My Hemophilia Awareness Month 2014

      Hemophilia Awareness Month of 2014 I have become one of them!  I never imagined I would be when I had my first son with hemophilia.  When I dated guys I felt the need to warn them that they never would be as well, if we were to have a son.  But now for the first time I am a “Sports Mom” or “B-Ball Mom”! 

     Now, some of you may have never had this thought or may have been a "Sports Mom" or parent since day one.  Don’t get me wrong, I did allow my son to play sports at recess and gym class.  I just never signed him up for a team sport before.  My Dad, who had hemophilia would warn me about the target joint bleeds and joint damage that could result from playing sports.  He would even have me grab his knee while he bent it and I could feel the clicking and roughness of the knee as he moved it back and forth.  I grew up watching him deal with chronic daily pain where just getting up to go to the bathroom was a battle.  Thinking about it now I get chills, so I was “scared straight”. 

     Also, 11 years ago they were not pushing kids with hemophilia to play sports…stay active…but not team sports.  The only sports I “knew” was Football, Baseball and Basketball and they were all rated 2.5 or higher on the National Hemophilia Sports Rating by Activity Chart, so being a “Sports Mom” was not something I imagined in my future.   

     So, this Hemophilia Awareness Month has been eye opening for me.  I am aware that my father’s point of view about having hemophilia and playing sports was based on him not having factor available at home or being raised on prophy and wanting to protect his grandsons from the pain he experienced daily.  I am aware that yes playing sports we are taking a risk, but if I keep them on their prophy regimen (like the prophyholic I am) and plan it around practice and games I can reduce that risk.  I am aware that I have to teach my sons that we are taking a risk of playing an organized sport, but they have to learn to listen to their body for warning signs of a bleed, which is hard because you don’t know the “normal” aches from a beginning of a bleed. 

     My son has told me he is paranoid about getting a bleed when he's playing basketball so he tries not to play as hard or get too rough.  It’s hard to tell him he shouldn’t be scared of a bleed when I’m on the sidelines just as afraid.  I’m hoping over time that fear will fade and praying at the same time he never has a joint bleed or develops a target joint bleed.  I am aware that they are having fun and that’s what living your life is about.

     It’s only been two weeks since I’ve become a “Sports Mom” and it’s exciting!  Laithan is doing great at T-ball.  He throws the ball so good the other parents joked, “We need to see his birth certificate to confirm he’s only 4!”  His twin sister, Layla, is getting over her shyness a little and slapping hands with the other parents.  The both of them are really enjoying learning how to play T-ball and being out with other kids. 

    

     Marques is loving being on a Basketball team.  He wanted to play because his friends were playing, but they didn’t get on the same team so I thought he would lose interest.  The opposite has happened.  He can’t wait to get to practice.  It’s almost like letting a caged bird out for the first time.  He said to me the next morning after the first practice, “Maybe I could be the first hemophilia NBA player?!”  I just said, “Maybe”. 

     I even see a new light in my husband’s eye watching his boys play a team sport.  He even decided to become the Assistant Coach for Marques Basketball Team.  

     This is a new beginning for us.  I’m ready to invest in some “B-Ball Mom” t-shirts!  I know I had fun shopping for all the equipment and sneakers.  I tried not to go too crazy getting the twins T-ball sports bags, but I may have to splurge in getting them baseball shirts with their names.  I know….. the newness will wear off…. and the running around trying to get everyone to practices and giving up my quiet Saturdays because of games will be taxing, but that’s the life of a “Sports Mom”, lol!

 

     Hopefully, you won't get too tired of me sharing my pictures on Prophyholic Facebook page!

Have you allowed your child to play a Team Sport rated 2.00 or higher activity rating?  Has the fear of your child getting hurt diminished?

Video Game Addiction

     My heart really goes out to the parents of Sandy Hook, CT.  I could not imagine the pain those family feel from loosing their children so young and so tragic.  I keep praying for them and pray God eases their pain a little everyday through great, although short, memories.

     Of course with all the tragic shootings that have taken place over the last six months, America is now ready to address the gun laws.  I myself don't own a gun and I'm not familiar with any of the laws or what it takes to get a gun.  I'm sure in the next few months my knowledge will change.  It's funny, I knew my Dad had a gun.  He kept it in his suitcase with his factor supplies locked up.  I guess it was the only case he had with a lock.  It was a pistol, I'm not even sure if he kept bullets in it..but I knew it was in there.

      Anyway, with psychologist and news reporters now looking into the effects of video games on gun violence, I have to take a look at my own child.  It's ironic that my husband and I have been discussing this previously about Marques playing his Xbox live all day.  When I say all day, I'm not exaggerating.  Just this past weekend he was on it from 5:30am to about 2:00am...and only because I made him go to bed.  That is an example of an extreme time, but I know he would do that everyday if he could.  Besides Minecraft, he plays Call of Duty.  I really didn't know how violent Call of Duty was until I watched him play it.

Bubble Wrapped Birth: Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

     Please read posting on Bubble Wrapped Birth blog....some great conversations in comments.  Curious to hear other opinions and feelings from Mothers and Sons about playing any sport like 'normal' boys regardless of their hemophilia.
 
Bubble Wrapped Birth: Jeff Johnson, "a totally 'normal' hemo" shares his heart on how our feelings can affect our children:

  Also, please let me know if anyone knows of any boy with hemophilia playing middle school, high school, or college football. Very curious to hear their story. 

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?

Raising a Want To Be Athlete



Marques playing football at Boy Scout camping trip

     I know I am like every Mother that thinks about her son playing sports.  Even though my boys have severe hemophilia A, I still brought them the little toy basketballs and footballs.  Yes, at the time it made me sad thinking they could never play for their school sports team or recreational teams. 

     Of course I felt guilty because their fathers (twice married) love sports and I know they would not have imagined having a son that could not play.  But still hemophilia does not stop my son Marques (9) from thinking he is an athlete.  I know he is at school during lunch playing football with his friends, which is why I still make him wear a helmet.  I remember (laughing), when he was about 6 I went to pick him up from his after school program and he was in the playground playing football and when he saw me he was trying to act like he was just watching...whatever.  We tried to get him involved in Boy Scouts, so he does have some outlet, but even at Boy Scouts they play sports at camp or sometimes at the meetings.  What can a Prophyholic Hemo Mom do but make sure he is treated and ready to give an extra dose if needed.  All the fathers make comments about how he should play football and we have to give the speech....he has hemophilia a bleeding disorder...yada yada.

    
     But now, I don't know if the old rules apply anymore about hemophilia and sports.  Of course there are different levels of sports you should and should not play.  I don't think we will see a famous hemophiliac playing football...but maybe basketball.  I read an article in Hemaware, a bleeding disorder magazine, that studies were done and proved that high impact sports like basketball did not increase the number of bleeds versus lower impact sports for boys on prophy treatment.  All these studies are so new and contradict everything put in my mine by my own father and information I was given when Marques was first born. 

    
     But times change, medicine gets better and more available and just maybe my son can play for his school basketball team!  I did check with his Hemophilia doctor and she just said we would look at changing his prophy days to practice days and go from there.  I will be cheering from the stands with my ice bags ready to go!

     Does your son play sports?  Why or Why not?