It has been nearly a year since I last posted. Aida turned 3. She attends school two days a week, which she loves, and has a new little brother Emmett, whom she ADORES. Her hair has finally grown! She is caring, hilarious, crazy and a "threenager" in every sense of the word. And each day, I grow ever more in awe of any adult who ever cared for me and listened to the incessant talking that we now endure enjoy. :)
Fortunately for us, Aida is also a great traveler, since twice a year we head to Cincinnati
where she has full body scans and an appointment with her specialist the
following day. Sometime on the drive up I settle into a familiar mental
space. The sweet spot is somewhere
between optimistic and emotionally prepared (guarded) for a negative turn. It is some balance of faith, awareness of reality,
and emotional numbing. A couple of months
ago after Aida’s most recent MRI, we were given the exceptionally good news
that all of Aida’s lesions were improving.
ALL of
them.
For the first time ever.
Said emotional numbing paired with
total exhaustion and the fact that she is still unwell muted what should have
been a more celebratory response. We were reminded that she may be on
medication for the rest of her life but also that research is happening that
could change that some day. We saw scans
that showed noticeably smaller lesions on her liver but also the precariously
located ones on her brain and the inexplicable ones in her bones. In the end,
the most exciting news was comparatively insignificant. We were told we would be able to space Aida’s
monthly visits for lab work to 3 months, and the visits no longer had to be at
the clinic (hospital) but could instead be with our pediatrician. Such a small hurdle in the scheme of things,
but now a year of care means two visits to Cincinnati and two to her
pediatrician. I was so excited. 
Yes,
yes, yes, everything looks better. Did I mention we don’t have to go to clinic
any more?!? That’s basically like
buying a house and being most excited about the trash pick up at your new
address. House schmouse. I have a giant trash can!
As we entered the hospital last week
for Aida’s final clinic visit at Vanderbilt Children’s, I noticed the hospital
smell for the first time in a long time.
I breathed it in deep, which is not hard to do since the entire place
oozes with the scent of the hand sanitizer mounted by every door (and seemingly
piped through air vents). As usual, we were cutting it close on time, but today
as we hurried to the elevators, I was moved by memories tied to that distinct
smell. Three years and 3 months ago to the day, Aida was born early and under
terrifying circumstances in the hospital next door then immediately carted off
to the NICU of this Children’s Hospital where we would spend weeks and then months
both inpatient and out.
Over the last 2-1/2 years, however, we
have been incredibly blessed to only make monthly visits, and ever so often,
the scent surprises me and momentarily thrusts my mind and emotions into
recollections of much different times.
It is always surreal but typically fleeting as we are inevitably rushing
to the 6th floor to see many of the same nurses we met 3 years
ago. I remember clearly my first time
seeing the sign above the door that read “CANCER CENTER.” It felt far too serious. Aida didn’t have cancer, but at the time, I
had no idea what we would be in for. Now
we’ve probably walked through those doors 100 times, and while there may well
be occasional visits in the future, today was the end of a long, hand
sanitizer-scented chapter.
Aida still knows only bits and pieces
of her story and understands it even less.
With time though, she will learn and own it. It has been and continues to be our story, but soon it will truly be hers as well. I can’t wait.
I wonder if years from now she will encounter the smell of that
sanitizer and dig through her memory to identify its source. I sort of hope she
does. I hope it mysteriously elicits a sense of the sometimes painful struggle
met with God’s faithfulness, the love of family, the prayers of strangers,
divine peace, the influence on her infectiously joyful personality, and the
forging of her own strength.
I cannot say thank you enough for the continued love and prayers.
