I am starting this blog to share my testimony while raising a child with DiGeorge, also known as 22q11.2 Deletion Syndrome. Throughout my life, I have found that I am not special, meaning my situation is not unique. I have often felt alone in this journey, struggling to find other fathers who can relate. It seemed so much easier for my daughter’s mom to connect with other mothers. This blog is a platform to bridge that gap and share our common experiences as fathers.
I am an active-duty service member throughout my daughter’s life. That adds more stressors to the family and my daughter’s routines. I will maintain anonymity because I will be very vulnerable to ensure that other fathers can relate. For instance, when my daughter was born, I was ready to blame the world. I was so angry with God that this happened to my daughter. I was also very frustrated that the medical conditions were happening to her; I wondered why it was not happening to me. When she was born, I noticed her turning blue the next morning. I figured it was just the lighting. I went to get home to get some rest. When I came back, she was gone. A nurse also noticed the cyanotic episodes and took her to the NICU for further monitoring. I will explain more in the first letter.
I will give a disclaimer: I am learning to view the situation from a Christian perspective, which has been a transformative journey. It has helped me see my child as a blessing to the world, and our struggles as opportunities for growth. I am not a preacher or a theologist; I am just a regular guy who still cusses when I talk. But I will discuss my spiritual journey and how God’s grace has provided for us, in the hope that it may inspire hope and resilience in others.
As I navigate the challenges of being a father to a child with DiGeorge, I’ve realized the importance of connecting with others who share similar experiences. I’m learning to be a man of God while being the best father possible to my daughter. I believe that by sharing my journey, I can connect with at least one other dad who is going through something similar. Remember, you are not alone in this.
In the worst case, no one reads this. But, a few years from now, I can go back and read through the challenges I’ve overcome. This is a good reminder that DiGeorge does not define who my child is or what she can be.
Thank you for joining me on this journey.
Life with DiGeorge 