Infusing Love: Gateway to Understanding

For someone who spends her days organizing events for a living, it always surprises me how much I look forward to the HFA Symposium each year. It has a similar structure to many of the events I plan – with plenary sessions, workshops, exhibits, and networking events – yet it feels completely different.
Yes, I realize that things always look different when you are just enjoying and not working. But it’s more than just that. It’s the people. It’s the passion. It’s the pure joy that we all feel to be together finally after such a long year and so many worries.
If we are lucky, we all have our family and friends to talk to day to day. They listen tirelessly with caring and compassion but do they really understand what it feels like to watch a needle repeatedly thrust into your child’s arm while they look imploringly into your eyes and scream for your help? Or, conversely, do those same friends understand the overwhelming pride you feel when your child finally sticks a needle into his or her own arm? How about the angst you constantly feel about your child’s long-term joint health and prospects for a normal life? Sadly for us, but thankfully for those friends, the answer is usually no.
There is only one group of people that can fully understand and empathize, and luckily for all of us, we can find them each year at the HFA Symposium.
This year, I’ll be flying solo – sans son and daughters – which makes me a bit sad to know that they’ll be missing out on all the fun, seeing their friends, picking up goodies, and taking part in the teen program they love so much. At the same time, I have to admit, I’m also excited to be able to wake up late, go where I want, when I want, even if it means hanging out late at night at a nearby bar with friends (gasp!)

Wendy_Infusing Love

In addition to hanging out with friends, I’ve made a list of the top seven sessions and activities to consider while at Symposium, whether you are attending with or without kids (And just a word of advice if you are bringing the kids: trust in the childcare program. The kids will love it, and so will you!):

  1. Breakfast! When else are you going to have an all-you-can-eat hot breakfast prepared for you? C’mon, it’s a no brainer. Have breakfast every day. It’s also a great opportunity to meet new people from the community.
  2. Exhibit Hall Opening. It’s definitely worth getting there early while exhibitors are chipper and goodies are plentiful.
  3. Wellness Lounge. As a lover of massages, I was shocked last Symposium to see the wellness lounge and massage chairs empty. I didn’t want the masseuse to feel like she wasted her time, so I ‘forced’ myself through two massages. Aren’t I considerate? J Get a massage, relax and breathe. You deserve it!
  4. Opening Session. Two words – free lunch. Seriously though, this is the place to hear an overview of Symposium , and to find out who the 2015 HFA award recipients are!
  5. Remembrance Service. This often gets overlooked at the end of a long day, but I think it is one of the most important activities at Symposium – it’s a place to remember those we have lost and give thanks to those that have sacrificed to move us forward.
  6. “Stop the Bleeding” Premiere. Go for the laughs and to support one of our most promising young adults in the community as he continues his plight of engaging our children in their own health and wellbeing. It’s too hilarious to miss!
  7. Moms’ Rap Session. This one is my favorite. I’ve been honored to be able to facilitate this session a couple of times, and I’m always amazed at how beautiful the communication and connection is between moms when we can really share openly and honestly. Warning: you might want to bring some tissues!

This is by no means an exhaustive list. There’s so much more to see and do, including sessions on advocacy, treatment updates and self-care, family game night and a spectacular final night event. You may want to make a checklist of your own after reviewing the Symposium agenda to make sure you take full advantage of all the symposium has to offer.
At the end of the day, I have to say what’s most important is that you make time to catch up with old friends, make new friends by introducing yourself (even if you’re an introvert like me), and seek out all the information that’s critical to you and your family.
I hope to see you at Symposium! Anyone up for some good ol’ St. Louis style ribs and a drink?
Wendy lives with her three children Kaya (16), Tai-yan (16) & Khaliq (14) in New York and is an HFA board member and vice president of the New York City Hemophilia Chapter (NYCHC).
**Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.