You had a really rough day a year ago. Facebook reminded me with a memory. You were at Children's with pancreatitis, and your medi-port stopped working. It stopped working after seven years of working like clock work. We needed a line study to understand what was going on with your port. A radiologist was called in after hours to find out what was going on with your port. She was awful, no bedside manner, and obviously very irritated to be called in after hours. She didn't care about you as a patient, as a person. When we had problems accessing you, she walked out of the room, and never performed the study. I remember going to bed being very frustrated knowing we would have to go down to radiology first thing in the morning to repeat the study. I was even more worried that the study would reveal that your port didn't work any longer, and that you would need medi-port surgery. I was worried. I was scared of the unknown. But in the middle of uncertainty, here was always a purpose. A purpose to fight for your life, for you. I loved every bit of it, and I miss it now.
I know it sounds crazy. I know many people simply shook their heads when they knew the life we lived. They simply shrugged their shoulders, and couldn't understand how we did it. They wouldn't trade their lives for ours ever. But I sure loved it. I loved being your mom. I loved waking up every day with my first thought being about you. Before I even could think much, I knew I had to get you out of bed, get you ready for the day, get you your medications, give you your bath, do your vest treatment, and the list goes on. You depended on me to live. It was a huge honor and responsibility. It was the most meaningful thing I have ever done in my life, being your mom.
I miss the purpose you gave me. I miss the selfish life I lived. I miss the happiness I shared with you when you had a good day and I do miss fighting for you at Children's. The fighting that kept you alive many more years than anyone would have imagined. I fought for you so hard because I knew what you needed. I fought and we had so many victories together. Times when we could see a doctor or nurse suddenly realizing that they needed to follow this mama's lead. It gave me a huge purpose to know that I could make a difference in your sometimes very hard life. I think I know that I made it better. I loved being your advocate. I loved being your mom.
In my life without you, I am searching for my new purpose. I know I do good things at work. I know I work hard at being the best mom I can to your sister. I know I do my best to be a good wife, be a good friend, doing the right things in life. But those roller coaster days where I had to fight around the clock to keep you alive are not here any longer.
This week, I got to see fruits of our work at Children's enfold. We put on the first Family Partnership Retreat. It took a year and a half. We had a full room of parent partners all invested in Children's and hospital leadership brainstorm about family engagement. The energy in the room was high. The passion and compassion were real. It was about our kids. It was about our families. It was about making Children's Hospital a better place. As I was leading three groups about family engagement at the bedside, I felt how I got carried away. This is what I know. This is what you and I did best. There are so many good things happening at the hospital that will help families now and in the future. I will admit it. I am a little jealous we don't get to experience it. But I did feel the purpose. The purpose of making Children's a better place. A purpose that we're doing good things for a place that continues to matters so much to me.
As I was driving home from this beautiful day at the zoo, I got a phone call that one of your friends had passed away. A big last seizure. This girl paved the way for you in the school system. She paved the way for you at Bal Swan, and later at Coyote Ridge. It makes me breathless thinking what her family is going through right now. It is just so unfair. I did what I know. I texted the mom to let her know I am here for anything she needs, and then I took your dad and Max and walked up to your bench. I just didn't know what else to do. I sat on your bench and tried to understand why this is happening over and over again as the sun set.
And with each sun rise and each sun set, I will look for my purpose. I see it as one of your parting gifts. To not just go through the motions, but to truly live. To truly have a purpose. To truly enjoy life and its beauty when no one else can see it.
Sweet Jacob, I love you to the moon and back,