Charlie's Angels Fill A Room With Care

On May 24, 2011, the day after my son Charlie passed away, as I was writing his obituary, there was one thing I was certain about, in a sea of total uncertainty: I knew I wanted to direct all of the love, energy, compassion and heartache that was spilling over to Charlie's dad and I, from everyone who was so touched by Charlie’s sweet, short and difficult life, to Children’s Hospital’s and Clinic’s of Minnesota. We asked that any memorials in honor of Charlie be directed to the Pain and Palliative area. They had been so instrumental in supporting the PICU team in trying to understand how various meds and doses of those meds affected Charlie so differently from the ‘norm’; this was so critical to developing a good plan of care for him, whenever he was hospitalized. Dr. Kaci Osenga, in particular, worked closely with the PICU intensivists to help Charlie wean from the strong combination of pain and sedation meds that he was on, after coming out of a simple brain MRI & orchiopexy procedure on November 17, 2010. Those 35-days of medication weaning were some of the most difficult days of Charlie’s life, and as parents, watching your baby suffer through drug withdrawals, feeling so helpless, so powerless; your emotions are real, raw and so very exposed. And for me, living in Charlie’s room in the PICU, I could not help but bond with the nurses that were there, at all times, in his room, caring so expertly, so tenderly for him.

The 44-consecutive days that we spent in the PICU was our longest admission at Children’s. It was also to be Charlie’s last Thanksgiving, Christmas and New Years. I had moved into Charlie’s room, from that very first night, which really is one of the BEST things about the PICU, that parents can stay right in the room with their child, and both Charlie and I bonded with several of the staff on that floor – certainly our nurses! They cared for Charlie with more than their professional skills, they loved him. You could see it on their faces when they talked with him and played with him, or when they cared for his central line site or his portacath site, or when they gave him a bath and washed his hair or when they treated him to his most favorite green mouth swabs, or when they turned on or opened any of his musical toys – they wanted to make him feel cared for, in the midst of all that he was enduring. If any one of them could have fixed him by snuggling him or playing with his hair over and over again or reading him his farm stories, or keeping that V-tech laptop going around the clock, they would have!

Over the next few months, Charlie spent a lot of time in the PICU in February, March, April and finally, in May of 2011. It was during the May hospitalization that Chris and I finally began to understand the pattern that Charlie was in, and that had ‘we’ (his parents and the medical staff) not continued to intervene, putting him on life support, on a monthly basis, Charlie would have already left us. It was a staggering realization and I vividly remember sitting in that conference room on the 5th floor and coming to a certain peaceful, acceptance of the reality of what we facing: that Charlie deserved the kind of life that we could no longer give him and it was time to let him go, peacefully and with the dignity that he so deserved. With all of the emotions swirling over me, through me, out of me – I will never forget that moment in time. I will always be grateful for the compassion, gentleness and ease at which we transitioned from critical care to hospice care.

And so, for me, personally, the reason Children’s will forever hold a special place in my heart, the reason I will continue to work to support this amazing organization, is because more than the expert care, the incredibly kid-friendly touches to everything in the hospital, more than the vivid paint colors and fanciful artwork installations, more than the red wagons and bikes in the hallways, it is the LOVE and extraordinary compassion, combined with expert care, that I witnessed, on a daily basis, for Charlie. The immense loss suffered in losing Charlie has opened my eyes to a world that most parents do not, thankfully, have to experience. But, I still want people to know that the experience you would have with Children’s will make whatever daunting journey you might face with your child, just a bit easier to navigate.

Please consider supporting my effort to honor Charlie's memory by funding a room in the PICU, in his name!