To My Mother: Thank You for Teaching Me Everything I Know

I learned how to be a caregiver from my mother. Ruby Jane loved my children with complete devotion. While I made her a grandmother, she made me the man I am today.

I observed her care for not only family but humanity. She spent years serving as the vice president of a labor union, providing help to those who needed someone to stand beside them. She proved successful in her efforts, as both workers and business managers sought her help.

When my first son came into the world, she sat in the room with my wife and me as doctors diagnosed him with severe hemophilia A (factor VIII deficiency). I remember seeing the panic in her eyes. She did not know what to say, but if I wanted anyone in my corner, it was her.

She stood with my wife and me and covered us with love and assurance, the way a warm blanket provides us with a sense of security. Her actions showed me that we would not face the future alone because she remained in our corner, ready to fight an unknown enemy. Her strength reminded me that I came from a formidable warrior.

The moment the doctors left the room after delivering the life-changing diagnosis, my mother asked, “When can we take him to the zoo?”

I didn’t realize at the time that her question was teaching me a great lesson: Remember, life will be different, and my son will require medical attention, but do not let hemophilia be the only thing we discuss. He needs to know that life is more than a bleeding disorder. Take time to show him the beauty of creation.

I remember her question to this day and try to go on adventures with my stinky boys. While we explore together, we learn about what makes us tick. We grow because we realize that life is not about a diagnosis but the quality of time we spend with one another.

Another lesson I learned from my mother came from a cardboard box that she gave my oldest son when he was a toddler. On the front of the box, she wrote, “My dearest grandson, every time I thought of you today, I put a penny in this box.” My boy opened the container to discover coins filled to the top. It was her way of telling him that not one minute in a day goes by that he is forgotten. At that moment, I learned the importance of telling my children every day that they matter at every second.

As a side note, my oldest son is now 24 and keeps the box, along with the coins, in a prominent place in his apartment. I like to think that my mother watches over him and reminds him that he maintains a central role in his family’s life.

Another key lesson I learned from her was to end the night with a good bedtime story. Some of my favorite childhood memories involve my sister and I being captivated by bedtime stories that my mother read. I never felt safer as a child than in those moments spent with her at the end of the day.

I passed along the art of storytelling to my sons, as this was how we ended each day together. No matter how hemophilia reared its ugly head, my boys knew that they had a safe place to rest their heads each night and that their parents would continue to look over them and guard them against any harm.

I feel confident that I learned many other life lessons from the mighty Ruby Jane. She died almost 10 years ago, but her presence still looms large in my family’s life. I still hear her voice in my head, instilling in me the confidence to be the husband, father, and man I hope to be. Her unwritten life instruction booklet continues to guide me as I love on her grandchildren and teach them what she taught me.

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Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.