Sunday, October 3, 2010

A Different Kind of Hopeful

We are 12 days post surgery. And I'll be honest I was not prepared for this. So far the recovery has been kind of brutal, with lots of unexpected twists & turns. I'm once again out of my element.

I'm learning how to be "surgical recovery mom" and honestly wishing I didn't have to deal with this again. But we will, I will. 

As I was sitting in the hospital last week thinking about how this surgery was just the beginning and dreading the next few years in and out of the hospital, I recalled it was the third anniversary of my baby shower.

You know back then I thought I would be a different kind of parent. In hopeful anticipation I painted the nursery and picked matching accessories. I had it all planned.  I was going to be a working mom. My plan consisted of being neatly dressed, on time and well rested. (Which means I was very off based, even for a "typical" mom.) I knew it would be rough.

But, I never imagined this life.

Not in a million years.

Never, in the far recess of my brain, did it occur to me that my son, at almost three would not be able to eat or breathe on his own. Never, did it dawn on me, that he wouldn't hear or talk like a typical toddler. So happily hopeful was I, that it never occurred that his life would so heavily rely upon assistive medical technology.

Now, try as I might, I cannot imagine it any other way. 

Now I'm just a different kind of parent.

I wrangle nurses in my spare time. I have doctors and hospitals on speed dial. I drink sweet tea by the gallon and sleep in 15 minute intervals.  I'm a medical jargon speakin', feeding pump fixin' ninja type.

I'm the hopeful type.


Janis Marie is a full-time mom, freelance writer and blogger. Highly regarded and respected for her ‘tell it like it is’ approach; she created and maintains Sneak Peek at Me to chronicle her son’s life and complex medical journey. 

Through her blog and affiliations, Janis works year-round to promote awareness and acceptance for those living with a rare disease diagnosis. She also writes for Vote 4 HopeRARE blog, 5 Minutes for Special Needs, She Posts, Complex Child and Kidz.


  1. You are doing an amazing job Janis!! I hope the little guy adjusts well to his new 'accessories' and that they will cause minimal discomfort and/or drama:) Any questions/advice e-mail me or send a fb/tweet my way!! My Ethan has had two mandibular distractions and a very close friend of mine's son has had one. I'm here if you need me:)

  2. How often my wife and I have said the same thing! I know nothing about caring for "normal" children - as far as I'm concerned, they are the odd ones. I DO know how to take care of my little love, my daughter. I do know how to suction a trach, change a g-tube, prep a ventilator for the night. I know the things I was one day scared of. But as any loving parent would do anything for their child, I learned it all. I WANTED to learn it all, so that I could be the best parent I could be.

  3. Thank you for sharing this. I popped over to your blog and enjoyed "seeing" your boy.
    Surgery is so hard. I hope you are able to get the pain under control soon. I look forward to hearing more about you guys!

  4. I agree with Louise. Surgery is always hard from minimal to highly invasive.
    My son has had 5 surgeries to date. His diagnosis is cerebral palsy.
    Keep your head up and know that you are not alone.