I posted on my facebook page that I was running low on patience and physically and emotionally exhausted. So many comments and yet I am sure many were linking it to my constant pace of work. My exhaustion has little to do with my daily routine. It is emotional pain at the journey two of our beloved friends are about to face. No matter how I try to occupy my time with projects and work, they follow me through every second of everyday. We started our journey and quickly formed a family of fellow Infantile Scoliosis parents. We formed friendships, nurtured those relationships, started our daily AA for Scoli parents and worked our steps together. 1. Acceptance, 2. Collaboration, 3. Sharing, 4. Support, 5. Start back at step 1. This has guided each of us through the months, that have stretched into years and sustained us for whatever lurks in the darkness ahead.
We all know monsters lurk in the great unknown. It is the premise for all scary movies. Something unknown ahead. I can assure you I was swayed into false security with the rainbow I glimpsed in the distance. I forgot all rainbows need rain or in this case a storm to exist. The news came from Dylan's family first. We mourned and grieved yet still it was months away and was not yet here. We rallied in our secret place and planned our support boxes because it was something tangible we could control. Before we could recover from one hit, the next came like a freak squall out of the east and knocked us down. Our Giana would start the same treatment only this time we didn't have months to prepare. It will be here before the end of September.
My heart is sad my beautiful friends. I have read about what is ahead and I don't want this for them. Two families who have brought such sunshine into our lives and are knit into our souls. I am helpless to stop what waits ahead. We all are. We have cried together in the cover of our cars, basements, & backyards to avoid alerting our kids to the reality of what is occurring. Ignorance for now is bliss. Out of pain, came our plan. We have launched a GiveForward project called "The Real Superhero Project".
We all started our Infantile Scoliosis Journey filled with hope and with promises to stand with each other if any of our children faced spinal surgery. This is the first test of our pledge and we hope we are making our dear friends feel the love they so justly deserve. Scoliosis, at any age, has been trivialized for years. There is always someone quick to share the story of someone they know who had the condition and the story ends" and they were fine." For families living the diagnosis, they understand fine may come but the journey in between is anything but fine. Months in a hospital, away from school and family, managing pain, with metal now permanently affixed to your spine and discomfort in children is never easy for the parents.
Here are tributes to our beautiful friends. If you can offer a hug, words of encouragement or monetary support please visit our page. They will both start with inpatient halo traction to decompress their spines and will at the conclusion have their first spinal surgeries.