Dear Lexi,
You are the most compassionate, loving, and selfless person I have ever met. I think about when you were only two years old and your baby brother was born. Cole was sick and fighting so hard to stay alive and it’s impossible for you to have had the mental capacity to understand everything going on, heck Mommy and Daddy didn’t even fully understand. However, Lexi the patience you displayed during everyone of those 5 1/2 hour one way car rides two times per week to Cincinnati was unreal. Not one time, not once, did you complain about being in the car, not once did you complain about the long car rides or being in a hospital. It’s almost like somehow you knew this was such a difficult time for our family and you wanted to do everything possible to make it better. Lexi, you loved nursery ryhmes when you were two years old and your favorite was Humpty Dumpty. I’ll never forget buying you a CD so we could play nursery ryhmes in the car to and from Cincinnati. The truth is sweetie, there were many times, especially when needing to leave Daddy and Cole in a hospital 332 miles away that I was very sad. The only thing I wanted to do was cry because I had no control over the situation and I hated our family being apart knowing my baby boy was in the hospital fighting so hard to live. I never wanted you to see me crying because I didn’t want to make you sad. I remember the first time I attempted to use the nursery ryhmes CD. We had just left Cincinnati, it was a Sunday and I had work the following morning. Cole was without a tracheostomy because it was a week or so after his slide tracheoplasty surgery, which was supposed to widen his airway and allow him to breathe without the tracheostomy. This wasn’t going as well as we had hoped and Cole had been re-intubated a couple times already and it was scary and hard on Mommy and Daddy, but mostly Cole. I barely made it to the car to get you strapped in your carseat and as soon as I got in the drivers seat, I felt the tears uncontrollably streaming down my face. I immediately put the CD in and expected you to just sing along and eventually fall asleep while we took our five plus hour drive home. Well, little did I know, that was not going to be the way this all went down. As soon as the music started, you immediately said Mommy, “I don’t want to listen to this.” I was completely shocked and (fighting back tears) told you these were your favorite songs. You informed me they were your favorite songs, but only if you and Mommy were singing them together. I immediately turned the CD off and sang with you. I can tell you this, it doesn’t matter how sad you are, crying while signing Humpty Dumpty is almost impossible. We missed Daddy and Cole every second we were away and I remember all the snuggling you and I did all the time and you were so strong and I’m confident you were born first to help Mommy and Daddy through all of this. You wanted so badly to hold your baby brother and be with him. You begged regularly to take him home. From the moment he was born you made it your job, your goal, and your purpose to protect him.
I will never forget when he was in the NICU and the Doctors were making their rounds so a large group of them were standing by Cole’s bedside. At 2yrs old you just pushed right through and past them to get to your baby brother. Others may have been reserved with all those grownups, shy with all those people, or embarrassed. Not YOU, you had your mind set on one thing and one thing only… Cole! I think about the day we brought him home after spending 245 days in the hospital. You spent every second of everyday you could with him. I think about every milestone Cole ever achieved and his biggest advocate, supporter, and by far biggest fan… Not just Mommy and Daddy, but YOU Lexi. Since you were a little girl, you’ve asked me why do you love me Mommy? I’ve given every answer my mind could possibly think of over the years and they are all true. I know you would always respond with, you’re just saying these things because I’m your daughter. Lexi, Mommy and Daddy are so proud of you! I, seriosuly, do not believe Cole could have had a better sister, a more supportive sister, a more inclusive sister, or a better teacher than you! You treated Cole as if he had zero medical complications and as if he could achieve anything anyone else could, if not more than others. I think about the first time he ate via mouth when he was only 100% gtube fed, that was with you when he had creme brulee for the first time at a restaurant. You were so proud of him and you immediately told your Dad and I. I remember being so nervous and telling you, sweetie he can’t eat with his mouth. You were so confident when you responded, well he must be able to because he already did and… Look at face, he liked it!! Cole had no limits with you and the limits that he may have believed he had, you pushed him past those. I’ll never forget when he needed to scoot to a couch, chair, or table to help him stand and all of us would encourage and help him to stand using his own body or the floor. You would cheer for him so loud and the excitement you showed him was all he needed to continue trying and eventually he did it. As a family we cheered so loud and he was so proud of himself. I’ll never forget the stairs. You are so smart and you knew that if Mommy was there while you were trying to get Cole to go downstairs without holding on, I would have been too nervous or given him too much support. You were so excited one day and screaming for me to come see. You said, Mom Cole can do stairs without holding on to the rail. I immediately said no sweetheart that’s not a good idea. You quickly showed me a video on my phone that you had just recorded him doing it. Look Mom he already did it. Cole trusted you, looked up to you, and knew you were and will always be his best friend. Lexi, we are so proud of you and it’s not just because you’re our daughter, it’s because of the person you’ve become and the actions that you display, the unconditional love that you provide, and the awareness you’ve created. I think about each and everyone of our vacations and how the minute someone met Cole, they were curious. You were so matter of fact and you taught me so much. I would listen to you tell other children. That’s my brother Cole and that is a tracheostomy and just like you and I breathe with our nose and mouth, he doesn’t so he breathes out of that tube. The thing on his head is a rondo and helps him hear, he doesn’t speak but he knows sign language really well. He’s just like us and loves to play, here let me show you. Cole would have never met half the people he met without you. I was not nearly as good at creating awareness because I would get frustrated and sad by people staring or making comments. I became defensive or removed Cole (strategically) from the situation. While you addressed these situations in the most mature way. Creating awareness and relatability. Helping other children see that he was just like them.
I’ll always remember your sweet friends that included him in everything. Cole, admired you and wanted to do everything his big sister did. The minute you came home from school with your friends, he wanted to play with you and your friends. You were so good with him and ensured that he was included in everything. Making slime, aerial silk, making Likee videos, drawing pictures, playing Roblox, playing board games, outside water fun, etc. It didn’t matter what you were doing, you let him do it too. Your compassion is second to none and you did things Mom and Dad didn’t even do. It became very common for Cole to have procedures and surgeries and we were so caught up in making the trips to Cincinnati, getting there on time, and ensuring we never had to stay overnight at the hospital, we sort of lost track of balloons, cards, etc. You would make Cole so many gifts and pictures and make sure he had balloons for when he returned home. Lexi, you’re extra special because you are less concerned about your happiness and more concerned about others. You displayed this time and time with your brother. As I think about you and how young you were when Cole was born, I’m even more amazed at your emotional intelligence. When Cole came home from the hospital, he had tons of people everyday coming to see him. He had nurses, day and night. He had a different therapist for occupational therapy, physical therapy, developmental therapy for hearing, speech therapy, behavioral therapy, etc. Literally, our house had a revolving door and all of these guests were coming for your brother, not you. I always worried that you would maybe feel left out or feel animosity towards the attention your brother required. This was never the case and you were the complete opposite. At such a young age you became an advocate and your endless support and love for your brother is so much the reason he was living his best life and overcame so much.
In Preschool you had a Doctor outfit and you would take Cole’s temperature, check his oxygen level, and his heartbeat. The best part was you didn’t just use the plastic apparatus that came with the costume. You used the real equipment because we needed it for Cole. You learned at a very young age how to bag your brother, in case he needed resuscitation. The truth is, Mommy and Daddy were always there in a real medical emergency which happened more often than we ever would have liked. However, you wanted to be involved and know how to do things. You learned how to suction your brother at a very young age, but that wasn’t you favorite thing and you only knew in case of an emergency. So many times you would help keep Cole distracted or encourage him while I would change his trach ties or change his trach. You were such a great advocate and encouraged his growth, but also knew the true dangers and always protected him. Cole loved bubble baths with bath bombs so much, but almost always insisted on doing this with his big sister. You were such a trooper, there were so many times you didn’t want to but you jumped in the bath just for him. You would scream for me immediately when he would get a little brave and try to put his head back in the water. You knew that one wrong move of his tracheostomy getting water and he would immediately drown. You protected him so much, but also let him live life to the fullest and try every and anything that was not life threatening. Well… Doing drops on aerial silk seemed life threatening for me to watch, but he loved doing this with you and you were always there to catch him if he was going to fall. His entire (almost nine years) one thing is certain his admiration for you and your admiration for him.
In first grade your teacher was so proud of you for teaching all the kids ASL on a field trip. I didn’t have the guts to tell her at that time that you had all the kids signing your Mom poops on the table. I only knew that because I went to pick you up at school and one of your friends immediately came to me and signed that. I remember being so proud that kids were signing, even if it was about poop. I’ll never forget the first time I cried about a school project you did when you were eight years old. The kids had a writing assignment about what’s the most important part of your body. All the kids chose things that help them. For example, legs so they can walk, mouth so they can eat, brain so they can think, etc. You chose your hands because that’s how you communicate with your baby brother. I was so touched by this and this was so true. Every friend that came to the house got a crash course on Cole’s medical needs to ensure that kids were more comfortable and saw him for what he truly was, just a boy. A really cool boy with a great personality, big heart, and hilarious prankster. You would ensure that your friends knew ASL so Cole could communicate with them. You would ensure that everyone included Cole so he never felt left out. I’ll never forgot how upset you were when you, Dad, and I went to Great America without Cole. The truth is Cole had been to Six Flags with us before and it just wasn’t his thing. He wasn’t able to go on most rides and he hated the heat and sun. He would prefer, much more, to stay home with Grandma and Grandpa and pick on Grandpa. Taking Grandpa’s handkerchief and throwing it in the garbage. It was funny how back in the day the older generation had a handkerchief they would blow their nose and put it back in their pocket for next time they needed it. Well, Cole thought this was absolutely disgusting and he would throw Grandpa’s in the garbage. He also would think it was quite hysterical when Grandpa would take it out of the garbage and put it back in his pocket. Cole loved to take Grandpa’s sock off, only because it would aggravate Grandpa. He also enjoyed banging on a pot with a spoon to make loud noises when Grandpa would fall asleep on the couch. One of Cole’s favorite games was to pickpocket Grandpa and throw his wallet in your room, lock the door, and close it. He would then ask Grandpa where his wallet was and walk around behind Grandpa while he would look for it. When it was time for Grandma and Grandpa to go home, he would take one of Grandpa’s shoes and hide it. Nonetheless, you were so upset because you didn’t want your brother to miss out on family time and having fun at Six Flags. You wanted him to be included in everything and not miss a thing.
Everyone grieves differently and there is no wrong or right way or exact science on the proper steps. Your grief started with disbelief, immediately became anger, and most recently denial. You shared a dream with me a couple weeks ago where you were very upset about Cole passing away and I assured you we’d had this conversation numerous times, he wasn’t dead, and I took you to the hospital and there he was. Lexi, there’s nothing more that I wish for Cole to simply be at a hospital right now, but sadly that is not the reality. The reality is we can control only what we can control and I need to share the most important thing with you. Lexi, Mommy and Daddy couldn’t have asked for a better big sister for Cole. We could not have asked for a better daughter for ourselves. He was unbelievably lucky to have you for almost nine years and you made him and us better people. I don’t have answers for how to not be sad because I can’t help but cry all the time and I feel such an intrical part of me is missing. It’s ok to be sad because we love him and miss him tremendously. What I can tell you is this, not a day should go by that you don’t realize what you have done and how you made your brother feel. I know what you’re thinking, you’re sad thinking of times when you weren’t always nice to him. Sweetheart, those were necessary sibling rivalries that help with growth, problem solving, and life skills. Please do not be sad about those times, your brother purposely messed with you to get a reaction. We can laugh at those times remembering what a little comedian he was. You would bend over and he would make a farting sound. You would be on the aerial silk and flip over and he would make those sounds. Your reaction would make it so he wanted to do it a hundred more times. Sure, eventually you would get mad at him, but that’s so typical and nothing to regret. What’s not typical is your compassion, your inclusivity, your advocacy, and your unconditional love. Those are the things I want you to cherish and foster for the rest of your life. I’ll never forget when we had to make an impromptu 24hr trip to New Orleans to get a same day passport for Cole. We were heading to Mexico that week and realized Cole’s passport would have expired while we were in Mexico. Meanwhile, the three of us get on a plane and Cole completely started freaking out. He thought Mom and Dad forgot you for our trip. No way was he going to allow that, afterall you were the most important person in his life! It was a tough time explaining to him in ASL that we were just going to get a passport, we had to fly to get there, and we’d be getting Lexi for our Mexico trip as soon as possible. It’s imperatively important for you to understand that your brother achieved so much because of you. As a result of your advocacy, your patience, and your desire to see him overcome all odds stacked against him. Lexi, you became his advocate and protector at the age of two, after he was born, and I promise you that is not typical behavior for a two year old. You are so special! You are so beautiful inside and out and I am so proud of the young woman you have become. Lexi, you have forever asked me why I love you and although I’ve answered this a million times and everything I’ve said was true. After losing your brother, I now (unfortunately) know what it feels like and I know more than ever why and how much I love you. Sweetheart, it’s very easy to love your children and you’re right most people just do because it’s their kids. Here’s what I can tell you now, that I was unable to before. When you lose a child, you actually understand that love even greater than before. I, myself, didn’t even realize how much I loved you before I just knew I did. Lexi, you’re my purpose in life and there are no decisions I make that don’t have you on the forefront of everyone of them. I’m so amazed at how strong you have been throughout this entire journey from the day your brother was born to now, months after he has passed away. How you maneuver through lifes challenges, how you problem solve, and how you’re capable of seeing others pain and purposely creating ways to relieve it. These are all things that make me so proud of you and I know that someday you will exert all of your energies on something great that makes such a huge difference in this world. Don’t ever forget your worth! Don’t ever forget your impact! Don’t ever forget you are single-handedly the most important person in this world to your Mommy and Daddy! Don’t ever forget what and how you helped your baby brother! Most importantly, don’t ever forget the best is yet to come for you and you have so much more to give! I love you one hundred billion! Forever and Always, Mommy