A Dad's Journey of Hope

I can't accept this! As an experience expert, you grow over the years as a person, as an individual and above all in terms of your experience. I had a conversation over the weekend with a father who is having a hard time accepting that he has sickle cell disease. Through a Facebook group he made a call with a panicky tone and was referred to me by a mother. As I talked to the father I recognized more and more of myself in his reaction, view of the situation and especially his fear.

“Andressa, I can't accept this!!!” He began his story with a sad tone in his voice. He told me how his daughter had been crying more often since about 8 months and got swollen feet. He was distraught, and after a long wait and investigations, it turned out that his little princess has sickle cell disease.

Guilt, anger and frustration

He felt guilty, scared, angry, and wondered how he could protect his little baby from this "scary" disease. I started my response by explaining to him that he is not alone, but that didn't go down well. He felt alone and he was in shock. When I noticed that he was getting irritated by my reaction, I immediately adjusted my approach. Eventually I noticed that he opened up and allowed me in for "help.". As a father, it was his job to protect his only daughter, and he had failed to do so. That's what he felt, that's how he saw it and that's why he felt so frustrated. After a long talk I shared my own experience with him and when he noticed that I was also in his place 11 years ago, he indicated that my story gives him hope. He had so many questions and wanted to know so much and he realized he had to start the acceptance process.

Share hope with sickle cell

I've talked to a lot of moms and a few dads over the past few days, and this dad has made me think a lot. After our conversation I made a list of action items for when you are in the acceptance process and the things you need to have in order so that you can give the best to your child. Every parent facing a chronic illness has a moment(s) of fear, uncertainty and anger, loneliness, and so much more. But as a parent, it is our job to assist our children at every point in this journey. When I sent him the list, he indicated that he will also share this with others who are in the same situation as him. I thought that was very nice, because it means that he passes on his “hope” to others.

We all have to go through the acceptance process in our own way, and as you do that you need to make sure you understand what the illness entails so you can work to reduce the likelihood of a crisis. It's not always possible to avoid a crisis, but it's always possible to go the extra mile to improve your child's quality of life.