Time to dust off the blog.
Lately I have been seeing more parents of children with SMA talking about quality of life - specifically, newly diagnosed families blatantly stating that children with SMA do not have a good quality of life. This is disturbing to me, to say the least.
If you are one of the 35 people who will probably read this post, you know Lucy and know that the previous statement couldn't be farther from the truth. But for the thousands of people who are reading posts from blogs like this - where it says "In some cases children like me can survive with the dependency of a respirator, but their quality of life is not very good and more often than not, the life expectancy is still less than ten years of age and even lasting past two years of life is not guaranteed" - they aren't exposed to a Lucy, and will not know any different. They will think that an extended life with SMA is all doctors appointments and crying and misery, and "prolonging the inevitable."
Incidentally, is anyone guaranteed a long, healthy life? Because you are born without SMA, are you guaranteed to survive past two years old? Shouldn't you just stop eating now - you're only prolonging the inevitable? Death is inevitable for all of us. Life is terminal.
I do my best to keep my opinions - because that is what they are, opinions - to myself, out of respect and compassion for other families. Not everyone chose the road that we did, and it is not up to me to decide whether their choice was the right one. But if it is offensive for me to say that I think people may choose a palliative (read: hospice) route because they are not willing to put in the effort, or because they think they may have to alter their lives too drastically, isn't it equally offensive for them to state as gospel truth that children like mine have a poor quality of life? Both statements are making assumptions regarding a life they know nothing about - yet one is appalling and one is acceptable?
I ask - who has determined that these children have a poor quality of life? Their doctors? Nurses? Grandparents? Neighbors? Parents? Or the children themselves? Sadly, since most are diagnosed so young, we can't ask them how they feel when we get the news. We don't know what they would want for themselves. We can only do what we see to be in the best interests of their health and happiness. What I see in Lucy is a happy girl. Is she happy all of the time? No. Is your "healthy" child happy 100% of the time?
Will there be hardships ahead for her, and for us as her parents? Most likely. Have our lives had to drastically alter? Yep. Do I think that I made the wrong choice? Hell no. I will make any changes necessary to my life to help her live hers. Does it look like I am selfishly "prolonging the inevitable?" What do you think?
If people really want to make a difference, they will get the message out there with a link to an organization that is FUNDING LIFESAVING RESEARCH - something else that blog misrepresented. There is in fact clinical research going on, right now. Take your pick of the sites below if you *really* want to make a difference.
I have respect for parents' choices for their child, though I may not agree, and would not presume to say all parents who choose hospice are lazy and don't want the trouble of caring for a special needs child. I expect parents who choose hospice to have that same respect for families who choose to fight, and to refrain from making sweeping false statements regarding the quality of life for children they know nothing about.