A Father's Day Blessing

First and foremost, before I get started I want to thank the founders of the PCDH19 Alliance for starting this group for all of us to join. Being a part of this group has been nothing but support and motivation for both Jennifer and me. Knowing there is a group of people out there going through the same experiences as we are is so beneficial. I don’t know where we would be without the help and support of this group.

With that said, I was honored when Julie asked me to share my thoughts on what it is like being a father of a child with PCDH19. Instantly I started thinking about what theme I wanted to present in this opportunity. My first thought was that it is a blessing and not a challenge to be a father of a child with PCDH19. I was very excited to begin.

I sat down with Jennifer and we started to discuss things that I could talk about. I told her my thoughts on about focusing on the blessings. She pointed out that there was a flaw in my plan. She reminded me that there were times that I didn’t think there were blessings, and if I was to go on further I might be lying to everyone. It hurt me that she said that, not because she pointed it out to me, but because of the amount of truth there was in her statement.

It is incredibly challenging to be the father of a child with PCDH19, and likely any child with special needs and sometimes we do not focus on the blessings. I began wondering, “have I been good enough to be blessed with a daughter like Jane?” It has made me realize that I have made mistakes and that I am only human. I would hope to believe that I am not the only one who has questioned, “why this is happening to us?”. I wonder, Why is this happening to my beautiful daughter Jane? What did we do to deserve this?

When we found out that Jane had PCDH19, I really didn’t understand the depth of everything and everything that would come with this diagnoses. I wasn’t nearly as prepared as Jennifer. Instead of focusing on all the great things we were going to accomplish, I started to worry about the things we might not be able to do. I was more focused on the negatives and not on the positive things that would also come. I am ashamed to admit that. Instead of helping her grow, I was possibly standing in the way.

Luckily, through this group, I was able to meet and see a bunch of wonderful children and adults who have shown that everything is possible, even with PCDH19. I know it sounds a bit corny, but it is true. Seeing all these amazing people accomplishing all these great things has opened my eyes.

Jane has come a long way in her 8 years. Although she is non-verbal and has never said she loves me, I can tell every day that she does love me. She is a very smart, independent girl that surprises me every day. She knows how to butter us up to get what she wants, and is relentless until she gets her way. She knows how cute she is too. It is a pleasure and blessing to be her father.

Happy Father’s Day to all my fellow Fathers out there.