Monday, September 26, 2011

Who is JB anyway? And what does it really matter?

The other day at school my seven year old was teased because she did not know who Justin Beiber was or why the other girls were so “crazy” about him. She was told, “If you do not know who JB is then you do not know ANYTHING. How stupid.” . She came home very upset about this and asked me who he was. I explained he was just a singer that a lot of girls seem to like, but that I could not tell her what songs he sings because I do not know.

You see my little girl can identify many of the Presidents and what they did in office that was special. She knows the states and many of the capitals. She knows all about other historical characters such as Benjamin Franklin, Johnny Appleseed, and Martin Luther King. She has always preferred history over pretend. I am okay with that. The lessons she can learn from people in the past are worth far more than knowing the supposed favorite color of some singer that twenty years from now will either be a footnote in musical history or worse a 30-40 something man trying to relive the glory days and failing miserably as all of his fans are now also 30-40 something and have better things to do with their money and time. I am not trying to be rude there, just noting what has happened to the vast majority of the boys de jour of the past.

She then mentioned how many of the girls are talking about having boyfriends and even wanting to kiss them. I have read a book to Savannah about a princess and her special gift – her first kiss. The premise of the book is that the kiss is so special and should be saved for marriage. Now, I am not saying that no one should kiss before marriage, but in many ways it might not be a bad idea to wait. However, I am not so strict as to try and hold her to that. However, I really like how the book champions such things and brings to light how other things are not as important as true love and respect (such as physical strength, money, flattery, etc). Here is a link to the book: The Princess and the Kiss.

All of this got me to thinking about how fast she is growing and how soon the dating years will be here. I got to thinking about what kind of boy I wanted her to meet and date and which boys should be avoided. I thought about all the mistakes I made regarding boys and all my regrets that I hope she does not have. I thought about the characteristics I want the boy(s) to possess. The same would go for Caroline as she grows. It is also the kind of guy I would want Ian to become.

I will be doing a series of blog posts, for those who are interested, about these characteristics.

Friday, September 2, 2011

NF Walk - Awareness and Fundraising

I have had NF1 my entire life. I never really talked about it before now though. People who have known me (and known me well) for years will tell you they never realized I had the disorder. I guess in some ways I was worried what people would think. I hate it when people feel sorry for me or pity me and I am the world's worst for not admitting when I could use help. I have a fiercely independent spirit and I think that caused me to keep it to myself.

Now, my children share the disorder with me and are much more affected than I am. I can no longer just stand by and not worry about it. It is now time to do something. I have decided to start doing the walks, 5K, and other awareness/fundraising type activities. The first one I plan on participating in is Great Steps for NF in Memphis, TN. It was started by a friend of mine after she found out her son has NF1. It just so happens that it is the same weekend as Savannah's next trip to St Jude, so it was perfect timing!

Below is a link to the walk itself. Those of you who live in or near Memphis, come on out if you can. If I can get enough interest it would be great to have a team there for my girls! If you would like to participate you can sign up right on the site!

Great Steps for NF - Memphis

I have also set up a fundraising page for the girls. This is so they can raise money for research. There is a lot of promising research going on right now that may either cure this horrible disorder or at least find ways to halt the progression.

Savannah and Caroline Fundraising Page

Throughout the year I will be looking for other ways that we can raise awareness and research funds.

Raising Awareness - Facebook Posts

This week many people on facebook have been posting statuses that would lead you to believe they are pregnant. When people ask, they just reply, "lol, no. I will send you a private message". It turns out that the strange status updates are to raise awareness of breast cancer. I do not really get the connection between the two, other than they both involve girly parts (although men can get breast cancer too, it is rare but it happens). Nothing is said in the status or the replies about, "I did this to make you ask questions so I could remind you that breast cancer is a serious problem". It is usually just more jokes about pregnancy. (Which is also insensitive in a way. I have several friends who struggle to get pregnant and are not able to. I have wondered how they are feeling with all these jokes about being pregnant and comments about "I would just die if it were true". I hope they are not feeling bad.)

A friend posted this status: "I'm 27 and craving awareness and a cure!
I am tired of seeing my baby fighting for his life every day. He is two I want him to just enjoy it like a two year old is supposed to!" She was making reference to her beautiful little boy who has neurofibromatosis. He is currently undergoing treatment for bilateral optic gliomas (tumors on the optic nerves in his brain). I liked her status a lot better. She said what she was raising awareness for and why. I did not feel a need to roll my eyes at another silly status, but rather teared up after reading hers. It had much more of an affect.

I decided to copy her and do the same thing, only make it apply to my situation. I put this as my status : Borrowed this idea from a friend... "I am 34 years old and craving awareness and a cure for NF. No children should have to endure what S (and now to a point C) are having to go through. I just want them to have the normal life of 2 and 7 year that does not include multiple medications and more than one medical appointment every week. One where there is an easier answer to "Am I going to die like Nana did?" " Another friend copied what I did and made it more generic to fit all moms of children with NF.

My point is to think about what you are writing when you want to raise awareness. Whatever your passion is state it and then state why. It will make much more of an impact. Fact is most people are probably ignoring the fake pregnancy posts by now..and that is sad because breast cancer is serious and does deserve awareness.