What Two Means

So now that we're well on our way to September and far past Lucy's milestone second birthday, I feel I can blog about it.  Too much pressure and expectation near the actual day.  I do my best writing randomly ;)

As I'm sure you all know, (or should if you are reading this - if not check out the SMA tab on this blog and educate yourself) ninety percent of children diagnosed with SMA don't make it to their second birthday.  Lucy has.  Lucy has made it there, past there, and will continue to make it.

Negativity is not something that will help Lucy, or help us as her parents and caregivers.  Some people choose to call their negativity "realism".  That being said, this disease is different for everyone.  What is honest-to-goodness realism in regards to one child may be viewed as unnecessary negativity when applied to Lucy's situation.  And sometimes people are just negative - for what purpose, I don't know.  Pity?  Attention?  Depression?  Any way you slice it, negativity is not going to help you or your child thrive.

Raising SMA awareness tends to be a double-edged sword.  I want people to understand the severity of the disease, but I don't want it limiting their thinking of Lucy.  Lucy just isn't a child we make fit into this world; we make her world fit her.  She's a toddler, and she likes toddler things - mainly copping an attitude when things aren't going her way.  And we do those toddler things with her.  Coloring.  Reading stories.  Watching Sesame Street.  Playing on the iPad.  And there are some things that we do for her that you don't do for your kids; keeping her healthy takes a little more than a Flintstone chewable and making sure she finishes her vegetables.  But it's our life.  We are happy.  We don't get vacation.  We don't get date nights.  Ever.  We work around the clock.  And yet we are happy.  Why?  Well, one very big reason is because Lucy is doing so well.  But it's also because we CHOOSE to be.  Whining about what should be or could be or won't be isn't going to change what is.

Now, that's not to undermine the pain of SMA.  It hurts.  It's hard.  But if you let those thoughts constantly overtake your conscious, you are doing yourself and your child a great disservice.  I wouldn't even say I have bad days; I have bad moments.  Because if you let it go any longer than that, you're just poisoning time that you could spend being happy.  And there's no one to blame for that but yourself.

I've addressed this because when you hear the above statistic, it may lead you to think that since Lucy is two, she is living on borrowed time.  To me, that's negative.  Lucy is penning her own story, with God as her ghostwriter.  Because the phrase "statistics say" doesn't mean jack around here.

Lucy had a great second birthday.  It was with family and friends (including the lovely Brianna McDanel!), cake and ice cream, and presents.  Last year, after her first birthday (a huge bash in a ballroom), I thought we would be doing something even bigger for her second, since in the SMA world it's a big deal.  But when it got closer, I didn't feel it was the way we wanted to celebrate this year.  Yes, I'm thrilled that she's beating the odds, and we celebrate every milestone - but to me, she's a regular kid.  Maybe some years we'll have big blowouts, but I'd be lying if I said I wasn't expecting to celebrate more birthdays with her.  You can call that thinking whatever you want - for us, it's our reality.  

'Twas the Month of SMA Awareness

Twas the month of SMA awareness, and all over the world
Against all new mothers, sweet babies are curled.
Their newborn clothes hung in the closet with care,
In hopes that they soon will be big enough to wear.

These babies are nestled all snug in their beds,
While visions of birthday parties dance in their parents' heads.
First bike rides, first dances, a high school graduation -
Perhaps even sending out their wedding invitations.

When at the doctor's office, there will arise such a clatter,
Specialists will be called, to see what's the matter.
Away for tests, these babies are whisked like a flash,
For it's something far worse than a cough or a rash.

Blood draws, MRIs, and so much more to go,
You shake your head, cry, scream out the word "NO!"
Something that's worse than any of your fears -
Your child's life may be over in less than two years.

"SMA" the doctors say, and you stumble on the words,
This isn't a name that you've ever heard.
Why weren't you tested, before your baby came?
Spinal Muscular Atrophy, you shudder at the name.

Now pulse ox, now cough assist, now bipap and g-tube.
They can't cough, they can't breathe, they'll choke on their own food.
To the therapist's office!  Break down insurance's wall!
Respiratory treatments, surgery, surgery for all!

As you learn your child, your worries will fly,
When you meet with an obstacle, you will fight - sometimes cry.
So up against the world, to the naysayers, say "Shoo!"
You and your child have lots of living to do.

And then, in a twinkling, your child will grow,
When all those doctors told you to prepare for them to go.
You realize that your child is the one making the rules,
And it's leaving these doctors stumbling like fools.

Though your child may never put weight on a foot,
They are stronger than most - you can tell with a look.
They are always moving forward, no time to look back,
So inspiring, they leave no time for you to slack.

Their eyes - how they twinkle!  Their faces - so sweet!
Their skin is so soft, minds as sharp as any you'll meet.
Mouths that may never utter a word,
These children don't need voices to be heard.

They have parents - our children are blessings bestowed.
To enrich our lives, to help us be bold.
To teach us that what we feel in our heart,
Is more than enough to give us a start.

To find them a cure, to show them we care,
To tell them no matter what, we'll always be there.
Fighting with doctors, with insurance, with school.
To give them the chance, to provide them the tools.

And to spread on the message, to get out the word -
Because we're their voices, we need to be heard.
Not just this month, though it's a good place to start.
Determination must be in EVERY heart.

So we'll fundraise, we'll write, we'll blog and we'll sell,
We'll bake, we'll sew, and always we'll tell
All about this disease.  Until SMA is out of sight.
And we can say - without a bipap, without a feeding pump, without a pulse ox - "My child, sleep tight."

Summer, Summer, Summertime

Most nights I want our evening walks to be never-ending.  Those perfect nights, when it's still and just a little cool, the skies are clear and dusk is on the horizon.  People are out grilling, you can smell pit fires, pine and cedar.  Kids are chasing each other in their swimsuits, shouting to each other.

It's those nights that make me feel so nostalgic - I can remember childhood and adolescence in a vintage, Sandlot-esque way in my mind's eye (although we never once had a block party where I lived, and there were no Fourth of July night games.)  It's not that I want to go back there.  I don't miss any of my memories in a way that I wish to relive them.  But all those smells and sounds hold my fond memories in them.

When you're a kid and living these experiences, you don't take the time to think about how you'll want the same for your kids one day.  That only comes as you get older and those memories sift and filter, gaining a poignancy triggered by the wisp of smoke from charcoal or a breeze through the pines.  The feelings are amplified, condensed - turned golden. 

You want all those same joys for your child - late night fires, softball games, camping, swimming with friends.  When you think about your kids, you think about giving them all the good snippets of your past to pave the way for theirs.

You don't think about some doctor trying to tell you what they won't be able to do - what they won't LIVE to do - surely not as a child, and most of the time not as an adult.

And then you are faced with some person in a lab coat, trying to rip those dreams and wishes from your hands.  And you think (at least I did), "Who the eff are you to tell me what my kid will do?  What her life will be?"  (Sorry, but when someone tells you things like that, you aren't usually feeling very polite.)  And you resolve to prove them wrong.

So maybe it's miracle league softball instead of tee ball.  And maybe those walks are taken in a stroller, far past the time when she should be walking.  You're putting the dirt and worms in her hand, instead of her dragging them into your house.  Kool-Aid and ice cream cones are just little tastes on the end of her tongue.  But the smells are the same.  The happiness and joy is there.  And the memories are forming.







 

Fathers who have earned the title "Daddy"

I know this is a day late, but we were so busy yesterday, I didn't even get a chance to *think* about doing this!  Not only was it Father's Day, we also had our niece (who also happens to now be our goddaughter) get baptized in Madison.  Needless to say, we logged some miles on the van yesterday!

So I got to tell everyone that needed to hear it "Happy Father's Day" yesterday, but now I get to tell everyone else why they deserved to hear it.  My own dad has worked very hard his whole life, at very physically demanding jobs that left him bone-weary at the end of every day.  He was still there to cart my friends and me around to movies and the mall on weekends in our giant van (remember, the one I swore I would never drive and now own in a lovely shade of green).  What a lucky guy, getting to drive 50+ hours a week for work, then spending his weekend chauffeuring a group of teenage girls around, at all hours of the day and night.  My dad always did for us and thought of himself last.  He also gave me the huge gift of being a great husband to my mom, and letting me see that it is not unreasonable to expect a husband that respects you and puts your feelings above all else.  Because of the great example set by my parents (and my alluring good looks), I have Noah.

Noah is the embodiment of the definition of a great husband.  Never is my husband disrespectful to me.  It's not just because he has restraint either; he is truly just that thoughtful.  He builds me up, to others and to myself.  He is constantly suggesting we do things he thinks I would like to do.  And he absolutely shines as Lucy's father.

If love could provide a cure for SMA, Lucy would have had one a million times over already.  Noah wakes up lots of mornings to tend to Lucy's immediate waking up needs, so I get a chance to catch a few more winks.  He picks her up and dances her around, and she just radiates joy.  Lucy laughs a thousand times a day because of Daddy.  Noah takes care of her morning breathing treatment, and on weekends he often does the night time one too, so I can catch up on housework or projects on the sewing machine.  He does laundry.  He does dishes - sometimes several times a day.  He pitches in on dinner, often.  On his days at work, he goes in after spending as much time with Lucy as possible, and comes home to dance her around some more before bedtime, helps me attach all her machines, and kisses her goodnight.  He throws in a load of towels and washes the dishes that have accumulated by the sink.  If he's not already falling asleep and Lucy's pump isn't alarming like a piece of crap, he can sit down for an hour to himself with his Xbox before bed.  Maybe.

His weekends are spent running errands with his family, which is no easy chore.  Lucy's machines and Lucy herself must be loaded and unloaded from the van over and over.  We do shopping, go to the park, go swimming, go on walks, go out for dinner.  Noah helps me with house projects and does landscaping.  Noah has a hand in every aspect of our lives, and both hands in most.  There is no way I could do it - no way Lucy would be the happy little girl she is - without him.

I love him dearly, and Lucy just glows around him.  At the baptism yesterday, Lucy was getting impatient toward the end of service.  She has to lay in her stroller the whole time (without the iPad!  gasp!) and while she will tolerate a non-rolling stroller for a while without a screen for entertainment, she was getting fed up and humming loudly to let us know that time was up.  During the last song, I suctioned her so Noah could pick her up.  I think everyone within a 5 row radius could see her beaming the second Daddy picked her up.  As he danced with her, the smile only grew.  When he is home all day on the weekend, all Lucy wants is to be carried around by him.  It warms my heart that it is Noah's joy to do this just as much as it is Lucy's to be carried. 

I could not dream up a better husband or father, and I know Lucy loves her Daddy with all of her heart.  I thank God every day for my family, as He is my father too, and has shown His love for me in many ways throughout my life.

Reclaiming our independence - SMA-style

Lucy was born in the summer, so early on I would take her on walks around the neighborhood while Noah was working - it was a nice change of scenery, and I figured it would help me lose my baby weight (we can all see how that turned out.)  Mostly, she slept, and I was never worried.  Why should I have?

Two months later Lucy was diagnosed with SMA, and we found out that the convenient little travel system we had for her could kill her.  It was October anyway, and walking season was all but over in Wisconsin.

Next spring, some relatives were extraordinarily generous and donated the money for Lucy to have an EASyS stroller, which had the option of laying flat.  Since Lucy can choke very easily in an upright position, this stroller allowed her to see the world again - at this age, she was far too difficult to carry for long periods of time.  Floppy baby + possible choking episodes = need for flat stroller.  We very much enjoyed our walks as a family, but since Noah has to have a job, (I know, right?  What's up with THAT?) we had to schedule them around his available time and factor in the weather as well.  Not quite the freewheeling lifestyle that we enjoyed pre-SMA... well, as freewheeling as one's life can be with a nursing newborn ;)

Lucy has been relatively stable.  Yes, she chokes occasionally, but we know what causes her to choke - upright positioning, if not carefully monitored and suctioned as needed, and position change without suction - so it's easily avoidable.  We've had *maybe* an issue or two with a plug, and I say maybe because both times it was so small I'm not even sure if it qualified.  I've had to use the Cough Assist twice on her in emergency situations, and both were when she had been sitting upright.  She is good at moving her own secretions, letting me know if she needs suctioning, and can maintain oxygen saturations on her own.  We don't yet have a tray for under her stroller that will support her Cough Assist, as well as the battery and inverter needed to run it, so we go on walks with her suction and pulse oximeter, which is no less than what she routinely uses throughout the day at home.  We also always carry an Ambu-bag for emergencies.  

After watching a few nice afternoons go by in the early spring (after 6 months of lockdown, let me remind you), I started thinking about how different it would really be if I just took Lucy on a walk by myself.  Just thinking it felt so daring.  We never took Lucy anywhere unless both of us were with her.  But the more I thought about it, the more doable it seemed.

And so we ventured out, me feeling all brazen and Lucy looking confused ("Um, *where* is Daddy?  You know, my hand-holder?").  I can't say that I was nervous.  All of my past experiences with Lucy were saying that she was going to be okay, that we could do this.  We stayed relatively close to home, and made it back without incident.

Lucy quite enjoys our walks.  I prop her arms up so she can feel the breeze, we talk about what kinds of trees Mama thinks we see, we bark back at dogs, we say hi to the people out and about, and Lucy smiles randomly throughout.  I think she likes this newfound freedom.

Haaaaay, LucyLucyLucyLucy, SWING!

Lucy LOVES swinging.  She is a daredevil (as are most children with SMA, it seems), and she loves flying through the air.  She sits in Daddy's lap on the swings in the park and smiles and giggles with joy as he glides back and forth with her.

We were going to try to make Lucy a swing for at home so she could have that joy every day, not just on the days we could make it to the park.  I got a piece of wood and was preparing to make her a flat swing, since the adaptive swings are extraordinarily pricey, but there's always something that needs to be done around here and I hadn't gotten to it yet.

That ended up working in Lucy's favor - another family's daughter had outgrown her swing, and they were hugely generous, giving it to Lucy!  It's called a Jenn swing, and it can be adjusted to go back as far as we need it to, so that Lucy can swing on her own and still be safe.

Of course it was raining the day it was delivered, but I got it unwrapped and ready to go in anticipation of the next nice day :)  I got it up yesterday and Lucy gave it the inaugural ride.  I wish I would have caught the first couple seconds on film - there was a squeal of delight :)  She looked as if she were in utter disbelief that she was swinging all by herself.  What a big girl!

Thank you so much Salus family - Sophia especially, for sharing this awesome opportunity with Lucy!

Lucy language

There is an enormous range of abilities within the SMA diagnosis, even just within the "type 1" category.  Some kids can talk, most can't.  Some can move their arms, some can wiggle their fingers.  Some can breathe on their own for hours at a time, or even all day; some are vent dependent.

We weren't really sure what to expect for Lucy in the beginning.  I'm talking after finding a competent (to say the least!) doctor, one who didn't just say blandly, "Well, yeah, you *could* trach her, and will need to eventually..."  We didn't know if Lucy would retain any physical strength, or be able to talk.  As she grew, she lost much of the physical capacity she once had.  She can't lift her arms off of a flat surface, can't turn her head while laying down.  We now need to be extra careful when positioning her or picking her up - we almost always have to suction her first.  And Lucy can't talk.

I am extraordinarily grateful for the strength she has been blessed with; being diagnosed with a disease like SMA, it's more than we could ever ask for.  That doesn't mean that it doesn't hurt my heart that I don't hear her say "Mama," or get to listen to all the annoying questions that exasperate most parents.  She can say "ahv" for "I love you," and it melts me every time she does it.  For the most part, however, Lucy does not open her mouth to make noise.  It's a lot of work for her to even open her jaw, so the majority of her noise-making is humming and squealing.

It seems like she goes through phases of "talking" and not talking.  Weeks will go by with only hums and squeaks, and I'll start to think "okay, she probably can't any more."  We do oral therapy twice a day, but there's only so much you can do - it's not something you can force.  Then, after I've resigned myself to the fact she just probably won't be talking anymore, we get a few days where she wants to talk a lot.  And to me, it's like hearing angels sing.  It makes me teary with joy.  It's not words, or even syllables, but it doesn't matter.  It's Lucy language.