Yay for Good News!

When Lucy was admitted at Children's Hospital in Milwaukee in September of 2009, we were completely blindsided and overwhelmed.  We had no idea what to expect for her, but the prospects were grim.  She was subjected to countless blood draws, catheterizations for urine samples, muscle testing, and an MRI.  We left with tons of questions and few - if any - answers.

While they refused to verify in any specific terms what they were testing Lucy for, someone did mention an anomaly in some bloodwork that Lucy had done.  The culture had come back positive for trisomy 8 mosaicism.  They wanted to do yet another blood draw, because it was possible that it was just an abnormal culture.  After watching Lucy get poked and prodded (mostly unsuccessfully) for three days, we declined.  We had bigger fish to fry at that time, and anything non-life-threatening was cast aside in the concern department.

Immediately after Lucy's SMA diagnosis, it was the farthest thing from our minds.  We had so much to learn in a very short time to be able to care properly for Lucy.  But as time progressed and Lucy stayed stable, we started to wonder.  As she got older, it was hard for us to try to teach her something and, seeing her disinterested or flat out ignoring us, not question whether it was a an issue with will or skill.  Since she's virtually immobile and non-verbal, it's hard to tell what she's capable of - and whether or not it's just toddler attitude that is keeping her from doing what we're asking her to do.

We discussed it with Dr. Schroth, and she pulled up Lucy's diagnostic paperwork and sent us to the Waisman Center in Madison.  We took Lucy in three weeks ago to talk to them about pursuing whether or not trisomy 8 mosaicism was something Lucy had in addition to SMA.  To get a more accurate testing, they had to do a skin biopsy on Lucy's leg, which she was not at all happy about.  She was irritated at the numbing shot, and when he was pinching her leg to see if it had yet numbed, she shot him the nastiest look I have ever seen her give anyone.  The biopsy itself was painful for her, but she was okay by the ride home and has not complained once while we've been caring for the site post-op :)  In fact, she laughs when we pull off the band-aid for the daily cleaning - my girl is crazy!

Waiting for the test results was a bit like waiting those two years ago, albeit on a much smaller scale.  I even forgot we were waiting for results for a day or two here and there - back then I did not, though I tried very hard to.  I wasn't sure how we would proceed with Lucy's care and therapies if she was diagnosed with the trisomy, but we would figure it out, just like we figured out SMA.

Today someone called and said that Lucy's cells had not grown a single trisomy, which means we can be reasonably sure that the initial culture was a false positive.  I didn't realize how concerned I was about it until I felt the relief when I heard her words.  While we would have been fine, and Lucy would have been fine, I'm glad that another area of our lives doesn't have to be adjusted.  Now I know that it's pure stubbornness when she's not cooperating or communicating, and I plan to react accordingly ;)

D-Day Deux

This is Lucy, with the outfit she was wearing on the day she was diagnosed with SMA.  The same day she was diagnosed - October 14 - two years later.  It's incredible to see how big she is now - or rather, it's incredible to see how tiny she was when we found out.

What's not incredible to me is that she is still with us, despite the dire outlook the geneticist delivered along with her diagnosis.  I remember standing with Lucy, looking down at her in my arms in disbelief.  I refused to believe that doctor, plain and simple.  She is not God.  And for her to have the audacity to dare to tell me how long my child will live is shameful, in my opinion.

I don't think it's fair to say that Lucy is alive because of our prayers.  Not because I don't believe that God has something to do with it - in fact, I think He has everything to do with it - but because I know plenty of parents who prayed long and hard to be able to keep their sweet babies, but ended up with different outcomes.  And it's not that I don't pray for Lucy to have a long and fulfilling life.  I do.  But it's not up to me.  I'm just glad that for now, my hopes for Lucy and God's plan for her are on the same path.

Two years post-diagnosis, Lucy has lost most of her movement.  She can move her limbs fairly effectively when suspended, but cannot lift her arms off of a surface as she once used to be able to.  She can still go for very long stretches (and sometimes take naps, tsk tsk, I know) without her BiPAP and maintain perfect oxygen saturations.  When she chokes on her secretions, oftentimes she can self correct if we get her flat.  After a tantrum (and we see enough of those, HELLOOO terrible twos!), she doesn't need me to cough her or get out the oxygen for her because she can't recover.  And she still has quite a few facial expressions in her repertoire, including a beaming smile. 

Every day I thank God for making her so strong.  Every. Day.

Given the circumstances, that may sound funny.  She can hardly move, but she's the strongest person I know.  She can't cough on her own, but she's tougher than a lot of adults - and whines a lot less than some, too.

Every day we share with her is a blessing.  I don't say that because we think our days will be limited.  We don't.  Every day that *every* parent shares with their child should be viewed as a blessing.  We are just fortunate to be more aware of that fact.

Glory be to God.  And in your face, SMA.

Anniversary #4!

Thank goodness for Facebook reminding me our anniversary was coming up last week!  Our day-to-day lives are so busy, those things creep up before you know what's happening.  Four whole years of being married to a wonderful man who I'm blessed enough to be able to call my husband.

On our anniversary, we saw each other for about half an hour, total.  No special date, no private romantic dinner.  No problem.  With our lives being the way they are, I don't expect - or miss - those things.  Really.  We made a choice when we became parents, to put our child first in all things, and for us, eschewing traditional anniversary celebrations falls right in line with that.

What did we do on our anniversary, you ask?  Lucy and I spend the day (part of a long weekend, actually) at her grandparents' house while Noah worked diligently on our house - specifically, our bedrooms.  Yes, plural.  Lucy is well on her way to getting a bedroom worthy of Lucy-habitation.  Since we had problems with our roof this spring and summer, there was some water damage done to the ceilings in both bedrooms, and that had to be addressed.  Thankfully, it wasn't major damage; nothing a can of sealant and some spackle didn't fix.  And fresh paint, of course, in fun new colors :)

That is my anniversary present: another room to inhabit during winter isolation.  Up from one, this is going to be like a luxury suite for us!  Better than any diamonds or dinners could ever be.  We get downstairs as much as we can, but if Noah is sick or around someone sick at work, we try to stay away from him.  Unfortunately, since there is no shortage of sick people in the winter, we spend quite a bit of time upstairs, keeping Lucy as far away from the germs as possible.  And now we have two rooms to do that in!

So happy anniversary to my wonderful, hardworking husband.  I won't say tireless, because he is very often tired, yet he works hard anyway.  He works to give Lucy everything he can, and to keep a smile on her face.  He works to relieve my stress and make my life enjoyable.  He is amazing, he is ours, and I look forward to spending the rest of my life with him.  I love you Noah.

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.

Bowling for Lucy - SUCCESS!

Unfortunately, there are many, many things that can dangerously affect a child with SMA - the heat being one of them.  If a child with SMA gets too hot, it can cause them to get dehydrated quickly.  If they're dehydrated, their secretions thicken.  If their secretions get too thick, they cause plugs.  Plugs can be deadly for SMA children, completely blocking off their airway until you can move them with a cough machine and pull them out with the suction - there is nothing the kiddo can do about it.  Imagine how scary that would be for your child!

Needless to say, not only do we need to be careful in the winter, we need to be vigilant in the summer as well.  SMA makes it hard for kids to regulate body temps as well, so we try to keep Lucy in temperature-controlled environments.  Although it doesn't seem like summer will ever get here this year (!!), soon it will be too hot for Lucy to be outside for too long.

It gets hot in our house too.  We don't have central air conditioning, only window units for the two upstairs room.  Because of this, on the hot days we are forced to stay upstairs in our bedroom - much like the winter, just for different reasons.  We can't even run both of the window units at the same time because we have a small refrigerator upstairs for Lucy's food, so we're not constantly having to run downstairs and leave her unattended.  Since our house is old and has obviously had work done by people who completely disregard building codes, all of our upstairs electrical is screwy; it's impossible to run two window unit air conditioners and the refrigerator at the same time.  I honestly wasn't sure how we were going to get Lucy in her own room this summer, since she couldn't sleep in a room with no AC, and it would be hard for us to not have it.

God has taken incredible care of our family, though, and He came through again in the form of a fundraiser at Generations Lanes in Eldorado.  The bowling alley is owned by Jeremy and MJ Brenner, a cousin and cousin-in-law of Noah's.  They, along with Lucy's grandparents Jim and Jeanne Zahn, and countless others, organized and orchestrated a Scotch doubles tournament, raffles, silent auction and karaoke night to benefit our family.  The costs of having a child with SMA are astronomical, both financially and time-wise.  There are just not enough hours in the day to get everything done, and while insurance pays for some things, they sure aren't happy about it, and it's a struggle every step of the way.

The money raised at the fundraiser that night will be enough for us to fix the air conditioning in our van (which was unbearably stifling last summer!) and install central air in our house.  Now Lucy and I won't be stuck in the bedroom for half the summer!  This also means that we won't have to worry about risking an electrical fire to keep the refrigerator for her food running :)

I can't even begin to express how shocked we were at the success of this fundraiser.  We are continually pleasantly surprised by the sheer generosity and care shown to us by our family, friends, and complete strangers.  I don't think there's anyone who hasn't heard the term "it takes a village," and in the case of children with SMA, that is inherently true.  There is no way we could give Lucy the quality of life that we are able to without God's blessings coming through the people around us.

We were very sorry that Lucy couldn't attend (close quarters + lingering germs = unsafe environment for a SMA child), but we want to thank all who donated time, money and items for our family.  I know we can never thank all of you personally, but we will think of you every time we can watch a movie as a family in our living room, or take a trip with Lucy this summer.  I hope that God shines in your lives as brightly as He shines in ours!

Lucy's new toy - worth more than my first car

Well, not really.  I was born a little bit past the era when you could get a drivable car for a couple hundred bucks; but I digress.  Lucy has spent this afternoon playing with her wonderful iPad - look at her go!  These are "toys" that open wonderful new doors for children who live with neuromuscular diseases and cannot play in the traditional sense.

We were able to get Lucy this pricey piece of equipment due to the impossibly generous donations of so, so many people.  Not monetary donations, though - donations of discs that were no longer being used; CDs and DVDs.  Hundreds upon hundreds of them.  Boxes and bags of them.  We sorted through them as best we could and sent them off to iPodmeister.  They graciously gave us a 10% discount on the amount of discs needed to procure an iPad.  We ended up sending the requisite 675, plus an additional 30 to compensate for any damaged ones we had overlooked.  The company pays for shipping, which was a big plus!

A couple of weeks later, we received an email from iPodmeister, stating that they of the discs had received:

Incomplete cover art: 5

Radio Edits, Promos: 12

Scratched: 16

Incorrect CD in case: 18

Water damaged: 3

Club CDs (BMG, Columbia): 45

Penny-Items (resale value of <$1): 33%

Due to the fact that apparently 33% of the discs were penny sale items, figuring in the 10% they had allotted us, they could offer us a check for $269.  An iPad is not $269.  We had ended up with more discs and had 100 or so left, so I emailed them back asking if we could send those discs (on our dime, of course) to help make up some of the difference, but was hoping they could specify what constituted "penny items" so I wouldn't have to waste shipping money sending them.  After two days of no reply, Noah and I decided that it would be cost-prohibitive to send so many heavy discs anyway, and may as well put that money toward the difference.  I emailed them to tell them that we had changed our minds and would just accept the money offered, and they immediately responded to say that the check would be in the mail.

I am so unbelievably grateful that so many people put so much time and money into getting us the discs we needed; because of that we were able to get Lucy an iPad.  I would not recommend this process to any other family looking to get an iPad, however.  It is partly my fault for not reading all of the submission guidelines ahead of time, but after re-reading them in their entirety, at no time does it state how one can go about determining whether a disc will be considered a "penny item", so I assume it is left up to the discretion of the company.  While that might be good, legitimate business, it makes it a bit hard for the customer to defend - or even know - that they've earned an actual product.  

What's important, though, is that Lucy has this fabulous new toy that she can play independently on!  Her favorites - and the easiest ones for her to manipulate - are the Peekaboos: barn, wild, and forest editions.  She loves the kids' voices and the sounds the animals make.  She can also use the piano and likes making music.  If anyone has any suggestions for apps, we'd love to hear them!

Thank you, thank you, thank you to everyone who made this possible.  The generosity we encountered while doing this was breathtakingly overwhelming, and brought me to tears more than a few times.  Our family is truly blessed.

 

Motherly thoughts from someone's daughter

I hope I can be everything to Lucy that my mom is to me.

My heart hurts for mothers who are missing their angels in heaven.

Am I entertaining Lucy enough every day?  Does she get enough physical therapy, enough intellectual stimulation?  I can't just let her play with her toys for a few hours.

My house is a perpetual mess, despite my husband's best efforts, because I can't just put Lucy in front of toys for a few hours.

I think I'm creating the monster I swore I never would by caving to Lucy's demands - I have to work on that.

I wish I knew what the future will hold.

Once you start being a mother, you never stop, no matter where your children are.

To be a mother is to relinquish control of your life as soon as you've attained it, basically.

I thank God not only for the blessed life we live, but for giving me the ability to view it as such and not be constantly bitter.

Often I try to count the number of times Lucy smiles in a day, but I always lose track.

When I was younger, I could never understand why my mom asked for things like new towels for occasions; now I do, and that makes me happy.

I consider it a huge blessing to have both my daughter and my mother with me on Mother's Day, and any day.

I love them both unconditionally and irrevocably.

Happy Mother's Day.

Warning: SMA parenting not for the faint of heart

Today was the first time I've changed Lucy's mic-key button outside of a hospital setting.  I know, I know - she's had it since 5 months of age, how have I gotten away with it this long?  Well, I didn't feel like doing it at home and having Lucy's food start shooting out of her ear at her next feeding because I placed it wrong somehow, and I hate being the one responsible for inflicting any kind of discomfort on my baby.

Yes, I give her a breathing treatment every day, which she's not a huge fan of.  I do oral therapy on her, and when teeth are coming through it's all kinds of un-fun.  This is a step in a different direction.  More medical.  Less Mama.  More nurse.  And while I am fully aware that as a parent of a child with SMA it comes with the territory, I was willing to hand off that chore for as long as the good nurses at American Families would let me.

Those nurses sneakily make it look like it's routine, everyday business.  I got a training session there, where they kindly walked me through it as Lucy whimpered below me.  I don't remember it being as stubborn then as it was today. 

I got the old one out no sweat, but getting the new one in was a different situation entirely.  It would not go in.  I took a breath and pushed harder.  Still nothing.  Gave a little spin.  Nope.  By now, Lucy is crying silently and breaking out in red splotchies all over her face.  I felt like someone who should be on trial for torturing their child.  Praying, I continued to push until I felt it give and slide right in, like it had been trying to get in there all along and I was the one holding it back.

I felt like puking.  Not because I was off-put by the sight of the hole in Lucy's stomach, but because I had hurt her.  Mamas are supposed to make the pain go away, not be the cause of it.  In a world full of unfairness, I suppose this is pretty far down on the ladder of injustices, but it's just not fair that because of SMA, I have to do things that make Lucy cry.  And not just in a "no-I-don't-want-to-eat-my-vegetables" cry, but a "why-are-you-doing-this-it's-hurting-me!" cry. 

Boo to SMA.  I want to make *it* cry.

And now I have to watch for ear-food.

Oh, and just so you know - 10 minutes later Lucy was laughing at Daddy (the good guy), and has seemingly forgiven me.

Glasses = Minor Mental Breakdown

Lucy had her Madison clinic day last week, and at the suggestion of Dr. Schroth, we took Lucy in today to see a pediatric ophthalmologist about her strabismus.  After a 3-hour appointment (and Lucy having her eyes dilated and then pried open while she cried - NOT fun), the doctor said that the inner workings of her eye looked like they were healthy and developing well, but she has rather severe astigmatism.  The kind that she probably won't grow out of.  The kind that needs corrective lenses.

While this may seem like an easily fixable, minor - dare I say paltry - diagnosis, especially in the face of SMA, it has upset me more than I realized.  I haven't been sleeping well lately.  Having a hard time falling asleep, really.  I can't seem to shut my mind off.  It's always racing with the next idea, what I have to do the next day, things I have coming up, and how I'll squeeze everything in.

As I lay in bed in the wee hours of the morning after finishing a project last minute, I find myself crying.  Crying because no matter what I do, no matter how much I do, I can't do what I really want to do.  What I wanted to do.  Have a healthy daughter.  No amount of sewing is going to fix Lucy up right now.  I think the glasses were the feather on top of this particular pile that toppled it for a few minutes.  Not only does Lucy have to live with SMA every day - something I inadvertently passed on to her - I couldn't even give her decent vision.  In the darkness at four o'clock in the morning, I feel like an utter failure.  

I know none of this is my fault.  It's nothing I could have predicted, it's nothing any of us deserve.  I think it's mostly the lack of sleep that makes this seem so much bigger than it is.  And, just like the treatments, the BiPAP, the surgery, the loss of movement... we'll become accustom to the glasses.  Lucy will become accustom to the glasses.  She may not like them at first, but they will better her life - just like all the other things she's gotten used to.  And her continued perseverance will just allow me to admire her all the more, which is something I can live with :')  Goodnight.

Clinic Day!

Looong day yesterday - clinic days always are.  As usual, this one was a complete success!  Lucy is growing right on track.  Her BiPAP settings are working great for her, and Dr. Schroth was very impressed by her chest wall.  Her medicines dosages were adjusted for her size (which is 34.25" and a little over 24lbs!), and we checked out some new BiPAP masks.  They measured Lucy for nasal prongs, but  - as Dr. S said - "she has some tiny nostrils!"  It's going to be a while before prongs are an option for us.

Something else we discussed was Lucy's eyes.  For the past 6-ish months, Lucy has had issues keeping them simultaneously focused.  At her last appointment I brought it up to Dr. S, but Lucy kept them focused the whole visit (of course), so she didn't really see what I was describing.  Lucy was tired this visit, so she saw it.  She thought it might be an area of concern, so back to Madison we go next week, for a 2 1/2 hour visit with peds ophthalmology.   

Dr. Schroth is incredible.  Amazing.  Exceptional.  And none of those words describe just how awesome she is!  She called when we were on the way down there to discuss some of Lucy's equipment, medicine, etc.  When we were there, while we were seeing the RT, dietician and getting blood work (boo, but Noni got it so fast!  Lucy was rewarded with a Beanie bear; Noni was rewarded with an angry glare), Dr. Schroth was helping us straighten things out on the Lucy equipment/medicine front.  I wouldn't think it possible, but every time we leave there I love her a little more!

I think I heard how wonderful of a job we were doing with Lucy at least a  handful of times.  Besides the glowing reports on Lucy's overall well-being, that may be my favorite part :)  There is so much that needs to be done for Lucy to thrive, and it's nice to have the reassurance that we are doing our jobs from one of the most respected SMA pulmos in the world.

Sorry it's been so long since my last post!  I haven't had the time to ponder life's deep issues, and even less time to blog about them.  Between keeping Lucy entertained and keeping Couture to Cure SMA stocked, there just isn't any free time left!  I will put it out there that the fabulous Marjorie Trew-Munson is kicking off springtime fundraising with a rummage sale in May.  She will begin accepting donations in April, so if you have any spring cleaning to do, contact me and I'll get you in touch with her.  There will also be a Scotch doubles bowling benefit for Lucy on May 14, complete with auction and raffle.  For more information please email Jim Zahn at jj2326eld@charter.net. 

I've started praying with Lucy every night.  She quite enjoys it!  We give our thanks, and ask for help.  Her favorite part is the flourishing "Amen" at the end :) 

"For everything comes from Him and exists by His power and is intended for His glory.  All glory to Him forever!  Amen."  - Romans 11:36

A Charm for a Cure

A few months ago, a local fellow Etsian approached me about doing a necklace for SMA.  Kim Jakum of Metalmorphis asked me to design a necklace that I thought captured SMA.  I mulled ideas over the holidays, and we were finally able to meet last month.  Not only did she take my idea and turn it into the fabulous charm listed in her shop, she brought me a whole goody bag of fancies to use in clip making - it was like Christmas all over again!

Kim recently won third place in a metalcrafting contest for one of her beautiful, creative, exclusive designs.  The amazing jewelry in her shop is not only made of the highest quality materials, it's made with a superior knowledge of the craft.  I'm a huge fan of personalized items, and she has those in abundance.  Would you like to have some of your child's artwork immortalized in a necklace?  She can do that.  How about your baby's footprints?  Yup, that too.  Perhaps you'd like your kiddo's fingerprint around your neck?  Kim is successful at transforming bits of your life into wearable art.

Obviously I'm biased, but my favorite is the "Lucy's Fight to Cure SMA" necklace (with the wearable artwork a close second - seriously, how cool is that idea!)  I wanted something that would present the true essence of a person with SMA - the big heart, the bright mind, the fight they possess.  These kids (and adults) are all over the world.  And they are truly a gift from God.  How could they not be, when they all bring people together for the greater good?

I'm very proud of what we've come up with, and I want to say a sincere thank you to Kim, for making such a beautiful piece to represent our fight.  And, true to form, it's completely customizable, with your choice of birthstone in the heart, and a name and birthdate inscription available on the back.  What puts this all over the top is that with each necklace sold, $15 is donated to the Gwendolyn Strong Foundation for cure-based research - can't get much better than that!  So head over to her shop to get your order in!

The Terrible One-and-a-Halfs

Oh yeah, I *totally* knew how I was going to parent my child - long before I was ever pregnant.  As the lady at the counter in my store wrote out her check with toddler-sized bite marks on her hand and politely told her son, "No, we don't bite Mommy; that's not nice," I thought smugly to myself, 'MY child will never do that to me, oh no.  MY child will be disciplined, none of this reasoning with a person not old enough to grasp the concept of reason.'  Ditto being glued to a TV all day, eating junk food, and dragging my kid to my every retail therapy session, shushing them the entire time.  'I don't know what these people are thinking!' I scoffed to myself on more than one occasion.

So I don't take Lucy shopping with me whenever I go - that's about the extent of my adherence to my prior convictions.  Granted, this is not the scenario I pictured myself in when I got pregnant, but does having a child really end up how anyone pictures it before they actually have one?  Yep, I do pretty much everything I said I wouldn't do - Lucy watches lots of TV (I try to keep it educational, eh?), and although she can't have anything by mouth, she gets to taste stuff.  Her favorites are syrup, pink lemonade, and ice cream.  Not exactly the homemade squash and peas I had envisioned.

And now we're upon the terrible twos one-and-a-halfs.  My, what an overachiever Lucy is - she decided to start the demanding tantrums six months early for us!  Pre-baby me would have sneered at this and thought "Well, that's just their own fault for not putting their foot down."  Post-baby me is saying "I'M GETTING YOUR BOOK!  HANG ON JUST ONE SECOND!" while frantically grabbing for reading material to wave in her face to appease the red-faced, crying alter ego that shows up the split second her wants aren't immediately met.

While I feel like we're in a different situation with Lucy, something has to be done.  I acquiesce to her attitude more than I would if she didn't have SMA (at least I like to think that) because she doesn't get to do a lot of things kids her age do.  That, and she need to be suctioned every time she pitches a fit, so I try to avoid having to do that - she's not hugely appreciative of the process.  And she goes through enough, right?

Except... she knows damn well what she's doing.  That part of her isn't any different than any other toddler.  She's manipulative, impatient, demanding - a tiny tyrant, a diminutive dictator.  And the more we feed the idea that tantrums = getting what she wants, the worse they're going to get (although I can't see it getting much worse; the SECOND she sees us with food, it's hysterics.)

So I've started standing my ground.  No more "when Lucy says jump, I say 'how high?'"  I make her wait, and maybe even give me something to get something.  For example, we started a couple days ago with the ABC's.  When you ask Lucy if she wants to sing a song, she gets very excited and wants to sing one immediately.  I've been working on her being more vocal, so I thought this would be a perfect opportunity.  "Do you want to sing the ABCs?"  I said.  Smiles and huffing abound.  "Will you sing with me?"  Smile.  "You sing first.  Say 'A'."  Frown.  "Lucy, say 'A'."  Whine.  "I'm not singing until you say 'A'."  Cue tantrum.  And I ignored her.  I watched a little TV, then asked her if she wanted to say 'A'.  She did not.  Our stand-off lasted a good 45 minutes, with Lucy crying - hard - and every once in awhile peeking at me out of one slitted eye as if to say, 'Really?  Are you getting this?  And still nothing?'  She would calm herself, smile, and I would say "Sing 'A'!"  Instant tantrum.  Lucy did not get to hear the alphabet that afternoon.

So, it's a work in progress.  But I'm not caving.  Lucy is my child, and I'm responsible for her behavior - SMA or not.  Yes, she gets sugary sweets more than she might if she didn't have it, and loves her TV pals more than she probably would without it, but SMA is not a free license to assert her will ad nauseam over the rest of us.  That's Mama's territory.