I recently had the opportunity of volunteering to be one of the nurses in the infusion center at the annual HFA symposium. I had the privilege of working with two amazing nurses that work in the hemophilia community. I quickly realized that they both had so much knowledge in the hemophilia world! l learned so much from them. My only experience has been with my son, Michael, who is almost 26 years old.
Michael has severe hemophilia B with inhibitors. My only experience has been with infusing a bypassing agent because of the inhibitors. Although my experience has been limited, at the Symposium I saw so many situations that were very similar. As I watched parents bring their children in for infusions, it brought back so many memories for me. I assisted the other nurses as much as I could. To be honest with you, I found myself remembering a lot of things I had forgotten.
I watched the children and their parents. I remembered what it was like to help my little one with infusions. I listened to the cries and the emotions that were felt in both the children and the parents. My heart broke and ached and I saw the scared looked in the children and the hopeless feeling that the parents had. It brought back memories of how the infusions took place, how everything needed to be just right for my son. We needed to be at the same place and use the same supplies. Anything out of the ordinary was as scary for these children as it was for my son.
Often I wanted to tell these parents that this will all change. That your son or daughter will learn to accept this as part of their lives. That with time, the infusions will get a bit easier and that they will understand that with an infusion, their pain will be less. With growth comes understanding.
Unfortunately, with the growth comes a different feeling. As a parent of an adult with hemophilia, the same emotions are still there. There no longer are battles about needing to be infused….thank goodness! But the worry of a parent never goes away. I used to watch for signs of a bleed and knew we were facing an infusion. Now I wait for a text message telling me that a bleed is going on and I am nowhere near him! The anxiety of worrying whether he is using as much factor as he should, whether he has enough supplies and can find a vein is the same feeling I felt when I needed to help him. I worry about him spending nights with pain and I am not there.
As a mom, we will never stop worrying but we know that we have given our children the knowledge and tools they need to accept their hemophilia. I realized during that experience in the infusion center that our children will become adults and that over time acceptance will become part of their lives. We can’t change their diagnosis but we can help guide them into adulthood and being on their own. We are always a phone call away…
Karen, her husband George, and her adult son, Michael, live in Ohio.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure the accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare provider.