Care Notebook

Next May, Chad and I will be going on a weekend trip alone for the first time since Asher was born.  We're attending the Weekend To Remember marriage getaway in Franklin, TN, and I'm SO looking forward to it. 

My parents will be staying at our place and watching Asher while we're gone, so I need to have lots of information written out since he's not your typical kid and this will be the first time they've watched him overnight.  I came across this care notebook from Seattle Children's that I think will make that process much easier for me.  There is an editable PDF for pretty much everything you can think of (and then some) regarding special care.

We should have had something like this filled out long ago, but better late than never.  It's worth taking a gander if you have kiddos with special considerations. 

The W's Abide

We're in.

Finally.

Over the past half year or so I've learned a couple of important lessons about house selling.  One, it is a monumental effort to present one's home to complete strangers on a regular basis.  Multiply that by pi for every pet you own.  You might need to work on your multi-tasking skills because you will have to do that multiplication whilst vacuuming.  Constantly.  Invest in ear plugs if your small child is less-than-fond of the roaring beast that is Bissell.

Two.  Never sell your house.

Okay, maybe that's not quite realistic.  Families grow, businesses relocate, needs change.  Yadda yadda, I know.  Our family of three (+4 four-leggeds) had most definitely outgrown our little two bedroom cottage.  It wasn't helping matters that I clung am clinging to every single toy and article of clothing that Asher had ever owned with a Vulcan death grip. 

Aside: That's the second time this week I've worked a Vulcan reference into conversation.  The first was laughing with some girlfriends as they discussed Farmville tactics.  Trekkies everywhere should be proud of me.

It was time for three bedrooms, and it was time to move to a neighborhood that was a little more family and wheelchair friendly.  And I must say, I love our new home.  Love it.  It's a ranch, which gives Asher full accessibility to all the main areas of the house, and it even has a handicap accessible bathroom for when he gets a bit older and we enter the world of solo-bathing.  The jetted garden tub is nice for therapy, too.  Mommy therapy.

Nonetheless, the cottage holds many memories, and I started crying like a baby was a little sad as I locked the back door for the last time.  Our first home as a family is now ready for someone else's firsts.  Asher won't remember snuggling with his daddy after his first bath at home following a four-month hospital stay, won't remember his first birthday, won't remember his first giggle - but I always will.

Festivals, Light, and Noise

Today was spent entirely downtown at the Rivers & Spires Festival.  I was volunteering at the ClarksvilleMommies.com tent in the Kidz Zone, so I was there first thing at 10AM.  My first shift ended at 1:00, so Chad came down with Asher and Sebastian so we could just walk around and enjoy the festival.  The last time we went was three years ago, pre-Asher and pre-Sebastian, so it was due.

I have mixed feelings on this sort of thing.  I feel like Asher should get out and be able to participate in fun things like this - after all, we grow through experience.  On the other hand, there are certain things that are really difficult for him or that upset him, so then I wonder if it's really benefiting him or if it's just putting him through it for no reason.

There were two main issues with R&S: light and noise.  Asher has always had a sensitivity to light.  I remember the very first time we were able to take him outside - at four months old.  We had been moved over to "Pod A" of the Vandy NICU and his daytime primary, Gina, took us on a walk in the little garden that was adjacent to our new digs.  We have that happy moment documented on video, of course.  You can watch it now and see his desperate attempt to get away from the sunlight.  In all fairness, when you've spent four months indoors, going outside is bound to be a shock; however, even as he came home and was out more and more, he would still squint his eyes shut and try to turn his head to escape the sun.  Come to find out, light sensitivity is not all that uncommon in kids with CFC.  And, as with everything else, there's a broad range of what it looks like over time.  Some kids eventually adjust, and others remain light sensitive.  The joys of a rare syndrome with outcomes all over the map.

Asher's sensitivity to noise has lessened over time.  He used to freak out over what felt like the slightest increases in volume.  Luckily, it was fairly easy to soothe him and calm him back down, but things like going out to a restaurant were, for awhile, not an option.  Now I'm happy to say that Asher can join us at O'Charley's and sit and play happily in his highchair while we enjoy a nice meal that someone ELSE made.  Really loud things can still get to him, though, and let's face it - festivals are not known for their quietness.  Asher did really well today, however.  He only got upset a couple of times - once near the bouncy houses full of happy screaming children, and the other time when we stopped on the street to chat with some folks and it turned into one of those situations where you have three different conversations going on at one time and everyone slowly gets louder and louder so they can be heard.  Those can make me want to cry, too, so I don't blame him.  ;)

All in all, we had a great time, and we'll definitely be going again next year (hopefully with a CM explosion of presence!).  For now, I am dead on my feet with my first sunburn of 2010.  I think a long, hot bath is in order.

Raising Asher

So I know what you're thinking.

Really, Cayla?  Another
blog?

Well... in short, yes.  :)

In
not-so-short, I've been thinking about doing this for awhile now and
just haven't taken the time to make it happen.  Technically I don't have
that time this weekend, but I'm feeling inspired, so here I sit at
12:26AM, typing this little explanation to you, faithful reader.

I
already have a blog.  You can read it here.  I have no plans for it to go anywhere.  As
a matter of fact, I'm still in the process of trying to convince my
husband that he needs to do his fair share and post once in awhile.  But
whereas MMLA is about basically anything and everything, this blog is
about one thing only: Asher.

Some of you know Mr. Asher and
his story quite well already.  Some of you don't (but soon will).  Now
that we have entered into the realm of the two-year-old, it's time to
chronicle.

You see, for so long Asher was so
behind.  He still is.  But before he had little interest in the world
around him, and frankly, I was just trying to get by and clinging to a
prayer.  Over the past several months I've watched as my son hit
milestones that I once was unsure if he would ever reach.  I've watched
his personality blossom into its own very distinct Asher-ness.  I can
play with him... and he can play back.  I can talk to him... and he
responds to me in his own little language.  Yes, most kids have blazed
past him as they hit their own earmarks of development, but Asher has
never given up, and though he is left behind in their wake, he is
marching ahead at the pace he and God have determined.

And
I'm okay with that.