Could you imagine having a child you could not bear hug?! That's like having corn flakes but no milk, pizza with no cheese or music without rhythm! I think I bear hug my children several times a day!
The random thoughts of a Mother dedicated to taking care of her sons with hemophilia, staying involved in the hemophilia community and continuing to learn about hemophilia.
Showing posts with label Hemo Mom. Show all posts
Showing posts with label Hemo Mom. Show all posts
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.
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!
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?
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%)!
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?
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.
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.
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.
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.
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.
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!
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!
Prophyholic Hemo Mom
No, the term prophyholic does not exist....yet. I just made it up as I began to think about what I wanted this blog to be about. I did not want to base this blog just on problems I encounter raising hemophiliac son's because I would not have enough content (knock on wood and praise the lord). That led me to think about how much easier things are because both of my son's are now being treated prophylaxis. I guess I need to define a couple of things before I continue:
Hemophilia - a rare inherited bleeding disorder that causes prolong bleeding and easy bruising.
Prophylaxis - (commonly shortened to prophy) Prevention of or protective treatment for disease.
I have two son's that have severe hemophilia A, Marques who is 8 and Laithan 18 mnths old. Marques has been on prophy since he was 16 mnths old. He fell out of my bed (what a heart break that was for me...I'll discuss in another post). Laithan just started prophy this March because he started having horrible spontaneous bleeds in his shoulder and hip.
So, three times a week I get my assembly line together so I can factor them up. Now, because of being on prophy I know I am avoiding them from being in horrible pain as well as improving thier long term health. I've seen the pain my Dad experienced from target joint bleeds and how it crippled him. I do not want that for my sons....therefore I am a PROPHYHOLIC - dependent upon regular infusion therapy to prevent and protect hemophilia from impacting my sons' life!
Hemophilia - a rare inherited bleeding disorder that causes prolong bleeding and easy bruising.
Prophylaxis - (commonly shortened to prophy) Prevention of or protective treatment for disease.
I have two son's that have severe hemophilia A, Marques who is 8 and Laithan 18 mnths old. Marques has been on prophy since he was 16 mnths old. He fell out of my bed (what a heart break that was for me...I'll discuss in another post). Laithan just started prophy this March because he started having horrible spontaneous bleeds in his shoulder and hip.
So, three times a week I get my assembly line together so I can factor them up. Now, because of being on prophy I know I am avoiding them from being in horrible pain as well as improving thier long term health. I've seen the pain my Dad experienced from target joint bleeds and how it crippled him. I do not want that for my sons....therefore I am a PROPHYHOLIC - dependent upon regular infusion therapy to prevent and protect hemophilia from impacting my sons' life!
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| Marques listening in on Laithan and Layla |
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