Father's Day Reminds Me I will Forever Miss My Dad

CEO of NHF Val Bias and I
at Hemophilia of SC Annual Meeting 2013

     I was so surprised when I received the Hemophilia of South Carolina Annual Meeting agenda and Val Bias was coming to discuss, "My Life Our Future, Genotyping for Progress in Hemophilia".  Wow, the CEO of NHF coming to little old SC chapter meeting!  I was excited because Val Bias was an old friend of my Dad, whom I never met.

     So after the board dinner and meeting, I waited to introduce my family to Val Bias.  I somehow was trying to convince myself that he wouldn't remember my Dad, so maybe I should change my mind.  My husband encouraged me to stay and wait.  I shyly said, "Hi, I'm Lovee' the daughter of Richard Johnson, do you remember my Dad?"  Of course, he did remember my Dad and also commented that he was a good friend and a good leader in the community!  I proudly introduced him to my sons.  He smiled and said, "WOW"!  

     That Wow, made me feel emotional.  I immediately thought about my Dad never meeting Laithan.  Marques was only 6 years old when my Dad passed so, he doesn't have a vivid memory of my Dad.  It was such a great feeling to introduce them to someone that had a high regard for my Dad.   

     I sometimes wonder what his involvement in the hemophilia community would be if he was still alive and healthy.  It's only been 4 years since he died, but I would love to hear his opinion on how things have changed.  I know that he was impressed with how well Marques was doing on prophy, but I would love to see his face when I tell him we are signing up Marques for basketball.  We are even going to find Laithan a toddler baseball team, because the boy cannot get enough of playing it!  

Marques age 1 and my Dad at
Hemophilia Association of NJ fall gathering

     The effects of hemophilia on my Dad's life is different than my sons'.  They have quick access to medicine and doctors.   Also, because of what happened to him getting HIV, there have been advancements to make sure they are getting clean medicine.  I will never lose the mindfulness of how big a deal it is that my sons are living a pain free life.  My father lived in pain every day of my life.  I know there were things he couldn't do or come to because of that pain.  I do not want my grandchildren to have a father that is living in pain and restricted in what he can do with them or for them because of hemophilia.

     I really had the best Dad!  My friends loved coming over to my house to talk to him.  He even tutored my best friend in math.  My extended family adored my Dad.  He was the leader in the family and everyone valued his opinion.  As I got older, my Dad became my best friend.  I had no secrets with him.  My first husband hated how close we were.  I guess there should be some things you keep between you and your husband, but I discussed everything with my parents.     I would always say, "My Dad said....", which I guess, I can see now, how that can get on somebody's nerves!  I don't think I have really gotten over grieving his lost.  I'm not in everyday depression, however, I do cry easily at any Dad related movies..you should of seen me at "The Croods" movie.  

     I really do miss him!  I believe that he can see my children, but I wish they could sit on his lap and he could play loud music for them to dance to and share his candy bag.  He was the best grandfather and I feel like my youngest children missed out on knowing a great person.  

     It's Father's Day this weekend and his birthday this month and the next few weeks will be hard.  I will share stories and pictures of him with my kids.  My heart will continue to cry the lost of him, but I will continue to smile.  I know he continues to live in me and through them.

     Happy Father's Day Daddy!

My Son Dances Like John Travolta!

     My favorite childhood memories are the times my Dad would blast music through the house and I would sing and dance.  It was one creeky spot on the floor that if you danced there, it would make the needle skip on the record player.  My Dad would shoot me a quick look.  Good thing they came out with CDs, because the stress of one of his records getting scratched inhibited my dance moves! 

     All these memories came rushing back the other day, when I was listening to an oldies station...oldies for me is the 80's...and one of the songs my Dad and I played over and over again came on.  I jumped up, turned it up and started to dance around the livingroom.  I was home alone, at first, so I really turned it up and let loose.  Towards the end...because you know back then songs were much longer..my son came home from school.  At first he didn't know what to think!   I told him to come dance with me!    That's when he busted out the John Travolta dance move from "Staying Alive" hips going and all!  Funny, he has never seen the movie, but he knew the moves.

     I was concious of this moment, because I wanted him to remember this moment.  One day when he's older and has his own family, I want him to have a flashback moment of him and Mom dancing in the living room.  I also want him to create the same memory for his kids.  My son's childhood memories will be much happier than my Dad's were.  Because of his hemophilia, My Dad had many childhood stories of him being in the hospital and things he couldn't do as a kid.  My son's childhood memories, thank God, will not be like my Dad's.  Hopefully, he will have more stories about how crazy his Mother was!

     When is the last time you danced with your son? 

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.

Happy Father's Day!

    In honor of Father's Day I wanted to give a shout out in heaven to my Father, Richard Oliver Johnson, Sr. 6/27/1951-1/6/2009.  He was a man of many self taught talents.  His biggest talent was being able to connect to people and keep them drawn to him. 
     He used this talent in the hemophilia community as an Outreach Specialist for The New Jersey Hemophilia Association of New Jersey.  His goal as an Outreach specialist was to educate, enlighten and empower the total hemophilia community, regardless of culture, socioeconomic, or gender difference.  He wanted  to make sure the next generation of hemophilia patients did not go through the pain and suffering that his generation went through.
     I was blessed, as a mother of a child with hemophilia, to have him as a reference and to make sure I was connected to the right people and information to care for my son.  I know he would enjoy seeing his Grandson's running and playing pain free, but I know he is watching!