I’m a Special Needs Mom, Not a Superhero with Super Powers.

I remember finding out when I was pregnant with our second child and how I hoped for a boy because we already had a perfect girl. I vividly remember finding out the gender and being so excited it was, infact, a boy! It was not hard for us to agree on the perfect name, Cole while we anxiously awaited for his arrival. We became more and more excited after every ultra sound.  I would have never guessed and neither did the Doctors that I saw frequently, at every prenatal appointment, I would have a baby that came out not breathing. I remember giving birth and since it was only a handful of pushes, I was barely tired and completely aware of everything around me. After all, I showed up to the hospital already over 6cm dialated, having zero pain, and no clue I was even in labor. Thank God for my best friend who has become more of my sister, that insisted I go to the hospital because she was certain I was in labor. If you’re ever wondering how to know you have a true best friend, it’s when they know you better than you know yourself. As soon as Cole was born, there was fear, apprehension and everyone was rushing around. They immediately swept Cole away and took him in another room. Mark and I had a child before and it was nothing like this so we automatically became concerned and inquiring about what was happening. Everyone kept telling us not to worry and everything was fine. We knew this couldn’t be the case because it felt so different. The first Doctor came to Mark and I saying Cole had Trisomy 18 and probably wouldn’t make it through the night. The truth is, not breathing was only the first, of many, things Cole would have to overcome. What seemed like every minute, we were delivered more and more congenital anomalies that he was born with. Our little guy was going to the operating room before we even laid eyes on him. I didn’t even get to see what he looked like. For the last eight years and our foreseeable future, Doctors, hospitals, surgeries, artificial airways, feeding tubes, and a mechanical ventilator will be required to keep him alive and as healthy as possible. If I had a dollar for everytime a stranger, family member, or friend told me I was a superhero or God gave him to me because he knew I could handle it… I’d be a millionaire.

I understand, I think, why people say it and it’s not a negative thing. These statements are said because others don’t know what to say. Others may think there’s no way they would be able to handle such medical complications. Perhaps people say these things because they simply don’t know what else to say because my situation is not relatable. The truth is, the reasoning behind why people say such things is less important. The more important thing is, these statements are not true. I didn’t get blessed with a special needs, medically fragile, child because I could handle anything better than the next person. I am not some type of superhero with super natural abilities or powers. I happen to be a Mother who was given no other option, but to figure it out. I, too, would have looked at another’s situation prior to having my son and thought there would be no way I’d be able to do that. In fact, when I was a young girl I babysat a child with cerebral palsy and I remember thinking this exact thing. She was the sweetest girl with the biggest heart. She was wheelchair bound, non verbal, and not able to eat, drink, or use the bathroom independently. I remember feeling sorry for my best friend, her brother, and his family. I remember feeling bad for her and how other kids were cruel when they would say mean things. I grew very close to their family and this young girl had so much to say, just not having the means to say it with words or the ability to make everyone else understand it. I knew when she was upset because her eyebrows would lower, come together while her eyes would glare and she would pucker her lips while she stuck out her tongue. I also knew when she was pleased because she had the most beautiful smile and her deep brown eyes would light up. Back then I would have absolutely said I could never have a child like that, it’s way too difficult. However, I looked at her parents who seemed to do it daily with ease without skipping a beat and never hearing them complain.

The fact is, it can be summed up with one word and that is perspective. You know what you know and that’s it. We can pretend that we have perspective on what others deal with or how others feel, but unless you’ve been in a comparable situation… You really don’t. This is not to say that you can’t have empathy. I truly do believe people can be empathetic towards a situation but this is not the same as perspective. My son has taught me a lot over these eight years and I’m a better person because of him. The perseverance I’ve learned I am capable of, the bond it’s created between my husband and I, and the overall mindset its helped me find and create. This is not to say that if I could take it all back and had total control, I would keep it all the same. I would not, at all! If I had any control of the situation, I would have had a healthy baby boy that didn’t require any special needs or medical equipment to stay alive. I would have chosen a baby that immediately cried after I gave birth because that’s reassurance that everything is ok. I would have had a baby that I immediately got to take home like most Moms do with most babies. I would have chosen a baby that did not have to endure hundreds of surgeries. And I would have chosen a baby that didn’t have to spend the first eight months of their life in the Neonatal Intensive Care Unit at three different hospitals before FINALLY coming home. I would have changed these things, not because my life would be easier, but because his would. I tell people all the time that living a life where you believe, “life is not fair” is a cop out and life is what you make of it. I can promise you neither Cole nor I made this life or body that he was born with and it’s truly not fair that he’s had to go through so much and will continue to throughout his life.

The worst part about all of this extra equipment, medical needs, and abnormalities is how others treat him. Sure, I suppose I could keep him hidden in the house and not expose him to others to stare, make comments, and treat him so horribly but I refuse to isolate him due to other people’s ignorance. The truth is, although my son has so many medical complications, at the end of the day, he’s not any different than any other eight year old boy. He loves remote control cars, dinosaurs, cool shoes, telling jokes, board games, claw arcade games, the color orange and being a typical kid. He begged and begged for a stroller so we bought him a stroller and he pushes his stuffed animals and babies around and takes them to the park helping them down the slide. He wants to be a comedian with a mustache when he grows up and recently when he found out he was going to be the ring bearer for his cousins wedding, he was devastated. For a minute there, he thought we had changed his life dream of being a comedian and he was stuck being a ring bearer… The rest of his life! He’s got a great sense of humor, he is compassionate, loves people, pets, pleasing others, joking around with his Grandpa, and being social. He doesn’t know any different than to have a tracheostomy, a gtube, one poorly  functioning kidney, rods in his back, balance issues, dexterity limitations, low stamina, and being deaf with a cochlear implant. To Cole this is normal and he’s never been without these things. What will start giving him a complex and making him feel bad about himself are the people around him. We, literally, can’t go anywhere without people staring awkwardly and asking “what’s wrong with him?” “What happened to him?” “Why is he so creepy?” Is that a real face? I could write an entire blog just on the comments my family has recieved from others pertaining to how Cole looks. If I was truly a superhero as so many have referred to me as, I’d make all of these people adults and kids alike disappear. This is how you know for sure I’m certainly not a superhero with any super powers. It’s incredible that we can’t go to a restaurant, playground, or even the grocery store without stares and comments. I will admit, my ten year old daughter is much more mature than me and for years she has taken these opportunities to educate others. Often times when we travel (which we travel a ton as a family) Lexi will meet young kids and they immediately ask her what happened to her brother. She explains that Cole cannot breath through his nose and mouth like we do so he has an artificial airway, called a tracheostomy, that helps him breath. She explains that Cole is profound deaf and he is non verbal so he communicates via ASL with his hands. The thing on his head is a cochlear implant, a device that allows him to hear. She explains that he doesn’t have great balance and walks different because he has scoliosis and his spine was curved 90 degrees prior to getting rods in his back. She also has to explain that although Cole looks like a toddler, he’s actually eight years old, signs fluently in ASL, and understands most things. Her heart breaks when other children are mean towards Cole because she loves him so much and all she sees is her adorable and normal little brother.

We recently learned that Cole needed glasses and to Mark and I this was nothing. It wasn’t until we got to Lens Crafters and Lexi started to act extremely upset that we realized this was a big deal for her. I was so confused and pulled Lexi aside to talk to her because I, seriously, couldn’t believe how upset she was over a pair of glasses. In my mind, with all of the medical complexities and extra apparatuses he has, glasses was honestly the least of his concerns. Lexi was, literally, sobbing and said he is perfect the way he is, he doesn’t need to be fixed. I’ve said this for a very long time, but Lexi is an old soul and wise beyond her years. It took me a minute, but it eventually clicked and I understood. Cole has looked like he has with all the extra accessories for her entire life. Glasses were new and an adjustment was going to need to be made, for Lexi and Cole. He was totally cool with the idea and really wanted a pink pair like his friend Emily. He settled for the blue, which Mom wanted and I told him that after a couple weeks if he really still wanted pink, we would buy them. With so many things in life, Cole is always the cool, calm, and collective person. Whether it be surgeries, procedures, new diagnoses, or hospital stays all of us have our ups and downs except Cole. He almost always smiles, laughs, and has such a consistent positive attitude and outlook.

The real superhero is Cole. What he has been through and continues to persevere through is absolutely astonishing. What’s even more impressive is his positive attitude and his sense of humor. When his Grandpa is ready to go home, he will take one shoe, lock it in a bedroom, and ask his Grandpa where his shoes are. This is just one of the many pranks he plays on his Grandpa. He forgives easily and loves unconditionally. His compassion for others is second to none and his love for his family is endless. When I truly attempt to dissect how we’ve overcome all of these obstacles as a family, it becomes very clear to me that together we’ve developed the right mindset. The only limits we truly have are self imposed and if Cole can overcome what he has since the day he was born so can we. Perseverance is what separates success from failures. This is not to say I haven’t had my share of doubts and sometimes I find myself trying to have a pity party. I believe doubt is a natural part of the process. It’s ok to doubt yourself, it’s ok to doubt Doctors, it’s ok to doubt the process, but it’s never ok to sell yourself short. Cole, my true superhero, has taught me the best life lesson I could have ever learned. No matter how hard it is, figure out a way to keep going with a smile on your face. These complex medical needs have forced us to come up with innovative solutions for extremely complex problems.  The opportunity to complain over our circumstances have definitely been present over the last eight years. However, we’ve chosen to persevere into problem solving. I’ll never forget in the Neonatal Intensive Care Unit in Cincinnati when Cole was on dialysis. He was put on dialysis because all of his organs began failing while we were in the hospital in Chicago due to contracting sepsis. One evening, like most evenings, Mark and I were discussing our situations and what we could do. This is when Mark brought up the idea of taking Cole off dialysis. It sounded wild and crazy, but Mark is one of the most impressive problem solvers I have ever met and tends to come up with some of the best ideas. Every morning we had a bedside round, where more than ten medical professionals stood outside Cole’s room to review his care. These rounds included information pertinent to specific roles, medicines being administered, and care tasks to create daily goals. Mark chimed in and posed a question. “What if we tried to take Cole off dialysis?” The nephrologist, without even a second thought, immediately shot the idea down. He explained to us that once a child goes on dialysis they stay on dialysis until they reach 9kgs to become eligible for a kidney transplant. Cole was 1.8kgs at the time and another 18kgs seemed almost out of reach and an eternity away. Mark and I discussed after the rounds and determined we still thought this was a good game plan. There are some negative aspects to a teaching hospital and the constant rotation of Doctors. The rotations can also be a huge upside and for our family it was exactly that in this particular instance. The following morning we had a new nephrologist and Mark pulled him aside (prior to the rounds with everyone else) and discussed the idea of taking Cole off dialysis and seeing if his kidney could do what it’s supposed to do without support. The Doctor seemed skeptical, but also agreed that Cole was in the right place and if it didn’t work, we would simply put him right back on dialysis. Cole has been off dialysis since that day. I have hundreds of examples of similar situations where we’ve properly advocated for our son. I also have more examples than I’d like to admit where we agreed to allow procedures, based on Doctor recommendations, and if we could take it back we probably would. Over the last eight years we’ve been constantly pushed, emotionally drained, concerned if we made the right decisions, all while being astonished with what our miracle son has overcome. At the end of the day, we will continue to find the motivation and will power, not super powers, to continue being the best Mommy and Daddy (not superhero) we can be for our son, Cole.