Memories of my Dad at NHF Annual Meetings

My Dad class Halloween picture

     My Father Richard O. Johnson, Sr. was what people would now call an "Old School Hemo".  When he was younger dealing with hemophilia bleeds he didn't have factor at home to use as needed.  My Grandmother (as my Dad would tell it...)had to sometimes carry him to the hospital on her back because she didn't have money for the bus or cab.  When he was growing up they put him in a school for kids with Special Needs because he had hemophilia.  Through it all he still lived his life as much as he could....in pain from severe joint damage in both knees. 

     I think...when I was about 13 years old he had both knees replaced.  Getting his knees replaced made him more mobile.  He chose to use his new mobility working with The New Jersey Hemophilia Association and The Delaware Valley Chapter of NHF.  He was also on a committee with NHF that would choose one family to sponsor at the yearly NHF meeting.  My Dad enjoyed attending the NHF annual meetings.  It's funny, one of the earliest NHF meetings I remember my Dad attending was in Orlando.  I guess that is why them having the 64th Annual NHF Meeting in Orlando is bringing up so many memories.

     When my Dad first started traveling for NHF meetings he did not like to fly.  Once he drove from Philadelphia to Orlando for an annual meeting.  My Dad loved to drive.  I think because the car gave him power he didn't have standing on his own legs.  Sometimes on road trips, I would just close my eyes and pray we just get there safely.  Anyway, on his way to Florida he was stopped for speeding in Georgia.  For some reason the Troopers decided to check the car and found my Dad's extra supply of factor.  Now, imagine if you will, how the cops reacted to a Black man driving a Ford Truck with vials of white powder.....needless to say it was not easy explaining hemophilia and needing this white powdery substance to the Trooper.  It also didn't help that he had $1,000 spending cash on him!   After they had a drug dog check the car, they finally let him and my Mom go.

      

NHF annual meeting TX I think 2004

    
     I have never "officially" attended a NHF meeting.  Back when I had a little extra cash and extra weekend time (my ex-husband had the kids every other weekend), I jumped on a flight with my Boyfriend (now Husband) to hang out with my parents at the NHF meeting in TX.  I did use my Mom's pass to attend a meeting about port surgery.  My son just turned one, but the Doctors were not at the point of recommending it.  I remember the meeting was packed with people and even some standing against the back wall.  I also flew out to San Diego to meet up with my parents at another NHF meeting.  My Dad was in meetings all day so my Mother, Husband and I took a trolley to Tijuana .  That was an experience...I never drunk so much watered down tequila!

     My Husband (then boyfriend) did get an opportunity to attend a meeting with my Dad with just Men with Hemophilia.  My Dad led the meeting and told everyone his "story" of living with hemophilia.  I think my Husband attending this meeting was enlightening because it gave him a front row seat on what living with hemophilia could be like.  I say could...because these men didn't grow up on prophy treatment like my sons.   I think it was also the first time he learned my Dad was HIV positive.  My husband did feel a bond with my Father...he has never really shared what my Dad said in the meeting...but I could tell it touched him.  I hope one day he will share it with my son's.

     Well after writing this...I need to Officially attend a NHF meeting!  I'm already marking my calendar to definitely attend the NHF annual meeting in Miami 2016 that will combine the WFH World Congress meeting, this is expected to be the largest Hemophilia meeting.  Maybe I can get my family to the annual meeting next year.

     Do you have any great experiences from attending NHF annual meetings?  Do you try to go every year?