Hemophilia is not Fair!

I could not believe what one man said to me when he inquired about my son's hemophilia. He said me that "I should not be so overprotective and that I should let him  enjoy life without him having to endure those infusions so muchthat makes him feel like he is walking on egg shells." I thought to myself "no you did not say that to me!" I replied well "do you think Hemophilia is fair? Do you think that me not giving him factor is fair to him or even make it fair for him to do what other normal children take for granted? needless to say I did walk  away feeling very angry and my energy felt drained.

 I have seen these same comments to many other parents in groups and even on their social network pages. I'm thinking these clotters don't get it do they?! HEMOPHILIA IS NOT FAIR! I actually read a few weeks ago on a friend's facebook page this comment "I'm glad that he doesn't walk on eggshells and live the "padded" life that some doctors would recommend for a hemophiliac. I can't imagine a bigger disappointment than living a sheltered life and one day dying without even a scar to prove that I had a good time while I was here." Now while some of that statement might be partly true for most people the fact is a child with  hemophilia makes it unfair for them to even compete with normal clotters. And not to mention scars are not overly desired by most people.That is why we give them factor treatments 2-3 times a week so that it makes it fair for them to play like normal clotters especially encourage boys to be just boys. So by-Gd  if he or she gets hurt and not get scarred (Gd forbid tuff tuff) at least it would be because they are being children and enjoying their life to the fullest not because they have a bleeding disorder!

Regular physical exercise is important to everyone’s health.  People who have bleeding disorders should talk to the doctors and nurses at their Hemophilia Treatment Center (HTC) about which sports and activities are appropriate for them, but I have yet to see where Hemophiliacs not play sports it all depends on the family and the child's choices.  People with mild disorders may not have to avoid any activities.  Others may have to stay away from rough sports like football and hockey. Believe me there are plenty of hemophiliac that do play hockey and Football.  Some activities like swimming, walking, and golf are okay for everyone.  But I want to empower my son to just be normal and be on a even keel with normal clotters so I factor my son  up so that when he does get hurt at least it is because he is tasting life as a normal boy not because he has Hemophilia. That is why we chose not to get a port that would disable him giving himself his own treatment, but to teach him to infuse himself so he feel in control of hemophilia not let hemophilia control him. Talk about enjoying life to the fullest.  The standard treatment of hemophilia today is factor replacement by intravenous infusion helps hemophiliacs to enjoy a normal life. Am I  a overprotective mother? Sure what mother wouldn't be, but at least I can breathe and let him be himself and have fun without so much worry within himself.

I'm writing this blog because I'm concerned that there are parents out there that would listen to uneducated clotters who make mishuga comments like that. Then in turn chose not infuse their child because they feel they are somehow neglecting their child's joy in life. Not giving enough factor is neglect and hurts the child more than if he was given factor often. Whats a few needle pokes a week? verses a lifetime of feeling empowered and can achieve normal play. Heck get a port if need be. But no parent/s should never feel that kind of pressure from someone who clots normal and have no idea what they are even talking about. Well I hope this help make it easier for clotters to get it. HEMOPHILIA IS NOT FAIR, but we can and do have a way to make it easier and fair for our children to enjoy life to the fullest. Giving them factor is not overprotection it's playing fair with ALL You Clotters our there!

 

 

 

 

The Scents of Shabbos and it’s Holy Sparks.

Something that I wrote when I was studying Aromatherapy

The Scents of Shabbos and it’s Holy Sparks.

Written by Rivka Sari    For Lesson 11 Tiferet Basic Aromatherapy

 

Shabbat dinner begins with kiddush, the blessing of the wine that sanctifies the Sabbath day.  I can smell the sweet wine being poured into my glass by guest or sibling that is sitting next to me.  As my Papa of blessed memory holds the goblet of wine I begin to imagine that it is the womb of the universe, the place of eternal creation. My Papa recite over it the biblical verses that tell the story of the making of the world from the sidur. Then all who are sharing the meal go to wash their hands, an act of ritual purification before the blessing over bread. For me, this is the stage of water of flowing together in fellowship, of lifting up our hearts as holy together as a family. I remember that G-d is called “makor mayim chayim” the source of living waters, the one who flows through all things. In the background I smell the matza ball soup mixed with the smell of dakah a spicy nut dish that make everything feel holy during the washing of hands. Washing is a way for me to feel as if my Shabbat table is a temple, because the priests in the Temple in Jerusalem washed before serving Hakodesh Barechu.  It is also a way for me to feel connected to the flow of life.

Then the challah, the special braided bread that honors women who prepare the home for Shabbos. My mother works tirelessly every week to make our home lovely and clean for Shabbos and she works so hard to the making of the best and most beautiful braided loaves of Challah. The smell of her sweet soft bread coming out of the oven just send me to another time and space. This is where shabbas really begins for me. From it’s sweet aroma I imagine that it honors and is the smell of the Shekhinah, keeper of life and death, and also the earth which gives us grain. We sprinkle the challah with salt before we eat it as a sign that it is holy, just as the holy sacrifices in the Temple were sprinkled with salt. The challah smell for me is the sign of the cycle of life—the harvested grain we need to keep ourselves separate and apart from the world and be alive in Torah and Mitzvos which is “the Bread of Life”. The bread of the Sabbos meal it’s smell reminds me that I eat through the sacrifice of life, and reminds me of my responsibility to make my life worthwhile. According to the teachings of Isaac Luria, when we eat consciously, we release the holy divine sparks within the food, within the physical substance of being, and allow them to fly upward. For me it’s not just the eating but the smells of Shabbos that releases those divine sparks that ascend upward to Hashem. The smelling of the ketoret is like all the the smells of Shabbos combined, thus when we end Shabbos with smell of spices for havdalla we end connected to the Divine Holiness of Hashem through the holy sense of our smell.

Smell is considered the loftiest and most transcendent sense....All other senses desire forbidden things while the nose remains ”holy"...Arizal connects the sense of smell to the month of Adar..."
Arizal connects the sense of smell to the month of Adar, the month that contains the holiday of Purim. The heroes of that holiday Purim were Mordechai and Esther, both of whom have a connection to scent. Esther’s real name was Hadassah, which means myrtle (a good smelling plant). And the Talmud relates the name Mordechai to Mor diror, which is musk (Bnei Yissaschar).  Together they were all the smells of  Gan Aden.

So to me Shabbos is the smell of the world to come and smells of year around holidays is just a preview of all the smells we will encounter at the Tree of Life in Jerusalem when Moshiach arrives to Rebuild our Beis HaMikdash. May it be soon in our days.

 

 

 

Jewish and Ginger

Growing up Jewish was hard enough in the southern hemisphere of the US, but being ginger redhead on top of it was extremely hard for me growing up. Father was military and we moved from one place to another so the teasing never changed it was the same no matter what language, culture, or country we lived in. It was the same every where. Cultural reactions have varied from ridicule to admiration; many common stereotypes exist regarding redheads and they are often portrayed as fiery-tempered. Which is quite true for me. Well in all honesty I can say we do have fiery tempers. but probly no more than anyone else does with blonde or brown hair.

 As I grew up I developed a love- hate relationship with my ginger roots (in America all ginger roots are called "red hair" or a "redhead" or even "carrot top"). Funny now that I'm more frum, I do wear a ginger haired sheital (wig) because I have come to embrace my natural hair color more. While I have tried other colors in a sheital (wig), red just looks the best and more natural on me.

In the last year or so I have noticed this my ginger roots are turning pure white and a bit more blonde. I guess it is fading since I'm older. However a  fun fact is red hair never really grey out. It either turns white or fades to a pale strawberry blonde. Somehow I must cope with getting older, and  yes I do wish I had enjoyed my hair more when I was single and appreciate the beauty and rarity of it. Did you know we are 4% of the world's population? Yup we are a rarity indeed. When I was a child my hair was so dark that from a distance that it looked brown but when you walked closer it was obvious I was a redhead gingersnap. 

                                (Me at age 3 -Picture is  Copyright by Rivka Sari 2013)
                                                          
                                                       

I remember a few ginger head boys in Hebrew school in Nashville and the teasing oy  gevauld it was murder for them and scary to watch Jewish kids doing it too.The teasing was worse than a ginger girl would endure. Together both redheaded boys and girls however got teased in secular schools for being red haired and for being Jewish which was horrible especially when going through the teen years. That was painful!
I hate to even admit it to myself, but being the mother of two sons, I was ever so glad neither of them were redheads. I just didn't want to think of my own children experiencing the painful growth through their teen years as I had seen other young boys in school and community go through. What scares me the most is very often I notice that when young boys commit suicide due to bullying, a high rate of them are redheads. With this hair color being the rarest on earth, what does that say? Appalling!

A positive note on being a ginger and Jewish that is the rarest of all we are less then 1% of the Jewish population. I like to think we are a rare gem among the rare treasures of the smallest people in the world. That is something to be proud about.  Red hair is also fairly common amongst the Ashkenazi Jewish populations, possibly because of the influx of European DNA over a period of centuries. In Italy, red hair was associated with Italian Jews. Not sure as to why really that is, but also writers from Shakespeare to Dickens would identify Jewish characters by giving them red hair. A book called "The 7 Daughters of Eve" which traces the redheads from the Middle East to Italy, Spain, France, and then northward. So this maybe why the writers did this knowing we may have originated from the middle east. King David was said to have had red hair and a ruddy complexion or pale skin. I have even seen commentaries that state the prophets were redheads also. What is odd is when you see a redhead with brown eyes. That is also rarest to site a redhead with brown eyes and my sister was the lucky one and got the brown eyes. I so wanted brown eyes growing up.

(My brown eyed baby sister Matey Rachel-Picture copyright by Rivka Sari 2013)

Red hair is the rarest natural hair color in humans. The non-tanning skin associated with red hair may have been advantageous in
far-northern climates where sunlight is scarce. Studies by Bodmer and Cavalli-Sforza (1976) hypothesized that lighter skin pigmentation prevents rickets in colder climates by encouraging higher levels of Vitamin D production and also allows the individual to retain heat better than someone with darker skin. speaking of Vitamin D as a redhead ginger top I was told by my doctor we are the lowest in Vitamin D simply because we burn and avoid the sun. So "I do not tan I stroke" as the saying goes according to Woody Allen. However when I started taking 5000IU of vitamin D3 a day in the summer and 10,000IU a day in the winter. I have not had the sniffles of a cold or flu since May 2009. So ginger tops take your Vitamin D3 you will be glad you did it will make you feel good. Yes I do get out in the sun need to tank up for the winter months. It is ok as long as it is no longer that 15-25 mins a day.

Check out all about redheads and how the gene works http://www.brighthub.com/science/genetics/articles/4704.aspx



This has been considered characteristic of the Jews by some anthropologists. It appears to be not of recent origin, and was not unknown among the ancient Hebrews (Esau was "red, all over like a hairy garment"; Bresheit (Genesis) 25). Andree ("Zur Volkskunde der Juden," pp. 34-40) points out that the fact that red and blond Jews are found in North Africa, Syria, Arabia, Persia, etc., is proof that intermarriage has had little to do with the production of the blond type in eastern Europe. He is of the opinion that there were blonds among the ancient Hebrews, and that the modern red and blond Jews are their descendants. Many Jewish commentaries agrees in this view. The popular Jewish legends do not mention a Khazar kingdom but a kingdom of the red Jews, red being the color of their hair and maybe due to the mongoloid pigmentation of many Khazars."

Well that being said being a Jewish red head ginger top is so rare even when red hair gene occurs in all human ethnic groups. More frequently in some and less so in others. In the case of European Jews it might have something to do with the widespread Indo-European genes ( specifically, Celtic, Germanic and Slavic) in the gene pools of east and central European Ashkenazi and Spanish Shephardic Jews also. Being that we are less than 1% of a population that is 1.3% of the world's population, All I can say is Wow!! We are a miracle and being a redheaded Jewess in this world is a honor I'm not taking it lightly. That love- hate relationship of my hair has changed late in my life to love and I have a whole new level of respect for me.

 

 

 

 

The Pain of Loss

A Dear couple lost their baby yesterday that she carried for 23 weeks. Today she would have been 24 weeks and she was induced into labor today. As I sat here thinking of my friends and their devastating and deeply painful loss of their baby girl. I cannot help, but think of my own losses and am so relating to their pain right now and how it's devastating to them to endure this kind of pain in losing their first child. It is such a pain no one woman ever forgets.

Most people who know me may or may not know that I lost three singleton pregnancies 2002, 2003, and 2009. I also suffered a loss of twin girls in 2008 in this same month of May a few days before mother's day. Thinking of my own great pain, I feel and know their pain and the deepness of it , which is what no words can describe. My friends must feel no true comfort outside of Hashem right now. Nothing can ever ease or erase such pain and loss.

I remember reading Chana's prayer when I lost my twins, pouring my heart out as Chana had, asking Hashem for comfort. And I did find some comfort. Not because the pain was lessened or the loss was any different, but because I realized, there are no answers, but there is always prayer. There is prayer wherever there is  Chana.

Chana stands for the 3 Mitzvos of a women. "Chet" for "Challah (baking the holiday bread)", "Nun" for "Niddah (the Jewish Laws of Family Purity)", and "Hey" for "Hadlakot Haneirot (lighting the Sabbath candles)". In Chana's name, she shows us the 3 auspicious times for a women to pray. When she makes Challah, when she goes to the Mikvah, and when she lights the Shabbos candles.
 
The loss of a child, be it early on or late in pregnancy, is something so beyond our understanding. The pain is so real, so deep, and yet there is so very little to ease it, The pain is never forgotten, not lessens over time or ever leaves us. This is especially true for my friends today because they lost their first child. The pain of holding their still born daughter and letting her go is beyond words.

  I do know when all the hurt, anger, bitterness and despair, fills me that is precisely when I feel there is no where to turn- but to Hashem. The loss is so way beyond the comfort of friends or anything physical. And that's what made me realize, I need to turn to something greater than myself, greater than this world, because that is the only place I can find comfort. No-one, not even our parents, or our spouses, know the pain in our hearts as the child's mother. But Hashem, our creator, knows it all.

 
This Shabbas I will be lighting our Shabbos candles for this couple and pray in the memory of their baby girl. I'm praying Hashem will bring them comfort and great peace in Him.

Baruch Dayan Emes

Reference:
"Now Hannah, she spoke in her heart." (I Shmuel 1:13) R. Eleazar said in the name of R. Jose b. Zimra: She spoke concerning her heart. She said before Him: Sovereign of the Universe, among all the things that You have created in a woman, You have not created one without a purpose: eyes to see, ears to hear, a nose to smell, a mouth to speak, hands to do work, legs to walk with, breasts to nurse. These breasts that You have put on my heart, are they not to nurse? Give me a son, so that I may nurse with them. (Brachot 31b)

The Hidden Story of Purim

Did you know that the story of Purim took place in Iran? Yes it did and it was named Persia not Iran. But there is more interesting details that we have overlooked and that is where are the tombs of Mordechai and Esther?

According to Esther 2:7, Esther was originally named Hadassah. Hadassah means "myrtle" in Hebrew. It has been conjectured that the name Esther is derived from a reconstructed Median word astra meaning myrtle or hidden. Given the great historical link between Persian and Jewish history, modern day Persian Jews are called "Esther's Children". A building known as the Tomb of Esther and Mordechai is located in Hamadan, Iran, although the village of Kfar Bar'am in northern Israel also claims to be the burial place of Queen Esther. A few years ago, the normally hostile Iranian regime took the rather unusual step of adding a Jewish holy site to its National Heritage List.  Reguardless both sites are perserved and protected.

It is said that Morechai is in Iran and Queen Esther is in Israel. I'm not certain which place is correct or who is where. It is a fact that the high mountains of Iran that there is a city called Hamadan. BUT, notice that if you remove a “da” from Hamadan, you get “Haman.”  Haman, by the way was the one who tried to get Mordecai hung, but instead was hanged on the gallows that he had built for Mordecai (Esther 7:9-10). I don’t know when Hamadan was renamed, but at one time it was called “Shushan,” and that is where the Queen Esther and Mordechai story takes place.
 
There is a tomb for Queen Esther and Mordechai, and that tomb was built right in the middle of what is now known as Hamadan, but was indeed recorded as being Shulshan Persia.
Iran has the largest Jewish community in the Middle East -20,000 to 25,000 by different estimates after Israel, and the shrine is visited by many pilgrims every year.

Iranian Jews revered the shrine, and many would travel to Hamadan to observe Purim there by reading the Megillah alongside the tomb. Others held family celebrations, such as bar-mitzvahs or circumcisions, at the site.

The entrance to the building is said to have been built intentionally low, in order to compel visitors to bow their heads upon entering, thereby engendering a requisite attitude of respect. Inside the main hall, which is adorned with Hebrew inscriptions, lie two large, decorated wooden boxes, or trunks, below which are said to be the final resting places of Mordechai and Esther.

A small synagogue adjoins the tomb, and the site is also considered holy by Muslims and Christians, who come to pray there as well.

Next to the mausoleum lies a large hollow in the ground, which Iranian Jews believe to be an entrance to a tunnel that stretches all the way to Jerusalem.

See picture here inside:

https://upload.wikimedia.org/wikipedia/commons/e/ee/Tomb_of_Ester_and_Mordechai_interior.jpg

The article entitled, "Who is Buried in Queen Esther's Tomb?" states:

"While various monuments in Persia have been cited as their burial place, a strong alternate tradition indicates that even though both Esther and Mordechai died in the Persian capital city of Shushan, they were brought to Eretz Israel for burial. Written tradition from the Middle Ages locates the burial place in the Galilean village of Bar'am, along Israel's northern border with Lebanon."

Apparently, this written tradition began with the account of HaRav Shmuel ben Shimshon who visited the site Bar'am in 1211. In 1537, the sefer Yichus Ho'ovos Vehanivi'im recorded, that "every Shushan Purim a minyan goes to her grave [in Bar'am] from Tsefas and reads the Megillah there."

The article later notes that knowledge of the exact location of the kevarim was lost over the centuries. The site identified today as the kevarim of Mordechai and Esther is located "more than a kilometer southwest of the ruins of ancient Bar'am".

As early as 1215, Rabbi Menachem Ha-Hevroni wrote that while visiting the Galilee, he came across the tomb of Queen Esther, "who, during her lifetime, had instructed her son Cyrus to bring her there [for burial]". Later pilgrims mentioned the site, and noted that special celebrations were held there on Shushan Purim. Currently, the tomb is believed to be located in the ruins of a building found in the Baram National Park.

Why is this hidden?  Maybe it does not matter where they are buried? Or perhaps Queen Esther wanted it this way to teach us a new lesson or continue to teach us new and hidden messages? Even while I can not say with any certainty which of the two locations is more authentic or correct, of one thing we can all be sure: the deeds of these two great Jewish people will never fade from our collective memory. As the Megillah (9:28) itself tells us: "and these days of Purim shall not pass from among the Jews, and their memory shall not elapse from among their descendants".

Daddy Come Home

For all who have served , who are military brats or are now serving in either America or Israel. For all those Daddy's who did not come home too PLEASE  Hashem Please Bring ALL the Daddys Home to their Families and bring Peace with Moshiach Now!!!!

Enjoy this touching video.
For all of those who served/serving our country and those who are guarding the holy land of Israel!

http://www.youtube.com/watch?feature=player_embedded&v=xF7UVW6PLig



Shalu Shalom Yerushalyim!
"שאלו שלום ירושלים"
Psalms 122:6

Raising Jewish Kids.

I do not raise my children to be Jewish, I raise my Jewish children.
Amazing how confused Jewish parents are about that when it comes to their children.
One local Jewish community member says to me "I'm raising my children Jewish" and I said "Huh! I'm raising Jewish children" and she turns to me and says "WOW! That is a good point!"

No Jewish parent should ever allow any community to raise their...

Jewish children and tell them they have to be Jewish when somehow all those precious Jewish children were not born Jewish enough. WHAT?! Amazing how Jewish Parents do not understand they are raising Jewish children in their Jewish homes with their Jewish values. It all starts in the home first. Jewish Community is in the home first. Your home sets the pace for your child on if they will be Shomer Shabbos and keep Jewish values of Torah and Mitvos and someday marry someone Jewish.

Then She asks me "What about Jewish Education are they not helping parents to raise their kids to be more Jewish?"
And I said to her, "Jewish education institutions is fine as long as you understand those institutions are educating Jewish children with their Jewish values, and not educationg your children to be Jewish". She says, "I guess I need to rethink my thinker".

Make the changes you need to to give your Jewish children the Jewish community (your home) where they can be themselves as Jewish children first. Being in outside Jewish community and getting a Jewish School Education is just refining the values they should already have. Parents you have the power is in you to guide the precious Jewish childrenyou have been given to stay Jewish. After all isn't that really what you are concerned about?