This isn’t intended to be bragging, but over the last 5 years, I have been told by several people that I am the strongest person they know. It always makes me a little uncomfortable to hear. I don’t feel like a strong person. Most days, I feel tired, cranky, scared, lonely, and stressed. I constantly forget things, and more often than not can be found wandering the grocery store in my jammie pants with no idea what I’m looking for. In general I feel as though I am just barely keeping it all together, hanging on for dear life to a speeding train, looking more like an old Looney Tunes cartoon than a respectable mom of 5. When it comes to my children and their medical issues, I am terrified that I have missed something, or made a wrong choice somewhere along the line, and that I alone am responsible for keeping them alive and healthy – if I let go of the handrail for just a second, it all falls apart. I often rail against the unfairness of the world. My faith in God, or whatever higher being you recognize, is questionable at best.

I was complaining about this very subject to my mom recently. She said that the difference between a strong person and a weak one was that a strong person kept moving, in spite of the fear, the exhaustion, the anger, and the grief. I suppose by her definition, I am strong, but to me, I don’t see how anyone could do any less. When your child is diagnosed with a life threatening illness, you find a doctor, you get them treated, and you move on. When you bury your baby, you still have to get up the next morning, and the next, and the next – the world doesn’t stop turning, so how can you stop moving forward? I suppose you could turn to alcohol or drugs to dull the pain, to escape the reality of your life, but if you do, who takes care of everything else?

By my definition, strength is dealing with the things life throws your way, and then becoming an advocate, promoting awareness of your child’s condition, fundraising, lobbying for medical treatments, running in marathons, and still putting on your make-up, taking a shower, and facing the day with a smile. I can’t remember the last time I wore make-up, and I’m lucky if I leave the house in clothes that haven’t been peed on, pooped on, vomitted on, painted on, used as a child’s napkin, or covered in cat hair. But I keep going every day, and some days I actually manage to get it right.

What is your definition of strength? As the parent (or other family member) of a medically fragile child, what have you done that makes you proud of yourself?