A Rollercoaster Ride

 A Rollercoaster Ride

I was watching the old Steve Martin movie, "Parenthood" a few weeks ago and near the end, an elderly Grand-Ma tells the story of how some people who go to amusement parks prefer to ride the Merry-Go-Round.  But "it just goes round and round".  The Grand-Ma said she loves the Roller Coaster because it has the highest highs and lowest lows.

The last week with Stella has definitely been a rollercoaster, and I'm still feeling a bit nauseous from the ride.  

Wednesday she started to look a little bit ill, and we suspected maybe a UTI or bladder infection.  By Thursday, we had a prescription for antibiotics but we could not get Stella to wake up to take her medicine.  She was sleeping all day and all night, feverish and whimpering.  We finally forced her to take the thick banana syrup while she cried and fought us the best she could---weakly, unfortunately.  Just as we got the final bit of medicine in her she threw up so violently it came out her nose and covered us both in sticky, flemmy vomit.  In despair we washed her off and Aimee and I looked into each other's eyes intensely.  There was no room for anything in our hearts than raw fear.  How were we going to get the fever down, get rid of the infection, get her pain medications into her if she refused to take anything and wouldn't wake up?  We finally came up with the idea to put the amoxicillan into her bottle of milk and convinced her to drink it.  By Friday she started to come around a bit, and by Friday evening she was able to enjoy a great evening playing with Gracie.  Saturday she seemed fairly normal and then Sunday, BOOM, she was again sleeping all day and night and unresponsive.  Late last night we tried to give her liquid morphine (which tastes awful), and it woke her up.  She was grimacing and we were trying to give her milk to wash away the taste, but for some reason it was as though her teeth and jaw were sewn shut and try as she might, she couldn't pry them open.  Her eyes got wide, her arms shook, she made guttural sounds in her throat as she desperately struggled to open her mouth.  Aimee and I panicked, we both cried and tried to force her mouth open first with force and then massaging her cheeks.  It was awful and I felt completely out of control, like being on a roller coaster that is whirling through a dark tunnel where you see no light and feel no thrill, only heart-stopping fear.

Finally, somehow, her teeth widened enough to shove a bottle between them.  We lay on the bed and held each other while Sam slept peacefully a few feet away from us.  It was the first time in a long time I felt true despair.  Aimee and I can handle the agony of watching our daughter die slowly.  We can find the strength to continue to live.  We can convince ourselves that Stella has lived a good life, albeit short life.  We can use a combination of therapy, pills and tenacity to rebuild our lives after the greatest tragedy we could imagine.  BUT we cannot tolerate the idea of her suffering, even a small amount.  None of this seems fair, but it especially feels cruel for our innocent daughter to feel any kind of pain, discomfort or fear.  This moment made me feel like I desperately wanted off the ride.

At 6:30 Monday morning, Stella woke up--- in every sense of the word.  She was bright again, she was singing and telling jokes.  She asked me to take her to buy avocados and smiled at me as we selected the best ones to add to our growing pile at home.  Even the Doctor was shaking his head.  Stella defies traditional explanations of DIPG tumours.  Each morning as I kiss her curls and breathe in the smell of her sweaty skin, I whisper how grateful I am to have one more day with her.  Then I kiss Sam and wish with all my heart that he becomes a healthy and happy adult someday.  This has become my morning routine, almost like a daily prayer or meditation.  A brief moment each and everyday where my feet feel firmly planted on the ground and the roller coaster has not yet begun it's climb or descent.  

I always liked roller coasters better than the carousel--- carousels made me feel dizzy and disoriented.  But now I long for the predictability of the carousel. The worst part is that I know we haven't even fallen off the cliff yet.  I know that no matter how many times I have cried for, raged against and dreaded this journey...the worst is yet to come.

I already often feel like a kid with her face pressed up against the candy shop window, watching all the other "kids" run around, carefree grabbing whatever they want and smiling and laughing while I'm stuck outside.  It's not jealousy exactly, more like a longing for that same sense of entitlement and innocence I had just seven short months ago.  I've lost the security that you get when you get on an amusement park ride.  Even though it looks dangerous, you just trust and assume that you won't be dumped onto the concrete when the coaster does a loop-de-loop.  Millions of other people have ridden the same ride for years and years and get to enjoy the ride, laughing and screaming and then get off at the end completely unscathed with rich stories to tell.  

But Aimee and I got on the ride and the safety bar broke.  I'm beginning to think that I'm not just on a roller coaster, it's more like a free fall.  And the only thing between me and the concrete is a pillow of hope for the future---but it's still such a long way down.

Feeling Sick---but still beautiful

Faux Birthday Party for Stella on Saturday

Fun with Cousin Gracie on Friday Night