I was fortunate enough to go to some bleeding disorders conferences these past few weeks. I saw friends I have not seen in years. It got me thinking about where would I be without the amazing support of my hemophilia family? How would I ever have survived? I am so excited to be consistently making new friends and cherish each family for their unique story. But I remember there was a time that I shut down and did not participate in any community events. I was overwhelmed; it was all just too much. Since hemophilia had already taken over the majority of our lives, I just wanted to surround myself with non-bleeders. Although having to constantly explain to people that no my son was not going to get a scratch and bleed out got old real fast!
After Tyler was diagnosed, I wanted to meet as many hemophilia families as I could. I had so much to learn and craved others’ wisdom. We started doing every hemophilia event, retreat and fundraiser. I met so many fantastic families; it was exactly what I needed. It was amazing how less alone I felt. I am sure for introverted people this can be challenging. Being a single mom, I was nervous about going alone. This is when having a family member around comes in handy. I was fortunate enough to have family members available to attend with me. All I had to do was ask. Turns out, my whole family was eager to come and learn as much as they could as well. Asking for help does not mean you cannot do it alone. It is comforting to the people around you to also be involved.
Over time, I made wonderful connections with people I still call my friends to this day. I started to feel more empowered and stopped asking for someone to go with me. This community could not be any more welcoming! I recently attended an event and met some new members who were very quiet the first few days. However, by the end they had made some deep connections and were so grateful that they had attended. I guess what I am saying is, do not ever think you have to go on this journey alone.
If and when you feel the need to reach out, there are many resources available to you. Ask your pharmaceutical reps about any activities their organization may be hosting. Tyler and I really enjoyed the Inhibitor Summits for patients with inhibitors. On the NHF and HFA websites there are lists of upcoming events as well. Local bleeding disorder chapters are a great starting place and provide easy access to families near you. And, of course, social media has groups for people to network from home. Sometimes just having one friend who is going through a similar situation makes all the difference. I love my blood brothers and sisters! (Note: Picture caption–Hemo Moms Gone Wild! I’m in the orange!)
Next time: Sepsis, a bloody nightmare!
Blogging about Bleeding Disorders 