Where Have I Been?!

     I started this blog thinking I would write on it more often!  What happened I guess I could always blame it on the twins running around all day, keeping up with housework or any of the other million things that distracts us through out the day.  I have to blame it on good old fashion laziness.  I need to get my butt in gear earlier in the day or during nap time to make sure I stay up with this blog.  It does feel good to write and let things out....yes I'm having those feelings right now!! 

     I have to pat myself and my family on the back because we did attend The Hemophilia of SC Educational Symposium Family Weekend/ Christmas Party in December.  Anytime you can get to the beach you have no choice but to enjoy yourself.  We did meet a couple of families we had a chance to talk to during the breakout sessions.  I met one family who just found out their 8 month old has hemophilia and they are learning how to navigate health care being self employed.  I gave them some information for getting free factor from the state, but I wish we would of exchanged numbers.  I could of used a friend that had a son with hemophilia as I was learning how to care for my son.

     I like the Symposium because they provide daycare/activities for all the kids.  The twins (1) went to a daycare with their own age group.  That was the first time they were left with a stranger.  Laithan cried himself to sleep and Layla played quietly but cautiously.  Marques (9) met brothers with hemophilia and got to swim around in the resort pools.  MaRee (13) was able to make friends that she is still keeping in touch with on facebook.  I look forward to us going back next year.

     One of the new things we learned about was Arteriovenous Fistula, which is the veins in the arm can be put together to make a bigger vein that is always ready to access.  This is a procedure that can be done in lieu of getting a port put in. 

     I never had this option presented to me for either one of my sons instead of the port.  Luckily, we have had great results with our port but I would definitely take this option if Laithan runs into trouble since he only had his port a year.  I had a chance to feel the vein in a child that had it done and you can feel the blood running through the vein and he was not bothered by the bigger vein at all. 



    We are definitely going back next year and not just only for the beach!

Finding Love Being a Hemophiliac?

     Finding love being a hemophiliac seems stupid when I write it, because we wouldn't have so many hemophiliacs if no one loved them, right?  My son, Marques (9), is starting to talk to me more about liking girls...every year now he seems to find a girl in his class he has a crush on.  For the first time though, I started worrying about some girl saying she doesn't like him because he has hemophilia and wears a helmet to play. 

     I expect it is normal for all boys to get turned down by girls for one reason or another...I use to turn guys down for being short...until I met my husband L.O.L.  When I was starting to date and felt the relationship might be serious, I would tell the guy about the possibility of me having a hemophiliac child...I first did this at 17 and the way I was crying probably scared the hell out of him.  I always thought me having the possibility of having a hemophiliac son would be a deal breaker.  I don't want to raise my own kids to think that way.  I want my daughters to be confident that any one worthy of marrying them would stand by them to raise a family regardless what God put before them.  (I pray there is a cure for hemophilia before they have kids)  I hope my sons choose their spouse the same way.

     So I guess I have to be strong for Marques when he comes home that first time and says, "She doesn't like me because I have hemophilia".  I need to be ready for what I am going to say to him so that he doesn't let the fact that he has hemophilia hinder him from being the "Mac Daddy" he thinks he is.

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?

A New Phase Of Life

     So it has been awhile since I've posted anything....not for a lack of having anything to say. I have been spending all of my time trying to free myself from a business I started, that did not work out. Those issues are holding me back from completely moving on to a new phase in my life.  It is funny, now that I have 4 kids with the oldest and youngest having an 11 year age difference, I think I just may be replaying a previous phase differently. 

     With MaRee' (11) and Marques (9) I was a workaholic Mom.  Maree' stayed with my Mom for the day until she was about 4 before we sent her to Chesterbrook Academy (daycare).  Being the first grandchild my parents had around, they were uncomfortable with her going to daycare with out being able to talk...in case someone did something to her she could tell us.  With Marques, he stayed 6 months with my sister then off to Chesterbrook. 

     It would seem, we would be more worried about Marques.  He had hemophilia and he was the first grandchild with it.  I did make sure a nurse visited the daycare to do a presentation about Hemophilia to his teachers.  When he was about 3, we even had the nurse start going to the daycare center for his prophy treatments.  Chesterbrook provided a spot in the refrigerator for his factor, so I really became removed from the process. 

     Besides educating the staff, Marques also wore a helmet and knee pads from the time he started walking.   As I think back, we had a very successful time with Marques at daycare and I need to thank the lord for protecting him from any major issues.  Like I said, I was a workaholic Mom, I was working close to 12-14 hours a day and I did that from about 1999 to 2007!
 

     Now, with Layla and Laithan (1) I am a stay at home Mom.   So, in this phase of my life I get to take care of my children differently.  I have to say, I feel more protective of them.  Maybe, because I have more time to think instead of just doing.  I can not imagine putting Laithan in daycare and not worrying about him getting hurt.  Shucks, I'm at home with him everyday and I worry about him hurting himself; the boy is bonkers!!! Another concern for me is that in SC I don't have a nurse that can come out for emergencies....I am the "nurse" for those emergencies.  (previously lived in NJ) 
 

     I'm glad I have the opportunity of re-doing the toddler phase and having the opportunity to re-do it being a stay-at-home Mom.  (Even though, at times I have an urge to work... but don't all recovering workaholics!)  I know, my older kids like me being home now and I think they need me more even if it's only to drive them to activities!  I pray my husband can keep maintaining us so I can maintain the family!

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.