This is a letter I’ve been meaning to write for years, I just couldn’t muster the courage. What does a young mother say to her young son when she knows she will die long before she should? What does anyone say to comfort you? I wonder what questions you have, I wonder what fears you’re hiding, I wonder what demons you’re facing. Sometimes we talk about these things and as you get older the conversations get progressively deeper. Your sense of life and death isn’t that of an adult, but it is far advanced over others your age. Hell, maybe it is that of an adult and beyond some. I have never lied to you. I will never lie to you. I may leave out details that I’m confident would only make you worry when I have things under control, but I will never sugar coat this for you.
The day you were born my whole life changed,19 years being a giant pain in the ass, doing what I wanted to do, not taking the greatest care of myself, not listening to those who were wiser than me… it all changed. I had the greatest gift set in my hands and I had no idea what to do with you. I was terrified I would hurt you, not on purpose, but because you were so small and fragile. I was terrified I wasn’t going to know what to do to teach you, to raise you. I didn’t know how to be a mom, hell… I didn’t even know how to be an adult yet.
They placed your long skinny body in my arms, your skin all red, your face all pinched, your head in the shape of a cone, and my life was over. Or rather, my life had just begun. During my pregnancy, medications I have snubbed off and on for years were done with the upmost of care, plus all the extra they told me to do to help you grow. I was terrified to hurt you before I even met you. I grew you inside of me and kept you close and warm. I read you books and tickled your feet when they slide across the surface of my stomach. It looked like an alien was trying to escape through my belly.
You were born and you were mine. My greatest achievement in my whole life. However, I couldn’t curb the guilt. I was five years older than the impending doom that was supposed to take me, I never was scared to die before. I was told I wouldn’t live past 14. The moment I looked into your beautiful face, I felt like the worst mom in the world. What child deserves to grow up without his mother? What child deserves to grow up knowing all along his mother might die, just not when. Mortality has always been a front and center topic in our house and you have always had the main seat to listen. To hide our reality from you was not the mother I wanted to be.
I needed you to know what happens to someone with Cystic Fibrosis. I needed you to understand where I went for weeks at a time without you. It started very simple, “Mommy is sick, I need to go to the place where they make me all better! All the doctors and the nurses, they will fix mommy and then we can get back to fun things together.” I was hospitalized three or four times a year your whole life, for 10-14 days at a time and often even longer. Do you know how much a baby changes in a couple of weeks time? Do you know the words I missed, the laughs I missed because I had to be away? Not once did I want to leave you, leaving you was a part of an eventual goal to get new lungs, part of an overall goal to live longer.
Remember the good days? The days swimming in the pool in Florida. The days walking around and getting ice cream and riding the trolly. Remember playing soccer and basketball and going to run at the park? When you were younger, we did have many good days. I tried to hide the bad ones as best I could. I tried to find you great friends that could take you and watch you so I could rest and recuperate while knowing you were being well cared for and loved by others. But we both know it wasn’t the same. I wanted you with me always, I wanted to feel good always so we could do all the things we loved doing. Going to the ocean, go-carting, hiking, Disney world, bowling, arcades. Many days were good, but many days… you got yourself cereal and sat on the couch watching tv all day while I slept. While I felt like a horrible mother.
I’ve always hated letting you down. I’ve hated missing your school shows because I’m in the hospital. I’ve hated that I was in the hospital on so many of your birthdays and holidays. On the days I don’t feel well I may not treat you as you deserve to be treated. Sometimes I don’t have the energy to listen to your Dr. Who battle fight scenes. Sometimes I don’t have the mental energy to ask you all the questions I want to know about your day. Somedays I just want to sleep and any interaction at all is tough.
I have not been perfect with you, Jobe. I have been so far from the perfect mom that it kills me. I want you to know, that I’ll never stop trying to be the mother you need. The mother you deserve. I will always tell you what’s going on because you are the most important person in the world to me. You, over all else, deserve to know my truths. However hard they are for you to hear. However hard they are for me to tell. You are strong. You have a strength and grace inside you that is rarely seen in a child so young. You are intelligent and articulate, you’re compassionate and kind. You want to help others, you don’t care if you know them, you don’t care if you like them, you don’t care if they have more than you… you want to help. You are turning into such an amazing young man and you will keep getting better.
Jobe, I won’t live forever. We both know how real that is. My job is to teach you, to guide you, to help you understand the world, and make you a good person. You are wise beyond your years, so I would say you’re an easy student to teach. You’re more intelligent than I am - if you would just apply yourself a little more in school, haha - You have the potential to be whatever you want to be. However you cannot just be what you want, you have to work your ass off to become what you want. My life has been void of many goals and aspirations for a long time. My two have been taking care of you and taking care of myself. Sometimes even those I can’t accomplish. However, you can dream and do. Whatever you love, figure it out, work hard, and make it happen. As Walt Disney says, “When you believe in a thing, believe in it all the way, implicitly and unquestionable.” Walt took a crazy dream of wanting to build a fantasy land and he made it happen. Remember our other iconic men, “we cannot fix a problem using the same thinking we used to create it.” Jobe, you are unbelievably creative, you are incredibly intelligent. I know you can make this world a better place, you just have to decide what you want this place to be.
If something happens to me, you will be taken care of. I have talked to many, many people who would want you if your dad couldn’t take you for some reason. Grammy and Grampy being the first ones. You would stay with them and help them as they age and they would need you as much as you need them. I don’t want to scare you, I want to be alive a long time, but to not plan is not very smart. We can talk about your plan, what you want, who you want. It is only fair for you to help make some of these decisions. Just know how loved you are, how wanted you are.
Life is so short, we don’t know what comes after here… I can tell you I’m pretty sure it’s not a man in a cloud, but maybe our consciousness is born again into a tree, or a cat. I think it’d be pretty dope to be a cat. One thing is for certain, there is no where I want to be more than with you. If someone tells you I’ve gone to a better place, you smile and say thank-you. However, deep down, you KNOW there is no better place than when I’m right beside you. I would never chose to leave you for anything. That’s why I’m fighting my ass off to stay alive to be here with you.
These hospitalizations, these surgeries, these long days away from you. They are temporary, they are done with a goal to come home to you and be the best family we can be together. You are my world. My WHOLE world, I don’t care if I have a boyfriend, or I spend lots of time with Tommy or Alexis, YOU are the reason I fight. You give me the strength I need to get up everyday and fight some more. I will never stop fighting, but there may come a point my willpower cannot overcome my body. My body will stop and my fight will be done. I don’t anticipate that happening for a very long time, but when it does. I need you to recognize that I am always with you in spirit. All the memories we’ve made, all the laughs we’ve had, all the trips we’ve gone on, all the Eminem we’ve rapped, all the talks and tears and hugs. Those keep me with you. I want you to go on in your life and to soar. I want you to go be the biggest, baddest, happiest man there is. I want you to treat people around you with the upmost respect even if they don’t treat you that way. I want you to open doors for people, and to bring flowers to girls on your first date. I want you to make people laugh and smile, because you’re so good at it. I want you to live your life to the fullest. I want to live on through you, through your happiness, through your achievements, through your pain, through your anger. I want you to feel all of your emotions and deal with them in a healthy way. Write your pains, scream into your pillow, cry your tears, make jokes about everything. Not much can’t be cured with a good joke.
You’re my son Jobe. My one and only son. I’m not going to lie to you, you have the potential to go two ways. You can be positive and happy and understanding if I die, or you can be bitter and angry and say why me. Don’t set yourself up for a life of negativity, it’s not what I want. I want you to find a partner to love. I want you to have so many friends that you can enjoy spending time with. You cannot dwell on what could have been. We will have our time together and even if it’s not as long as either of us want, it will be ours. No one can ever take our memories and our love. I wish I had the ability to hand you everything you want in life, but that’s not how life works and even if I could - you wouldn’t learn anything. You need to work hard, you need to use your big brain to sift through the emotions in your mind to understand them. You need to tell our story to help others. Maybe there are other kids who lost their parents, maybe there are other parents who lost their kids. You have the potential to make the world a better place. You don’t need me around to do that, you can do that on your own. And know, I am so proud of you.
Make choices that make me proud, be a man that the world deserves. Be a child a mom is over the moon about, you already are. But never stop being that person.
I love you, buddy. More than a few words could ever express.