Friday, April 27, 2012

Lucy Loves

Some things that can usually, on any given day, produce the shining smile you see above:

- asking her if she wants to brush her teeth
- hearing the title or seeing the cover of one of her favorite stories
- talking to Daddy on the phone
- talking on the phone in general
- her bipap
- hearing how pretty she is
- hearing how smart she is
- hearing how wonderful she is
- hearing how sweet she is - if daddies have an irreplaceable impact on their daughters' self-esteem, Lucy will be running for Miss America and President when she is 18, if not sooner
- the theme song to almost any NickJr show, whether she likes the actual show or not; Pocoyo is a current fav
- stretching and rubbing of her feet after a day in AFOs
- being told it's bath time
- asking her if she wants to go on a walk
- helping her dance with the Gabba gang (go, go, go Lucy!  do the Lucy!)
- me whipping my now long hair at her
- bedtime hugging of her dolly
- having songs sung to her (Old MacDonald and any Ernie tune are at the top of the list)
- me biting off her fingernails and spitting them out (I'm still afraid to use a clippers!)
- the end of her bedtime prayer, when we say "Please help us cure SMA, and please help us... understand... Lucy!"
- asking her if she wants some ice cream, or juice
- biting her cheek and making "nomming" noises while telling her that's what tigers do (new today!)
- asking her if she wants to "fly!" (tossing a SMA kid in the air sure has built up my upper body strength!)
- me shrieking into her chest during dance time
- telling her "no" (we're working on that being less funny and more discipline-like)
- this song
- telling her she made a good outfit choice after she picks one out
- us sniffing her hands and telling her they're stinky
- falling asleep - she closes her eyes and starts smiling and squealing softly
- Sesame Street!
- asking her if she's happy

Things that tend to tick Lucy off, causing tantrums of sometimes epic proportions:

- us not doing something fast enough for her - not grabbing a book immediately when we ask if she wants to read or not turning a page promptly, mostly; or mentioning something she wants and not immediately producing said thing
- nasal suctioning - we don't do deep-nasal suctioning, this is just generally booger removing; guessing she wouldn't be a nose-picker
- being woken up before she wakes up of her own accord (doesn't it annoy everyone?)
- not letting her immediately talk on the phone when she sees me (or hears me) on it; the phone has become a big thing for her lately
- quarterly blood draws - Noni is the best phlebotomist on the face of the earth, and Lucy hates her with a passion
- Daddy brushing her hair - ouch!

So she's a pretty typical toddler.  Besides the machines, being almost completely paralyzed, and not having the ability to talk.  Inside that sweet, beautiful, immobile body - the body kept alive with bipap, cough assist, pulse ox, g-tube - there is a regular toddler.  One who is usually happy, sometimes tired and cranky, sometimes impatient and belligerent.  One who is sassy and sweet and determined, and one who gets frustrated.

One who fights.

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.

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.