Because of you...

Sweetest Jasmine,

The first email I read from your daddy, I was certain he was a woman.

“Jodie Uhl writes:

We will be by this afternoon to pick up the formula”

I don’t think Id ever met a male Jodie, and most of the folks on the local Freecycle group were women. I had posted a huge bottle of formula my then 2 month old Aeva didn’t need and your daddy had set up a pick up from my house.

And he was LATE.

Granted I wasn’t really in any hurry to get the formula picked up but was afraid of having anyone knock on the door and wake my sleeping infant. I was a tad neurotic back then.

“Jodie Uhl writes:

Im sorry were so late! We will be there soon! “

Ofcourse, by the time I got that email, Aeva was sound asleep and I was keeping close watch on her so that nothing would disrupt her.  I was determined to give Ms. Uhl a stern look of disapproval when she arrived.

A huge red SUV pulled up in my driveway. License plate MAXAMOS, a tribute to your mother’s personality. When I open the door there’s a man there, ear splitting grin on his face.

“Hi! I’m so sorry were late! We got stuck at the hospital with my daughter’s chemo session. We tried getting here as quickly as possible”

Chemo?? Daughter? Is this who they’re getting formula for? My mind went on a tilt. If she’s young enough for formula and she’s in chemo…

A month or so ago I had just lost my step-mother to a terrible form of cancer that had coated all her vital organs and weren’t even visible in scans. I had taken the 14 hour drive to Miami 3 days post-partum solely to bid her farewell. She had lived a life, perhaps not as long as we’d of wished, but she had had years of it.

I felt so embarrassed for my insensitivity and annoyance with your dad that all I could sputter was:

“Is she ok?!” Because of course, you idiot, no one EVER undergoes chemo when something is wrong….

“She’s alright, just tired. Would you like to see her?”

How can I describe the first time I saw you? I don’t think words can ever convey the way my heart both swelled and cracked into so many pieces.

You were tiny. 7 or 8 months old and hardly bigger than Aeva. You were slumped over in your ridiculously pink car seat, sleeping away the unavoidable exhaustion from chemo, wearing a frilly little bathing suit. It was slow motion going for me. My eyes skimming over your little bowed head, the scars pulling the breath from my lungs in sharp rifts. Little hands cupped, palms to the sky. Skinny little legs and fat little piggies painted, in pink of course, each dotted with a minuscule rhinestone.

A hand reached out to stroke the stubble of hair on your head, pulling my attention up and across you to your mother.

“This is my wife, Stephanie.”

She was, and is of course, beautiful.  Dark hair cropped short and a quick smile. It was then that I found out she was Puerto Rican and in the Army at the base that I lived in. Being that I am Cuban, your mom and I instantly clicked. We promised to keep in touch with each other, share recipes, and hang out. We could commiserate together the lack of good coffee and real food.

I held it together long enough to close the door behind me before I ran to Aeva who was stirring. I scooped her up and fell to my knees crying. My selfish heart wringing itself out: It could have been my daughter…my daughter…

Your story is very long. Multiple chemo and radiation sessions. Multiple hopeful surgeries. A Hemispherectomy. I lost count of how many facebook statuses from your parents included a trip to the hospital. How many texts we exchanged about where the progress of the cancer was.

I regret never having had the time to drive out to your hospital a few hours away to see you. See, back then I had such petty little worries. I was too busy. Too concerned with things that needed to get done. I had a household to run and children to take to and from activities. A husband and a life that kept me going, going, going.

After your hemispherectomy we all held our breath. We waited a while for you to come out of the haze of such a delicate operation. You had half your brain removed in an attempt to take the tumor that kept multiplying ever more rapidly each time doctors intervened. They even took some from your brainstem.

I waited to see that smile of yours again. It was my point of reference. You got it from your father I think. The way you could smile from ear to ear. Jasmine was Jasmine if she was smiling.  I am currently switching between this piece and all your pictures on your mother’s facebook and all I see is smiles. Tubes and smiles. Scars, and smiles. Machines, bandages, ports, and smiles. Smiles. SMILES.

There was an evening that we went to your house for dinner. My husband at the time, Iris, me, and your playmate Aeva. As was usual for Your Highness, you were on your bouncer set upon the coffee table that was otherwise covered with medicines and all sorts of instruments. You were front and center to the large screen TV your daddy had Mickey Mouse Playhouse on. We always knew you liked something if you yelled at it, beating your chest with one hand while one foot kicked so hard I sometimes feared youd managed to kick yourself off that table.

Aeva had been taking turns between zoning out on Mickey and holding your hand to sway to the music when we saw her trying to find a space on the table with you. I ran to grab her and take her off the table but Jodie intervened. He cleared the whole other half of the coffee table and stood Aeva up on it.

“C’mon Jasmine! Dance!”

Aeva held your hand as she boogied to the ‘Hotdog dance’ and you kicked away, singing along too. As the song came to a close, Aeva hopped down in search of her daddy who had walked outside.

You started to scream.

It was piercing. I don’t think I had ever heard you scream like that. You turned as best as you could, seeking out where Aeva had gone, one arm waving franticly in her direction. My baby doll ran back to you. She climbed back up on the table and settled in, hand in hand with you, to watch Mickey Mouse.  That night when it was time to say goodbye, Aeva noticed your port over your heart and in her limited language skills told you:

“Jasmine has boo-boo on da heart? I kiss. I make it betta”

Everyone watched as she leaned down and kissed you right over your heart and you let her.

I wished, and dear gods, I prayed that my very mortal child had done you some good that day. I held that wish so strongly, that a simple kiss could heal you.

The day that I found out that there was nothing further anyone could do…It was a  tumbling effect. The wish didn’t work. There must be something. Some doctor. ANYTHING. We just CANT give up. I felt adolescent in my anger, lashing out at everything. Faulting those who had no fault. I wanted to steal you. Carry you running until I found the answer to your cure.

I wanted to escape my very body. I didn’t want to experience this pain and uselessness.

I am selfish, little one. If I felt this hurt, I couldn’t even imagine your parents’ pain.  And I didn’t. I crawled into bed and cried till exhausted, I fell into nightmares.

Heartbreak, loss, and pain are not new to me. I have learned how to cut it out of my life when it becomes unbearable and move on. I steel myself against the worst of the storm and turn away.  At time, I run away from it.

I went to visit you when hospice was being set up in the living room of that large house your parents bought with dreams to see you fill it with years of memories. Your room could come straight out of a page in a Pottery Barn magazine. The twin sized bed you never had the chance to sleep in. A miniature table ready for the tea party we had hoped you’d have. The closet your mother had filled with clothes for when you’d be old enough to start pre-k even. It was never a thought in her world that you wouldn’t.

I met Jessica then. She has eyes that see things we all miss. And a talent that brings her photography to life. I helped her set up for a photo shoot of you. Moving you gently, dressing you as the angel we have always known you are.  In every picture she took we saw your peacefulness through the clamour of hospital drips and machines. Everyone took turns taking a picture with you that day. I was scared to ask, to take away time we had so very little of. To seem…selfish again. Jessica told me to get up, to hold you and as I leaned in to kiss your sleeping little face, she snapped a shot.  It’s the photo on my wallet front.

There was no way to shut you out.

I had meant to, I think. I was told by someone I loved that I was stupid to stay so close, knowing I was only going to lose you.

Most evenings I was over at your house. The amount of visitors was staggering. From nurses, to church friends, to friends and family from out of state.  The local news came by to do a piece on your amazing life. I hung back and helped clean up the kitchen from all the food that was being delivered in a steady stream. I made coffee and your momma’s favorite: Café con Leche. Neither one of your parents would leave your side, not that anyone can blame them. Often I offered to watch over you while they took a few hours of rest. The best I got was your mom passing out beside you while I watched the slow rise and fall of your chest. Time was closing and I was afraid to see you leave us.

Selfish.

My house was being packed that 29^th of October. I was exhausted from going between my place and yours. Laying my pounding head down, I tucked my phone under my pillow and let myself curl around Aeva’s for just a little afternoon nap.

The phone went off, your mother’s picture on the screen, and I knew.

“Sherlin, this is Stephanie’s sister Janice. Jasmine is passing. Please. Hurry. Stephanie is asking for you.”

Along the way I got stopped by a cop and I didn’t care if he had given me the largest ticket possible so long as he didn’t make me miss you. I hadn’t planned to be there when you did. I wasn’t strong enough to watch my stepmother pass, I didn’t think I could see you pass. The child that could have been my child. The child I loved as much as my own children.

You were surrounded by family and loved ones.  I walked in not knowing what to expect. Someone, your father’s mother I think, grabbed me and held me.

No, no, no…too soon. But my darling angel I was just selfish. Your pain was greater than mine and it was time for you to be free of it.

Ive never been very good at waiting. I put myself to work making coffee, discarding empty soda cans, talking to your hospice nurse.

“Come sit next to me” your mother said.

She was holding you, stroking your little face, counting fingers and talking gently to you. She seemed a saint to me.

“Would you like to hold her?”

“No…you, please…”

I was so afraid to hurt you. To take time away…

Little piggies, painted pink. Your momma’s doing. She always doted on you.

I had cast your hands and feet in plaster that week. Stroking your fat little toes I contemplated why you hadn’t let me hold your little hand but had instead held mine, tucking your fingers beneath mine, your thumb resting against them. The cast came out perfect. Where were you leading me?

I stepped away before I lost my own composure, and your dad took my place. Coffee. That’s what I need. The Keurig wouldn’t cooperate with me. I came out to the living room again at the moment that someone said something funny and everyone slightly chuckled. I was looking at your Aunt I think. Everyone had glanced at someone else. No one was looking at you for one split second.

And in that split second, you left us.

Janice suctioned you. She listened for a heartbeat. I don’t think anyone could breathe.

Our shattered hearts all broke at once. Tears flowed and we keened for your release from this world. From between the quiet cries your grandmother raised her voice in song. A church hymn I believe. It didn’t matter. Slowly each person added their voice, our very souls in each word, bidding us understanding.

I always though I knew what strength and love were.  I was wrong.

Strength is a mother, your mother, washing your little body one last time as though it were the very first time. Gently cleansing you with warm water, washing the soap from your baby-soft hair, patting you dry and wrapping you up in a plush towel.  Dressing you in your prettiest little monkey-print dress, brushing the dark curls she loved so much and radiation couldn’t take from you.

Love is a father, your father, holding you on the couch. Laying down next to you, now free of machines and curling around you one last time, as though it were the very first time. Holding you close to himself and breathing you in. Snuggling his little girl. The world around him gone, no one existing but you.

And compassion. I didn’t know a damn thing about compassion until the funeral home came to pick you up. Walking out the front door with you in Jodie’s arms, your parents stopped short of the van. We all lined the walkway leading to the sight of your parents handing you over tenderly. Tucking a stray fold of your blanket around you. The man holding you glanced at the back of the van…and walked to the front. He sat down in the passenger seat and cradled your head, like an infant, turning you into his embrace.

Your little hand has led me a long, long way since that time. You helped prepare me for what was to come.

Strength, to face even the most dire of situations.

Love, to always give unconditionally.  

Compassion, to understand even in turmoil that others hurt too.

Because of you I have learned to be less selfish. To accept that with pain comes some beautiful lessons.

I have had the strength to love compassionately even when there doesn’t seem to be that option.  Even when I am hurt so deeply I cannot fathom there to be any release.  

And to smile, always smile through my tears.

It’s been a long long year dear angel. We miss you and love you forever more.