people would assume CVS to pick up a prescription, but you never asked to pick up medicine. You always wanted to go shopping. What, exactly, did you want? Well, you just wanted to peruse the aisles and pick things that you deemed important at the time. Sometimes, it was a toy or water balloons and most times it was stuffed animals. As we walked back to the room at urgent care, the nurse asked if I was Cole’s Mom. I immediately responded with yes. She asked Lexi a bunch of questions and said the doctor will be right in. As soon as she walked out, Lexi asked me if she knew about what happened to Cole? She also said I looked sad. I fought back tears with every ounce of strength I had and simply stated, no and it’s a little difficult for Mommy to talk about right now. Lexi explained that you are a tremendous person and the whole world should know about you. It’s so hard to have this conversation because Son, she is accurate and I know the whole world should know about you. I’ll take it a step further and say the world and everyone who never met you, missed an incredible opportunity. I think about this all the time! It keeps me up at night trying to figure out how to keep your memory alive, how to spread awareness, and how to continue making an impact that you spent the last eight years doing, incredibly well.
After our visit we headed to CVS to pick up an eye antibiotic for Lexi. It’s incredible how many times I had to tell myself 3/26/2012 at the clinic and at CVS. I am so accustomed to telling everyone Doctors, CVS, surgeons, insurance, etc 5/30/14. All of these types of medical facilities require the date of birth along with the name. For eight years it’s been your information and I’ve only gone to wellness visits for Lexi annually where you don’t need the date of birth. When we got to CVS, a pharmacist I’m not very familiar with took care of us. I was so relieved it wasn’t the main pharmacist that I know extremely well and he knows you. I saw the main guy doing something different and his back was turned to us. I, literally, felt myself take a deep breath and sigh of relief that the pharmacist I know so well did not take care of us and didn’t even know we were there. For years that pharmacist has helped with problem solving on different medicines and helping to ensure we had an easy way to administer medicines via gtube versus a pill. As we drove home, I thought to myself and wondered how long will I feel this way? How long will I avoid having the conversation with people that didn’t really know you, but knew of you? How long will I try to avoid people and situations that would require me to relive and tell a story that shatters my heart every second of everyday. When I started this letter to you, Cole I really thought it would be about all the firsts. The things that occurred, for the first time, without you, when you really should be here. I thought it would be something that could help me overcome some of these feelings and help me realize that it’s only going to be the first time and as I do these things more and more, it will become (potentially) more bearable. Well, we have been to the cottage now twice and the second time was just as difficult as the first. We’ve gone shopping numerous times and everytime I have an overwhelming sadness and feeling that I wish you were right there asking for things you didn’t need. As I lay in bed I wish I would hear all the alarms and I had a chance to wake up and take care of you. For the first time, we’ve had to register Lexi for school and, literally, remove you from the system. A task that may seem so minuscule, but I needed your Daddy to help with because it was just too much. The truth is son, it’s not just the firsts. It is the second time, the third time and, literally, every second of everyday.
Last week we went to Hibachi to celebrate Leona’s 9th Birthday. This was hard, but I was fully aware that this would be extremely difficult before I asked Lisa if we could join. Son, I didn’t get to have this conversation with you but it’s a really important one. It’s about friendship and how some friends are the family we choose. Lisa and I are much closer to sisters than just friends. In fact, Mommy has lucked out and has some incredible friends and I’m so grateful for each and everyone of them. Lisa just so happens to be that person that I’ve shared so much with. Including, but not limited to when we had children. Lexi is eight months younger than Layla and Leona is 3 weeks younger than you. In every aspect of my life over the last twenty five years Lisa has been there for me and vise versa. I knew celebrating Leona’s birthday would be tough since singing to her with nine candles on the cake, 3 weeks after we should have celebrated you with nine candles on the cake is just a hard concept. However, it was something I wanted to do because they are truly important to us. They loved you with all their hearts and I know you adored them too.
The first time I opened the flour container in the pantry I started to sob. Son, your love for cooking and baking was so awesome and you would have been just like Daddy, a pro. I’ll never forget when you wanted to start making lunches just like your friends did. I bought you a school bus lunch bag because I couldn’t find the exact Pete The Cat one you requested. Nonetheless, you insisted on bringing a bag of flour. I remember your Daddy and I laughing about the idea of sending our son to school with a bag of white powder and wondering how quickly the cops or DCFS would show up at the door. The truth is son, you loved flour and you even ate it plain. Not in large quantities because you really didn’t eat orally, however, you loved to lick flour and sugar.
The first time setting my alarm on my phone since you passed was the night before I needed to take Grandma Barb for a lumpectomy. Yes, son Grandma has breast cancer and this has been a very difficult last several months to say the least. However, Grandma is a trooper and she’s had an incredibly positive attitude about all of this and I think she’s been too consumed with the loss of her sweet grandbaby, yes you, to be concerned about herself. Nonetheless, she had to be at the hospital at 6am so I set the alarm for 4:45AM. The last alarm was set for 3:15AM because that’s the last time Daddy and I needed to get up for your procedure May 10th. I know this sounds so stupid, but I almost didn’t want to delete it or replace it with the new alarm. The following morning I woke up and picked up Grandma. As I walked through the hospital to get to Grandma’s room, I could feel the lump in my throat and an uneasy feeling in my stomach. Son, I’m only used to going to hospitals for you and I’ve done it for so many years now it only feels right that you’d be here. I remember always thinking how much I wished you didn’t need hospital visits, surgeries, and all the doctor appointments. The truth is son, I would do anything to be planning your next procedure if that meant you would be here with me. You overcame everything so seamlessly and those procedures never had you down, you would bounce back so quickly. This is another little secret, but I did everything to fight back the tears as Grandma went back for her surgery. The hard truth is the last time I watched someone go back to the operating room before Grandma… You never came back. I know it’s such a rarity, but the thought definitely crossed my mind and I had to quickly remind myself that I was being ridiculous.
At the end of the day, you’ve been gone for over two months and I’m sure there will be hundreds more of “The Firsts” without you over the next year or so. I’m trying to focus on being grateful for what I did have and still have. Saturday, July 8th we had your celebration of life and boy do I wish you could have seen in. Everyone wore orange and you would’ve loved that. It makes me wish we had a birthday or party where everyone wore orange when you were still here, but son, I never thought of it and I truly didn’t know that many people would look good in orange. The room was so bright and the tables and chairs were decorated more like a wedding than a funeral. There were hundreds of people there and your Daddy, Lexi, and I felt we represented your incredible personality and love for life the best we could without you actually being there. The video your Father put together is beyond incredible, but everything your Daddy does is pretty dang impressive. We all were able to do our speeches and I was so proud of your sister. There are not many 11 year olds that would have the confidence to speak in front of hundreds of people, but she completely nailed it and knocked it out of the park. The amount of support around us is completely surreal and I find myself in awe at the love that everyone has for you and our family. Son, I am so proud of you for being the brightest light in the room. I am so impressed with your perseverance to overcome every obstacle put in your way. I’m overwhelmed with the accomplishments and milestones you surpassed when all odds were stacked against you. If I could walk in your shoes I would. Since that was not an option, your Daddy, sister, and I will walk for you, forever having you and our memories in our hearts always. I’m grateful for what you gave our family for almost nine years and impact you will forever have on us. YOU completed our family and we will be forever grateful for the perseverance you taught us to have, the advocacy you helped us create that we didn’t even know we had in us, and the true meaning of an incredible life lesson… It’s not what happens to you, but how you deal with it. Love you 100 Billion Cole!
