Knowledge vs. Ignorance

Knowledge is Power or Ignorance is Bliss??

Kyle and I have joined the Sturge-Weber Foundation.  As part of that, we joined the Sturge-Weber support group on Yahoo.  I was looking forward to connecting with other families on this journey and hearing their stories versus reading about the syndrome on medical websites.  I think I should have stuck to the medical websites!!!  Holy heartbreaking!

I made an introductory post and received so many wonderful responses from group members.  Everyone was so welcoming and offered their personal email addresses should we have more questions or want to connect outside of the Group.  I was so overwhelmed by their responses and loved hearing about their children that are living with SW.

Then I started looking at past posts and one after the other seemed to be about children and families struggling with the worst the Syndrome offers.  Undergoing hemispherectomies to control seizures, blindness, shunts, parents being told to "make their child comfortable"... WTF?? (sorry Nana, that's an acronym with a curse word - no way to sugar coat it) I sought out stories of children with birthmarks less pronounced than Ashlyn's or children that were progressing well in their development like Ashlyn, thinking that these might be indicators of the severity of the Syndrome.  . Wrong - very wrong, although children with bilateral SW do seem to have more complications.  AH!  I have stepped away from the Group for a little bit. 

Kyle and I spent about 9 months thinking of names suitable for a professional; envisioning her name on a business card.  I'm sorry but I didn't envision her name on the nameplate of a bagger at the grocery store.  I am mad and sad that my baby girl may be limited in what she can accomplish in life (jobs, driving, dating, kids-I know, "she's only 6 weeks old, slow down").  At the same time, I do want her to succeed in anyway she can, and if that means that being a bagger gives her a sense of self worth and makes her happy then I couldn't ask for more.  I just keep repeating, "Welcome to Holland." Ugh.  Such a mix of emotions right now.


I am hopeful that this blog will someday tell a tale of a family that struggled with their daughter's SW diagnosis but took each hurdle one at a time, overcame all odds and offers a story of hope for families.  And to those families struggling with the worst this Syndrome has to offer, my heart absolutely breaks for them. 

So, to be knowledgeable or to be ignorant?  I suppose I will make that decision on a day-to-day basis.  Perhaps the sanest path we can take right now is to put blinders on, seek out the best team of medical professionals, and "see what she shows us."   I apologize for the rambling... if you can't tell, I'm trying to give us advice and writing it out seems to be the best way for me to make sense of a difficult situation.

BUT, to update you on Miss Ashlyn.  She's doing great.  She's alert and strong and a happy baby. We bought her first Xmas dress, and when we put it on her she was instantly all smiles. Love this little girl.