Novartis is flying me to New Jersey on Friday to a Tuberous Sclerosis Blogger Summit with 4 other mommy bloggers. Apparently this little blog has an identifiable impact in the TSC world---who knew? I’m not sure what to expect, but I have been instructed to use the hashtag #sponsored on all my posts. I even read in the paperwork that someone will be holding a sign with my name(!) when I get off the plane. I have always been secretly jealous of the fancy business people getting whisked out of the airport while we schlep around with Oliver’s wheelchair and glass jars of clinical trial medication.
You know what though, I wish this was as cool as Jennifer Aniston’s gig with Aveeno. Do you think she gets free lotion for life? Can she take a bath in it if she wants? Can’t you imagine her squirting bottle after bottle of that stuff in her giant tub, while her chandelier is dimly lit, all under the spell of a custom piece of artwork?
OK, I digress, back to working mom who drives a minivan in a middle class world….
In all seriousness I can’t wait to meet the four other moms. For a little less than 24 hours we’ll be able to talk endlessly about subependymal nodules and angiofibromas. We can compare doctors at TSC clinics and genetic mutations. We won’t be judged for sharing EEG war stories or how we cope with all the unknowns of this complex disorder. When I am with moms of kids that are typically developing I can never talk about these things, not only because my friends can’t even pronounce this stuff, but it can be a real downer. Life threatening brain tumors isn’t exactly small talk…it kind of puts a damper on the mood if you know what I mean.
So on Friday night I’ll get to share a meal and then perhaps venture into the city with my new friends. Women who’ve walked through the minefield of TSC everyday. Saturday we’ll be educated by experts and then asked for our opinions, thoughts and experiences. I expect each mom will have a story as diverse as this incurable disease. After hearing their stories I’ll want to give them all a medal of honor for her sacrifices, her bravery, her patience and perseverance. This is not a path for the faint of heart or easily overwhelmed.
I’m honored to be counted one among these women and I haven’t even met them yet. I don’t have to meet them to know I’ll love them. This is our world. It is messy. We walk the minefield with caution. We share the maps we’ve drawn with each other to avoid explosions. In the process we’ll have wounds to be sure, scars on our bodies, and some sustained level of trauma from the state of crisis we frequently live in. But, despite all this we will carry on with that powerful force that is a mother’s unflinching heart of love. That deep sense that we’ll do anything to help our children live rich, full, joy filled lives.
And most importantly I am sure we’ll all agree on this…
we will give everything but up.
#iamtsc #sponsored
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