Raising Awareness for Hydrocephalus

Dear Savannah,

  September is hydrocephalus awareness month so I have set out with a goal, to raise awareness. I have been posting several statistics on my Facebook page along with fundraising for the upcoming hydrocephalus walk in Cambridge. I love that we can be a small part of something so big. This is all for you lovebug. You are teaching me all kinds of things. I sure do love you.

In this process, I created a team to honor you. Daddy and I are both part of the team. My good friends Kelli and Heather and their children, along with Mimi, will be walking too.  For some reason, your Aunt Eileen decided to go against our team by not joining ours but creating her own page and recruiting Daddy's aunts, mom, and cousins for donations. She was unaware of the walk before I started raising awareness and I am extremely upset. Daddy and I are happy that funds are being raised for hydrocephalus, we are both just very hurt by the lack of support from his family.

I know this wasn't  done to hurt you or Daddy, but rather to hurt me. I don't have the best relationship with Eileen because of the lack of understanding and support since your birth. On the day of your surgery, I didn't want any visitors. Handing you over to a brain surgeon was the scariest thing I have ever faced in my life. I was trusting him with the most precious thing on earth, you. I wanted to go back to our room and cry, with just Daddy. I needed him and if we had visitors, I wouldn't have him.  I upset them by saying "no" to the idea of visitors. This is one place it started. I had also had an issue with Eileen because I was very upset with her for posting a picture of you on facebook (before I even had the chance) something I had been waiting for nine months to do. While I understand the pride in becoming an aunt, common courtesy is to ask permission to post a photo of a child that is not yours. I wasn't nice about it, nor should I have been, especially the second time she did this (within a few weeks) after Daddy asked her not too. So, needless to say we don't get along and everyone else just follows suit. They all love you but they do not understand how to support us as a family.

Anyway, back to the walk, our original go was $750 and we have raised more that $2300. I have great family and friends supporting us and this cause and we have had many generous donors that we don't personally know by spreading the word and raising awareness.  My heart is full from doing something for you, in hopes that someday there will be a cure. Acts of kindness are so heart warming!!

I want you to know I love you so, so, much.

Love, Mommy