Monday, September 12, 2011

Special Needs Parents Make Great Medical Patients

I may as well be blunt; I was diagnosed one month ago with breast cancer. I will be getting a bilateral mastectomy soon. It’s a lot to process, but my family and I are handling the news really well and feeling as positive and upbeat as we could under the circumstances.

This is probably due in large part to the fact that my cancer is non-invasive and my lymph nodes are clear. As long as my post surgery report isn’t filled with surprises, my prognosis in the long term couldn’t be better; we caught it early.

I wonder sometimes how parenting Ethan has shaped my ability to cope with such a heavy diagnosis and the impending surgery. Our parenting journey has included some extreme highs and lows, and like many of you, I’ve really been honing my advocacy skills. For instance, I’ve replaced a couple of specialists with people that I’ve had more confidence in, which turned out to be an ordeal each time. It gave me practice in finding the voice that learns how to say, “This isn’t good enough, my child deserves better.”

I’ve also spoken to groups in training sessions at our children’s hospital to help them see the world from a special needs parent perspective. Many of these people are trying their best to be good at their jobs, but just lack the training and tools to deal with children who have developmental disabilities, as well as their often stressed out and exhausted parents. These presentations have helped me develop the voice that says, “You may not understand my child’s behavior, but he deserves your compassion and understanding anyway.”

Now I find myself in the throes of medical appointments, tests, procedures, and surgeries that loom on the horizon. I’ve been channeling the advocate voice a lot lately and feel it has served me well. It has also given me a great deal of perspective. We do a lot of therapies and interventions with our son that may or may not make a difference, but we have to try. With my care, there doesn’t seem to be any gray areas. It’s pretty cut and dry. I will undergo treatment, and then I will be cancer free and fine. I wish it were that simple for my son.

The other evening, my husband and I were discussing everything and how we’re feeling; I couldn’t help but marvel at our coping skills. I mean, we could justifiably be freaking out right now, but we’re not. Then he said “We’re Ethan’s parents. We’ve already learned the lesson that life’s a bitch.”

Seems like that might be true, too. 


  1. Oh my gosh, Heather! Thank you so much for your honesty, and I hope your treatment, recovery, and prognosis are uncomplicated. :)

  2. Heather: I too was diagnosed with breast cancer last summer, and I too wrote about it at Hopeful Parents:
    Thinking of you! The good news is that it's not invasive, and there really is a lot of resources for breast cancer! Good luck!

  3. Best wishes!
    It's amazing how having a child with disabilities puts things in perspective.
    I hope you keep us posted and that things go as smoothly as possible.

  4. Heather,
    Sending you strength and healing prayers. We are here to support you always.