30 Day Thankful Challenge: Thankful for "Factor Time" during the maturing age!

     So on the Prophyholic Facebook page, I’m doing the 30 days of Thankfulness Challenge and applying it to being a Prophyholic Hemophilia Mom.  I’m nervous I won’t make it!   I’m trying hard not to miss a day or undervalue the experience with easy or repetitive things to be thankful for.

     On this journey I had an Oprah, “Aha moment”!   I am thankful for the connection time I had while giving my son his factor to treat his hemophilia.  I wanted to share this in a more detail blog post because I want every Mom to realize that “Factor Time” is a great experience and journey.

     For most Hemophilia Moms, starting home infusion for prophy is rough on you!  Most likely your child was an infant/toddler and you have to tell yourself that the pain of sticking him with this needle is less pain than a joint bleed.  So, for years you go through this several times a week, filled with good days of cooperation and bad days of him fighting you tooth and nail.  Eventually though, through my experience, as your child gets older and mature they realize that "factor time" is a must and you have his full cooperation and help.

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?

Three things I wouldn't have at my Halloween Party!

     We all know Halloween can be a bit bloody.  If your child has hemophilia, your job is to avoid blood 365 days a year.  I found a few Halloween themed ideas for a party, a Hemo Mom would probably not want to have:

1.  A Bloody Fondue Bar

     A Hemo Mom doesn't want to see blood flowing.  We stay on our tight prophylaxis schedule to avoid such problems and a hell of a lot of money on factor!

Photo from Sugar and Spice by Celeste: Blood Fondue Bar

Confidence at Camp

     It's been over a month since my last post...bad Mommy!  The good news is the kids are enjoying their summer.  I think in the month of June my oldest son, Marques, was never home on a Saturday.  That was a big deal to him and proudly noted since my children usually complain they don't do anything all summer.  Of course that's not true! Each year we try to go away for at least 3 days, but their memory of it gets lost in the long summer.  

     This summer though has been full of new experiences.  Marques went to camp for the first time.  He didn't want to go, but under pressure by me he went.  Thank goodness, he loved it and was already talking about going back when I picked him up.  I tell you, he was only gone 6 days, but it felt longer.  This was the first time I was apart from him for so long....  The best part is I didn't have to worry if he was taking his factor, because he was at a bleeding disorder camp.  Last year I was not ready to let him go, I now regret that because gaining his independence from me is something we both needed.

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!

Mother's Day is Mine, Mine, Mine!!

     I don't want to spend Mother's Day with my kids.  Yes, I said it and I mean it.  Let me say before there is  any misunderstanding, I Love My kids very much.  They mean the world to me and they are my world.  Everyday, I spend 15 hours a day with 2 of the 4...the other 9 hours they are sleep.  My children make me laugh and everyday I ask God to protect them and I pray he allows each of them to live a full happy life.  But Mother's Day, I think should be exactly what it is called Mother'SSS Day, mine, mine mine!

     Think about it this way.  If I spend the day with my children,  it's really not MY day.  Yes, they may give me a special breakfast in the morning and I will have that, "Oh, Mommy we love you so much!," moment.  But, who's going to have to clean the kitchen?  You would think my Husband and he would wash the pots,...but would the kitchen really be clean?!  If your lucky enough to be taken out to lunch or dinner, it's not like you didn't put the work into getting everyone together and out of the house.  When you finally make it out to dinner, you can't ignore the messy hands and juice spills...nope your still a "Mother" on Mother's Day.

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?

My Son Dances Like John Travolta!

     My favorite childhood memories are the times my Dad would blast music through the house and I would sing and dance.  It was one creeky spot on the floor that if you danced there, it would make the needle skip on the record player.  My Dad would shoot me a quick look.  Good thing they came out with CDs, because the stress of one of his records getting scratched inhibited my dance moves! 

     All these memories came rushing back the other day, when I was listening to an oldies station...oldies for me is the 80's...and one of the songs my Dad and I played over and over again came on.  I jumped up, turned it up and started to dance around the livingroom.  I was home alone, at first, so I really turned it up and let loose.  Towards the end...because you know back then songs were much longer..my son came home from school.  At first he didn't know what to think!   I told him to come dance with me!    That's when he busted out the John Travolta dance move from "Staying Alive" hips going and all!  Funny, he has never seen the movie, but he knew the moves.

     I was concious of this moment, because I wanted him to remember this moment.  One day when he's older and has his own family, I want him to have a flashback moment of him and Mom dancing in the living room.  I also want him to create the same memory for his kids.  My son's childhood memories will be much happier than my Dad's were.  Because of his hemophilia, My Dad had many childhood stories of him being in the hospital and things he couldn't do as a kid.  My son's childhood memories, thank God, will not be like my Dad's.  Hopefully, he will have more stories about how crazy his Mother was!

     When is the last time you danced with your son? 

I'm A Recovering "Bad Consumer", Part II

    In Part 1, I confessed to not staying up with the NHF updates and not knowing about the Standard of Care to expect for my son.  I always depended on my Father for information.  After he died, so did the information.  My father was my resource and my first call if I thought my son had a bleed. 

Hemophilia of South Carolina Symposium meeting 2012

 

     My father was very involved in the Hemophilia Association of New Jersey, so I went to events with him, but never joined as a Mother of a son with hemophilia.  When we moved to SC, I attended my first family weekend Symposium with him and took my family.  Now that I reflect back, it was still as his daughter but not as my son's Mother.  I don't know if that makes sense, but he was my source of information and my guidance of how to care for my son.  So, when my father died...so did my information as well as my relationship with any hemophilia Chapter. 

I'm A Recovering Bad "Consumer" - Part 1

       At the Hemophilia of South Carolina 2012 Educational Symposium Family Weekend the fact hit me that I was a bad "Consumer" in the Hemophilia Community. First let me say, I've heard the term "Consumer" before, but I thought it just meant I was a consumer of blood products.  But the word "Consumer" means so much more!

     Michelle Rice, Director of Public Policy NHF, explained how to be a "Good Consumer". At the symposium we learned: A "Good Consumer" is educated and informed, not only about their bleeding disorder but about the rules and standards that apply to the various members of their care team (pharmaceutical companies, specialty pharmacies & medical professionals).

     Now, I was knowledgeable about the care I needed for my son: factor, supplies and doctor appointments.  That is all I thought I needed to know about!  

Rare Disease Day 2013 - Video Thursday

      Whenever I tell someone my son has hemophilia, it never starts with..”It’s a rare disease.   I just always say, "It's a bleeding disorder".  But in actuality, it is a rare disease.  I am use to hearing the term disease to describe an illness a person catches, but not one they are born with.   A disease in fact is more than just something someone can catch, but it is defined as: an abnormal condition that affects the body of an organism.

      In the United States a rare disease is defined as any disease affecting fewer than 200,000 people. Since Hemophilia only affects 20,000 people in the U.S., it is considered a rare disease. In a need to join the community of over 7,000 other diseases that affect people in the world, Rare Disease Day was formed.   Rare Disease Day is a celebration to bring attention to these rare diseases and bring the different diseases together, across borders, to have a stronger voice and encourage research, education and funding.

      My video today was created by the Hemophilia Federation of America representing the hemophilia community in that celebration:

                     Rare Disease Day 2013 from Hemophilia Federation of America on Vimeo.

     This is the first year I've heard of Rare Disease Day and next year I hope to do more to spread the word.  I did email my newspaper, but they did not respond.  I also sent the online letter to my State Representatives.  Next year I want to do more.

Do you have a "Date Night"? - Video Thursday

    

     Today is Valentine's Day!  The day we look to our husband or significant other for a special kiss or a special gift.  If your lucky you may even get taken out for a meal, which means no cooking tonight for you!!  My husband and I don't do anything big for Valentine's Day.  He usually gets me a card from him and one from the kids. 

    

Today I stuck a little note in his lunch:

                    Roses are Red,  

                    Violets are Blue.

                    Even though you snore,

                   I want to spend the rest of my life with you!

He swears I snore louder than him.  Sometimes we record it, but the jury is still out! 

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. 

Video Thursday - Self-Infusing A Port!

     Sorry, I didn't do a video last week...you sent so many upset emails...not! LOL  The kids had me running around like crazy last week, but it did bother me I didn't do a post so I apologize.

     This week I came across a video that I thought was amazing.  A little boy self-infusing his own PORT!  I've never thought about that when my oldest son had his port!  I've never even seen anyone do it before!  What strong will power a little boy has to have to self-infuse his own port!

Micah infusing posted by Mom4hemo

 

     Has your son tried this?  Are you willing to teach him how, after seeing this?



Encouraging Your Child With Health Issues- Video Thursday

     During the Hemophilia of South Carolina 2012 Education Symposium Family Weekend, we had a session presented by Lisa Greene, BS CCP - "Winning with Hemophilia; Raising Happy Healthier Kids".  Lisa is a mother of two children with cystic fibrosis.  She co-authored a book called,"Parenting Children With Health Issues". 

     Its funny, I never thought about seeking out information on how to parent my children because they have a health issue!  During the session, some of the things Lisa discussed hit home with the things we were dealing with; even with our teenage daughter who has asthma.  Since I didn't win the book in the raffle...dang... I went to her web page to get more information.  My son is getting older and getting back to learning how to self-infuse and we'll be retiring the helmet for gym/recess next year.. yikes.  I need for him to take more responsibility with taking care of himself.

Marques practicing 2 years ago (8)..should of never stopped!

What's Wrong With A "Mama's Boy"? - Video Thursday

     My husband is a proud "Mama's Boy".  When we started dating I knew early on that Sunday was his day to spend with his Mom.  I accepted that.  To be honest with you, it was one of the things that I liked the most.  I would rag on him a little bit about it, but it was a sexy thing.




   

Disney World 2011

  With my own sons, I hope they care about me the same way.  With both of them having hemophilia, I have experienced some of the most stressful times in my life worried about them.  I have learned from their birth to be intuitive to their feelings, so I could identify bleeds.  I had to comfort them, when at the same time, hold them down so strangers could stick them with needles.  I had to contain my own  feelings in order to stick them myself.  So, I have been there for them through everything.  They have come to depend on me.  They are and forever will be "Mama's Boys".  At the same time, I know as they get older, I have start putting the responsibility of their care on them such as self-infusion and ordering their own factor.

 

Every "Super Mom" Needs Her Own Theme Music

     That may sound corny, but it is very true.  Just like in the movies when the good guy is fighting the bad guy and he starts to win....the music changes....it's his theme music coming on and we know he has this fight in the bag.  I hear music in my head as well when I have to be "Super Mom" and muster up the strength to get things done instead of just crying.

     It's crazy though, I think I've always had theme songs playing in my head, but I was too busy to realize it.  When I was married to my first husband and had my daughter my theme song was Karyn White's, "I'm Not Your Super Women". 

     That song made me cry every time I heard it....because I felt what she was singing.  Needless to say, that marriage ended in divorce after 5 years.  I know what your thinking...how was that a good song?  The song made me realize I wasn't getting what I needed from the relationship and I deserved to.  Now fast forward to my second husband.  My theme song is a lot happier..can't really share it since I want to keep this post rated PG-13. 

     Just as Karyn White's song made me realize what I needed to do for me, other songs encourage me when I need to muster up my "Super Mom" strength to do what's best for my children. 

Hemophilia: The Royal Disease - Video Thursday

     I accidentally came upon a story on YouTube about the story of Hemophilia being passed down by the Royal family.  I remember when I was younger my Dad would mention this all the time.  I have read other stories about this in the Hemophilia information books, but nothing quite as interesting as this YouTube video.

     This video was posted by Tainted Blood created by Discovery.  It explains the historical effects of hemophilia on the Royal Family and how it actually changed the course of Royal history.  I found it very interesting to know how the genetic passing of hemophilia may have changed history (.....)