It is with a broken heart I share with you that Landon has passed away. After 7.5 years of fight, Landon’s final days led to his passing, at 9:53 pm on Thursday, April 22nd.
Landon’s life has been full of ups and downs. We’ve battled together through illness, seizures, hospital stays. He and I have fought hard, side by side, through so many things. My commitment to him was always to fight for him with all that I have, as long as that was what was right. Over the last few weeks it has become increasingly clear that his fight was fading, and the hardest, but most loving thing I’ve been called to do as his mother was to be willing to stop my fight too.
I had the most unfortunate of burdens of knowing what this looks like. I watched Nolan go through a similar pattern nearly four years ago. While that burden is unbearable, and this circumstance unimaginable, it allowed me to be honest with myself as soon as I saw the same signs in Landon.
After some particularly stressful moments in the last couple of weeks, I’ve had very transparent conversations with Landon’s palliative care Doctor and case manager. I knew he was getting weaker, I understood what that meant, I sought their support giving him the best, most loving care we could give. When we talked Tuesday to say he was rapidly declining again, and it was time to just comfort, they immediately worked to readmit to hospice, provide comfort measures, and ensure we were supported and surrounded by a loving team that already knew him well. I had the blessing of spending most of his final hours side by side, holding him, talking to him, and admiring those long eye lashes and sweet cheeks I know so well.
By Tuesday night, my parents were in town to help, Justin was aware and working on a plan to get home days sooner than planned, and family members were aware of the seriousness of the situation. At this time I felt fairly sure, but Landon has fought hard so many times that it still wasn’t clear if we were dealing with days or weeks.
Wednesday morning I awoke to a white world. Thick, wet, completely out of place snow had blanketed my view. It was as if God said – just for today, I’ll hide the blooms, I’ll hide the green, we’ll forget about spring, and instead welcome a blanket. I pulled grief up over my shoulders like a blanket that day as well, welcoming its weight, its cover. Grateful that the outside world looked as out of place and wrong but beautiful as the inside felt. I hid the brave, the optimistic, forgot about the fight, and instead welcomed grief. Landon was declining further.
It was now certainly not if, but when, so Justin worked hard again to scoot his flight even earlier, and thanks to a supportive management team, now had a flight home in style arriving right in town no later than 8:00 pm Thursday. His parents were on their way as well, with a similar arrival time. Their vehicles pulled in the driveway minutes apart, and ahead of schedule, giving everyone a chance to see and say goodbye to Landon and to support one another. Similar to Nolan, it was as if Landon heard “everyone is here, we’re ready when you are”.
Everything was as peaceful as one could have hoped. Losing a child is unimaginable. Losing two will certainly prove to be as impossibly hard as it sounds. But both times, I’ve been able to provide a loving, comforting, calm environment. One with love, prayer, music, stories, family, and hugs. Both times those on their way arrived just in time. Both times, the boys final breaths were in my arms. My biggest comfort today is knowing that this time, instead of death splitting them up, it brought them back together.