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!

Budget Diet To Pay Medical Bills

     B-U-D-G-E-T...it's not a very attractive word!  It automatically makes me think of things I wish I could buy, but can't.  I have to admit that I do cheat on my budget from time to time shh, don't tell the husband!  In the end though I figured it will all balance out.  What doesn't help my budget is when I have to fit in a medical bill. 

     It's that time of year where the boys have had their factor levels checked, iron, hep, etc...and because Laithan broke out with a crazy rash I had an inhibitor test done.  Wow, is all I could say when I saw the bill.  Laithan's blood work totaled $1,907 reduced to member rate of $1,319.65, but I still get a bill for $663.93 (500 deductible plus 20% co-insurance).  Add on another bill for Marques that just came in for $498, I can't even look at the clothes ad in the paper.  I'm going to have to go on a strict budget diet to payoff these new medical bills.  I'm thinking,.. I should get them on a different blood work schedule so I can have time to pay off one bill before another one comes!

     What I will look at in the paper is the coupons!  Clipping coupons have really helped me reduce my food budget for the month and it's also one of the monthly expenditures I can control.  If I could use a coupon for the mortgage, that would help.  Couponing can be quite tedious and takes a lot of planning, since I'm a stay at home Mom I can take those extra hours on each week.  I look at it as a part-time job because I'm saving our family atleast $400 a month on groceries! 

Total for the above was $30.34 saving $89.68 (75%)!

 

     I've been couponing for about 2 years now and I'm not an expert, but I have reduced my grocery bill 40%-60% consistently.  My motto to the kids is, "If its not on sale, don't ask me for it!"  When huge medical bills like these two new one's come in, using coupons creates more wiggle room in my budget.  I don't stockpile like the show on TLC, "Extreme Couponing", because no one needs that much toothpaste and yogurt, but I will buy enough of an item on sale to last until the next sale cycle. 

     One of the websites I use to help cut down on planning my shopping trips is www.SouthernSavers.com.  This site is regionally based on coupons in my area, so definitely look for one in your area.  Also, you can look for local coupon meetup groups where you can trade in those dog food coupons for items you need.  My local group meets at the library.  I haven't gone yet but I may soon. 

     Besides going back to work, I don't know how else I could manage with these extra medical bills.  I'm lucky and grateful to have insurance.  After I get past the co-pay and deductable stage, I'm even happier!

How do you budget in medical bills?

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. 

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.

 

10 Year Hemo Mom Award

 

     Yesterday, my son, Marques turned 10!  I can't believe it, the time went so fast.  He is such a great son.   When I found out I was having a boy, I immediately went into worry mode.  Even though, I had my Dad available and ready to help with my questions,.... I still did not want to have a son with hemophilia.  I never thought of terminating the pregnancy or getting an amniocentesis to confirm he had hemophilia, I just took my 50/50 chance. 

     Even though I was hoping he did not have hemophilia, with my Father's help, I prepared in case he did.  I met with the Hematologist at the Hemophilia Clinic and was educated on hemophilia. The Hematologist sent information to my GYN on all the precautions that needed to be taken such as, not using forceps and using the cord blood during delivery to check for hemophilia.  I chose to have a C-section because my first pregnancy was a C-section and I didn't want to take any chances. 

     Unfortunately, in my case with all the preparedness that was done issues were not avoided.  I can remember waiting in the hallway for the Nurses to deliver the babies from the Nursery..they were a little late and I was getting impatient hence my reason for waiting in the hallway.  I was so excited that I almost claimed a baby boy that was not mine!  After I saw all the other babies delivered to their Mother's room, I became concerned.  The Hematologist I had seen during my pregnancy came to my room instead and informed me my son did have hemophilia and he was in the NICU.  Apparently, they did not test his cord blood but stuck him in both his wrist to test him, so he had a wrist bleed. I immediately broke down...so bad, they moved me to a private room.  Once I got myself together, I went down to sit with him in the NICU.  Both his wrist were wrapped up in huge ace bandages and on a splint attached to an IV.  I tell you, now looking back, I feel fortunate that hemophilia was the only reason he was there. 

     As I look back over the 10 years of raising my son with Hemophilia, yes there were some hard times...  His first major bleed was a head bleed from falling out of my bed when he was a year old....  The worry I felt when he went in surgery to get his port put in and I was out of town for work....  There were times we spent a week in the hospital due to port infections....  Emergency room visits due to other head traumas of running into walls or falling.  Yes, I have cried and prayed to get through these situations but we made it through all of them...thank God! 

     It's been 10 short years for a life I PRAY will be long.  It has been 10 years of staying EDUCATED on hemophilia.  It has been 10 years of being a PROTECTOR of my son but not over protecting him so he doesn't think hemophilia is a handicap.  It has been 10 years of not only him maturing quicker but myself;  putting on my big girl panties and DEALING with a situation instead of crying over it. 

     No..., It doesn't mean I have to stop doing these things because he's 10.  It doesn't mean that hemophilia gets easier because with each age brings a new awareness and/or situation.  I just think I and all my fellow Hemo Moms should get a:

 10 Year HemoMom Award.   

 

 

 

     The first 10 years is the hardest!  Now mind you, I know that my 10 years may have been easier than most...I have heard some horrible experiences...but we made it or you will make it. 

     So Happy 10th Birthday to my son but also Congratulations to me and every other Hemo Mom that made it through the first 10 years!

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.

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.