The Whole Year Inn

Wearing his Batsuit and playing at his new desk.
Wearing his Batsuit and playing at his new desk.

Today’s title refers to  one of my favorite movie scenes from, “Leaving Las Vegas”.  On his quest to drink himself to death Nicholas Cage checks into a motel in Vegas called, “The Whole Year Inn.”  Then, upon second glance, the title of the motel reads, “The Hole You’re In”.  When I’m feeling really down and stuck in a dark place, I always think about this scene and it makes me smile.  I’ve never been one to wallow in self-pity or let feelings of hopelessness and despair get in the way of living my life and moving forward, even if I’m only moving one infinitely small baby step at a time.  I always just figure, at least I’m moving, since standing still is how you get run over.  But over the last number of years nothing reminds me more perfectly of the hole I’m in than doing our taxes.  As if it’s not bad enough to live the year all on it’s own, now we get to sit down to a handy dandy recap of everything that’s gone wrong.  Adding up the medical expenses, filling away the foreclosure payments from the studio, calculating how it’s possible that we now owe more on our home equity line than we did at the beginning of 2012, which, if added to the cost of our condo, means we can never, ever, ever move out of here.  Stuffing all the paperwork from our audit into manilla envelopes, sorting through cards of sympathy and encouragement, debating whether there is any value in keeping the veterinarian bills from Sadie, debating whether or not we can even afford the very modest headstone at the cemetery where our baby girl is buried.  Then we take all of that and deduct it from what we’ve earned this year, and just like last year and the year before that, it’s a loss.  A total loss. We practically have to make up income so that the IRS won’t come after us again since it’s a fiscal impossibility that we still have a home.

But then the sun comes up and in the other room comes the sweetest voice I’ve ever heard repeating “Apple, apple, apple” over and over in his crib.  And our day gets going, and he’s eating and loving his macaroni and cheese, and he’s trying my cereal, eating my oatmeal, and keeping all of his food down as he’s done for almost a solid month now.  That’s probably the longest he’s ever gone without reintroducing me to his stomach contents.  The bottle is an issue once again as a whole mess of teeth are coming in, after all, one cannot live on only 4 teeth though he’s doing a great job of trying.  So we eat, and we play, and we work on our standing, on trying to take steps while I hold his trunk, on reaching, on twisting, on bending, on stretching, on clapping, on grasping, on talking, on page turning, and our days are filled with therapeutic play in between the therapy appointments and it’s pretty awesome.  Last week Aleck’s OT declared, “Aleck’s back” and it’s true, he’s back.  He’s smiling, he’s happy, he’s full of energy, he’s laughing, he’s playing, he’s tearing up his play mat and I couldn’t be more proud.  He’s clearing all the toys off his high chair again, making friends with strangers in the grocery store again, sleeping through the night again(on this we are so blessed), and excited about eating and exploring foods again.

We can no longer see his ribs, which were visible from his front and from his back.  We are no longer cleaning up vomit anymore, and Aleck no longer smells of the remains of the previous day’s puke which would get stuck in his ears even after multiple baths and packages of Q-tips.  We are no longer afraid to take him out in public as he’s stopped scowling at strangers and seems to honestly enjoy rides in the shopping cart or meals in a restaurant high chair.  Therapy sessions both at the RIC and at home are so much more enjoyable since I can now take a back seat to the therapist and do things like throw in a load of laundry or load the dishwasher and or better yet, go to the bathroom without Aleck breaking down in tears.  Instead of just getting through each session we are now moving forward again and it feels so good.

And then at night we go back to doing our taxes.  We check the box on the worksheet that asks if your dependent is disabled, and even though we don’t really know for sure, according to the State of Illinois, we check that box.  Then we try to brainstorm about applying again for SSI, or maybe I can get a night job, or what about doing another Groupon, is there a reality show coming up that would have us as the stars, is there a rich uncle about to die we never knew existed, if I write a really heart wrenching letter to Ellen do you think she’d surprise us on her show and give us the $50k we need to get us out of this cheap Vegas motel?

I’ve been collecting toys for Aleck lately since his therapy is all based on motivation through play.  With 6 therapy sessions a week, plus the speech/feeding, toys can get old quickly and we both need to stay motivated to get Aleck as close as possible to his mobility goals.  But we are running out of space, which isn’t hard to do since we didn’t have much room to start.  One of his doctors is constantly talking to me about Go Baby Go mobility, which is a program at the University of Delaware that modifies toy cars so that children who have mobility issues can get out in the world, interact on a playground, feel what it’s like to be able to move where they want to all on their own.  So I’ve been looking for anyone who has one of these motorized cars so that we can modify it for Aleck’s needs, but even if I found one I have no place to put it.  We barely have room for his stander which I bang my shins into everytime I go into the office.

Despite all the spacial issues, the real problem is going to be our stairs.  Thankfully we were smart/lazy/cheap and bought our place on the second floor and as Aleck’s been gaining weight I can feel how sore and tired my arms are carrying him up and down the stairs.  Don’t get me wrong, I’m not complaining, yet.  He’s probably about 17 plus pounds right now, but with the constantly falling value of our condo we need to stay here as long as we can.  Our plan is to move right before he starts kindergarten so we can move into a good school district, but that means another two or more years of potentially carrying Aleck up and down the stairs.  Even if we get him on his feet and moving, it’ll be slow and the stairs will most likely always be a problem, especially the way they are right now covered in patches of ice and slush(though Craig works really hard to keep on top of the salting and shoveling).  It can be nerve wracking.  I had a job last week on Wednesday night, after the RIC, and had to saddle my mom with getting Aleck home.  She thought I was nuts when I insisted she drop me off at my event and then meet up with Craig so he could go back to the condo with them.  But when I brought up the issue of the back steps, especially the day after a big snow storm, she realized that she couldn’t do the job all on her own.

I’m sure many are wondering why I’m not using a baby carrier and I’m not really sure why myself.  I didn’t get much of a chance to use it when he was younger, first with the castings and the hip splint.  Then with the shoes and bar it was just too much of a hassle to undo the bar from the shoes to get him in and out, after that it was the Spica cast post hip surgery, then we were in the RIC.  Now he’s not a little infant anymore and I don’t know if he’ll tolerate it.  Plus, I can’t really wear it over my winter coat, and he’s too big to fit under my coat.  Part of me thinks it’s inevitable and I’ll have to figure out how to get both of us happy with a baby carrier, the rest of me thinks it’s more of a pain than a help.  Though to be fair, I finally have the time and the head space to even try to make it work.  We’ll see.

In other Aleck news, I’ve posted a bunch of new videos to our blog.  Most notably are the videos “Aleck is Clapping” and “Rocking the Batsuit.”  I bring these up because I think they are a great illustration of how Aleck is doing with his Batsuit/splints for his upper body mobility.  It’s amazing how differently he plays and functions with his suit on and I’m so thrilled that he really enjoys wearing his suit.  I no longer have to worry about squeezing the hour of play in everyday in the Batsuit since he enjoys the play so much more with the additional mobility.  And yes, you read that right, Aleck is “clapping”.  I couldn’t teach him to sign the word “more” (bringing his hands together) but in 15 minutes of play on the changing table Craig taught him how and he’s started clapping during his diaper changes, while reading him a book, and through every activity during therapy.  It’s so adorable.  He’s not making any noise with the “clapping” but he’s got the motion and it’s giving him, and us, great joy.

On Tuesday we are going in to get fitted for Aleck’s first set of active AFO’s, Ankle Foot Orthotics.  He had one on instead of a cast when he broke his ankle after hip surgery, but that was just designed to hold things in place.  These will be to help stabalize his knee, foot, ankle and leg, until the muscles get stronger, to help him stand and then to use when practicing walking.  As with any new addition to our routine I have mixed feelings.  I’m really excited that we’ll have some assistance keeping his feet in a good position when we practice standing.  Sometimes I wonder why I wasn’t born an octopus as it takes as least four arms to hold him up and keep his feet in their correct position(truthfully, I feel all moms should grow at least another set of arms once they have a baby).  One of the main issues is that his feet turn outwards when he’s standing, which means that the club foot correction was a total success, and they continue to slide in that direction as the minutes pass in standing.  Another big issue that needs corrected deals with the length of his legs, his right leg is shorter than his left leg, partly because of the surgery and partly because that’s how he was born, so we need to figure out if we are going to put a lift in the AFO or get a pair of shoes and put a lift in one of them.  Once that’s all decided it’s on to shopping for shoes that will fit over the AFO’s, yet another wardrobe challenge in the life of sweet Aleck.


One Reply to “The Whole Year Inn”

  1. I’m sorry to hear about the taxes and the pain of going over the past year again. BUT…Clapping?!?! That is so wonderful! 🙂 And eating like a champ! Love it love it love it!!!! Philip just hit the 17lb marker, so I hear you about going up and down the stairs….our place is a double decker here. ;P I’m about to check out the videos.

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