Wednesday, April 18, 2012

A Thank You and a Clarification

Anyone who read my last post could probably tell I was a bit perturbed.  I get hotly defensive regarding Lucy, and I have a bad track record of not being able to silence the nagging voice that says "Just say something... just say something..."  And the internet gives me the forum to say those somethings.

Thankfully, it also gave me the opportunity to contact Avery's dad, who so graciously listened to my rambling explanations about why this was haunting me, and very reasonably agreed to change the wording on his blog, which is getting some real exposure.  The initial post now does not include any statements about quality of life for children with SMA.

I also wanted to clear up - for those who read this blog but do not have access to my Facebook page - that I was not trying to make any accusations regarding parents who choose hospice care for their children.  As I said on my page, I will not make absolute statements about any path but the one we chose, and then I can only attest to our own personal experiences.  That being said, do I think all parents are only thinking of their children when making the decision of whether to go with hospice or something more aggressive?  No, and that goes both ways.  We see day after day in the news horrific stories of what some parents are capable of.  I know this world is not full of parents who only take their child's well-being into consideration when making life decisions.  We are all human.  Even special needs parents.  Just a few weeks ago, I read three separate stories about kids with cerebral palsy whose parents killed them, in various ways.  Obviously we can't say that all parents with special needs children are doing what's best for them.

I do believe, though, that the majority do what they think is right.  Whether that is to pursue treatments or to let their children go is not up to me to decide - I am responsible for Lucy, no one else.  It's not my place to make those calls, or judge them afterwards.  I am not the one who has to live with the outcomes of those choices, so it's really none of my business.  I just do my best to share hope, because that is what I know. 

I'd like to leave you with another blog written by a truly well-spoken mom to a SMA angel.  She weighed in on this debate as someone who has experienced the loss of her child, and what this debate over palliative/hospice vs. non-invasive/trach has meant to her.  Thanks Audra, for always speaking your heart.

If you find it in your heart to help us fund research that has the hope of being lifesaving and life changing for children born with SMA, please check out the "HOW YOU CAN HELP" tab located at the top of this blog.  There are a few charities that you can donate to, and the money donated will help fund programs that will change Lucy's life, and the lives of many living with and those yet-to-be-born with SMA.