His name was Adam. And when I met him, I let out a huge sigh of relief. He was rather good-looking, and he seemed smart, strong, capable and perhaps most importantly, healthy. (Before you jump to any conclusions, this wasn’t a blind date.)
My friend Carrie had introduced me to Adam. They shared a ski house with friends one winter, and she thought she remembered him saying he had hemophilia.
A few months after my son, Khaliq, received his unexpected and shocking diagnosis, she offered to introduce us. I, of course, accepted right away. This would be the very first hemophiliac (other than my son) that I would meet. This was years ago – a time when there was no Facebook, Instagram, Twitter, and not even a local hemophilia group here in New York City.
We agreed to meet for lunch near Wall Street since he worked for a well-known investment bank. “Fantastic,” I thought. “Hemophiliacs can have normal careers!” Feeling hopeful, I made my way to Wall Street not exactly knowing what to expect.
As we sat down for lunch, after my audible sigh of relief, I continued to inspect him from head to toe. Then I realized I was probably being rude and making him feel slightly uncomfortable…so instead I began interrogating him. “What has it been like growing up with hemophilia?” “How has it affected your life?” “How did your parents cope?” “Do you have many friends?” “What do they think about your hemophilia?”
Thankfully, Adam was extremely kind and patient. He answered each and every question and even offered up more details than necessary. I think beyond it being his nature, he also sensed a deep desperation in my voice and probably my whole being. I needed to know that my only son, my baby boy, was going to be okay, and I needed to know right then.
When lunch ended, we said our goodbyes and went our separate ways. We spoke a few times after that, but never again with the same intensity and urgency. He had done his job, reassuring me that Khaliq could be an investment banker with lots of friends. He could be smart, strong, and healthy
I think, as mothers of hemophiliacs, we all look for those individuals – for the Adams – but that’s not always what we find.
I vividly recall my first national hemophilia meeting. I had never seen so many hemophiliacs before and never so many in wheelchairs, on crutches and with limps. After spending a jam-packed day meeting an entire community of people and learning all types of new and critical information, I felt so confused and overwhelmed. I went to my hotel room, collapsed on the floor and started sobbing. I felt so sad and hopeless thinking about my son’s hemophilia, his inhibitor, his frequent bleeds, and his prospects for the future. In my mind, I kept seeing all those wheelchairs and crutches. It was a complete 180 degrees from what I had felt after meeting Adam. I realized that I didn’t know what was in store for Khaliq after all.
Several years and many meetings later, I have learned a few things, or at least I’d like to think so:
â€¢ I will always be overwhelmed by the amount of information at the national meetings.
â€¢ The hemophilia community has some of the most wonderfully passionate and genuine people I have ever met – wheelchairs, crutches, limps and all.
â€¢ I do not know what’s in store for Khaliq, and I need to be okay with that. He could have a successful career. He could have many friends. He could be on crutches, and in fact, he has been on crutches numerous times. He could develop a limp and need a wheelchair. The reality is that anything is possible.
Although it is difficult to accept the possibility that Khaliq’s health will be negatively impacted in any way, I know that the chances of that happening are significantly lower than in the past, especially now that his inhibitor is gone (knocking fiercely on wood). And I am very mindful and deeply grateful for the tremendous sacrifices that many hemophiliacs that have come before my son have made to move us all forward – to get us to the point where we can say anything is possible and mean it in a positive way.
That is definitely something that my hemophilia family has taught me over the years – that anything is possible. I’ve learned that adversity not only makes for a stronger person, but quite often it results in an extraordinary person. All I need to do is look around me at my son, my daughters, and my hemophilia friends and family.
There are so many amazing examples of people in the community that are showing us every day that our kids will not only be okay but that they can thrive, hemophilia and all. When my son can be inspired by role models, such as Alex N., PatrickL.Rich P., Justin L., and so many more, paving the way, it really does feel like anything is possible. He can be anything he wants to be, and he can do anything he wants to do (as long as he’s factored up.)
Wendy lives with her three children Kaya (15), Tai-yan (15) & Khaliq (13) in Brooklyn, NY and is the vice president of HFA board member, vice president of the New York City Hemophilia Chapter (NYCHC).
*Author’s Note: Although I have two children with hemophilia and one who is a carrier, I chose to focus on my son in this article for two reasons – my daughter was diagnosed after I met Adam, and my son’s hemophilia has been more complicated to manage because of his inhibitor.)
**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 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 providers.