Resolution to Remember

Been feeling kind of out of whack for a while now, and Lucy's not been terribly into anything I've been trying to do with her.  Bert's been a little puppy demon, sucking up all free time and teething on our hands.  Nothing that's a real problem, just little things to make one feel unsettled. 

Last night I cracked open my Bible for the first time in a few months.  I do well reading regularly for awhile, then, slowly, other things start to creep in and take up that time, and all of the sudden I haven't read it in weeks.  Anyway, opened it and read some last night, and then again this morning.

And you know what?  Lucy and I had the BEST day today!  We woke up early, and she got her nap done early (and she fell asleep right away and woke up cheerful, which is definitely a rarity!)  I got out some crafty stuff to work on decorations for New Year's Eve, and she was all smiles and laughter, and totally into participating.  Bert was a model citizen, with no accidents in the house, and he stayed curled up underneath us or next to us for most of the day.  Today was what I imagine every day will be like when I go to be the night before.  Before I wake up late, before Lucy wakes up late, before Bert pees on the floor, before Lucy hums with her eyes closed through every activity I present to her.

This is no coincidence.  This is my life, if I choose to remember to put God first.  I'm not saying that will make every second sunshine and roses - that's just not what life is.  But I fully believe - I know - that every time I remember to give some time to God, my life is more positive.  Things fall into place.  Attitudes are better.  It may be that Lucy is cheerful.  It may be that Bert is behaving.  And it may be that my attitude is better when I look out at the chaos that is my life, because my heart is in the right place.

I'm hoping that in the new year, I will remember this more often than not.  After all God has done and continues to do for our family, He deserves to have my love, respect, and devotion.

I Love You So...

Lucy got a new book for Christmas from some very dear friends.  She can be a bit picky when it comes to new stories, but I read this to her a few afternoons ago, and she was fairly receptive.

The book talks about all the different situations that a child could be in, and the parents tells the child how they love them, no matter what the situation.  It came to one where the child says:

       "Even when I'm SICK... and I can't get out of bed?  Do you love me better HEALTHY than with 
        a fever in my head?"

I stopped at that point and told Lucy how much I love her, just exactly the way she is.  She started to fuss, which she sometimes does if I pause during a story when she wants me to keep reading.  I wasn't sure if that was the reason this time, so I asked her if she wanted me to keep reading.  She kept crying, so I asked her if it made her mad that she couldn't move.  She kept crying.  I asked her if it made her mad that she couldn't talk - and she stopped crying and looked at me.

It is beyond heartbreaking for me to not be able to understand Lucy.  We haven't found a particularly effective way to communicate.  But as hard as it is for me, I can't even imagine how frustrating it is for Lucy to not be understood.  I have tried to explain to her numerous times that we can work out a yes/no system - that if she would follow directions I give her, I would know she's understanding me and we could understand her better - but she is so stubborn.  I really feel like she just wants to be able to talk, talk like we do, not differently.  No matter what I do, no matter what alternative communication we work out, she can't yet talk like we do, and it breaks my heart to see her so frustrated.

This blog post isn't any earth-shattering revelation or funny anecdote.  It's just a mom, talking about how SMA affects her child.  I know that any parent hates to see their child struggle, especially when there is nothing they can do to rectify the situation.  SMA just kicks that helplessness up a notch. 

As you celebrate your Christmas with your family (and we are so blessed to do so with ours, at home!), please take a moment to add to your wish list a cure for SMA, so that some year, Lucy can tell me, in her own words, what she wants under the tree.

       "I CAN'T IMAGINE life before YOU came along... me there singing senseless, no meaning to             my song.  Call it MEANT TO BE, or simply blessed fate, you fill my heart WITH LOVE... and 
       for THAT I celebrate."

The Puppy has Landed!

This weekend we went to get Lucy's puppy!  He arrived early in the morning, so I woke Lucy up and took her downstairs to greet him.  She was less than thrilled (Lucy likes to wake up on her own watch.)  After some puppy snuggles, though, she warmed up to him :)

He's nice and all, but could we shoot for an hour later, next time?

We talked to Lucy about names, and she was particularly fond of Baxter at first.  Over the month, she decided she liked that one less, so we threw out some other names, and she decided she liked Bert.  As in Bert and Ernie, from her all-time favorite show, Sesame Street.  When Noah went to pick Bert up, they asked him if he had a name picked out, and he told them Lucy's choice.  They said it was perfect; the parents of our Bert were named Bert and Ernie!  So he's actually Bert Jr.  When I heard that, I knew that we had picked the best puppy for Lucy :)

He was very nervous at first, and squeaked a lot as he tried to decide if we were going to toss him around or put him in an ugly sweater.

We did the sweater.

 

Bert was calm all day, slept and snuggled Lucy a lot.  He preferred to have his face as close to Lucy's as possible.  He does not like to be alone, at all, or even far away from us.  Toward the evening Bert decided that doggy was not going to be our main dinner course, so he became a little more playful.  He likes nibbling and licking Lucy's fingers, which she also enjoys, as long as Bert knows when to quit.  He already seems protective of her - when Noah does her chest PT, Bert gets to Lucy as fast as he can and puts his head on Noah's hand, to stop him from "hitting" Lucy.  He got used to her suctioning very fast too, and can now sleep through it.

 

Lucy likes being greeted by Bert in the morning.  We are crate training him, and he's not too thrilled about that.  We are getting a little less sleep than we normally do - Noah least of all.  We decided that Noah would do nighttime puppy duty, and I would stay with Lucy while we were in the transition phase.  Lucy heard Bert barking and crying a few times, and was not at all appreciative of her slumber being disturbed (gee, Lucy, you don't like being woken up in the middle of the night?), but I managed to calm her down fast.  Potty training is also in beginning stages.  Bert likes to make use of his outdoor time by playing - not pooping.  I am very grateful we have wood floors!  

 

It's a little hard having our family dynamic changed - before, we focused any and all attention on Lucy.  Now, one of us has to be constantly watching Bert as well, because he's fond of chewing and defecating.  Not unlike an infant, only he can wander off into a corner and do it secretly.  I know, though, that we chose the right dog for Lucy, and Bert will fit right in :)

 

   Mah puppeh!

  

Puppy Love

We have been talking about getting Lucy a puppy for quite awhile.  Since she turned two, probably.  We thought we could start researching it then, and by the time she was older, we would know what dog to get her, and that she would be able to appreciate it a little more. 

I did my research on and off, and had narrowed it down to a breed I thought sounded the best suited to our lifestyle, and to be a companion for her.  The problem was that these dogs were upwards of $1,000, and were rare breeds only available in certain areas of the country - and nowhere close to us. 

On the website for these dogs, though, I noticed that the breeders handled another breed of dogs - Coton de Tulears.  I looked them up and found that they had many of the qualities we were looking for; they have hair, not fur, so they are hypo-allergenic, they are calm, gentle, friendly, highly trainable, and are great companion dogs.  Still had the same problem, though - they were over a thousand dollars, and a bit farther away than we could travel.  I put it to rest.

On and off, I looked at puppies as Lucy got older.  I always came back to these Cotons, but everywhere I could find them, they were just too expensive.  As I was searching through the local classifieds online late one night, I saw a small white puppy, called a Havaton (a cross between the Havanese and Coton de Tulear) - for much less than $1,000!  AND the breeder was less than an hour from our house.  Bingo!

We contacted them and found they were going to have a litter of pure Cotons available at the end of November, so we set up a day to go visit them.

Well, hello!

 

We headed to Mueller's Woodville Kennels today to check out their litter of puppies.  Four furballs were brought in for our inspection.  Two were squeaky, one was rambunctious - and then there was this guy.  Quiet, still, calm.  I picked him up, and he didn't clamor to get out of my hands like the others did.  Just quietly, calmly stared at Lucy.  

 

So fuzzy!

 

The whole time I held him, he was calm.  I put him down to see how he interacted with the others, and he was calm.  No yipping, just a little sniffing around.  We found our match.

 

At the very end, he was a bit more sprightly; hopping around and getting his head stuck in the baby gate.  That's good, because he's going to need to be a bit of a clown to entertain Lucy.  She was all about the yippy ones - yippy puppies are her favorite ;)

We have to wait another month, as they are too young to leave their mother yet.  But he's marked as ours.  I can't wait to officially add another member to our family.  I'm hoping he's the perfect match for our Lucy.  Stay tuned - in a month we will have a formal introduction!

 

 

Oh Yeah... It's D-Day!

Another year farther away from the day we were told that Lucy had SMA.  And where are we now?  Lucy is in school (at home, we're not that brave yet ;)), she is rapidly outgrowing her 4T clothes (giantess, much?), and life continues on in our normal.  No illnesses to speak of, though there has been a little more loss of movement.

 I sew Lucy pajamas, and what does she do?  Try to outgrown them immediately.

Almost forgot about it this year!  I was thinking about it beforehand, but today I didn't remember until halfway through, then kept forgetting.  I'll take that as a good sign :)  Lucy is three.  What's up now, Dr. Montgomery?

She's also very good about smiling for pictures now!  Diva.

Unfortunately, there are still scores of kiddos diagnosed with SMA that don't make it this far.  It's not fair.  Please keep their families in your prayers, and help us fight back against this cruel disease.  Check out the"How You Can Help" tab above for ways to make a difference.

Crazy for Crafts!

I'm addicted to Pinterest.  Is there a woman out there who isn't?  It's a fun way to pass time while I pump for Lucy - yes, I'm still doing that :) 

Anyway, Pinterest happens to be a very useful way to spend that time; recipes and craft ideas abound there.  I have a board specifically titled "Things I Will Never Get To" full of fun things to make, and one called "Fun For Lucy," which is pretty self-explanatory.  During the summer, we're out and about so much that we don't really have time for arts and crafts, but now that we're pretty much locked down... there are hours to fill ;)

I had a few different things I wanted to try for Lucy that were fall-themed, so I decided to combine them into one big fall tactile extravaganza!  Lucy is not a huge fan of tactile sensory exploration, but she did okay with this one.  It was good because it had to be done in several steps, so it catered somewhat to her short attention span.  No idea where she got that from.

Meet - our leaf mobile!

It turned out pretty close to what I had envisioned.  There are three different types of leaves on here: felt/fabric paint, wax paper/crayon, and coffee filter/watercolors.  Most of these ideas came from links on my beloved Pinterest.

First we did the coffee filter leaves.  It's exactly what it sounds like - you wet down a coffee filter and paint it with watercolors, letting the colors run into each other for a really pretty effect.  Lucy is having a harder time moving her arms, even in slings, so her leaves are a little whiter.  We only did one small filter - remember, short attention span?  If I were going to do it again, I'd give her a bigger brush than the dinky one that came with the watercolors.  Also, the wetter the coffee filter, the easier the paint will spread.

Then we started the felt leaves.  I helped Lucy spread the paint around on one side (going for that tactile experience), and when that side was dry, I drew out a leafy vein pattern on the opposite side.

Last were the wax paper/crayon leaves.  I was pretty excited about these!  Lucy cannot use crayons in the conventional way, and I loved crayons as a kid.  I happened to have a tiny cinnamon grater in my utensils drawer, and it worked perfectly for crayon grating.  As I have never grated cinnamon in my life, I haven't attempted to clean it, so I don't know if it's something you want to do with your only grater.  All the yellows together, all the oranges together... you get it.  For this, I had Lucy lay on her side and use her slings to help me stir the various shades of each color together. 

I was hoping for a lovely mottled look - that didn't happen.  We sprinkled each color on a sheet of wax paper, pretty densely, then covered that with a second sheet of wax paper.  The tutorial I read about it said to cover that with a thin layer of cloth before ironing (think cheesecloth or those old, thin, white kitchen towels.)  I had a chunk of thin scrap fabric that I used.  You don't need a high setting; I used wool and could probably have done lower.  Those crayons melt fast!  Then I cut leaf shaped from my huge melted crayon sheet of wax.  If I do this again, I will get the crayons melted to the thinnest layer I can - I thought the color wouldn't be as nice, but in the few thin ones I got, it's still good and they are prettier in the sun.  The thick ones have become very brittle, the wax paper is starting to peel off, and I fear for their future.

Then, the assembly!  I used the inner ring of an embroidery hoop.  We tied on strings of bakers' twine and embroidery floss.  For the felt leaves, I threaded those strings through a needle and stuck the needle through the top of each leaf, looping it around and tying a knot at the top so they would stay put.  We did all the felt leaves first.

Next, we filled in with the wax leaves.  I had some huge ones cut out, so I taped those to the hoop with boxing tape - nothing fancy here.  I taped the rest at intervals on each string.  Same with the coffee filter leaves, which I cut really tiny.  You can see the tape, but we just aren't the kind of people who care.

Done!  We hung it above our TV, from a random hook that has been in our ceiling since we moved in.  If I had a decent place to hang it where the sun would hit it, I would much rather hang it there, since the crayon leaves are so pretty in the light.  As it is, we had a few left over and hung them from the front window.

Thanks to Pinterest for bringing so many great ideas to a central location!  I never would have thought of these things on my own, and they are something different for Lucy, too.  Hopefully we'll have a whole fall and winter full of fun things to make!

Baby Be Blessed Giveaway!

I love cloth or knitted dolls for Lucy.  The plastic ones aren't easy for her snuggle with, and cloth ones are light enough to lay on her arm without bothering her (she has a real thing about anything resting on her!) 

She has a Blabla dolly that she sleeps with every night, and a cute mini-me doll from HenAndChick - complete with aqua glasses!  I'm always on the lookout for cute handmade dolls to add to her collection.  I saw someone post about the "Baby Be Blessed" dolls on Facebook, so I had to check them out.

What wonderful little dolls!  And perfect for our family, as they include Bible verses right on the tummies :)  They are having a giveaway right now, so we are entering to win one.  Please keep Lucy in your prayers to be the blessed recipient!  It's so hard to think of one verse to put on, but for Lucy we would have to choose 2 Corinthians 12:9.

"But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me." 

Perfect, right?  We were thinking about ordering one for Lucy for Christmas, but they are so busy making their orders that they aren't accepting any more Christmas orders.  So we're hoping that Lucy will be chosen for a sweetie of her own.  Praying that it works out!

How We Are Doing

A woman came up to us while we were eating lunch today, pulled out a chair, and sat down to talk to us about Lucy.  She had noticed the feeding tube, and thought that Lucy might have had what a friend's baby had had.  We told her it was SMA, and she was surprised that Lucy was as old as she was.  She mentioned that the expected lifespan for Lucy's type was 6-8 months, which surprised me - we don't often run into people randomly who know anything about SMA.  I explained about Lucy's breathing treatments and BiPAP usage, and she thought that was great.  She then asked if we believed in Jesus, and we said yes.  She said she was glad, because then she could see Lucy in heaven someday.  I believe she was under the impression that we were just counting the days until Lucy passed.  So much has changed since her friend had her baby with whatever diagnosis it had, and we don't talk about that kind of stuff around Lucy, so I glossed over those statements.  Lucy's ears work just fine ;) 

Then she asked us how we were doing with it all.  That's a question that I don't often think about, so it kind of caught me off-guard.  I get the impression that people think that we are just putting on a brave face, but are just really crumbling and miserable on the inside.  It seems like even the most positive, the most spiritual of people look at us with their pity just barely masked.  I don't blame them; I'm sure I would react the same if I were in their shoes, not knowing our life.

That's the thing, though - that's what this is for us.  Our life.  After she walked away, I really thought about how I could honestly answer that question.  First of all, this diagnosis is almost three years old for us - which was something else that surprised her.  It's not new news.  And while certain aspects are still painful and frightening, those things are not what is at the forefront of our minds every day.  The closest way I could think of to say it is that it's not part of our lives; it is our lives.  It's not something I can choose to not be okay with.  It is an aspect of Lucy's being.  In my mind, it is the equivalent of her having a speech impediment, or a food allergy, or needing glasses (not to downplay its obviously being a very serious situation) - it's something we mold our lifestyle to accommodate.

Now, everyone deals with and feels about SMA in their own way, and there is no wrong way, this is just what I feel - at least, this is the best way I can think to put it.  As a guide to conversing with us, I'll put this out there - there is no need for pity, please don't assume that no matter what we say that we're barely holding it together, and - most importantly - don't repeat over and over how lucky we are to have our daughter here.  We know.  And she can hear you.

Awareness and Ice Cream

August is SMA Awareness Month, but I'm all about awareness at any time - and not just of SMA, but of children who are different in general.We often walk with Lucy to Gilles, to get her some ice cream tastes.  This time, a mom and her two kids sat on the other side of the picnic table we were at. Her little girl was maybe a year older than Lucy, and leaned across the table and started to ask her mom loudly, "Why is that little girl laying - " Before she could finish, her mom poked her under the table to silence her.

I turned around and smiled, and said "This is Lucy. When she was born, she was born with really weak muscles, so she has to lay down." I could see the girl processing this, and then she asked, "Why?" I said "That's just the way she was born," because she was too young for me to really explain SMA (and we were getting ready to walk home :)).

It wasn't even about raising awareness of SMA, but rather letting that little girl know that there are kids out there who are born with different abilities. My responses to questions from kids are usually tailored to what I think they will best understand (and sometimes to the situation as well), but never will I be offended or bothered by an honest question from a kid. That's the best thing we can do for this society - teach kids early that not everyone is the same, and that's nothing to be ashamed or afraid of. Shushing your child when they have an innocent question about someone with disabilities, to me, sends the message that it's something we should not talk about - and that's the farthest thing from our goal. If you're ever in doubt, you can always politely ask the parents if they are willing to answer a question!

 

Lucy enjoying some ice cream - ignore the snowflake hair clip; that was all Daddy.

 

 

 

Clinic Day!

Since we are so blessed that we have Dr. Schroth only a little over an hour away, Lucy goes in for clinic days four times a year.  These days usually include updating her stats, blood draw, seeing Dr. Schroth, seeing the dietician, having the RT check her bipap... I think that pretty much sums it up.  Not only is that a fair amount of stuff to have done, it's not like they're all coming in one right after the other.  There are wait times in between - usually.  Not this time!

Lucy's AFOs have been giving her bruised heels, so she needed new ones ASAP.  We called the orthotics clinic - also in Madison - to see if we could sneak Lucy in on the same day as her clinic day for castings for new braces.  If you have to pack as much equipment as we do when you go somewhere, it pays to cram as many things into one trip as possible.  The receptionist said that James was supposed to be on vacation that day but was coming in to do some paperwork, so they could squeeze us in.  The only problem was that the time he was in was a scant two hours after our appointment with Dr. Schroth and crew STARTED.  No way have we ever been out of a clinic day that fast!  I was skeptical.

The receptionist suggested we get to our clinic day appointment an hour early, to get out earlier.  So, for us, an hour early means getting there on time.  Seriously.  We sped in and catapulted Lucy into her stroller, zipped up the elevator, and - since we've been hearing that the whooping cough and other awesome sicknesses have had record outbreaks in Wisconsin - we slapped a mask on Lucy to frighten away would-be infection machines.

 

We were so happy we got to see another SMA family as soon as we got to the front desk - the always handsome Garrison, sporting an awesome hat, and his awesome mom Angela.  No sooner had we made introductions, though, than we were called back.  It was so fast, I didn't even get a picture!  And if you know me, you know I am a picture FREAK.  Better luck next time.

Lucy was immediately on edge when we got back there.  She's no fool; she knows she's going to get poked and prodded, and she hates it.  She fussed when they took her blood pressure, and was just generally ornery through everything.  We got Lucy measured and weighed (up an inch and an astonishing 5lbs since our last visit!) and started a clinic day like no other.  Everyone was in and out, we skipped the blood draw since our favorite blood whisperer phlebotomist Noni wasn't there (which garnered a smile from Lucy, when we told her she wasn't getting poked), and bing bang boom, we were out!  We are going to have to set up appointments on the tail end of every clinic day from now on :)

We raced over to the orthotics center (well, as much as a Econoline van can race through insane road construction) and made it only a few minutes later than we had agreed on, which actually worked out great.

Lucy was casted for AFOs and a TLSO.  These braces help keep her ankles from getting too tight and contracted into the ballerina position (AFOs) and keep her back straight when she is upright in her stander (TLSO.)  She took it like a champ - probably mostly because she was engrossed in Sesame Street on her iPad :) 

Lucy in her body sock.

Almost done casting!

 Picked out a fun pattern for her boots, and we were out the door!  The receptionist even told us a back way to get out, so as to avoid the construction, and we also avoided going through Madison at rush hour.  Shaved a good half hour off of our drive time! 

I had prepared myself for a hugely long day, and was pleasantly surprised to get home when we normally do.  Another successful clinic day!  We got to hear multiple times how good Lucy looked, and tweaked the settings a bit on her bipap (and she's sleeping a bit better as a result), along with making some adjustments to her diet.  Still pinching myself to make sure that we are really so blessed to be so close to such a supportive SMA system!

August is SMA Awareness Month.  Please, feel free to take Lucy's story from our blog and share it with everyone you know.  The more people know about this condition - one that is carried by 1 in 40 people, and affects 1 in 6,000 babies - the more urgency will be felt to end it.

Birthday Number 3!

After Lucy's second birthday snuck up on me last year, I vowed that I would allow myself more time to plan something this year that involved more than a cake and some crepe paper.  There never ends up being enough time to do everything I'd like, but the surroundings were a bit more festive this year :)  Of course, with Lucy's Sesame Street obsession, there was really only one choice for theme.

I made some of my own decorations...

...and bought some.  Easy peasy!

 True to form, Lucy was awake early and a bit cranky by the time we got there - so a bipap break was needed.

 And as soon as people started arriving, she took a nap - she was not happy when she woke up!

This year's cake was courtesy of Dairy Queen, so that Lucy could taste as much of it as possible.  

 It cheered her up a bit :)

We yanked on a pinata, and opened presents.

 Lucy got to see Mateo, a little boy from our town that also has SMA!  Mateo is a Mickey Mouse fan, so he boycotted the party by sleeping for most of it.

 And Lucy got to see some of her very favorite friends :)

 And after everyone left, Lucy and her cousin Sawyer had some one-on-one time.

Lucy's a bit more mature than Sawyer.

And now she has a new pile of toys, clothes and DVDs to amuse herself with :)

Thank you to everyone who wished Lucy a happy birthday, and thanks to all who were able to celebrate with us.  Every birthday is a milestone for a child with SMA - a miracle, really - and though we've settle into the fact that it is our everyday normal, every day with Lucy is something to be celebrated.  Every day is a victory in the face of the doctors who told us "no."  Our choice to fight for (and alongside) our daughter is rewarded with her beautiful smiles and her unique personality, which shines brighter each day.  These hours, days, and every birthday that passes brings us closer to the cure - the ultimate birthday present for any kid with SMA!

If you wish to help that gift along, please visit The Gwendolyn Strong Foundation and make a birthday donation - so that no families have to wonder if their SMA child will see another birthday.

FSMA Conference 2012

So, at the end of June we were fortunate enough to be able to attend the annual FSMA conference - this year it was in Minnesota, only a 6ish hour drive for us.  We got to hit up the Mall of America while we were there too, and be all tourist-y.  Lucy brought home some fun souvenirs, Noah brought home a Darth Vader Legoman keychain, and I brought home a wicked head cold that I am just now recovered from, a week later.  Blessedly, Lucy was spared.  It was a doozy, and would have put her in the hospital for sure.  Between that and birthday prep, I wanted to squeeze in this post!

I have to admit, we didn't really go to the conference for the workshops (though we did hit up a couple.)  We went for the camaraderie of being surrounded by 1,000+ people who understood our life, at least on some level.  Not all people affected are type 1, like Lucy.  Lots of people there were type 2, which is less severe.  You had to look out for yourself, because there were powerchairs zooming all over (though I must say, they had some pretty skilled drivers!)

Just what did we do there, then, if we weren't in workshops all day?

We got to make new friends.

And see old ones.

Take lots of group pictures.

And have some first-time experiences. 

 

And Lucy got to try some eyegaze technology!  It was her first time, and she immediately established that she was going to use it how she wanted - to make sheep noises.  The little part I videoed was the part where she was not cooperating because she wanted her sheep flash card back.  

We were surrounded by people we could completely relate to, which was pretty amazing.  And Lucy was surrounded by kids just like her, which she seemed to appreciate (when she wasn't sleeping - this girl has a knack for going to sleep at the exact times we want to do something fun!)  There was a huge aquarium, dance party, pj party, a carnival, and swimming.  All catering to the needs of a kid with SMA.  It was fantastic!  We got some great tips and tricks from more seasoned parents, and got to share some info with other families - who came from all over the world.  We were reminded of how blessed we are to have Dr. Schroth so close by.  And we made our trip safely, there and home.

I'm so glad we got to go this year!  It's funny, because we met so many people that we haven't met before, but since I talk to almost all of them online, it's like getting together with family... but family that implicitly understands our lives with SMA.  It's indescribable.  It was amazing.

Now.... on to the birthday countdown!   

Concerto in the Key of SMA

While we don't focus on it, SMA takes away quite a bit of what one would consider "normalcy" in life - including the ability to be independent.  Taking Lucy anywhere is a production with two people; doing it with one person can be intimidating.  Fortunately, if I am told that I cannot do something, you bet your sweet asterisk that I will find a way (or goad someone into helping me!)

Walks with Lucy are one of the things that I feel relatively comfortable with, at least as far as SMA is concerned.  She can hold her own respiratory-wise and is pretty good at controlling her secretions.  We take along her pulse-ox and suction, and an ambu bag just in case - we've never had to use it, thankfully.  Other variables (stray dogs, creepos) are less under my control, but what's life without a few calculated risks? :)

So Lucy and I ventured out on our own tonight, to a park that holds summer concerts bi-weekly.  It's a goodish walk from our house, but not so far that I dread having to walk back once it's done.  The weather cooperated and it wasn't sweltering; in fact we needed pants and Lucy made good use of her blanket!

Like any toddler, she was pretty impatient.  We got there while they were still warming up, and she didn't seem to think that they needed to play the same few notes over and over.  They launched into their first song (it was a symphonic orchestra, by the way) and Lucy sang along.  She loves clapping at the end of each piece - but the introductions?  Not so much.  The first time was pretty close to a full-on tantrum as the conductor spoke, but the next few pauses she just hummed peevishly.

We both had a great time!  The lady who was so kind to Lucy last year that she brought along a teddy bear for her on the teddy bear parade night was there.  She came over right away and said she had been looking for us and was wondering if we would come!  She bent over to say hi to Lucy, and Lucy beamed at her. :)

There are many things I cannot do with Lucy - but how could I think of those things while there are nights like these to enjoy?

Like that smirk?  She smiled for one second 

when I held up the phone, and I wasn't quick enough, 

and this is the most she would give me after that.  Stinker.

Lucy Loves

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

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

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

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

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

One who fights.

A Thank You and a Clarification

Anyone who read my last post could probably tell I was a bit perturbed.  I get hotly defensive regarding Lucy, and I have a bad track record of not being able to silence the nagging voice that says "Just say something... just say something..."  And the internet gives me the forum to say those somethings.

Thankfully, it also gave me the opportunity to contact Avery's dad, who so graciously listened to my rambling explanations about why this was haunting me, and very reasonably agreed to change the wording on his blog, which is getting some real exposure.  The initial post now does not include any statements about quality of life for children with SMA.

I also wanted to clear up - for those who read this blog but do not have access to my Facebook page - that I was not trying to make any accusations regarding parents who choose hospice care for their children.  As I said on my page, I will not make absolute statements about any path but the one we chose, and then I can only attest to our own personal experiences.  That being said, do I think all parents are only thinking of their children when making the decision of whether to go with hospice or something more aggressive?  No, and that goes both ways.  We see day after day in the news horrific stories of what some parents are capable of.  I know this world is not full of parents who only take their child's well-being into consideration when making life decisions.  We are all human.  Even special needs parents.  Just a few weeks ago, I read three separate stories about kids with cerebral palsy whose parents killed them, in various ways.  Obviously we can't say that all parents with special needs children are doing what's best for them.

I do believe, though, that the majority do what they think is right.  Whether that is to pursue treatments or to let their children go is not up to me to decide - I am responsible for Lucy, no one else.  It's not my place to make those calls, or judge them afterwards.  I am not the one who has to live with the outcomes of those choices, so it's really none of my business.  I just do my best to share hope, because that is what I know. 

I'd like to leave you with another blog written by a truly well-spoken mom to a SMA angel.  She weighed in on this debate as someone who has experienced the loss of her child, and what this debate over palliative/hospice vs. non-invasive/trach has meant to her.  Thanks Audra, for always speaking your heart.

If you find it in your heart to help us fund research that has the hope of being lifesaving and life changing for children born with SMA, please check out the "HOW YOU CAN HELP" tab located at the top of this blog.  There are a few charities that you can donate to, and the money donated will help fund programs that will change Lucy's life, and the lives of many living with and those yet-to-be-born with SMA.

R-E-S-P-E-C-T - This is what it means to me

Time to dust off the blog.

Lately I have been seeing more parents of children with SMA talking about quality of life - specifically, newly diagnosed families blatantly stating that children with SMA do not have a good quality of life.  This is disturbing to me, to say the least.

If you are one of the 35 people who will probably read this post, you know Lucy and know that the previous statement couldn't be farther from the truth.  But for the thousands of people who are reading posts from blogs like this - where it says "In some cases children like me can survive with the dependency of a respirator, but their quality of life is not very good and more often than not, the life expectancy is still less than ten years of age and even lasting past two years of life is not guaranteed" - they aren't exposed to a Lucy, and will not know any different.  They will think that an extended life with SMA is all doctors appointments and crying and misery, and "prolonging the inevitable."  

Incidentally, is anyone guaranteed a long, healthy life?  Because you are born without SMA, are you guaranteed to survive past two years old?  Shouldn't you just stop eating now - you're only prolonging the inevitable?  Death is inevitable for all of us.  Life is terminal.

I do my best to keep my opinions - because that is what they are, opinions - to myself, out of respect and compassion for other families.  Not everyone chose the road that we did, and it is not up to me to decide whether their choice was the right one.  But if it is offensive for me to say that I think people may choose a palliative (read: hospice) route because they are not willing to put in the effort, or because they think they may have to alter their lives too drastically, isn't it equally offensive for them to state as gospel truth that children like mine have a poor quality of life?  Both statements are making assumptions regarding a life they know nothing about - yet one is appalling and one is acceptable?

I ask - who has determined that these children have a poor quality of life?  Their doctors?  Nurses?  Grandparents?  Neighbors?  Parents?  Or the children themselves?  Sadly, since most are diagnosed so young, we can't ask them how they feel when we get the news.  We don't know what they would want for themselves.  We can only do what we see to be in the best interests of their health and happiness.  What I see in Lucy is a happy girl.  Is she happy all of the time?  No.  Is your "healthy" child happy 100% of the time?  

Will there be hardships ahead for her, and for us as her parents?  Most likely.  Have our lives had to drastically alter?  Yep.  Do I think that I made the wrong choice?  Hell no.  I will make any changes necessary to my life to help her live hers.  Does it look like I am selfishly "prolonging the inevitable?"  What do you think?

If people really want to make a difference, they will get the message out there with a link to an organization that is FUNDING LIFESAVING RESEARCH - something else that blog misrepresented.  There is in fact clinical research going on, right now.  Take your pick of the sites below if you *really* want to make a difference.

The Gwendolyn Strong Foundation 

Miracle for Madison and Friends  

I have respect for parents' choices for their child, though I may not agree, and would not presume to say all parents who choose hospice are lazy and don't want the trouble of caring for a special needs child.  I expect parents who choose hospice to have that same respect for families who choose to fight, and to refrain from making sweeping false statements regarding the quality of life for children they know nothing about.