Our last day with you

It’s been 4 months since your day 4.

We keep saying you lived four days, because in counting the hours, you lived only four full (24-hour) days, but you breathed air on five different days, February 20-24. 

This day, day 4, was your hardest day, I think. It was the day you held on to meet your last great grandmother and your oldest “sister,” who sped down I-5 late at night praying you would live long enough to meet her. This was the day we watched you waste away.

We tried to give you more to eat, upping your dose of milk from 3ml to 4ml every 2-3 hours, but you aspirated a bit, and that made your breathing harder and so we gave you morphine, which made breathing more shallow, but you seemed comfortable. This dance between balancing nutrition with medication just didn’t sit well with me. You were so tiny. When the hospice nurse came to check on us, she offered to weigh you, but you were so touch and go, I was eternally worried that if I put you down to get your weight or take your picture, you might die right there, and then I would forever regret you weren’t being held when you died. So, we didn’t weigh you again. I barely took any pictures, and someone was always holding you when I did.

Your purple breathing was becoming the norm, now, with yellow breathing only coming in spurts. Your grandparents tried to busy the kids with Chutes and Ladders and Whiffle Around the World (a trampoline game Grandma Chickee invented), but no one left if they didn’t have to. It was physically painful to leave your presence. It felt wrong to be away. I would leave the room to pump milk for you (I only did this maybe three times) and sit there wondering if you were breathing. Once, your daddy rushed up the stairs to tell me he thought it was “getting close.” So I dropped the suction cups and milk and rushed downstairs. You breathed again that time, but I think Carrie had to go clean up my pumping stuff because I don’t think I left you again.

Piper read books to you and Cayden was rarely far from stroking your cheek.

Another time, your breaths were so far in between that we all just gathered on the floor, on the couches, standing, and waited. The girls were cuddled next to me and Judah and your daddy were on their sides. You were upright on my chest, in your best breathing position, skin to skin with me. Then, you lifted your head off my chest and arched your back into my hand that sprung to life. You never moved, and this movement was not normal – it was a seizure. Your first seizure in front of everyone else. You had seized twice in the hospital with just me and daddy there. This time (thankfully), you had some seizure meds in your system already, so the seizure wasn’t AS traumatic as the hospital ones, but believe me, all of your family understood from that moment on the battle your life would have been if you lived longer. Judah tried to reach in and comfort you with a kiss right after the seizure, and you flinched and he looked at me with eyes full of fear that he had hurt you. I quickly told him that it wasn’t his fault, and he recovered and caressed you again. He would have taken such good care of imperfect you, guarding you like his treasure.

In that moment, like so many moments before, we thought you were dying. We grieved openly and collectively, weeping together. And then you breathed. Again. And again. Vic and Carolyn interrupted their beach vacation to come back and meet you. I'm so thankful that so many people who loved you got to love on you before it was stoo late.

There were a lot of people who loved you who did not get to meet you too. I know anyone would have come if we ad made the call - there were so many people who loved you, and people were so gracious with us to not overwhelm us with requests to come. We wish that you had lived long enough to go to church and meet our family there, or go to Easter with our extended family. The people praying for you were endless.

Today your daddy and I took your siblings through the gates of the Magic Kingdom at Disney World in Orlando, Florida. 

We rode Thunder Mountain, explored Tom Sawyer’s tunnels and forts, sang along with drunk pirates and rode a flying elephant. 

There are people with babies everywhere. 

I know this is not a new phenomenon, having babies. I just notice them more, I guess, especially the really little ones, because that was supposed to be us. I was supposed to be walking around with a four-month-old baby on my chest, searching for some shade where I could peel you off of me and feed you. 

I know it would have made our lives so different, but I watch the kids in wheelchairs especially and I know it sounds crazy, but I am jealous. Jealous that those parents still have their disabled child to take to Disneyworld. I wish you could have experienced this with us, even though it would have made things 100 times harder and more stressful, I wish that was our reality. 

A few days ago, we rode Spaceship Earth (inside the Epcot golfball), and there was a reenactment of Michelangelo painting The Creation of Adam in the Sistine Chapel, complete with a Hallelujah chorus blaring through the speakers in our car ride. 

You are everywhere, if I listen. 

You were in Estes Park when I noticed our neighbors toting a baby. 

“How old is your baby?” 

“Almost 4 months.” 

“He’s beautiful.” 

“Thanks. We set up the shower to be his bed because we have a full house.” 

I laugh and commend their ingenuity, and then I walk past, and recall the conversations your daddy and I had about where you would sleep in our motor home before we even bought it; before we knew you would never be inside. 

You were in New Orleans when we visited First Baptist for church two Sundays ago. We were talking to an older man named Carl about our trip. 

 “We are going all the way across the United States and back,” we told him. “We have a motor home because we have three kids.” 

“Hallelujah!” He spouted. 

Oh yeah, we have four kids. 

Seven kids. 

I’m not sure how to answer that question yet. 

You were on Panama Beach, my toes in the white sand, your siblings reveling in warm sea water, you on page 86 of Caged Bird. 

         "My name was Hallelujah. That's what Ma named me, but my mistress give me 'Glory,' and it stuck. I likes it better too." ... For a few seconds it was a tossup over whether I would laugh (imagine being named Hallelujah) or cry (imagine letting some white woman rename you for her convenience)." 

 I dogeared the bottom of the page so I wouldn't lose page 86. 

You sneak up on me like that a lot. 

Anytime I run across your name, I take a second and think what a beautiful name you have. 

Your fourth day ended with Michelle driving down to meet you,

and you having an awesome yellow breathing spell of over an hour, during which she got to hold you and Piper sang her hilariously inappropriate Hallelujah song to you (the one by Leonard Cohen that talks about David watching Bathsheba in the moonlight). We sang so many songs together.

I hope that those entering our house during your days here on earth experienced the joy that so closely accompanied our sorrow. You brought praises from lips that had no other option. There was nothing else we could do. There were no doctors who could fix you, no surgeries that can make a brain grow. There was nothing we could do but cheer you on as you fought to breathe, and eventually, I think, we started to let go. We saw your struggle. We witnessed your pain. We knew this was not the way a baby should have to live. It’s hard for me to admit that I didn’t fight for you to live as long as possible. I did everything I could do – kept you safe for 37 weeks, and then you had to fight for yourself. And you did. I am so proud of your little fighting spirit.

That night, I took you to bed with me because I felt like you really wouldn’t make it through the night and you needed to be with me. The girls set up camp again on our bedroom floor and we all went to sleep, my three daughters, husband and I went to sleep together for the last time.