These Last Days

The writing here is abbreviated, because it could never ever do justice to our experiences and emotions this past week.  I am sorry.  What do you do when you only have days with your baby?  Here is an account of our last days with Evie . . .

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Thursday

We learned that Evie was dying.  I can’t say I didn’t know. . . I felt a familiar sense of dread and terror for some weeks.  In looking back, even some of my writing from the very first week reflects the sense of Evie’s eventual death.  I had tried to escape that feeling and hold on to hope for her, but on Thursday we learned the inevitable truth.  I felt like I was going to vomit.  Kabir felt shock.

Friday

Kabir and I took turns loving her, holding her, and crying together.

Saturday

We brought Valerie to meet her. (We had been waiting for Evie to come off her ventilator to bring Valerie in.)  I was very worried that Valerie would be scared by all the tubes/wires/machines etc., but she was just happy and excited to finally meet her little sister! I was even more worried that Evie would be overwhelmed by this busy toddler bouncing around the room, but you know what? Evie was peaceful and interested in Valerie- She followed her with her eyes and let Valerie pat her and squeeze her hands and kiss her too.  Evie was alert and quiet and happy the entire time.  Kabir and I were genuinely happy the whole time too.  We felt almost like a normal family for a day.  There was no thoughts or discussion about the future- only love and joy in being all together.

But after introducing our daughters, I was once again heartbroken, desperate . . . the day was a glimpse into the life that could have been.  I thought about Valerie and Evie playing together as little girls.  I thought about how deeply I love my own sister, my very best friend.  I wanted a beautiful life of sisterhood for Evie and Valerie too.

Sunday

 We arranged for Evie to go outside to a small shady courtyard near the NICU.  This was no easy task because we had to reserve a transport isolette and be escorted by a nurse, a respiratory therapist, and a security guard. Again, I worried that it all might be too much for Evie.  Would the sun be too bright?  Would the wind startle her? No. Evie loved it.  I could tell. Yes, she loved it.  And so we were sad, so sad, that Evie would not feel the breeze and the sun and hear the birds with us again. . .  God, the things we take for granted, huh?

Monday and Tuesday

 Our parents came by to spend beautiful quiet time with Evie- a chance for them to say goodbye.  Those days are blurry for me, and I honestly had to stay away a little.  Loving Evie was hurting.  It was hurting too much.  At one point I held Evie on my bare chest and sobbed. . . the tears falling from my eyes, streaming down my neck, pooling at my collar bone, and continuing on from there.  On one hand it felt so normal to have my Evie on my skin with my hand cupped over her tiny head.  But each breath she took was fast and labored and forced by this big blue machine.  Her body felt utterly sick against my body.  I sat and listened to that room filled with dings and beeps, and I smelled chemicals and medicine.  How wonderful to have her with me, but how terrible to have her like that?

Kabir and I spent that night at the hospital, with a silent understanding that we might stop Evie's life support after the care conference.  We rested in Evie’s room for a long time while she slept, and eventually the nurses found us another room where we could sleep until morning. 

Wednesday

We paced the blocks near the hospital and talked about our love, our marriage, and our family.  We talked about the past, the present, and wondered about the future. We talked about how Evie had never really been born, but that she was alive, but that she was not really living a life, but that she wasn't dead, but that she was dying.  What would it be like when she was gone? Who are we anymore? We still are wondering about that.

At 11, we went to Evie’s care conference, where I asked the tough questions whose answers I already knew.  Nobody said anything that I wished they might say.  We knew what we knew, which was that we had to love Evie enough to let her go. . . . we held each other and waited for the time we had set for our daughter to travel on.  Kabir held Evie one last time.  I don't even know if we were crying.  I don't remember what we felt or said leading up to the time that we took Evie off her life support.

Holding Evie on Tuesday

Evie awake on Mommy's chest.

Kabir holds Evie before we are going to remove life support.