What have I learned in the 10 years since receiving the call confirming Siena’s genetics test came back positive for Prader-Willi Syndrome?
#1. That even the best plan can unravel right before your eyes, and sometimes what unfolds is better than what you could have ever imagined.
#2. Advocate. And then advocate again. And again. And again.
#3. But, also, take a break when needed and give yourself grace… and wine.
#4. Finding balance is life’s ultimate goal. If you have found it, please send your secrets.
#5. Even the best medical specialists can be wrong.
#6. Do your own research and don’t be afraid to be “that parent”
#7. Do whatever it takes. And then…do.it.again. And who cares what ANYONE thinks.
#8. And then. more wine.
#9. Find your people…. and then let them be all in and let them be all out. Be Vulnerable. Be Strong. Be whatever you need to be at whatever the hell moment you feel like it. Just Be. There. Always. But also, know when you can let go.
#10. It is ok. We are ok. Actually. We are Amazing.
Sharing a 10 minute video… 1 minute for every year that has gone by since Siena’s Diagnosis Day. If you watch every minute til the end, I promise, you won’t be disappointed… it pretty much sums up the past 10 years. xo
#SienaStrong #cantstopwontstop #TakeThatPWS