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!

NHF Washington Days - Video Thursday

    

    
     The National Hemophilia Foundation annual Washington Days is planned for Wednesday, February 27 - March 1 to continue to advocate for the bleeding disorder community.  I've never attended Washington Days and wanted to this year, but financially I can't.  However, I am going to participate for the first time in my local chapter State advocacy day next month!  I'm registering for that today and will take my oldest son Marques, so he can begin to understand what goes into him having access to medicine.

     Obama's health reform has really put our community in a better position with insurance companies to continue to provide our son's with a "normal" life.  I watched a hemophilia video before that reported that it could cost as much as $10,000,000 for a lifetime of factor since hemophiliacs are living longer and need to take factor at least 3x per week!  Hence the term, "Million Dollar Babies", my Dad would use.  I know insurance companies will continue to fight that and Medicare will not want to keep covering that cost in their budget. 

HSC Educational Symposium and Family Weekend Review

     Let me just start of by saying I had a good weekend!  The weather was foggy Saturday, which was okay since we were in meetings all day, but Sunday morning made up for it.

     My family has made a commitment to attend this meeting every year so we can "check in" with the Hemophilia community.  This year, I have to say it was a good check up.

     This year theme was "Today and Beyond".  The Weekend Agenda was full of education sessions for parents as well as the children followed by a Holiday Buffet Dinner and Christmas Celebration.  There were several good sessions that I will break up into a few blog post.

     One of Saturday Morning sessions presented by Michelle Rice, Director of Public Policy of NHF who is responsible for coordinating NHF advocacy efforts at the state and federal levels, provided everyone with a Personal Health Care Insurance Toolkit created by NHF to help you decide which insurance plan is best for your family.  Of course it's the end of the year and time for insurance changes.  My husband always just picks the one that seems to be the best choice to take care of our hemophilia needs.    The toolkit walks you through a worksheet you complete based on information from your own insurance plan.  You can compare dollar for dollar which plan is best for you.  I'm almost scared to check to make sure we did pick the right plan. 

    
     If you were following me on Twitter this weekend at @Prophyholic, you know I had an enlightened moment about the importance of supporting your Chapter, which came up during this session.  Now, don't get me wrong.  I knew it was important to join a Chapter, but I did not understand the correlation between being involved and showing up to events with how much funding your Chapter can receive from drug manufactures and insurance companies to donate to the Chapter.  I guess my ignorance came from always seeing pharmacy providers at events when I attended with my Father and just thought they were part of the package.  Back then, pharmacy providers paid for trips, provided helmets and everything else to keep you as a customer. 
    

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.