There are certain undeniable truths about having hemophilia. These are the truths that create the unmistakable connection with one another we feel every day. Some of them are unfortunate truths, of course, like the inevitability of pain. Some of them are fortunate truths, like the character that comes along with learning how to take charge of our own health and treat regularly. And some of them are just cold, hard truths, like the fact that whether we like it or not, we cannot get through this thing on our own. To me, that’s one of the most important truths about having hemophilia. As independent as patients are able to become throughout their lives, we most certainly need a support system with us as well. As we get older, we may need that support system less and less, but as young hemophiliacs, it is absolutely necessary to have strong people in our lives to be our advocates. For what is probably going to be my final blog post for HF Healthcare, I wanted to talk about the woman who has been the biggest part of my support system, my dedicated advocate from the day I was born, and the best mother a hemophiliac could ever ask for.
My mother, Karen Bishop, has been a registered nurse for more than 30 years. She’s a dedicated medical professional, a loving, hard-working person, and 23 years ago she found out her son was born a severe hemophiliac. Because my mom is a brilliant nurse, as well as a hemo mom, I thought she would have a unique and important take on what it means to be an advocate for young patients. I sat down with her and asked her some questions about what it was like to be unexpectedly thrown into the world of hemophilia. I truly think that parents and patients can benefit from reading some of her answers to these questions. Thanks again, mom!
The fist thing we talked about was the moment I was diagnosed. She’s a nurse, so I knew that she would’ve known a little bit about hemophilia, but I was eager to see exactly how she felt the moment she first heard I was a hemophiliac.
“I remember the moment clearly,” she said. “You had a bleed at birth. The pediatrician said, ‘I’m going to send you to another hospital for a workup on Michael. Think of it as an opportunity to do some shopping in the city…worst case scenario, he has hemophilia.’ Then the pediatrician looked up at me and said, ‘Well, you’re a nurse, so I don’t have to explain any of that to you.’ But the truth is, in nursing school you get about ten minutes on hemophilia. That’s it.”
I can’t image how scary that must be as a mother. Actually, I thought being a nurse would instantly be a benefit to my mother, but I think everyone assuming that she knew exactly what was going on probably made things even more difficult on her. So, my parents took me to the other hospital, and that’s where I was officially diagnosed.
“So, our trip led to the ‘worst case scenario’,” my mom said. “I really wish the pediatrician would have chosen better verbiage. Those words were all I could think of while we were there. The worst.”
My mom had a lot to learn about hemophilia. Like she said, she only had about 10 minutes of education on the subject. So my next couple questions had to do with that. I wanted to know what it was like learning more about hemophilia. I also asked her what it was like to have her son as a patient, and what it was like to be a mother and a nurse simultaneously.
“I had to separate myself from being a nurse and a mother,” she said. “I had to be a mother first. I read everything I could get my hands on. I got on the Internet and tried to find answers to the many questions I had. The nurse at the HTC gave me some avenues for research, and I followed them all.”
This is something with which a lot of hemophilia parents can relate. This conversation really made me appreciate all the work my mom put in to make sure she was educated enough to care for me. I also think it’s great because I know there are more resources available online now than there were then, so that gives me hope that there are even more avenues for research for parents now. After this, I asked her to talk more about the differences between being a nurse to me, and being a nurse to strangers. Particularly I wanted her to talk about starting IVs, because I knew that would probably be a very different experience.
“I have started IVs on hundreds of patients,” she began. “Nothing came close to the moment I had to poke a needle into my little boy. Nothing. What I wanted to do was hold you and let someone else be the bad guy. Bu that meant going to the ER and spending long hours waiting and explaining. I wanted to make it easier for you so I made myself stick you. I’ve always had an excellent track record at starting IVs, but not with you. I was nervous, scared, and I didn’t want to hurt you. I knew if I kept trying and pulled myself together, our lives would be easier and be better for you. So, what was it like being a mother and a nurse? I was never a nurse when I was taking care of you. I was your mother. People would say to me, ‘Oh, it’s so lucky that you’re a nurse! This should all be easy for you.’ But that just isn’t the case.”
This, I think, was one of the most important parts of our conversation. My mom touched on a lot of important things here, and they’re all things parents of hemophilia patients have to deal with. First of all, making yourself the bad guy. That’s really awful. I can only image what it was like for her to take on that role in order to treat me. I hated needles, so of course I hated the fact that my mom was trying to poke me constantly. I don’t know if I would have the strength to get through that, and to be able to give my child an infusion. She also spent a lot of time during this portion of the conversation talking about how she had to try very hard to pull herself together. This is important because I, as the son and patient, don’t remember that part. I genuinely don’t remember her struggling and desperately trying to make things work. So, if you’re a parent reading this, please don’t think that struggling is a sign of defeat to your children. In my mind, my mom was always doing exactly what needed to be done. As an adult, I can appreciate the struggle she went through to get me my factor, and as a kid, I never thought of her as failing in any way. I think that’s an important thing to keep in mind if you’re ever having a hard time infusing your child.
As you’ll see throughout this conversation, we jumped topics frequently. I wanted to try to cover as many things as I could, without making this blog post too long. The next thing I thought I should talk about was hospital visits. I know there are a lot of hemophiliacs who have to spend a fair amount of time in a hospital, I was certainly one of them, and my mom was always there with me. I asked her to share what those experiences were like for her.
“Some of the best moments of my life were spending it with you, in the hospital,” she said. “After the chaos was over and the starting of the IV was done, we got to spend a lot of time together. I read you books and we talked about everything. I slept on a hard, uncomfortable couch, ate pretty crappy food, and got so tired of telling medical staff the same story over and over. It was a teaching hospital, and I did a lot of teaching! But those moments were precious to me.”
I thought this was a really great answer. It’s another way in which hemophilia patients and their families can turn a negative experience into a positive one. My mom really taught me a lot by having this attitude. Yes, we’re in the hospital. But you know what? We can’t do anything about that right now, so let’s just hang out with each other and watch some movies. Keeping positive in times like this is really important. Being at the hospital may seem like the end of the world. But honestly, I grew to love it when I was younger. It’s always unfortunate when it happens, but never underestimate your ability to make the best of any situation. We had a lot of fun in the hospital.
At this point in the conversation, I wanted to transition into something a little more specific about parenting. I remembered a lot of conversations with my parents regarding safety. I really just wanted to be a normal kid, but my parents had to keep my safety in mind, and I know it was hard for them to make the decisions on what to let me do. So my next question for my mom was about that balance. I wondered how she found the line between keeping me safe, and letting me live the life I wanted.
“ I always wanted to keep you safe,” she said. “Period. I still feel that way today. But, when you were entering kindergarten, you asked us [your father and I] to please not make you wear a helmet on the playground. You didn’t want to feel different from the other kids. I called and talked to your nurse. She told me it was time to decide what was more important – you being independent and part of your class, or me being protective. You lost the helmet and I started letting you take more chances. I made mistakes, but I wanted you to try things and be as normal as possible. I just held my breath and prayed.”
This is another thing with which a lot of parents can relate. I remember these moments very clearly. I just wanted to be a normal kid. I wanted to get hurt, brush myself off, and keep going. I wanted to be rough and do everything the other kids were doing. I honestly didn’t care if it caused a bleed, and I think my parents had to come to terms with that. They just had to let me be a kid and figure things out on my own. So I was able to test my limits. And yes, I got seriously hurt a couple times. But I still think that my parents made the right decision in letting me be as normal as possible. They kept an eye on my when I needed it, and of course helped me treat when that time came. They were also always there when I had to go through pain, which is the next thing I asked my mom about. I hate seeing people I love go through any sort of pain, so I was very eager to talk to her about how she dealt with seeing me in so much pain.
“There is nothing worse,” she began. “I mean that. Before Factor VII was approved for usage in the U.S., you had many untreated bleeds. You would cry yourself to sleep. You would sleep with us and we would do anything we could to make the pain go away. At that age, and at that time, Tylenol with codeine was the only pain medication that was safe. It was pretty ineffective when you had a bleed that wasn’t being treated. I remember there was not a better feeling than when you would ask for something to eat, or when you would fall asleep. I knew the pain was coming to an end.”
This is one of those sections where, while there isn’t a lot of advice, the importance is in knowing that other people are experiencing the same things as you. I didn’t put this in here because I think every hemophiliac is going to experience pains like this. I put it in here because I know there are parents and patients who need to know that there are other people who have experienced stuff like this, and that this pain is not the end of the world. It won’t last forever. I promise.
I also wanted to ask my mom more specifically about being an advocate for me. I feel as though that’s a big part of a parent’s job. Especially considering that we didn’t have a homecare company to help us along. I wish more than anything we would have, as I’m sure that would have made things much, much easier on my parents. But my next question for my mom was how she went about her advocacy, specifically with my schools and with medical staff who may not have understood my unique diagnosis.
“Being your child’s advocate is the most important job any parent will ever have,” she said. “With you, it was even more important. The ER trips were always challenging. You have to tell the medical staff what needs to be done and why. That is hard to do as a nurse. I am used to the physicians telling me what needs to be done. Educating the medical staff is trying, but it’s so important. Helping them realize you aren’t the enemy, you’re on the same side. I’ve learned that medical staff can be afraid of the unknown. So I tried to stay calm and educate. Bringing in a hemophilia nurse to the school was invaluable. She would meet with the class as well as the teachers. Even though it’s sometimes uncomfortable to try to educate people about your hemophilia, it’s something that needs to be done, and it benefits you so much in the long run.”
My final question was really just one for me. Since I’ve graduated college, I’ve done my best to begin a career in the hemophilia industry. I’m incredibly passionate about working with other hemophilia patients, and I’m really trying to get my foot in the door. As I was talking to my mom, I realized that I hadn’t ever actually asked her what she thought about my decision to do that.
“I couldn’t be more proud,” she responded. “My dream come true. I had stopped hoping it would happen. When you were young, I came to terms with the fact that you didn’t want to be involved with the community. Then, when you became a teenager, it was like a door just flew open and you walked right through it. I sat with you and watched you speak with the mother of a newborn hemophiliac, and you made her feel like any challenge could be overcome. That was amazing.”
I hope that this conversation was beneficial to someone out there. I know that not everyone will be able to relate to the experiences exactly, but I think learning about other people’s journeys with hemophilia is how we grow closer as a community. I also know how incredibly scary it can be for new parents to be embarking on this adventure with your child, and I think my mom has come great advice on how to handle these events that life with throw at you.
Thank you again, mom, for taking the time to speak with me!
As I said at the beginning of the post, this may very well be the last blog post I have with HF Healthcare. It’s been an absolutely amazing experience, and I want to thank everyone who took the time to read the things I’ve posted here. I also wanted to thank HF Healthcare for giving me this opportunity. They’ve been incredibly generous by allowing me to create the poems and illustrations, and then carry over into these blog posts, and I cannot thank them enough. HF is a wonderful company, and I truly hope that our working together doesn’t end here!
Thank you so much, everyone.
To view all of Michael’s blog posts, please click here.