One year ago yesterday (October 17th) Caeleb had his 6th port placed. It has been the best port he has ever had. His daily infusions are going well, his inhibitor is in the process of being tolerized and the best news is that he has not been in the hospital since then.
Life has been good.
Who knew that almost a year later I would give a TEDxABQ talk on living with chronic illness and holding on to hope!
It was one of the most difficult and rewarding experiences of my life. I had always hoped that one day I would have an “idea worth spreading” and didn’t realize that living with hemophilia would place this talk on my heart.
The realization I had while working on this talk was that my message is not just about hemophilia, it’s about living with chronic illness. Old, young, rare disease or one more common than others, being the caregiver and the one affected.
When you are a caregiver your life often centers around the other person’s illness. You are put on hold and finding your way back to a ‘normal’ place is difficult.
When you are the person with a chronic illness you often think, “How can I go on? Will I ever get better? I just want to live a ‘normal’ life.” You have to find the best in every day, sometimes every moment, and keep hope alive so that you can get to the “other side” of the bad days.
I want to live a life filled with passion and purpose and I think it’s “such a time like this” for me to spread that message wherever I am able. Hemophilia is yucky and painful at times and I hope my sons are learning that it is part of who they are. Not all of who they are, just part.
I love them the way they are and I wouldn’t change a thing. They have taught me so much and I am a better person because of the struggles. It sure looks like having this bleeding disorder has already made my 19 and 9 year old sons more compassionate than I ever dreamed possible.
Keeping hope alive while having a chronic illness is not easy. You can let the illness get the best of you but the important thing is to move forward and give your illness the best you have to offer. A chronic illness can destroy a lot of things but holding on to what is important in your heart and soul is something that can’t be taken away.
During some of the rougher seasons of living with hemophilia, especially with Caeleb, I felt like life was crashing down around me. Fighting my way back to finding hope was some of the hardest times I have ever experienced. Deciding that despair and hopelessness were no longer in my vocabulary was life changing.
Won’t you join me?
Let’s all become prisoners of hope!
