Sunday, May 31, 2015

roller in the coaster and shine in the sun

This is Lily. She loves life more than anyone I know, never misses an opportunity to jump in a muddy puddle, obsesses over animals, (particularly dogs) and is always up for a dance party. She wakes up happy every single day; her eyes open and her sweet smile is never far behind.

She also has Tuberous Sclerosis Complex. Up until now it has not had a discernible effect on her life beyond having to take blood pressure medication daily.

She is a treasure.

 One day, Lily sent this video to her favorite musician, Justin Roberts.

And then this happened:

And then this:
And this:
And every single other song on her list happened, too. This also happened:
I think the THANK YOU is pretty clear.

As terrified as we all for what might happen when my niece Lily was born and transported via life-flight helicopter to Vanderbilt Children's Hospital on October 12, 2009, the last five years have been fairly uneventful in terms of her health. Despite her diagnosis with Tuberous Sclerosis Complex (TSC) in utero Lily has developed normally, and blossomed into a vibrant, loving, hilarious, and compassionate human being with a zest for life that is unmatched. This child wakes up happy, excited for even the most mundane details of the day ahead. She is just an absolute joy. To know her is to love her, truly.

Lily LOVES Justin Roberts and the Not Ready for Naptime Players. She has always seemed to hear and experience music and lyrics on a different level than other kids, and has developed a very specific connection with Justin Roberts. We had been counting down to his concert at Kenyon for MONTHS when the results of Lily's yearly MRI came back. After so many years of "see you in 6 months" we never expected her nephrologist to say she needed surgery. For a moment it wasn't even clear that she'd even get to go to Ohio at all. Thankfully, her nephrologist cleared her to fly and surgery was scheduled the week after the concert. The entire trip took on a poignancy that was, at times, painful.

I am so lucky to count Justin Roberts, Liam Davis, and Gerald Dowd friends, and when I let them know about Lily's situation, Justin immediately asked what her favorite songs were. I am so grateful to Justin, Liam, and Gerald for making Lily feel recognized, seen, and loved. I took as much video of the concert as my iPhone would hold, knowing how precious the memories would be, even as I tried to stay present as they were happening.

And so sweet Lily is having surgery this week. Two of the cysts in her right kidney are dangerously large, and have to be drained. Because of her medical situation, after surgery the only pain medication she is permitted to have is Tylenol. She will begin a course of treatment upon recovering from the surgery that has potentially nasty side-effects, in order to (hopefully) suppress the growth of both new and existing kidney cysts.

It's hard for me to wrap my mind around what is ahead. It's heart-breaking and terrifying and unfair and overwhelming. Lily is too young to fully understand what is happening, but she is very scared.

Because people have asked, I thought I would go ahead and offer a mailing address for Lily this week. If you'd like to send something her way (she is heading to Memphis on Monday, surgery is scheduled for Wednesday, and they expect to be there until Saturday) you can do so via the following address:

Lillian Solise
c/o FedEx Family House
918 Poplar Avenue
Memphis, Tennessee  38105

"...the road up ahead might be a rocky one but we'll get it done, then we'll roller in the coaster and shine in the sun."