Monday, July 15, 2013

I Pity the Fool

We love to take Lucy to the music in the park in our town.  The talent varies, ranging from symphonic orchestras, to polka bands, to cover music.  The crowd varies too, but a little less than the music - we are usually on the younger end of the spectrum :)  We're considered regulars, I guess, and a lot of the crowd recognizes Lucy, and waves to her as we come and go.

On our way out last week, an elderly gentleman stopped us and asked if he could ask us a question.  We're almost always game, and told him to shoot.  He said, with a smile, "You just always seem so happy..." and trailed off.  I assume the unspoken question was "Why?" or "How?"  Because having a child with Lucy's challenges means that might be a difficult task, if not outright impossible.

(Note: I was not feeling insulted.  At least I don't think I was.  I'm sure he didn't intend it to sound the way it did.  At least I don't think he did.)

Here's the thing: we don't dwell on what could have been, or what we had once hoped for.  We focus on what is.  And what is, is a little girl who does not deserve to have parents feeling sorry for themselves.  We had our whole lives; childhoods full of softball and bike rides, camping and birthday parties.  Teen years rife with troublemaking and first time experiences.  We met each other, fell in love, got married.  Had a kid.  We've had all those years to live for ourselves, make our own memories.  And now, our time is about Lucy.  To make sure she can have her own happy memories.  I'll be damned if I'm going to let self-pity rob her of that.  You just have to make that decision - to be happy with what is.  Truly happy.

I'm happy because Lucy is happy.  Lucy is growing, and is silly, and can experience things in her own way.  And when Lucy is not happy - which happens - I am like any mom with an unhappy kid.  I'm probably disciplining her ;)  It's life.  To me, it's my life, it's the way it is, period.  Regular.  And to wish for anything different, or to lament the situation, is just inviting a miserable existence for not only me, but for my daughter.  And Lucy does not deserve that.  She deserves to have people marvel at how happy she is - how happy WE are.

Lucy baking up a storm with Daddy - she's been in her room for two straight days now, because I am sick and she can't come out into any areas of the house where I've been, and I cannot be near her.

Bedtime of day three - Daddy keeps her occupied well :)  Is she bitter about being stuck in her room?  Or mad that she missed music in the park tonight?  Nope.

Saturday, July 13, 2013

Lucy 4 year celebration!

In years past, Lucy has been notorious for being sleepy/cranky/tantrum-y at her birthday party, because of a lack of sleep the night before.  Whether that's because she's excited prior to the big day, or just a child's knack for knowing how to thwart her parent's best laid plans, I don't know, but I did know that I wanted this year to be enjoyable.  Enjoyable for Lucy seems to be low-key and laid back, so we pared down the celebration and kept it quieter this year - and didn't mention the party to her beforehand ;)

Laid back.  Low-key.  Quiet.  Dress by Mama, Lorax hair clip by Kind Kreations.

Lucy's friend Mateo came too!

Lucy's other love, besides her loyalty to Sesame Street, is Dr. Seuss.  She doesn't care much for the movies, but she LOVES the books - particularly The Lorax and Horton Hears a Who.  I bought The Lorax for her before she was born, and was attempting to read it to her when she was a week old, so I guess my plan worked!  I decided that would be our theme this year.  Surprisingly enough, for all of Dr. Seuss's sage wisdom and character appeal, there are scant few birthday decorations available, so I had to come up with some myself!

My love for Etsy and Pinterest really came in handy here.  Fortunately, I found an office supply site online that provided cutout wall decor that would have taken me eons to draw myself (and they were then recognizable, score!), as well as cardstock book covers that I hole punched and strung with ribbon.

See the Truffula trees in the corner?  Tissue paper and pool noodles - thanks Pinterest!  And the centerpiece was all me :)  I saw some marabou Truffula trees online, so I stocked up on various colors of marabou, wooden dowels, and craft paint, and added them to a great Who border that I got from the office site.  My dad drilled out some holes and a divot for the border, I crammed them in and slapped some moss and paint on, and voila!  I know, I know, Whos and Truffulas are not natural together, right?  Not like a Lorax popping out of a tree, or an elephant hatching an egg.  I don't think Lucy minded!

And then there was the cake - I was hoping for something that Lucy could easily see and appreciate from her vantage point.  Printed on graphics were not going to cut it.  I contacted a local baker, Josh from Josh's Cakes, to concoct something for Lucy based on cakes I had seen around the web.  This is what he came up with - 

See any resemblance?

Just spectacular, right?  I was beyond elated when he sent me the pictures.  I made up a few extra Truffula trees to add in, and we were all set!  I was so excited to see what Lucy thought.

She loved it, and she loved being sung to.  In the right, controlled, comfortable setting, she is a huge fan of being the center of attention :)  Then it was cake time!  We got a cake that we thought Lucy would be able to taste most of; one with raspberry filling and key lime cheesecake, along with regular white cake and a divine buttercream frosting.  It tasted as good as it looked!  I already have an idea in mind for next year :)


Mateo liked his too :)

Then it was time for presents!  Daddy got Lucy up for a little break off of her back, so she could check out the decorations close-up...

...and then we made our way over to the unwrapping corner.  Lucy decided that she had had enough party, and was trying to go to sleep.

Once we got started, though, she perked up :)

Had to sneak some Sesame Street in there anyway!

She was having fun, but had to throw some sassy eyerolls in after awhile.

We were getting to the end, and started opening some clothes that were decidedly too small for Lucy.  She was amused at first, and then not so much.

Seriously, Ma, what is this about?

We saved ours for last - Lucy has been more interested in dollies lately, and we've been scoping them out on our Target runs.  They have an Our Generation line that is akin to the American Doll brand, and she seemed the most interested in those (they have blinking eyes!), so we chose one for Lucy.

Not opening fast enough!  Eyeroll!

It's a dolly!

Look everyone, a dolly!

And she matches me, because Mama's a freak.

She stayed awake, she did not have a meltdown, and she liked her presents and decorations.  Major success!

Lucy is 4.  When she was initially diagnosed, we were given the same grim diagnosis that almost every SMA family receives - even the type 2 families, sometimes.  But when we saw Dr. Schroth a couple of weeks later, we were discussing Lucy's sleep patterns (she would go to bed at 1-3am and wake up late,) and Dr. S said "Well, you'll have to take care of that before she starts school!"  Just like that.  Matter of fact.  And that took care of it for me.  My kid was going to beat SMA into the ground, and I was going to do whatever I had to to help her do it.  So if I said I was surprised she made it to 4, I'd be lying.  But do I feel blessed?  Absolutely.  And shouldn't every parent?

Friday, July 5, 2013

Independence Day!

SMA means that Lucy doesn't have a lot of independence, but that didn't stop her from celebrating our country's!  Last year, the weather was miserably hot - so much so that even healthy kids were staying home. This year, though, the weather was gorgeous, and we just had to take full advantage!

We started the day with a parade.  What's the 4th of July without a parade?  Lucy had a pretty good view of the band, the fire trucks, and the beauty queens.

She had a crafty shirt this year, thanks to Pinterest ;)

The louder, the better!

We headed up the hill about halfway through, to hit up the brat fry before the crowds came.  That parade lasted an hour and a half!  Lucy was bored by the time we left, so it worked out.  She chatted with Grandpa while we chowed down.

Grandpa's mustache is fun :)

We did some quick shopping for fireworks, then headed home for Lucy to rest in the AC.  Big evening coming up!  She didn't nap, and didn't nap - and then, about an hour before we were going to leave, decided to fall asleep.  Fortunately, she woke up in a pleasant mood, and we were off!

Outfit change - guess where we're going!

Last year, we attempted the fireworks, but by the time we got to our spot, Lucy was pale, lethargic and sweaty, so we packed up and headed home.  This year, there was a good breeze to keep the mosquitoes away, and temperatures were delightful.  We set up shop early, ate dinner, and broke out the entertainment:

Sparklers!  Lucy is a pyro :)

Lucy LOVES sparklers, and the ones we got were veritable flamethrowers, so she was entranced.  After each one burned out, she yelled for the next.  Fortunately, we had a box of close to 100, so we had enough for our firebug, and to be able to share with the kids all around us.  A little extra smoke to help keep those buggies away! ;)

We burned holes in our blanket and the top of our cooler, but Lucy was happy.

The night went on; it got darker, Lucy got sleepier.  At close to 10pm, the first fireworks shot up, and Lucy smiled.  She grinned through all of the fireworks, and loved the loud, flashy ones (while the girl Lucy's age in front of us screamed and wailed.)  We were close enough to see the ground show well this year, and Lucy loved it!  She loved it all.  Our town put on a wonderful show!

They're starting!

Ground show

Lucy grinning in the dark :)

After they were done, we paid the price for being so close: sitting in traffic for close to 45 minutes, as everyone fled the park.  Lucy was sleepy, but in a good mood, so we chatted about the fireworks and sang along with the radio to pass the time.  When we finally got home, it was bedtime for Lucy!

All in all, an idyllic holiday - and we don't even have a single mosquito bite!  Let's hope that next year the weather cooperates like it did this year!