Sunday, September 23, 2012

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!

Friday, September 21, 2012

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!

Tuesday, September 11, 2012

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.