As my son stays busy chasing his dreams, pride and sadness mingle
I still see the 8-year-old boy coming to terms with severe hemophilia A
Written by |
A week ago, my oldest son, Julian, left home to begin rehearsals for a musical that could open doors to a long-term career. The show is a parody of the slasher movie “Saw.” Its producers hope to have him rehearse for a few weeks in San Antonio before sending him to other parts of the country to perform with local casts. This opportunity for my boy makes my heart sing.
When not doing a show, Julian lives with us in Las Cruces, New Mexico. While he continues to audition for shows across the country, we support his independence by providing him with a free room and meals. His flexibility at work helps him maintain steady clients while pursuing his Broadway dream.
I know my son is almost 30, but I still feel a little sad when he leaves. Yes, he is a grown man, but the bond we share runs deep and strong. My son has a bleeding disorder, severe hemophilia A.
I remember the times we struggled with the fear of needles and the countless infusions. Our family fought to help him overcome a terrifying ordeal, especially during those early years when infusing Julian as a youngster meant holding him down while he cried and trembled. When infusing Julian, my wife held his arms and legs down so I could locate a vein and successfully administer a vial of factor VIII. Watching him grow into a confident young man who now manages his condition independently fills me with pride and hope.
‘I am a big boy’
About 20 years ago, our saving grace took me completely by surprise. I called Julian to the kitchen table, inwardly bracing for our customary battle with the needle and the infusion. I asked Julian to put his right hand on the table and make a fist. When I brought the needle near him, I prepared myself for the usual outburst, but it did not come. I accessed the vein on the top of his right hand between his third and fourth fingers.
Throughout the process, he remained calm and in control. He did not cry a drop or scream one peep. After I finished, I asked him, “Julian, bud. You didn’t scream today. You stayed still. Congratulations, my boy. Can you tell me why you didn’t move?”
He replied, “Well, Dad. I am in third grade now, and we do not scream because I am a big boy.” I told him he was brave and that I was so proud of him. We never struggled again. Over time, he began to infuse himself with factor VIII, gaining confidence and independence. I stood back as a proud papa. My son eventually took over complete control of his medical condition.
As I look at the almost 30-year-old man standing in front of me, I still see the little 8-year-old boy managing a bleeding disorder, which makes my heart swell with pride and longing.
“Goodbye, Dad. I’m not sure when I’ll be back home. My dream feels like it might begin to take flight,” he said before giving me instructions on what to do if his factor product came to my house. “I hope to be in one place long enough to give a good address to the hemophilia treatment center when I need more factor. Don’t worry. I’ll cross that bridge when I get there.”
I felt a lump in my throat as he drove away from our house. I thought, “Yes, son. I know you are a fully functioning adult, but part of me still sees my 8-year-old. I want to hold you in my arms when fear overwhelms you, but I know I must let you go and trust that you know what to do. I know these things, but I still hold my little guy in my heart.”
Julian called me the next day. He sounded excited as he talked about the rehearsal for “Saw the Musical.”
“Dad,” Julian said. “I am so happy that I said yes to this opportunity. Just so you know, I am halfway covered with fake blood, and you know what? I am having a great day! I love you.”
I hung up the phone and smiled. My son sounded happy, and that joy filled my soul, reminding me of the unbreakable bond we share and the pride I feel as I watch him embrace the next chapter of his life.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.