Thoughts about hope and hemophilia...
Arlo Smith was born to Tara and Adam on August 10, 2016. Tara noticed that Arlo had bruises every once in a while, during his first few months. Being a large newborn, when he was held he was held tight. A few months later, Arlo had a bruise on the back of his leg, where his leg would sit on your hip. After multiple instances, his parents decided to ask the pediatrician for a second opinion. The doctor was not concerned and agreed that he was a large baby so he would have bruises. At the six-month check-up, red flags were showed when a tennis ball bruise appeared on his stomach. When Arlo’s pediatrician examined the hematoma on his stomach, she decided to run some blood tests to appease Tara and Adam’s concerns. When the results came back, Tara explains, “The pediatrician told us, ‘It’s definitely not hemophilia.’” temporarily extinguishing the hemophilia scare.
Tara and Adam returned to the pediatrician a couple of weeks later with Arlo having even more bruises and they were recommended to a specialist at Vanderbilt hematology for further testing. They went into the appointment with a positive attitude and felt like, it was probably nothing. As the hematologist examined Arlo, he made it clear that the bruising was abnormal, and something was going on. After blood work, chest x-rays to determine if Arlo had a broken rib, and conversations about the people that were exposed to Arlo, they received the confirmation phone call with the lab results. The nurse continued to confirm that Arlo’s factor levels were less than 1%, concluding the diagnosis of severe factor IX deficiency. Tara, in a state of shock, told Adam the results. They did not have any known family history of hemophilia. Tara shakily describes that moment, “For me, I just felt like he (Arlo) had died”. Tara felt as if she was grieving the death of a dream of the life she thought Arlo would have lived without hemophilia.
The first couple of weeks, the Smith’s struggled both physically and emotionally. “It was really weird getting a diagnosis like this and then having to tell people. I’ve never had to tell people such tough news before.” Tara said. Trying to process how to tell people about the diagnosis and if they even should tell people was a learning curve. People would ask Tara and Adam questions to dig for something that would help them find the happy ending to the story. Ultimately, they learned that not everything wraps up with a little bow.
The hardest part after we received our diagnosis was not having an appointment with the Hemophilia Treatment Center for 2 weeks. “We basically lived our life for 2 weeks believing our son was going to have the worst life ever.” After our first appointment with the HTC, they felt completely different. Tara realizes now, that in some ways that is the process of receiving a diagnosis like this. Tara admitted that she has come to terms that other people can’t fully understand what it feels like to go through a situation like theirs. “I realize that I have to be gracious with other people with the way they talk about things, or the way they respond to things because, in some ways, we have been given a gift of having to go through something like this. I wouldn’t have expected to have grown so much in a year and a half.”
Tara goes on to share how thankful she was for the first 6 months of Arlo’s life, not knowing. There were so many fears of the unknown at the beginning, learning about Arlo’s diagnosis. After learning that Arlo had hemophilia, Tara and Adam wondered if Arlo would grow up normally. They worried about treatment plans, doctor visits, and years of infusions ahead without any previous experience, family history or knowledge about hemophilia. The swarming fears of the unknown stretched their capacity for a deeper compassion for the hemophilia community they were now part of. Tara recalled, “I thought that Arlo would never be able to ride a roller coaster. Now I realize he probably can.” Most people think of the big things but, Tara explained the fear of not knowing about the little things you would imagine doing with your little boy. It was a roller coaster of emotions.
The day Tara and Adam received the diagnosis, not ready to make it completely public yet, Tara first shared Arlo’s diagnosis with a closed mom’s group on Facebook she had gotten connected with through the birth center she had Arlo at. It was a small community of women that supported and encouraged one another. The women were supportive, but the best connection Tara encountered, was when a mom in the group told Tara she wanted to connect her to another mom that she knew that had a son with hemophilia. A couple of days later Tara received a comforting phone call from a new friend in the hemophilia community. “It was the best thing that could’ve ever happened to me. It was comforting to talk with another mom who had a 5-year-old with severe hemophilia, as well, and he was living a totally normal life. It was so nice to have somebody, other than having to call the doctor” Tara and Adam were able to attend the annual meeting for the Tennessee chapter and were able to get connected with other families living with hemophilia. “It was very humbling. So many of the older hemophiliacs that were there had trouble walking or were in wheelchairs. It was humbling to see what Arlo’s life would have looked like had he been born 30 years earlier.” They also got connected to a few friends at a local HOPE Group and are excited to get involved to help lead such support groups in the future.
After seeing so many people who were affected by hemophilia and learning of the challenges that many people had faced before them, they were thankful for Arlo being born in a time when medical advancements were available and realized how much worse things could have been. They began to reflect on how much courage it took for parents and patient who lived before them to experience the pain and challenges of living with such a rare and difficult disorder. Adam explained “We didn’t realize what it meant to be brave, until we were introduced to the amazing people in this community.” They were inspired by the bravery they saw of people who chose to keep going and push through the overwhelming challenges of living with a bleeding disorder, keep their head up, and fight to live a full life in spite of the pain. They began to realize that they had been blessed with an opportunity to walk this journey with their son and be inspired by a community of people who had overcome so much.
It was difficult to share publicly with friends and family but especially to add in the dynamic of social media community seemed daunting. Tara decided to search for a way to share the news in a way that wouldn’t be a bold statement but more of a subtle way to share the difficulty of this disease. She discovered there wasn’t much out there. “There were some things like medical bracelets and t-shirts with bold statements but there wasn’t anything that wasn’t ‘in your face’ hemophilia. That just isn’t me”. Tara began to think of what sort of level of awareness and advocacy she would be comfortable with. She had an idea of designing a simple necklace with the Factor number on it and later a designed logo “Brave”. She contacted a friend of hers that has a hand stamping business on Etsy and the idea quickly became a reality. Arlo’s one year diagnosis anniversary was February 22nd, and she first opened her Etsy shop that day. She felt it was the perfect time to launch a new venture to focus on bravery in the hemophilia community and honor the people who have been part of this community for a very long time. She also wanted to celebrate the journey her family had been on the past year.
Tara and Adam realized that living with a rare chronic illness like hemophilia, and perhaps having a small token, like a necklace, close to your heart, doesn’t necessarily invite a conversation, but could be a reminder to people in this community of how strong they are. Tara explained, “There are definitely times for advocacy, but it can’t be every day when you have a disease like this. However, you still need support and encouragement every day.” Tara’s friends and family ordered the products, but the most exciting part was when people she didn’t have a connection with started making purchases. “It meant so much to me when I got the first order from someone who didn’t know me that just searched on Etsy. That was exactly what I did, and to know that they did that and found something that would be a support to them was really cool. It was really neat when it spread beyond my little circle.” Tara also expressed the importance of the ‘village’ of hemophilia, explaining that brothers, sisters, moms, dads, grandparents, friends, and extended family have found the “Brave” T-shirts and jewelry a way to carry something related to hemophilia a significant impact, without having to explain to everyone what it meant. Tara donates a portion of her sales to the TN Hemophilia Foundation as well so everyone that orders is supporting Arlo and the community.
On World Hemophilia Day Tara thought it would be great if they could use the “Brave” logo on social media to advocate hemophilia in an encouraging way. She worked with her sister to design a profile filter to share her message and to her surprise, it inspired and resonated with the broader community. The Brave filter was used over 1,300 times in the month of April and touched the lives of many people in the hemophilia community. It not only was inspiring to many individuals, but it also inspired Tara to continue sharing her story and embrace her own journey to be brave.
Tara and Adam want to encourage the older generation with hemophilia to realize the impact their stories can have on a new family like theirs. They want Arlo to know how lucky he is to be born when he was, and not have to fight the same battles as previous generations have fought before him. They recognize there is so much more to the disease that isn’t just physical pain. They want to encourage the bleeding community to not only share how hard it has been for them but what they have learned and who they are as men and women because of their battle. “There are people that want to be encouraged and supported. Advocacy is not the only thing. There needs to be a movement for support in the community.”
Tara and Adam are passionate about helping new families like theirs find Hope with the new Hemophilia diagnosis process. They want to help new parents in this community have a better understanding of what hemophilia is today. They are excited as they continue their journey to help as many people as they can, continue to learn, and hopefully in the process, inspire others.
If you would like to learn more about “We Are Brave” or purchase some modern Hemophilia gear, visit https://www.etsy.com/shop/ArloandMarieDesigns