Without a Crystal Ball

Our Journey through Chronic Illness & Autism

Dear Von,

I am writing you this letter on the eve of a surgery to help you get bigger and stronger. I am writing this letter so I don’t forget why we made this choice. There will be days in the future you will want to know why we this needed to be done. You will wonder why the doctors put a hole in your tummy, and you will tell them you hate things on your tummy. I know it’s not going to be pleasant for the first few months, but I know this feeding tube will help to save your life.

You always have had trouble eating. It wasn’t because you didn’t want to eat, but because your brain and mouth just didn’t quite work together. I still can see the look in your eyes when you see cookies, and I can tell how badly you enjoy putting the sweetness in your mouth. However, the cookie always ends up in a ball on the side of your cheek. You see you just can’t swallow the cookie. It isn’t because you don’t want to eat the cookie, but you can’t figure out how to eat the cookie. We tried really, really hard to help you learn to eat. Every single option was explored. You were given fruit without skins, pureed foods, pediasure, fortified yogurt, and we added butter to everything. We were able to do all right, but then your heart started to deteriorate. The doctors had us go see a special doctor about your heart. He told us that your valves were broken, and that you needed surgery. He told us the most important thing we could do for you was to help you grow big and strong for Open Heart Surgery. Then suddenly you stopped growing.

It was probably a combination of your failing heart, and your bodies inability to swallow that made it next to impossible to get enough nutrients in your body. Over the course of several months, you lost 10% of your body weight. That’s a pretty big chunk when you are still very little. The doctors, daddy and I got really concerned. We knew we couldn’t keep going and that you needed extra help to grow big and strong. We knew going in that you were going to hate the tube. It’s a fight to change your clothes, and a fight to give your daily injection in your tummy so I know this will be a very difficult transition.  However, this decision is made with love. We love you so much that we want you to have all the nourishment you need to grow big and strong. Your heart needs all the extra calories it can get right now because it’s working much harder than the average heart. Your cardiologist told us eating will only get worse and worse as your heart continues to deteriorate. The tube will give us time. Time to get you healthier for surgery, time to have more energy and fun, and time to grow and thrive.

When you ask why we did this, we did this because we loved you so much we wanted to give you every possible chance to get healthy. You have bigger mountains to climb, and you will need several open heart surgeries as you grow. This surgery will be tiny by comparison to when they fix your heart, but this will enable them to fix your heart. We want to have many more memories with you. We want you to grow up, go to school, play with your friends, and enjoy many more birthdays. This tiny surgery is going to give us so much more than you will ever understand. We will have peace of mind knowing you will get the nutrients you need, you will be able to grow on a more consistent curve, and your brain will have all the nutrients it needs to thrive and develop. Even though you were born with several chronic illnesses, you are one of the smartest kids we know. We want to help you reach your full potential, and sometimes that means we have to make really hard decisions for you.

We want you to learn to love to eat. We hope this will bring you a sort of stress relief because we know you hate eating. This is going to help us get to the next step. We hope that when you look back on everything, you will know we did this with love for your future. You deserve a fighting chance, and sometimes that means you have to do things a little differently. This will be a new normal for us, and I promise you it will help us reach your fullest potential.





One thought on “A Letter to my Son before Surgery

  1. Kira McCall says:

    I know this must be hard for you, but it can only get better from here. I will pray that the surgery goes well so that he can eat and grow. Even though it will probably be a challenging transition for him, he will have one less source of stress and frustration. Go, Von, go!


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