Independent heartache!

 
     My son at 11 just cooked his bowl of Ramen noodles by himself and my heart starting pulsating with …Well, I’m not quite sure with what!

     My first instinct is to say fear, but why would fear of him being able to make his own noodles make my heart pulsate?  He’s very responsible and I trust that he would pay attention to what he is doing.
   
     Could it have been shock?

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!

Four Years Of Unconditional Love

    Well, I almost let the month go past without mentioning my 4-year Wedding Anniversary to my Husband!  He promised me unconditional Love and I have to say, so far, he has kept his promise.  I think he knows, as soon as I don't feel unconditional love, he could have a crazy wife on his hands.  I'm still not quite sure how he knew that was the one thing he had to say to guarantee a, "Yes, I will marry you".

     I believe I mentioned in previous post that this is my second marriage.  My first marriage, I was young and he was 9 years older, so I grew up and we grew apart.  I heard a saying recently that God put certain people together sometimes just to create certain people.  I like that saying and I have accepted that as our purpose.  Someone wanting to marry me the first time who accepted the fact that I could have a child with hemophilia, I have to admit I thought it would never happen.  Therefore, when I decided to get divorced with two children and one with a bleeding disorder, I still was not confident that someone else would want to marry me.

     For the first two months after my first husband and I decided to divorce, I didn't tell anyone.  I was embarrassed and felt like a failure.  One night I was playing cards with some friends from work, had a few drinks (liquid courage), and casually mentioned that I was getting a divorce.  A month later, one of those friends at a New Years Eve party pulled me aside and said, "I know you are getting a divorce and you will be back on the market soon and I just want to let you know I'm interested in dating you".  He threw a few more lines in there, but I will spare you the details.  It did help his case that soft music and candle-lights were setting the mood.  So, this New Years Eve will be our 10 year Anniversary of actually being together!  I know, I know I'm easy!

Teaching The Gift of Giving

     I knew from the moment Marques, my 10 year old son, asked me,  "What day is Christmas on?", I wanted to do something different this year for Christmas.  Marques and MaRee' (13) have been very spoiled, never wondering if they would have gifts under the tree.  Besides something they made in class, they never thought about putting a gift under the tree for someone else.  I can only blame myself and work on trying to correct my mistakes.

 

Being A "Normal" Boy





Swimming Safe Rating

    As a Prophyholic Hemo Mom, I consider myself fortunate because I know my Father's generation did not have access to factor in the home for major or minor bleeds or prophylaxis treatment.  I feel like with my boys being on Prophy, they have a "normal" life like other boys.  Until..., Marques (9..for another 5 days) comes in AGAIN and tells me he wants to play a sport like his friends. 

     Unfortunately, my son's sport of choice is football which is a huge No, No number 3 on the National Hemophilia Foundation Sports Ratings by Activity Chart.  Recent studies have also shown that football is dangerous for all boys, regardless if they have hemophilia, due to head injuries.   With the National Center of Sports Safety reporting that 23% of boys ages 5-14 playing football get injured, I think football with be on our family No, No list as well.

     With football taken off the table, Marques next choice is basketball.  Basketball is also high on the ratings list as a Moderate Dangerous 2.5!  I did talk to his Dr. about this prior to the summer and she said we could work his treatments around his practice and games.  I really haven't been aggressive in finding a place for him to play, but now he is pushing me. 

     I know that I am scared for him to experience a painful bleed in his joints from an injury.  He has been on prophy treatment since he was about 1 1/2 years old, so he does not know what  a bad bleed feels like.  I remember seeing my father hold bags of ice on his knees or elbows when he had a major bleed in his joints.  He had to get two knee replacements because his joints were destroyed and it was painful for him to walk.  Yes, I know we are a long way from that...but I still worry if Marques will develop a target joint bleed from a major fall on the court.  I have to come to terms that getting involved with a sport, I am opening him up to injury.

     He has joined his after school Archery group, which is a Safe number 1 on the ratings chart.  I think he joined so he could shoot something, since I won't buy him a Nerf gun.  I know Archery is not going to be enough for an active boy like him.  He is also getting bored with Boy Scouts, so we just made a deal to do it one more year.

Horseback Riding Moderate-Dangerious Rating

     I know that times have changed in the hemophilia community and there are many precautions that I will have to take so he can have a "normal" boyhood.  In a few years, Marques will be in middle school and he will want to play on the schools Basketball Team.  Who knows, maybe he will be the Star Player and I will be his biggest Cheerleader!

     Does your son play sports?  If so, were you worried? ...Or, are you worried for you son to play a sport?

New School Year...New Explaining To Do

     "Hi, I'm Lovee', Marques Mom.  He is looking forward to the new year in your class, did they inform you he has hemophilia?"  I'm cutting the conversation a little short, but that's the gist of it.  '

First Day of School 4th Grade

     In the past, I would bring the teacher a info pamphlet on hemophilia so I knew she knew.  This year, I wasn't as prepared.  I don't know, maybe I was more relaxed because he is older going into the 4th grade.  He's not that little boy anymore jumping around.  Now, don't get me wrong, I am still requiring him to wear his helmet at gym and recess...He is still all boy and just as ready to play some football and play as hard as everyone else. 
    
     The Teacher was aware he had hemophilia.  The school nurse already informed her and gave her basic information. 

Marques told me, the first day of school the class had to go around telling everyone something about themselves.  He answered, "I have hemophilia and that is all I'm saying about that and I want to be a trillionaire".



     My first response to him was, "Marques, you can't just blurt that out with no explanation".  Short in sweet would of been, I have hemophilia which is a bleeding disorder and I have to wear a helmet during recess and gym to protect myself from injury.  I don't think that would be hard to say, but he does.  I'm not there in his shoes and he has to deal with all the question, so I remained quiet.  I know he has been frustrated in the past trying to explain it to his class.  However, I don't want him to not want to discuss it. 

     Hopefully, one day this year he will take the time to discuss it and I'm sure if someone directly asks him he will explain it.  Unfortunately, I don't think he will fit his helmet the entire year....so we may be retiring it soon!

No School Missed Due To Hemophilia!

     Well, in less than 30 days the kids will be back in school.  This summer went by so quick; yet not quick enough.  I am starting to schedule the kids doctor appointments so they can get their factor levels checked.  I think Marques has not been to the Hemophilia Dr. in over 6 months and Laithan has not been to the Dr.'s since January.  I'm hoping that is a good thing.

     One thing I never mentioned was, Marques made it through the entire year only missing one day of school.  The one day was maybe 2 weeks before school ended, he caught a bug.  He was so disappointed because he really wanted the perfect attendance award.  I had to let him know he already received his award by having a bleed free school year!  Yes, the nurse did call a few times for falls, but nothing major that required additional factor. 

     This is his first year not missing school due to his hemophilia.  My father would be proud because he use to tell me about all the time he had to miss from school.  I pray that next year we have the same luck.  I'm thinking about letting him not bring his helmet to school to wear to gym and recess, but as I write this....I'm getting nervous!

     How are your kids doing with attendance at school?  Is hemophilia becoming less of a reason for being absent?

Hemophiliacs in the Army?

     Well, Marques(8) was finally able to win the front seat from his older sister Maree'(12), on our way to take her to the Doctor.  I know he really enjoys sitting up front, so I smile when he wins.  As always, he makes use of this time, by asking me questions about liking a girl or anything else he has on his mind.  I don't know if it is because of all the talk about the 10th Anniversary of 911, but War was the subject of the day!

     Marques was letting me know, he did not want to fight in a War.  He didn't understand why people could not "compromise" (yes, his word) instead of fighting.  He said,  he had a friend that wanted to fight.  For some reason, I started thinking about him getting drafted since he was the oldest son......Then it hit me.....your a bleeder you can't go to war!  Based on what I always remember hearing, the Army does not take people with a handicap or medical issue; but is hemophilia one of them?  I thought I remembered my Dad saying he couldn't go into the military because of his hemophilia, but that was so long ago.  Now that we have factor available and you can self-infuse does that change the requirement?

     Based on what I read on About.com, Marques not wanting to be in the Army is not a problem because the feeling is mutual.  He would automatically fail the military medical standards because he has hemophilia.  I guess I don't have to worry about him being recruited either.
 
     However, It does make me think about other men and women, that do want to protect this Country and fight terrorism; can not because of thier bleeding disorder.  I would have to agree that I would not want them in combat, but what about the other positions in the service that are not front line that they could serve in?  Also, what about the fact that joining the army offers a pay check, tuition for college and most importantly BENEFITS.  I don't know much about the Army, but I would think there was something a person with hemophilia could do to serve the Country.

First Day Of Third Grade!!

First Day of School Picture

     Well, we made it through a great summer break.  Marques (8) is going to be hard to break out of the TV routine, he became accustomed to over the summer!  He went to sleep concerned about starting third grade and going back to school.  I assured him it would be great and not to stress, because last year he woke up with a gray hair.  It was the craziest thing!  Well no gray hair the first day of school for either one of us.

    
This year I was prepared with my Teacher hemophilia information booklet, my hemophilia information sheet from the Hemophilia Treatment Center (HTC) with their information and the school medical information for the nurse. 
    

At the open house, the night before, I gave the information to the Teacher and asked was she aware that Marques had hemophilia.  She informed me, she was and the nurse had already discussed it with her.  Surprised, I asked her if she had any questions and she said, "no" and didn't look too concerned.  I did let her know that Marques had to wear his helmet at recess and gym. 

    
     I know some mothers don't require their son's to wear a helmet.  I went to a hemophilia event years ago when Marques was 3 or 4 and some of the Mothers were against it.  I choose to have him wear it because his first major bleed was a head bleed, from falling from my bed when he was about one.  After that, he had another bleed in the same area and there was no accident.  I am very paranoid about that area.  I know at 8 years old and almost 5 feet tall, he is not thrilled to wear a thick blue helmet.  Since he has worn a helmet all of his life, it is still normal to him. 

     The first day of school is a little difficult for Marques.  He has new people in class asking him questions about why he needs to wear a helmet and what hemophilia is.  After that though, his friends start making sure he wears his helmet to recess and gym.  I am almost ready to let him stop wearing it but before school ended last year the nurse literally called me everyday regarding Marques falling, hitting his head or running into someone.  The week finally ended with me picking him up from school with a busted lip, scratched forehead and knee.  Thank the stars he was wearing his helmet, because it could of been worse.  I told him, when I feel he's calmed down a bit as he gets older, he can stop wearing the helmet.

    
     So anyway, Marques went off to school and I was off to take Laithan (18 mnths) to the HTC for a followup regarding his abscess (see previous post). While I was there my cell phone rings and it is the school nurse!!  (Yes, I have her number in contacts!!)  OMG!  I am thinking,  "already....the first day"!  The first thing she says is "He's okay, nothing happened, he just came to see me so I could call you and let you know he forgot his helmet."  "He said he would be careful and take it easy outside playing."  How cute is he and how mature he has become to want to call and let me know. 

    
     Later that night as I am giving him his wednesday prophy treatment I ask,  "So how was recess and did you take it easy." He said "Yes, I just played basketball," and he looks at me and smirks!  All I could say is, "Go put your helmet in your book bag!"