Saturday, November 12, 2011

Sensing his struggle through mine.

The past few weeks contain the most surreal moments of my life. I recently underwent surgery for breast cancer, having a bilateral mastectomy with reconstruction. That means I’ll have a new chest in about a year, but they got the process started by implanting tissue expanders. It has been a slow recovery made stressful by the fact that my 6-year-old son Ethan (with autism) has been coming undone with the change in his routine. I’ve been unable to be in the driver’s seat and he’s used to me running the show. My husband travels for a living and was able to take some time off, but the endlessly revolving door of family and friends has really turned things upside down for our son. He has responded with a dramatic increase in number and intensity of meltdowns. He has been aggressive, which just keeps me further away as none of us can afford for me to have a setback. This week I think I turned a corner; I’ve been using my arms more and have been gradually more involved in his care and everyone has noticed a similarly gradual decrease in Ethan’s behaviors and anxiety. 

There have been many illuminating moments during this process, but the one that has the most meaning is the time I spent in post anesthesia recovery. I’ve been through this process with Ethan several times and it’s almost always very stressful. Fortunately for everyone involved, the hospital we use has flagged him in the system as a child who needs extra hands on deck during this time. Now that I’ve been through that experience, I can better relate to what it must be like for Ethan. 

 I remember opening my eyes momentarily before asking the nurse to cover them. The light was so intensely bright that it actually hurt. I was incredibly nauseated but had great difficulty telling my nurse since the breathing tube made my throat too sore to speak. I remember whispering it to her with the hopes that she heard. A few minutes later she asked me if I was still nauseated and since I was, she told me she’d increase the anti-nausea meds. I have never been thirstier in my life! I whispered this to her several times and all I could get out of it was the occasional ice-chip. Apparently I was too nauseated to be trusted with a drink of water and the ice-chips didn’t do the trick. I could hear a woman nearby moaning and saying repeatedly “I feel awful!” which really irritated me because I was busy trying to meditate myself out of my thirst. It truly was a very difficult time and all I could think about was getting to my room, seeing my family, and getting a tall glass of water.

I had the ability to reason my way through that experience and talk myself through the tougher moments. Ethan does not. I was able to communicate my discomfort to the nurse and have my needs met; Ethan is not. The experience really opened my eyes to what he has gone through countless times in his short life. He has a fairly big surgery coming up after Christmas and this time I hope to be there with more clarity and purpose than ever before. 


  1. What an incredibly stressful time for you and your family. What powerful insights you took with you from the experience! I wish you rapid healing.

  2. Though my son with Aspergers can verbalize many things he shuts down like this a lot and won't say what he wants or what is wrong so in some small way I have some semblance of what you go through. I hope your health returns and you are able to focus on your son again.

  3. Sending you strength and prayers for a full and speedy recovery. Thank you for sharing your perspective through your son's eyes.