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Come On In, the Water is Fine

At Symposium, I wore the same socks for two days in a row, I stayed up four hours past my normal bedtime every night, and I finally realized that I needed to brush my teeth at exactly 7:21 am on Friday…

I was like a young child at Symposium: so completely engrossed in everything going on around me, that I simply forgot about proper oral hygiene. I had such an engaging, meaningful and amazing time at Symposium; my inner being was being nurtured and cared for – just not my self-hygiene!

Previous Symposium attendees might understand that sense of camaraderie and jubilation, but if you’ve never attended Symposium before, the feeling is one of pure acceptance and belonging. Symposium is like the community candy store; lollipops varying in shades of cardinal red, ebony black, and super hero blue. In choosing a lollipop, I knew that whatever lollipop I chose, each session (each lick) was going to change me both as a mom and as a person. By the end, I could tell each session was created with considerate thought and loving reflection.

Every session I attended moved me in a tangible way. You know—the way you feel when you have that ‘aha’ moment, where you get the feeling that wells up in your chest and your body tingles a little? Each education track had a class that spoke to me and said, “Come and learn, there is something for you here.”  

My first deeply memorable experience was attending the Remembrance Ceremony. What I realized at its conclusion was how important it is for us all to remember the history of this community. It’s that history that has created the spark that ignited the fire and the passion that continues to exist in the bleeding disorders community. That fire is a part of all of us.

My next memorable experience was attending the session about women and bleeding disorders. It’s so exciting to know that the community is remaining current and embracing change. As a mother and a carrier, I learned how important it was to identify my own experience and understand how have a bleeding disorders affects both the emotional and physical.

One of the most meaningful experiences for me was the mom’s rap session. It was in that space that I met with other moms who experience the same flavor of “normal” as I do. It was in that space, with those other mothers and caregivers, that I could reflect on how important it is to hear each other’s stories and create space for the new voices that needed to be heard. Moms, along with everyone else in this community, are in a constant state of change with new information they receive every day. We can support each other indefinitely as long we trust that we all have purpose.

Symposium was wonderful and it’s my own fault that I did not make time until Friday to brush my teeth. The days at Symposium can be as busy or relaxed as you like. There is plenty to do, but no one is judging you or forcing you to go to every session or activity. Everyone there knows, in some way, the load you carry and how important flexibility is.

In my mom’s world of tight budgets and busy calendars, I finally felt like I was being taken care of. Every meal was taken care of, if I wanted it to be. My bed was made daily. And if my children had been there, I would have known that they were always engaged. There was always something for the children to do that gave them time to connect with other people who live in their state of normal.

All around the country, especially in rural areas, you meet people who aren’t aware that a local, let alone national community exists. I can personally say that until a few years ago, I did not know that the HFA held an annual Symposium since 1999 that I could attend, as a first-timer, for a low cost. There is a community out there and it is for moms, sons, dads, daughters, young adults, tweens, teens, twenty and thirty something’s, and all of our elders. We support each other! We are all in this together!

I’m from rural Maine. Reflecting back, I realized how daunting this trip was. I had only crossed the Mississippi one other time in my life. This was the first time that attended a national bleeding disorders event. I had to let go of anything that was holding me back. For this new adventure, I had to hold my breath and take a plunge into the unknown. If you have never been to Symposium, I hope you will consider taking the plunge. There are many other moms, many other people in the water ready to catch you! Come on in, the water is ready for you!

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Jill Packard is the mother of two sons, ages 5 and 9, who have hemophilia A. From rural Maine, Jill is passionate about her family, connecting people, and building sustainable communities. Co-founder and interim president of the Hemophilia Alliance of Maine, Jill is also passionate about supporting the rural bleeding disorders community.

 

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Assisting and Advocating for the Bleeding Disorders Community