To Lifespan Partner, operators of Rhode Island and Hasbro Children’s hospitals.
When we came in for a pediatric MRI with the anesthesiology team, I expected more. So. Much. More. And beyond my expectations, I needed that something more to happen because I’m entrusting you with my child. My child who, for all intents and purposes, is special needs, with narrow airways and spinal compression and a bit of extra fluid in her brain, needs that. Just that.
I wish I could tell you what it is that I am looking for when I come in, but I cannot. Rest assured, my desires don’t extend too far past the correct paperwork or knowing which waiting room to frequent. But when those needs were not met, I let loose. I had to, because part of my job as a parent, as a writer, as someone with reach in social media, is to make change where change is due.
Often, for rare cases, change is not made. Research is not given much thought because there is not the reach and therefore not the money, and that translates in to not the care to do more, learn more or make that change. Often one-time procedures are just one bad experience and over. But I am confident this is not the case. When something (like MRIs for children with rare differences) isn’t a one-time procedure, it loses it’s rare definition in that family- such as ours. We as a community need to help bring light to what needs are not being met, and I am confident that change is on the horizon.
While Lifespan was in my sight-line a few weeks ago (HERE), I want to remind people that we can all help make a difference, and often the medical community to which we entrust our loved ones wants to be herald as the best… being the worst certainly does not keep a hospital open for patients.
So, thank you. Thank you for having our missing team member call us and assure us that you heard me. As a mother, a patient, a patron of your service… which needs to be the best care my daughter can receive.
She may be rare, but it’s not for her diagnosis… it’s for her personality, her drive, her spark. It’s for all the things we trust you to care for and protect.
Thank you for listening,