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.