On Jan. 4th four years ago I got the bone chilling, heart dropping news that Ellie had a brain tumor and needed immediate surgery. It’s so hard to believe it’s been four years of brain surgeries, MRI’s, Clinic Appointments and chemotherapy. I will never forget the three weeks I spent in the neuro ICU at Children’s where kids came and left. It was so hard to watch the kids walk out and parents thrilled that the tumor was completely removed. It saddens me to say I was and am still jealous of those families. I will never forget the many 1am, 3am, and 5am’s I spent in the hallway of the hospital crying just trying to make it threw to the next day, hoping and praying that our journey would be soon over like many kids before her. Sadly that was not our path that God put us on.
We try so hard to make sure Ellie lives as normal as a life as she can possibly have. But I am often reminded that her life will never be normal and forever she will have to fight this brain tumor. On Jan. 5th (Today) we celebrate her 9-hour surgery 4 years ago. Although I wish the outcome were different I would have to say I am extremely pleased and grateful for every day we have with Ellie. I will never forget crying to the neurosurgeons to just please bring my baby back to me before they took her to surgery. And he did! Although she will struggle with learning and developmentally disabilities for the rest of her life No one can take her sweet kind quiet temperament away from her. Ellie will forever be our Ellie. Even though we have gone through moments when we were really unsure if she would be our Ellie again, every time she has pulled through and came back to us.
Today we took her out to dinner to celebrate four years and as she looked up at the waitress and placed her order in a very clear loud voice I had never been so proud of my Ellie. So I raise my glass and cheers to having Ellie for these past 4 years when we were not even sure if we where going to get a week with her, let alone another day. Life is a roller coaster and we are trying our best to enjoy the ride. I am sure we have not hit our lowest of low or our highest of high points with Ellie and there are many rides ahead of us. Loving Ellie today and so proud of how strong and amazing she has been through this journey called life.
A mother with a battle ahead of her.