Lea was curled up on our oversized khaki sofa, the place she had been for the majority of the past two weeks thanks to yet another unsuccessful steroid wean. Her head was nestled in my arm as two thick, black eyelashes sat on my index finger. You get two wishes Lea! One for each eyelash.
I wish Pippi Longstockings was real.
Lea as Pippi, 2015
And I wish for a long life with Momma.
Here we are. Month eight plus two days. I still wonder how we got here. I still ask why me? Why us? Why her? Why, why why…
A few days later we are back in Naples. It’s only day one of our trip and I’m ready to come home. Part of me wonders if it was a mistake even coming here in the first place. My eyes are blurry with tears as I look out at the sea of seemingly perfect familes walking past us, smiling, skipping and laughing. I feel like I am being held under the water, struggling to find air and make sense of this. I can feel the envy mixed with anger building inside me. Lea is back at the table curled up in Mike’s arms in pain, she won’t eat, or play, or engage. Liv and I start to cry and so we decide to leave the table. We make a quick exit and start to walk hand-in-hand down the perfectly landscaped street, sundresses brushing the ground, tears running down our bronzed cheeks.
We find a bench to sit on, our matching brown eyes are now wet and locked in a worried gaze. I don’t know what to say to her. I struggle to find words to make sense of this to grown adults, never mind to my nine year old. I tell her that I know this is hard. And I know we don’t have answers. I assure her we will get through this, together. I tell her to pray to our mighty God for peace. I tell her we are going to be ok. As I say the words I struggle to believe them myself… but I tell her anyway.
Later that night I google the closest pediatric emergency room. Just in case. I am thankful for the two vodka drinks I had at dinner and Friends reruns all night long, as they help to slow my mind and allow me to sleep for a few interrupted hours.
Right now Lea is sleeping next to me, her pajamas from the night before are covered in chocolate ice cream, one of the few things that makes her happy these days.
We are supposed to be at a 7th birthday party for a friend. She tells me through tear filled eyes and gasps that she doesn’t want to go. When I ask her why, she tells me that all the other kids will be jumping in the bounce house and she will be sitting there. I join her sobs and gasps and we hug. For a long time.
Watching your child lose function and ability while simultaneously losing interest in life is extremely painful to say the least. Lea used to sparkle and shine, now it is rare to see her happy and enjoying life. I regularly wonder how she feels as I dress her and bathe her, help her go to the bathroom, help her walk, or carry her from place to place. She is dependent on us now. Her legs don’t want to work. Her speech is slurring and she sometimes drools. Her eyes are tired and lost, void of emotion or expression. Such a far cry from the independent firecracker she used to be, eyes full of joy, or rage, depending on the moment. I miss her. I miss our old life. I don’t want to do this anymore. I don’t want to face what I know is coming next. I want to quit. I want out.
We have another MRI on Wednesday in Boston, but I don’t need an MRI to tell me what is going on. I know in my heart the monster is back.
Part of me wants to live in this moment forever because it means Lea is with us. And another small part of me wants it to be what it will be. I know she is not happy and enjoying life. I know this is no way for a six year old to live, watching life go on around you, unable to participate as you once could.
That part is painful. For all of us. Right after I was told my child was going to die, I walked out into the Yale hallway to people laughing, lunching, and sharing stories. My world is being ripped apart, and yet life goes on.
If only her eyelash wishes would come true.