Sunday, February 8, 2015

Purple for Amanda

The morning I lost my job, I happened to see that there had been a new CaringBridge post about Amanda, the cancer-stricken daughter of friends of mine from college.  The post revealed that she had taken a pretty significant turn for the worse, suddenly needing a major increase in her morphine dose.  The inkling at the time was that it was the beginning of the end.  The morphine made her sleep all the time, and at the time they were afraid she might never be wide awake and interactive again.  They were a week away from her 6th birthday and decided to celebrate a bit early, just in case.  She wasn't really able to enjoy it, though that celebration seemed to set off a flood of tributes to Amanda.  People had their own parties and her favorite color purple started popping up everywhere, but there was a very real fear that she wouldn't make it to her birthday. 

But make it she did.  Not only did she make it that extra week, but she continued to remain stable for weeks the surprise of pretty much everyone.  Of course, for a girl that has been a fighter since her diagnosis, it probably shouldn't have been a surprise.  She's always exceeded expectations and amazed even the most experienced medical professionals caring for her.  Per her parents, she never complained.  She battled for more than two years and only near the end did it really keep her down.  She was a living, breathing miracle.

She became something of a local celebrity thanks to a special feature article that the newspaper did on the palliative care team at Golisano Children's Hospital in which she was prominently featured.  A Facebook page popped up, inspired by something her mom wrote, and people started hanging up purple ribbons and posting photos of them.  We have two outside our house--one on the tree and one on the porch.  At this rate the tree one might be there until spring because I'm not going through three feet of snow to get it!  Every US state, numerous Canadian provinces, and quite a few countries around the world were represented.  It was truly wonderful to see support coming from all over. 

Saturday morning's CaringBridge post shared that Amanda's heart rate had spiked overnight.  Apparently that's one of the signs that the end was near, and when I didn't see a post first thing this morning, I was worried.  When I got home from church and saw a notification of a new post, immediately I got nervous.  The post was a short one.  Amanda passed away at 3:12am Sunday morning. 

Although it is a terribly sad loss for everyone who knew her (and even those of us who didn't), the bittersweet joy, of course, is that after more than two years of fighting, that sweet little girl is healed and rejoicing in Heaven.  While those down here weep and mourn, she is whole and at peace. 

As a parent, my heart breaks for her parents, Liz and Paul, and her four siblings.  I can't imagine the depth of their loss.  Their entire lives have revolved around Amanda's every need for so long.  The loss itself is so heartbreaking, but I also think of the practical side of things--how do you ever find your "new normal" after so much time living this "other" life?  Maybe I'm just more aware of it because my life took a big 180-degree swing four weeks ago and I've had to find a "new normal", too.  Of course, mine is hopefully temporary, and theirs is a very difficult version of forever.  While I will certainly be praying for their comfort and peace, I will also be praying that the family can find its way back to a normal life, albeit one without their precious Amanda Panda.  It's one thing to mourn as they will in the days to come, and it's another thing to live with the loss for the weeks, months, and years beyond.  I imagine it seems impossible, an insurmountable task.  I know they draw great strength from their faith and from the army of prayer warriors surrounding them.  But the unthinkable has occurred and there is certainly a hole there that is nearly impossible to fill.

It seems like such a senseless loss, leaving all of us here to wonder why cancer had to take another young life, such a sweet, amazing girl with so much life to live.  But there is no doubt that Amanda has touched so many in her short life.  She has inspired countless people to live with more purpose, to find the little miracles, and to savor every second.  Hopefully her story will contribute to the effort to bring more awareness to childhood cancer, the research for which is generally underfunded compared to so many other cancers.  There is no doubt that her death cannot be in vain, but it remains to be seen exactly how and to what extent her life and death will impact the world she lived in.  For the time being, the world is just a little bit sadder than it was 24 hours ago, but I truly believe that in the long run, her joyful, fighting spirit will leave this world a much better place, somehow.

But for tonight my thoughts and prayers and with her family and friends.  Yesterday I painted my toes purple in her honor, and early this morning I added some glitter.  Little did I know that it would come to represent the confetti upon her entrance to Heaven.  Even still, those purple toes will hang in there for a while, a frequent reminder to pray and remember.  Rest in peace, Amanda.  This world will miss you, but we'll see you in heaven someday...

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