No perfect trick or treat

I have great Halloween memories with the kids. The 1991 Halloween blizzard when Jessica got her boot stuck in the snow trick-or-treating, dumping her bucket full of candy in the snow. The year Michael dressed up as a Dalmatian puppy and cried for ten minutes because he didn’t want his nose painted. The time Jessica carried two large pumpkins from the furthest corner of a pick-your-own pumpkin patch because Michael insisted we search the entire field for the biggest one, which resulted in me having to carry him and Jessica mad at Michael.

The list of memories could go on and on. On a week like this, they run through my mind like my favorite movie on fast forward. Inside the fun and the not so fun associated with these types of family events and the memories it creates, lies an important lesson learned. In real life, nothing is perfect. Perfect doesn’t live here.

We all desire that perfect Hallmark moment with our families, but most of the time, it’s in the imperfections that we find our most cherished memories. When Michael began having unavoidable pain from walking, he and his cousin dressed up that Halloween in Scream costumes scaring unsuspecting Halloween guests. The first Halloween Michael was using a wheelchair he was concerned he wouldn’t be able to go trick-or-treating because of it. That was until he and a friend decided they would both wear all sorts of bandages covered with blood (ketchup) and they used the wheelchair as the perfect prop for two kids dressed up as accident patients. Another year Michael was in the hospital on Halloween convinced he wasn’t going to get any candy because he wasn’t at home. By the time he left the hospital a few days after Halloween, he had a bucket full of candy and toys from a hospital version of trick-or-treating. In addition to that, his school friends shared their Halloween candy with him so he had two big buckets of candy that year!

Perfection is not only defined by acts done perfectly but in the excellence of the act. One of the many blessings in having a child with special needs is a view of perfect that’s indescribable. For example, there was an excellence in the way family and friends chose to adapt to any situation changed by Michael’s progressing disease. Love was put into action creating something excellent, which helped him as well as us face what some would call limitations. When in truth, the only real limitation is a delusional sense of perfect.

In representing the patient and family perspective, Be the Change will strive for realistic excellence in strengthening relationships between patients, their families and medical providers, which will improve health care. Patients and their families are omniscient, living with medical experiences that are imperfect yet excellent in the way they teach us what is really important. It’s the catalyst that will lead us to a health care environment that is less frustrating and more respectful of each others human experience.

The morning of Michael’s funeral his middle school friend wrote on Caringbridge, “I never knew perfect until I knew Michael”. In heaven, Michael knows perfect, that’s where perfect lives. Here, we are simply trying to Be the Change.