Sunday, April 15, 2012

R-E-S-P-E-C-T - This is what it means to me

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.



kayla sniezek said...

I am one of the 35 people who read your This is so true and I am thankful you put it in words. I hope more will read this and understand a little better that our children can be happy and have a fulfilled life of joy and expericences. Love. Love to Lucy

Jessica said...

Amen! Barb, this is beautiful. Nicholas is the most special child. I am fortunate to parent both an SMA child and a healthy child. Let me tell you, Nicholas's care may be different than my daughters, but it doesn't matter because I LOVE taking care of him. I also LOVE taking care of my daughter. I can honestly say that I am a better mother, wife, friend, etc. because of Nicholas. He teaches me about compassion, joy and enending love. I wish that all parents raising a disabled child could see it for what it truly is-a gift. Not something to be depressed and dismayed about, because you are right-none of know how much time we have here on Earth. And because of my faith, I know all of eternity is waiting for us in Heaven. I just love the photo of Lucy too-what a cutie pants!!

Ty Cito said...

Im also one of the 35who read this blog:) you amaze me with you're awesome attitude and I loooove your blog. me and my siblings are running in a half marathon for GSF in November and We.Are.Pumped. Our cousin Jadon has SMA type one and is almost three! We are praying for you guys and for a cure.

Lucy and Ethel said...

Some of us 35 readers are slower than others, but we are here :)

As usual, your post is perfect. And so is Lucy.


Vierna said...

I agree with everything you say here. I am also getting sick and tired of people expressing opinions not knowing anything about other people's reality. It is a big shame. I am not pro paliative care, but I would not point fingers as I don't know what is going on within those families... I can only talk within my reality, which is holding on to life because that is God's most precious gift. We chose non-invasive, and we will do tracheostomy if it is needed. In the meantime, I know that although Dee cannot talk or smile, her eyes say everything. Heck, she wants to know the in-depth of animation and to visit Pocahontas... She do arts & crafts, loves reading (and being read to), loves video-games and documentaries... Quality of life absent? I don't think so. You've got it right, and Lucy is thriving. Her genuine smile says it all. If life were easy we would not really appreciate every second of it... and that goes for palliative, NIV, trache... or people without any real illness. Really, people's stupidity by now should be considered the biggest handicap of all!

AdieM said...

I am really appreciating your insights. I also did not like the wording on Avery's Bucket list and am glad her dad did a little rewording. I think it was merely a matter of the inexperience at the time that caused the problem in that particular case. I find a great many bloggers learn as they blog about important subjects. My first lessons on SMA were from Avery's site and I am expanding my knowledge from there. I do not know anyone personally who has been diagnosed with SMA, but I feel it is important for all of us to be informed about this terrible affliction. Keep on writing. You're an inspiration and so is your lovely little girl.