Monday, December 27, 2010

To smite or not to smite

We've known Lucy has SMA for over a year now.  We've known she has it far longer than we didn't know - we passed that mark on her 6 month birthday.  Even though I wouldn't have thought it possible, slowly our lives have returned to normal routine.  A different routine from most, but a known, comfortable routine for us.

Most parents assume their lives will be changing when they have a baby; they can't be selfish anymore, can't think of only themselves when making decisions, even those as mundane as where to go for dinner.  You need to plan, be prepared for contingencies - a diaper blowout, a tantrum that just won't quit.  You'll have to find a babysitter if you want a date night.  You may need to sacrifice things you once took for granted; parts of your pre-baby self might start to fade away.  And that's okay - you're a new person, your life has a new purpose.  It's only natural that you would adjust accordingly.

Some situations call for bigger adjustments, bigger sacrifices.  What might seem extreme to some is everyday regular to others.  I think it's easy to feel like if you make big enough sacrifices, you're due for repayment - and I'll take my child's continued good health, please.  For me, it's easy to think that if I take that day trip shopping, or if I would go out for a few hours in the evening with friends - if I'm away from Lucy - that somehow she will suffer for it.  That God will see it and think, "Well, she obviously doesn't care enough; she must need a reminder of how easy she has it."  Like enjoying myself without Lucy would jinx how blessed we are.

I've always wanted to be a stay-at-home mom, and I love my daughter like no other.  We have lots of fun during the day with projects and games and books.  I take time during the day (when I'm pumping) for myself, and Lucy enjoys a little time with her friends - Barney, Mickey, and Ernie.  When I used the term "stay-at-home," I just didn't envision it meaning quite what it means for us now.  It's different in the winter - we are home.  Period.  In the summer, we brave the stores with Lucy (albeit at slow times of the day), go out for lunch with her, take walks, go to the park, visit family and friends.  But winter... winter = germs = lockdown.  No walks, no visitors.  It's easy to get a little stir-crazy as the cold days and long nights drag on into March.

We don't have any nursing for Lucy either.  For me, nursing falls under visitors - I just don't want Lucy exposed to the outside world in the winter any more than absolutely necessary.  This is my compulsion; I don't begrudge anyone their nurses, and I don't think less of people that have them - or need them, because for many families it's not a decision, it's a necessity.  I love that some families have nurses who are like family and love their children as their own; I'm just not ready to test those waters.

I think we might be a little extreme in some of our practices - although I don't know a SMA family who isn't - but I'm trying to remember that Lucy's health and well-being isn't directly tied to how much of myself I'm willing to give up.  Lucy still sleeps in our room.  Partly because our house layout isn't conducive to her having her own room (or so I tell myself), but mostly because I just can't bear to be far away from her, especially when she's asleep - even if she's only across the hall.  I've grown so accustomed to hearing her bipap whistling and her feeding pump humming in my ear that I don't know if I could even sleep without it.

Today I started thinking more seriously about Lucy moving out.  Moving an extra 15 feet (if that) away from us.  I thought about how we purchased video monitors not too long ago, about the flood alarm we have for her feeding pump.  I measured the length of her pulse ox cord in my head, and I think I can stretch it across the hall so the pulse ox can still be in our room - the doors will be open to both rooms, of course (closed doors will not help separation anxiety or my peace of mind.)  I'm pretty sure I will still be able to hear every hum, whistle, and breath.  I'll hear the pulse ox if it alarms, and the flood alarm - from what I've heard - can summon the fire department if her food backs up.  Chances are good that the monitor will pick up any little fidgety noises or whines for a head turn or a drool wipe.

Now all I have to do is convince myself that this is not selfish, that this will not be seen as a sign that I no longer care enough for my baby to do what she needs me to do.  Awhile ago, I read something by Erma Bombeck.  It surprised me, and it reminded me that I don't have to let every part of who I was before Lucy fade away for her to be happy, or healthy.  That if God sees me indulging myself every once in awhile, He's not going to reach for the "smite" key right away (thanks Gary Larson for that image.)  I'm going to share it here in full, because I think it's something everyone should read - special needs child or not.

"The Special Mother" by Erma Bombeck

'Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a "spoken word". She will never consider a "step" ordinary. When her child says "Momma" for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."'

Now, I don't think that I'm a saint by any stretch of the imagination, but I do know that I couldn't do what I do for Lucy without God by my side - so I hope he approves.

Friday, December 24, 2010

Heavenly Hosts

'When the angels had left them and gone into heaven, the shepherds said to one another, "Let's go to Bethlehem and see this thing that has happened, which the Lord has told us about."'  Luke 2:15

Probably not the most recognizable passage from the Christmas story.  The shepherds weren't really concerned with the angels returning to heaven, they had a baby to see.  For families all over the world, though, the Christmas season is another one that their loved ones will be celebrating in Heaven.  Angels who have left their earthly home.  Angels who will never leave their families' hearts.

I can't pretend I know what it's like.  A lot of times, I don't know what to say.  No words will make it better, easier.  People cannot be expected to pick up and carry on as if nothing happened - be it a year removed, 10 years, 100.  The angel will always be a part of their family.  I only hope to let people know I care. 

I pray for what peace can be achieved in the hearts of the bereaved, and for many signs from your angels.  I pray also for a cure for SMA, because there will never be a cure for a broken heart.

Thursday, December 9, 2010

Christmastime is Here...

It's the most germy wonderful time of the year!  Since I worked in retail for quite a while before Lucy's diagnosis, my internal holiday clock starts ticking somewhere around August.  If you've never worked retail, you don't know it, but they start planning for Christmas setup in mid to late summer.  THAT time would be perfect for us to celebrate the holidays; mild illness risk, warm weather... unfortunately, such is not the case in Wisconsin. Here I sit watching snow blow around outside (finally!), in isolation with Lucy.  Because the bothersome little cold or energy sapping flu germs  - you know, the ones you spread at your workplace or your kids have smeared all over every railing and storefront window at the mall while hacking open-mouthed on the cart handles - are EVE.RY.WHERE.  And something you and your family might struggle with for a week or less with will slam into Lucy's respiratory system with the force of the Polar Express.  No, thank you!

It's not that much of a sacrifice, really.  I wanted to be a stay at home mom, and now I am - in the most literal sense.  I do get out for a couple hours, usually once a week when Noah is home, to run errands.  I make a point to sanitize the aforementioned cart handles, not touch my face, and stay the heck away from crowds or people who seem to really be TRYING to infect the general public with whatever is ailing them.  I shower immediately upon returning home, throw my clothes in the laundry, and return to isolation until next week's Barb-sighting.

However, this poorly veiled scolding (Keep your germs away from us!  There, I said it.) is getting away from my original intention for this post.  In October, we ventured out late one weeknight to Menards, where they set up the Christmas tree forest.  We drove Lucy around in her stroller and let her yank at beribboned trees and gawk at the musical lights.  She loved it, but not as much as she loved the Kristmas Kringle Shoppe.  Where we live we have a shoppe (I spell it that way for a reason; wait for the pictures to explain - thanks Aunt Mary for those, by the way!) that is dedicated to Christmas year-round.  Perfect!  We got to give Lucy her dose of Christmas wonder in August, before the crowds there start to pick up.  Obviously, she gets Christmas at home too, but this place is above and beyond even what I can achieve with my extensive decorating enthusiasm.

Christmas is easier this year.  Last year we were only a couple months post-diagnosis, struggling with Lucy's new g-tube feeding schedule, and still grieving quite a bit.  I made sure we went and picked out a tree as a family, but the decorating was only halfhearted; Lucy and I spent the majority of our winter upstairs in our bedroom anyway, as it was too hard to haul her and her machines up and downstairs.  I was afraid to be more than a few feet away from the cough assist.  She needed to be vented for her feeds, which were dripped over 45 min - 1 hour five times a day.  It was just easier in some ways to shut ourselves into the smallest place we could operate in.  In some ways it was extraordinarily hard.  It was quite the dichotomy, and left me needing some fake baking time by April to lift my spirits.  Good ol' artificial sunlight!

I didn't think that last Christmas may be Lucy's only one.  I don't look at this Christmas and think this may be her last one.  I really don't think it will be.  Of course I don't know that for sure, but do any of us know when our time here will be up?  I only try to make each day enjoyable for Lucy, and I would do that whether she had SMA or not.  We might just have to achieve that goal in different ways.  Like maybe riding a polar bear in September.

Friday, November 19, 2010

"Normalcy" - Who Needs It? Sometimes Me.

Lucy got her first Synagis shot of the season today.  For those of you who don't know, this is a vaccine against RSV.  It doesn't fully protect against it, but it should help the severity and duration of the illness if she contracts it.  It's atrociously expensive, so chances are unless your child was a preemie, you've never heard of it.

Lucy's a big girl now, and bigger Lucy = bigger dose of Synagis.  Both legs were attacked, and boy - was she pissed.  I don't blame her; someone came into our home, her sanctuary, and jabbed needles into her chunky little thighs.  I hate seeing that shocked, betrayed look on her face, and the tears that fall, accompanied by the softest - but hardest - crying.  Lucy deals fairly well with Synagis; she doesn't become bipap-dependent or require tons more suctioning.  Mostly.  She does, however, get quite a bit clingier than her usual "not in the mood to cuddle" self.

She fell asleep on the couch, and I got all ready to put the bipap on her when I realized that the metal piece that plugs into the machine was bent to the point of not fitting.  Must have happened during our recent hospital trip.  No worries; it was later in the day, and I figured I would let her sleep for 15 minutes and wake her up.  Wrong.  Lucy woke up on her own, crying hard.  I picked her up to soothe her and walked her around with her head on my shoulder (her new favorite position).  After 10 minutes - about all I can manage carrying a 24 lb baby - I noticed she had fallen back asleep.  I didn't take her back upstairs to put her on her vent.  I didn't lay her back down and put her pulse ox on.  I didn't try to wake her up.  I sat down and laid back with her, stomach to stomach.  No machines.

I know, I know - something can happen in an instant with a SMA kid, and you might not even be aware it's happening.  Even though she's breathing, her gasses may not be exchanging properly.  Her sats may be low, and I wouldn't know.  What I DID know is that she was a child who wasn't feeling the best and wanted her mama.  Twice I tried to lay her down and at least put the pulse ox on her, and she started wailing (wailing being a relative term; it was pretty quite.)  I caved.  Lucy slept on me for almost two hours, first on her tummy, then cradled in my arms.  And it felt amazing.  Something that most moms accept as a given, and may even feel hampered by at times is something that I don't get to experience, ever. 

So today I gave in - to Lucy and myself.  We were a "normal" baby after shots and a "normal" mama comforting her.  I know she needs her bipap, she needs her pulse ox, she needs this Synagis - but she needed me too, and (we) needed a break from SMA.  And I was happy to give it to her.

Thursday, November 18, 2010

Clinic Day

So yesterday was our first muscle clinic in Madison for Lucy.  They only come once a year (thank goodness!), and since it's been a little over a year since her diagnosis, she was due.  Anyone who has been to clinics in Madison knows it is a LONG day, with a blur of faces and information and lots and LOTS of questions.  They have questions - "they" being occupational therapy, physical therapy, rehab, palliative care, dieticians, social work, respiration therapists, and of course, the head honcho - Dr. Schroth.  Some women open their wallets to rows and rows of credit cards; I now have the contact information cards of everyone in the American Families Children's Hospital's directory.

We have questions too, if we can manage to keep our heads straight and spit them out to the right people: are we bracing effectively?  What about stander time?  Is she gaining too much weight?  How aggressive should oral therapy be?  I began to think that a notebook would have been a good idea when they brought in the list of people we were going to see.  Yep, a list, so we could check them off as they came in to evaluate Lucy (and us). 

Our "appointment" was at 8:15.  AM.  We - including Lucy - are not morning people, so she ended up having to take a little snooze, and of course she planned that when the occupational therapist was there; the lady who really would have assessed her ability.  I came to find that it didn't really matter, because just as any other clinic day in Madison, people are coming and going through your room all day.  Lots of times the same people return to tell you one last thing, or ask you another question, or bring you more information or tools.

It was a very productive visit though - and since we didn't leave until 3pm or so, it should have been!  Lucy had a blood draw for labs from the world-famous Noni, or as I like to call her - the Blood Whisperer.  You know the saying, "you can't get blood from a stone?"  Noni could.  And fast.  It still wasn't fun, but it was over quickly and soon forgotten.  I also changed Lucy's mic-key button for the first time myself, which was far less painful (for me) than I had imagined, and a mere annoyance for Lucy.  Her AFOs were modified to be more effective, she had an xray for her hips and general alignment so they can now chart her spine curvature and her hips for dislocation, and everyone took the time to tell her how cute she was - which I think was her favorite part.  Lucy absolutely ADORES being fawned over; when she sees a smile on someone else or hears the words "cute" or "pretty," the person lavishing attention on her is sure to be rewarded with her shining grin.

Lucy is doing well.  Her movement is still pretty fair, her joints are limber enough, she's perfect as far as weight for a SMA child... and most of all, she's happy.  So, in your face pulmonologist who blandly told us that Lucy would have no quality of life and we would only be selfishly prolonging the inevitable in seeking anything other than end-of-life care for our daughter.  I don't know what the future holds in store for Lucy, but so far she's getting all gold stars. 

Friday, November 12, 2010


I wonder what it feels like to try and try and not be able to move what you're trying so hard to move.  I wonder what it's like to not be able to shift yourself when you get sore from laying in a certain position.  I wonder what it's like to spend most of your life laying down.

Does she wonder why she can't put food in her mouth when she sees us eating?  She watches intently when we feed her; I wonder what it feels like to have food enter your stomach directly.  I know what the bipap and cough assist and suction feel like - but what does it feel like to sleep a whole night with a mask strapped to your head?

What's going through her head when I can see that she desperately wants to talk but instead we have to suction a throatful of secretions out of her?  I know I wouldn't want to open my mouth after that.

I know she feels loved.  I see her smile everyday, hear her quiet squeals of laughter when daddy spins her around, watch her wiggle in anticipation of her favorite parts in songs and stories.  I know she has the attitude of a toddler; she can go from calm to tantrum in less than a second if she doesn't IMMEDIATELY get her way (we're working on that!).

But what I don't know, is - what does SMA feel like?  As it is, I'll never be able to relate completely to her, never be able to say "When I was your age..." because nothing in my life could even begin to compare to what she goes through every day.  Even on her best days. 

Every once in awhile I think back to my childhood, my adolescence - school, summers, dates, dances and everything in between.  Little fragments and snippets of memories, compiled to comprise the essence of me.  Feelings, emotions, experiences.  I'm selfish; I don't just want Lucy to be able to breathe without a machine, or eat by mouth, or even walk (though I would take any of these things and be eternally grateful.)  I want her to have sleepovers with friends in a tent in the yard, go to football games to cheer for her school, be whisked off by a boy to the dance.  I want her to go on late night walks with her best friend, go to the movies with her boyfriend, go to the mall with her mom and shop for hours.  At Christmastime (aka the height of flu season.)  I know that theoretically any of these things are possible, even with SMA.  Remotely possible, but unlikely.

No one can take away my dreams for my child but me, and I refuse to do that to myself, or her.  I refuse to hope for anything less than the best for her, the best being what so many people are granted everyday without a miracle.  I will never stop hoping, dreaming and praying that someday I can say to Lucy "When I was your age..." and be able to follow that up with a statement that is even slightly comparable to what she is going through in her life.

You're not going to win, SMA.  You can kiss my ass.

Saturday, November 6, 2010

The War on SMA

This month on facebook (of which I am an avid user; being sequestered at home has made this necessary to retain a modicum of sanity) there is a little activity called "30 Days of Thanks."  Really, we should count our blessings every day all year, but November's big holiday seems to bring out the gratitude that can otherwise fall to the wayside.

There are many things I am thankful for.  I think if I listed them all here, I would go from a handful of followers to zero faster than a SMA mom sprays hand sanitizer at a newcomer in their home.  So, I'll go with something that is new for me to be thankful for this November: my SMA family.

Last November, we were only a month or so post-diagnosis, so we were still stumbling through what it meant.  I was directed to an online community by a very devoted SMA caregiver/grandmother.  This online resource, SMAspace, has been a Godsend to our family.  Through SMAspace, we were introduced to other SMA families living all over the world.  Suddenly we did not feel so incredibly isolated, so freakishly alone.  How is it that I'd never heard of SMA before - there are hundreds of families on here (actually, well over one thousand)!  Having people who are extraordinarily knowledgeable - moreso than most doctors on the subject of SMA - and compassionate at our fingertips has made a stunning difference in how we perceive the disease.

Our kids can go tobogganing and skiing; they can swim and run marathons and write books and make straight A's in school.  They are shining lights, and the one thing every family has in common is that they would do anything for their child.  Leave no stone unturned, no mountain unmoved in the pursuit of what these kids deserve out of life, whether they feel that's making friends in preschool or a cure for this disease.

Every family has different views on how to attain what can sometimes seem unattainable, but we all have the same goal.  Whether we come out and say it or not, every family wants a cure or viable treatment for their child, in their lifetime.  Some families may not feel this is realistic; this doesn't mean they don't dare to hope.  Some families refuse to believe that this isn't a possibility, and they are not wrong.  ANYTHING is possible.  The healthiest person in the world could have a plane land on their house tomorrow and kill them, and the weakest child could have a lifesaving therapy performed on them next year and outlive their parents.  No matter what studies say, parents say, outsiders say, organizations say is going to happen tomorrow, a month from now, a year from now - the thing is, we will never be sure of what the future holds for us.  And our human nature sometimes cannot handle that.  We want desperately to be sure of the future, and what it holds for us and the ones we love.

Some channel that want into fundraising, because at this point, there's really not a whole lot else us as parents and supporters can do to move towards what we want for our children.  Some channel it into raising awareness, getting the word out there, letting the world know that this IS preventable; it IS realistic to hope (and all the while, that hope is becoming more and more of a reality.)  Some (all, really) put everything they have into their children, fulfilling their needs and wants as best they can, adapting everything about life to suit their needs.  A quote posted recently sums it all up: "I thought I would have to teach my daughter about the world; turns out I need to teach the world about my daughter.  They see a girl who cannot talk, I see a miracle who doesn't need words."

Whatever your stance, however you approach this disease, whichever road you take in the pursuit of your dreams for your child, please know that we ALL want to end up at the same destination: the end of SMA.  The wounds left behind will always be felt, like battle scars, but the war will be over - and we WILL be victorious if we fight it together, remembering the slogan "no man left behind."  We must fight for the weakest of the weak, EVERY child with SMA, because every child is precious in God's eyes.  It's only a victory if it can be savored by all.

Love to everyone in my SMA family, I am forever thankful for each and every one of you.

Wednesday, October 20, 2010

Sing, Sing a Song

Lucy LOVES singing.  More accurately, she loves hearing someone singing.  If you ask her "Lucy, do you want to sing a song?", she gets a huge smile on her face and hoots her enthusiasm.  Occasionally she will participate, humming along or huffing excitedly at certain parts.  Most of the time she will watch your face and mouth intently, so I try to give her a lot to look at, exaggerating syllables and basically acting as insanely over the top as possible.  (Unless it's bedtime; there's no unnecessary stirring of energy reserves at bedtime.) 

It's so fun to watch her face while you're singing to her.  Her current favorites are the ABC's, 'I Don't Want to Live On the Moon', and 'The Ants Go Marching One By One'.  I can sing these over and over, and there doesn't seem to be any exhaustion of their appeal in Lucy's eyes.  Because she hears them so often, she recognizes the different parts, and she gets excited in anticipation of her favorite sections.  Just lately, she's started singing along before you even get there, in particular during the ants' march.  Right before the end of a verse, she'll start in: "buh buh buh buh" (which is Lucy-speak for the boom boom boom that signals the ants marching down, to the ground, to get out, of the rain :) )

It is amazing to watch Lucy learn something.  To be the one who is helping her learn makes it that much better.  I could never be as proud of any personal accomplishments as I am of what Lucy can do.  Seeing her comprehend something for the first time makes the hours of singing Barney songs over and over worth every minute.  Seeing her face light up when I ask her if she wants to sing a song makes my heart soar.  That I can put such a smile of pure joy on my baby girl's face is the greatest gift God has ever given me.

Thursday, October 14, 2010

Living, Loving. A life for Lucy. (The Eyes Have It)

Fitting - my first blog post is on D-Day.  No, not the day the landing operations for the Allied invasion started in Normandy... the day our lives were forever changed, our hearts forever shattered with the realization that our only child has a disease that is going to try to kill her.  Diagnosis Day.  We have pieced our hearts back together in the year that has gone by, but they will never be the same.  How could they be?

I'm a huge fan of alliteration...  for me, it gives a statement a little more impact.  And while there are other important things in my life - God, for instance - in our day to day, the reality is that we live for Lucy.  I believe it's what God set me and my husband on this earth to do.  Treatments, therapies and play fill our days, from waking to drifting off (drifting on the good days; on bad days - over tired days - it's Lucy whining herself to sleep).

Lucy is our daughter.  Lucy just turned 15 months old.  Lucy has SMA.  Unfortunately, the last statement is a defining characteristic of who Lucy is.  As much as SMA can hurt us at times, it is an intrinsic part of Lucy, and I could not imagine my baby girl being herself without it.  Would I like to see a cure for SMA?  Heck yes.  Do I wish Lucy had been born without SMA?  That question is a little more in the gray area.  I wish Lucy didn't have to go through breathing treatments every day, endure isolation during the winter (re: germy) months, and could enjoy simple things others take for granted, like eating by mouth or running away from her mama.  BUT, I just don't think Lucy would be as sweet, as soulfully observant, or as captivating as she is without SMA.  This hideous disease forces babies to communicate and thrive on different levels than average babies.  The attention they can pay to things in front of them is incredible, and it's as if you can see the gears grinding away behind their eyes.

I don't know if Lucy will ever be able to communicate conventionally with me.  Right now, all she can manage is "bababa".  I would contemplate severing a digit to hear her say "I love you Mama," but as it stands, I don't think it would do me any good.  Plus, my newfound blogging hobby would be significantly hindered.  However, Lucy has her eyes; her big beautiful eyes that can speak volumes.  Eyes that can share thoughts and emotions that she wouldn't be able to put into words yet, even if she had a vocabulary.  And until I win that multimillion dollar lottery and fund the cure, I consider myself blessed to be the one those eyes are focused on.