Living with Special Needs, Uncertainty, and Thankfulness

I tried to write this blog for several days in a row but was uncertain what to type. Uncertainty seems to be a theme in my life these days. The main source of uneasiness in my family has been searching for an explanation for our daughter’s medical symptoms for 10 months—and then some.  For 6 years she has felt poorly and then a year ago more critical signs of illness began to develop. So once again I’m sitting in a waiting room at a medical center while my daughter undergoes tests. And with each test, we hold our breath for signs pointing to a reason and a solution. But clear reasons and solutions are elusive.


In light of this, I’m constantly researching probable medical diagnoses just in case the doctors are missing something (they sometimes do that, you know). I’m also frequently scratching a spot of skin on the top of my head.  I do this when I’m thinking hard or feeling anxious (as if it helps). You could measure my anxiety by looking at the state of my skin in that area.

I really am getting better at living with uncertainty.  "How?" you may ask.

  • First of all, it helps to be busy with enough "normal" life and pleasantly consuming activities to keep myself from 24/7 anxiety. Choosing an activity that is difficult to do and worry at the same time is best—such as talking with a friend, playing a game, or getting absorbed in a hobby or book.
  • Secondly, I will honestly admit that I cope better when I keep realistic to fairly low expectations for receiving definitive answers. This is not my default thinking process, but in my case, this means accepting that the next test will likely prove as fruitless as the last.  This may sound like giving up, but I think after 10 months of medical testing, this is a healthy adaptation to reality. I do still expect we will find an answer, mind you. I just don’t expect it to happen “today" anymore.  With all the wonderful medical advances in this century, diagnostics are still basically a game of educated guesses—of odds—and of trial and error. Tests have shown that several biological processes are not working as expected, but no clear reason for this has yet been discovered.

So I tell myself its ok.  We’ll find answers someday.


I think.

I dislike uncertainty. It’s so ... uncertain. That said again, aside from time and reality beating me into submission, there is one more reason why I am becoming more patient with the long process of diagnosis.

  • Finally, I'm learning the art of being watchful and thankful—plain and simple. The watchfulness helps me notice the little things that make a difference in everyday life. I have begun to notice blessings like the ability to get to an appointment on time even when it’s a 6-hour drive from home in unpredictable traffic. I notice and am thankful for having no fender benders in a crazy metropolitan area. Events like finding a parking spot relatively close to the appropriate building at a large medical center are appreciated. I'm thankful to wake up and see unexpected fruit in the trees at our hotel, and having a cool enough evening to make up for broken air conditioning in our room.                                                                   

Although I would prefer my daughter be well, I’m thankful that she and I have bonded on these long trips to strange cities. I appreciate the blessing of lunch in a quaint garden restaurant between doctor’s appointments. I feel great satisfaction when we can arrange many tests over a few days so we can accomplish much on our drives to the city.  I am more than grateful for doctors who are kind, wise andattentive. I’m amazed at how brave my daughter is after having close to 100 blood tests, 4 scans and several IVs—and how she still smiles. She notices small things like dogs at every turn of our trips, and she beams with joy if we find a restaurant with fresh-squeezed lemonade. These are the things that make the waiting and the uncertainty bearable.

I'm just getting the hang of this, and I know many of you are practiced at noticing the small blessings in your journey of raising a child with special needs. Many of you have needs and circumstances much more trying than my own. I would love to hear what you notice and what you are thankful for in uncertainty.

Dr. Karen Crum brings hope and practical support to parents through her blog and award-winning book, Persevering Parent: Finding Strength to Raise Your Child with Social, Emotional or Behavioral Challenges. Join her blog and link to her book at