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.

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.

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.