Okay. I am determined to get through all the very worst days with you in the first year of this blog because it is necessary for you to know who I am and why I want to take this journey with you. That being said, not all the blog posts will be hard, but this one is. Why? Because it’s about that day.
I want you to clearly understand why I am sharing the details behind the worst day of my life. It is not for the sake of drama nor to draw from you sympathy or sorrow. If we are to talk seriously about the journey many children and young adults with disabilities face, then we must also talk about the very devastating day that may occur too early in their lives. I believe it is unrealistic to think or hope that all will get better. All will not, and I would be lying and leading you down a road of disappointment to suggest otherwise.
I don’t want to overshare, and perhaps I already have over the last 52 blog posts, but the harsh reality is that some of our loved ones will pass away before we do. So, my intention in all my posts, and especially today’s, is to help prepare you, in any way possible, to ease that pain. I believe sharing my day with Robert, on his last day, is valuable if it helps you remember that a woman named Juli understands heartache and hurts like yours.
The night before Robert passed, Chris and I struggled to maintain his oxygen saturation level above 40 percent after an unusually long and uncharacteristic generalized seizure. Robert’s twin sister, Victoria, was the one who recognized something was wrong and called our names in alarm very late that night to come to his bedside. It’s ironic that she was who alerted me to her brother’s first generalized seizure in our car, sitting beside him, when they were two and a half years old, and was now alerting us again to this devastating seizure. Twins.
This seizure was slow to release his body, and we used every rescue medication and emergency oxygen treatment necessary. If you have read the blog post I wrote recently called, “K-Bye,” you know there had been a very difficult few weeks leading up to this day. However, on this night as Chris jumped into Critical Care physician mode for our son, he foreshadowed what I would experience the next day.
“There. I think I got him back.” His words stunned me.
What Chris meant was that, after using rescue breathing on our precious Robert and recognizing the rapidly dropping pulse oximeter levels, he had revived Robert. I stood next to Chris over Robert’s bed in shock. I had never seen the pulse ox machine levels drop so fast or so low.
“One of us will need to spend the night in his bed,” Chris whispered.
“Yes, I know. I will.” I whispered back.
Then began the hours of trying to keep Robert’s oxygen mask on as he kept pulling it off. He mumbled all night about how he didn’t want it … but oh, did he need it!
When I was finally able to get him to fall asleep with his oxygen mask secured over his nose and mouth in the early morning of February 6th, I slipped from his bed and into the restroom. It was there that I had a long, intense conversation with God about what looked like the last days with Robert and how each of his siblings would be affected.
“Jessica can get here, but it won’t be right away. So, can You wait a few more months? Eliotte will be on tour, and she can’t just leave! James was just here, so he might need a few more weeks to return. And Victoria … I need to get her graduated from high school this Spring and enrolled in college, so You will need to give me a few more months. But … if this is the day … and You are taking Robert now, I trust You … and I think I am ready.”
It was the most honest and memorable conversation I have ever had with God. I remember it like it was yesterday. It was a raw, vulnerable show of me bargaining with God to control the situation.
Sometimes, I wonder if He thought,
“Oh, isn’t she cute. … ? She’s trying to tell Me when it’s the right time to bring her son home. Cute.”
I returned to Robert’s room to check on him. He was still asleep with his mask on. Since it was almost 8 a.m., I knew his nurse would arrive very soon, so I threw on some clothes to look decent when she arrived. I knew I would need to describe the last 12 hours to her.
As I began to quickly update her while we quietly prepared his morning medications, that same uncharacteristic seizure from the night before returned. We heard Robert from the kitchen struggling, and we ran into his room and began the exact same rescue protocols Chris and I had used the day before — the same emergency medications; the same rescue oxygen bagging method; the same attempts to keep the pulse oximeter numbers above 40. But they didn’t work. It was clear, as his excellent nurse advised me. Robert was gone. Right before my eyes and in my arms. No effort was spared, but it was his moment to be free. I called Chris at his hospital and stumbled through my words asking him to please come home because Robert had no pulse.
Many of you know that patients with progressive illnesses often have a Do Not Resuscitate Order or DNR legal document for their at-home loved ones. Robert always had this document visible in his room for everyone on his medical team. I just didn’t realize how important that one sheet of paper would be as the sheriff, paramedics and firemen entered our home. It was a necessary intrusion into his room, and it was anything but peaceful. It was loud and frantic all around his bed.
“Did you know? You knew, didn’t you?” Robert’s nurse asked me through her tears.
“Why? I don’t know if I knew. I knew something.” I answered.
“You knew because you never left the house this week,” she said as she looked straight into my weeping eyes.
And then it dawned on me that I wrestled with God because I did know. I knew it was happening, and I wanted more time to process and plan. I needed more time to prepare myself and our kids. I knew, and I was fighting back for every minute with Robert. I needed more time!
Chris arrived at our home. Tears streamed down his face making it almost unrecognizable. Our children and soon-to-be son-in-law all arrived within 36 hours. My San Antonio family, a close girlfriend, and the Christus Santa Rosa Homecare palliative care employee arrived. They were all heartbroken and available when we needed them most. I hugged Robert’s grieving nurse after we completed his final nursing note. She was a blessing to our entire family, and Robert loved her.
I opened our front door to let some people in, and then some people out. They did their paperwork. Everyone said their words. And then it was final. Robert was gone.
Chris held me and Victoria as we wailed with tears as the funeral home hearse pulled away. It was the hardest cry I have felt. It was the deepest pain I will ever know.
It was that day.
There was one very important gift I had given to my family years before February 6th, 2015 that I will forever remember. It was that green file folder upstairs in the file cabinet with Robert’s name on it. That folder was in place for that day. It was on standby for more than 10 years until I needed it. It contained the necessary funeral arrangement documents prepared when he was diagnosed with his rare disease. That folder was the gift I was able to share with my family that day. Because of that folder, we could focus on comforting each other instead of making decisions.
For all the planning and all the fight, I am grateful for God’s wisdom. For the life of our precious Robert Christopher I will always mourn, but also be thankful … even for that day.
Listening Library: Hold Us Together (H.E.R. and Tauren Wells)
“For now we see only a reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.” (1 Corinthians 13:12 NIV)
Hold Us Together
(from "Safety" soundtrack)
I will trust in You and know that You are with me forever I'll confide in You 'cause You're the only answer that matters Even in the darkness, You will be my light Even when I'm hopeless, You will be my guide I will not be shaken, I will not be moved Even in the chaos, I know that You're good You're the keeper, protector It is You that holds us together When everything else fails us It is You that holds us together Oh-whoa-whoa, oh-whoa-oh I will trust in You, Your thoughts and plans of me, they are good Mmh, I'll wait on You, I know that You will see me through Even in the darkness, You will be my light Even when I'm hopeless, You will be my guide I will not be shaken, I will not be moved Even in the chaos, I know that You're good You're the keeper, protector It is You that holds us together When everything else fails us It is You that holds us together You're the keeper (You are), protector It is You that holds us together (when every) When everything (else fails) else fails us (it is You) It is You that holds us together (Together, Holds us together) You're the keeper, protector (together) It is You that holds us together Everything (else fails us) else fails us It's You that holds us together (hold us) You're the keeper (hold us), protector (oh, protector) It's You that holds us together (oh, You) When everything (everything) else fails us It's You that holds us together You're the keeper, protector It is You that holds us together When everything else fails us It is You that holds us together
Songwriters: Gabriella Wilson / Josiah Bassey
Hold Us Together lyrics © BMG Rights Management, Walt Disney Music Company