Tell me about your family, and about your boys with hemophilia.
I’m the mother to three children: Callen (age 5), Cassadee (age 3), and Griffin (1). Both my boys have hemophilia. Hemophilia is a genetic bleeding disorder where the blood doesn’t clot. There are different types, and my boys both have hemophilia A, which means they are missing the clotting factor VIII. Their hemophilia is classified as “severe”, meaning they have less than 1% of clotting factor VIII in their blood.
When I gave birth to Callen, they used a vacuum extractor to help with delivery. It was a hard labor and his head was a little beat up. It was the next day in the hospital when the nurse came to me while he was in the nursery and said, “I think we need to take an X-ray of your baby’s head.” I thought it was a little strange, but he did have trauma to his head from birth, and so I let them know they could do whatever they needed to do. When they did the X-ray, they did notice he was bleeding pretty badly underneath his scalp. His head had started swelling, was black and blue, and it quickly turned into an emergent situation. They took him to the NICU and he had to have a couple of emergency blood transfusions. I was told later, that he almost bled to death and didn’t make it, but they stabilized him and the doctor asked me about any bleeding disorders in the family. I told him there weren’t any, and so we “ruled that possibility out.” However, a few days later after getting circumcised, he started bleeding more than usual once again. The doctor decided there was something else going on that we needed to figure out. So, they had some other blood tests done that were sent up to Primary Children’s Hospital. Ten days after he was born, Callen was diagnosed with hemophilia.
Once they found that out, they were able to get him on the right medication and get him taken care of. There’s a 50% chance with our boys that they may have the disorder, but we took the chance with our other kids, and Griffin was also diagnosed with hemophilia. There’s a special bond between the two of them, and I think it will help them as they get older, to know they’re not alone.
What is the treatment they receive?
With severe hemophilia, they do a prophylaxis treatment. Callen gets clotting factor every Monday/Wednesday/Friday at home. He also receives extra doses when he gets hurt or if he is going to be extra active that day. Clotting factor has to be given through an IV, and so Callen had a port placed when he was 20 months old, and has had the same one since. I’ve never missed an infusion day, and with clotting factor, he’s able to live a pretty normal life. He moves around like other boys his age.
From the beginning, I was kind of just thrown into the fire. At first I felt so helpless having to go to the ER every single time there was an issue. But after he got a port, and after I was able to give him his treatment (rather than take him in), it felt so liberating. It was a big deal for us. So I learned how to access his port, and he does so well with it. My youngest will get a port whenever we decide the time is right.
With hemophilia, many people think if my boys get a cut, then it’s a big deal. Those aren’t a big issue - we can deal with cuts. What we’re more concerned with, are things on the inside: bruising, and bleeding in the joints. Those are things you can’t necessarily see before they get bad.
Your husband told me about how you have such a positive outlook on your situation. I think that’s admirable. What do you have to say to that?
It’s definitely not easy, but doable. I remember when Callen was first diagnosed and there were so many questions. I didn’t really know what hemophilia was. But this is what I’ve realized: You never know what you’re going to deal with in life. Sometimes things are thrown at us that we don’t ask for. People rise to the occasion, because what else are we supposed to do? We want to do the best thing for our children and our families, and it’s amazing how much a positive perspective can change things when we have to deal with trials.
A comment I often get is, “Wow, I could never deal with what you’re going through.” The funny thing is, nobody really can. Before this all happened, I might have said the same thing. But when we’re faced with something hard we don’t really have a choice, but to deal with it and move forward.
It’s not easy. There are some days, when I say out loud, “I hate hemophilia.” But I have no other choice. I firmly believe that God prepares us for the trials that we have to face. Faith, and nourishing my spiritual health, is number one for me. I have to think, “I can do hard things” and let God help me through. Enduring trials makes us better. I wish I didn’t have to deal with this, and life would be so much easier, but I don’t get to choose. So, I choose to make the best of our situation. We just make hemophilia a part of our life, and it’s our “normal.”
Being the mother, you are doing a lot of the work at home, and taking on a big responsibility and role in all of this. I know you’re involved in music, and does this provide a healthy outlet for you?
I play the fiddle in some different bands, and also teach private lessons out of my home. I’m so glad I have something that’s “mine,” or something that I can do for me. I enjoy having a hobby and side-job that makes me happy, and that through performing, I can help other people to enjoy it too. Sometimes when I’m home all the time, it can be easy to feel bogged down by the things I deal with day-to-day because of hemophilia. But it’s important to get out and get away every once in a while, break up the monotony of life a little, and do something I love. That helps me keep a good balance in my life. I know some moms may not need something like that, but for me it helps me feel happy.
What does “being vulnerable” mean to you as a mother and why do you feel it’s important to share your story?
This is a good question for me because I tend to keep a lot of things in. I don’t mind people knowing what we deal with, and I like educating people on hemophilia, but I don’t share it a lot because I don’t want people to either feel sorry for me or to not take it seriously. I don’t know if that makes sense, but when you open up and share something with someone who doesn’t give you the response you want, or doesn’t seem to understand, it can make you feel like you shouldn’t have share it.
I think it’s important to share though, because it can give you strength if it’s received the right way, and you just might need that. I know that I receive strength from hearing other people’s stories. I enjoy hearing about other mothers who have children with hemophilia, because all of the sudden I don’t feel like I’m the only one. Hearing other people’s stories gives empowerment. It reminds me to keep sharing just in case other people can benefit from the things I say, or do. I shouldn’t be afraid or ashamed or embarrassed to share these things, in fear of the way someone might react. I need to constantly remind myself of this.
Have you found other mothers nearby who are in a similar situation? If so, how has this helped you?
Yes, a sense of community is huge; whether it’s dealing with hemophilia or motherhood in general. A sense of community brings strength. It’s amazing how much we rely on other people, who sometimes we don’t even know. Even with social media, we’re always seeing what other people do and are influenced by the things we see. So having a sense of community where someone’s dealing with something similar to what you’re dealing with, gives you a lot of strength. It feels like everyone just cheers each other on, an automatic bond is formed, and you have people to support you. When you find that sense of commonality among people, it’s uplifting.
What does motherhood mean to you?
Motherhood is the hardest thing I’ve ever done. Take away hemophilia, and it’s still the hardest thing I’ve ever done. I think about how much easier it could be, and all the things I could be doing, if I weren’t a mom… the days I could do my hair. I mean, simple things! But would I trade it for anything? Absolutely not. Being a mom is something special; there’s just something to it. It doesn’t compare to anything else. We go through things as moms because we love being moms and we have to stay strong for our kids. Moms will go through anything for kids. And we just have to learn how to do it. We already know deep down how, but we just have to find it within us.
Interviewed reviewed and edited by Lindsay Davis prior to release on July 8, 2016
Here is a link to the Utah Hemophilia Foundation for further resources if you know of anyone who could benefit from this.