Finding the Message Within the Mess.
Well-meaning people tell me all the time that God won’t give me more than I can handle. I just don’t think that’s true. I appreciate the sentiment. I know it’s meant to make me feel better about the special needs/medically complex life we now reside in. I believe that...
Cultivating Friendships
One of the hardest things about being a special needs mom, especially if your child needs a lot of 1:1 assistance, is carving out quality time for others. Friendships will suffer if you aren’t careful and don't intentionally work at them. The sad, hard truth is that...
Are You Satisfied?
When your child is in clinical trials, you become an expert at filling out surveys. One survey that I dreaded every month for almost 2 years was a Duchenne parent survey. The questions were simple by design but deceptively difficult. One of the typical questions I was...
Cracked But Not Broken
Kintsugi is an old Japanese technique used to repair broken ceramics with a special lacquer mixed with gold, silver, or platinum. The ideology behind this practice is that nothing is ever truly broken. By fixing the piece, you can see this original integrity of that...
The A.B.C.’s of surviving parenting a child with special needs and/or complex medical issues
When there aren’t enough hours in the day, what do you do? In my messed up and rather snarky Monday mind, I hear little Ms. Perfect Pinterest Mom say “Friends, you prioritize. You pick the highest priority, work on that until it’s completed, and move on to the next.”...
Gratitude Through the Fear
The entire world has found itself in an unprecedented situation. Someone said they find themselves in a constant state of either over-reacting or under-reacting, yet they never know which camp they are in at any given time. Feelings and rationale seem to be muddled....
Glimpses of Grace
Today is the anniversary of the day our lives changed forever. Eight years ago today, we were told that T.J. is "a Duchenne boy." Eight years ago today we heard the word "terminal" in relation to our child. As I was getting ready to post this, I briefly thought about...
Memories downloading…
But there was one moment when I realized I was so busy taking pictures of my family making memories that my major contribution to the memory was to capture it, not participate in it.
Bucket List – CHECK!
My amazing family took a vacation last week to Myrtle Beach, SC. We told our boys that when they graduated high school, they could plan our next vacation (within reason...ha!). Connor graduated this past spring and he chose the beach (of course). Since we are dropping...
Perspective
I'm convinced that it's in the Parent Rule Book that we think our own children are amazing. Well, at least until they are teenagers. Our children are just so special that we wish everyone else could see them as we do. But are my children really as amazing as I...
Limitless Miracles
What is a miracle? Webster’s Dictionary defines it as miracle nounmir·a·cle | \ ˈmir-i-kəl \Definition of miracle1: an extraordinary event manifesting divine intervention in human affairs (the...
Who do I think I am?
There are so many times I feel ready to take on the world, but this little voice (okay, sometimes it's a roaring beast) in my head snidely asks me "Who do you think you are?" Who do I think I am to start a blog? Who do I think I am to share my writing? Who do I think...