This is one of the BEST Bleeding Disorder Days I have ever attended. You all know that our team (especially now retired Kathy M) at The Hemostasis and Thrombosis Center at Children’s Hospital…was the best at helping us understand Hemophilia and learn how to control as much as we could. The families that I met at this event, when my son was just an infant, are so dear to me.
Nicole was an experienced Hemo mom that told me she cried all the time and that was ok sometimes. She also told me to never hold down my son for factor infusions (best advice ever) so we learned how to make a 9 month old a willing participant. Brenda is still the funniest lady I know. Her intelligence and “realness” is such a beautiful spark. Rebecca became an instant bestie who is just plain ole dorky, but in a cool, I wish I was like her kinda way. I love these ladies who are always top of mind when CHLA Day rolls around. Thanks gals for being part of my family.
If you have never been to this, please sign up. You will make great friends and there is time to really get to know each other and see if there is a connection.
You can attend if you are industry and are also a member of the community. Being Community trumps your job every time. There was a rumor out there that you could not attend if you worked for industry, but you can if you are affected.
Arrive hungry – there is usually so much food that you are STUFFED by the end of the day.
Sit with someone new! Get to know the members of the community and find some new parents to welcome into the Hemo Family
Arrange for a playdate or Picnic in the Park with some of your new friends ASAP. If you need help with this, comment below and the Moms of HU can help you. Find Marcie Reynolds and tell her you want to be a part of Hemos Unite, or need help getting an event together. She is one of the sweetest people I know and LOVES to bring the community together.
Get enough rest the night before, the breaks in between sessions are quick and you need to be ready to move
Plan out your tracks and have a central meeting place in the area to meet your family and check in. Reception is sometimes spotty so texting may not be fast enough.
Have a great day.
Thanks Children’s Hospital Los Angeles. This is a fantastic event.