Ways Forward

7A at 7

Yesterday we made our semi-weekly journey to Dartmouth for Thing1’s endoscopy. It’s 4 days before launch day, and, at 9:45 AM yesterday, lift-off for college was anything but guaranteed.

I walked him into the pre-procedure room in the endoscopy unit and waited while he got changed and settled on his gurney. When they came to start the anesthesia, I kissed him goodnight and went to wander through the hospital, a restaurant pager in my pocket to let me know when they were done.

I went back less than an hour later. The doctor was already in the waiting room looking for me. The look on her face was as telling as the pictures of T1’s colon that she had printed. That was all the proof that the last eight months of injections and diet management, pills and fighting with the insurance company had done little to put the brakes on the progression of his disease.

We talked about the next steps – a new drug that might work or not over the next four weeks as we work to get him healthy enough for the surgical nuclear option. T1, the Big Guy, and I had already discussed the very real likelihood that T1 will be withdrawing from college in January, but, as the doctor talked, I realized that trying to start in 4 days was risky at best.

The doctor had to go to another colonoscopy but said she would meet with us in recovery in an hour. I went into the little corridor between the waiting room and the endoscopy unit and stopped to lean against the wall and cry. Even if his academic future had not been thrown further up in the air, the images of blackened tissue would have made me sob, and there was no way I was going to do it in front of him.

I wiped my face and slapped my cheeks to reset my expression. Then I went into sit with T1 as he woke up. When he asked the results, I was honest. He has been going through this for too long for us to insult his intelligence by sugar-coating bad news.

After another uncomfortable conversation with the doctor, however, it became clear that T1 had already done the mental calculus to try to manage the next drug failure long enough to get through the first semester. He was still planning for lift-off on Friday.

My stomach clenched as I imagined him driving himself 2 hours to the hospital with his uncontrolled flareup or more anemia. I knew I could use the maternal bully pulpit to push him into what I see as the ‘right’ decision, to delay his enrollment for a year and get healthy enough to have and recover from surgery. I also knew that where a year’s delay for a 50-year-old is a few minutes, it can seem like a lifetime in a life over which an 18-year-old is just starting to take control.

He officially became an adult two weeks ago last Sunday. The decision to have life-altering surgery, the decisions about which drugs he’ll try next, even the decision about how to start the first phase of his adult life are now ultimately his. We can advise him, give him our opinions, but we can’t make those decisions for him.

It’s three days till launch day. We’re still trying to make sure he has all the information he needs. I haven’t stopped advocating for the safe option. The Big Guy, of course, has his own opinion about the situation and will certainly weigh in. I am starting to understand, however, that accepting his disease is acknowledging that not only do we have little control over it, but we have to start ceding control over how T1 will respond to it or any other part of his life.

Acceptance isn’t the same thing as surrender, and it isn’t always accompanied by hope. It is a way forward, and no matter where he is going, we will have to begin that journey by starting to let go.

3 thoughts on “Ways Forward”

  1. Your painting is a powerful illustration for your words. The dark green hills are beautiful, but you can feel the storm. The road is wide but disappears ahead. Speed up? Slow down? Will the trees shelter? Or overwhelm?
    One day at a time.


    1. Dearest Rachel, I was just reading Jon’s blog and all the wonderful and I am sure well-deserved accolades he bestowed upon you. You are an amazing lady! I am SO sorry to hear about the situation with Mac. Dealing with the “healthcare” system (really disease management in my book) and I feel very bad for you. I love your family and having you at our wedding two years ago with Ethan’s serving skills—everyone loved him!
      I have tried to call Chris at Citgo but they won’t take calls from foreign phones.
      I have a connection with some incredible people in Wales who make goats milk products including kefir which is one of THE most beneficial things you can do for your digestive system. I would be more than happy to get in touch with them and ask about the colitis, as I know the husband suffered from this. Personally I doubt your final answer has anything to do with chemicals (drugs). I have healed myself from chronic lymphocytic leukemia using all alternative methods that only make and keep me healthy. Drugs can never do this! I hope I can be of help….I will give you my best. Love to all of you, and BIG hugs all around!!
      Cynthia XXXXX


      1. Hi Cynthia, thank you for your beautiful thoughts. We miss you very much and think of you every time we drive by your old house. We’ve got a game plan going for the next 12 months, and hopefully he’ll be well after that. Hope all is well with you two.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s