March 31, 2016

5 Dollar Solutions


In the land of Special, solutions usually come at a steep price.  The problems we are trying to solve though, are usually so complex and life hindering that you will pay any price for a possible solution.  Those solutions are found in Special catalogs of equipment and devices where you can guess the price you think it should cost, add 2 zero's to your guess, and then you will be correct.

Once in a while, my brain sees a solution in the ordinary.

This time, my brain found the solution in the pirate section of the toy store at Disney Springs.

Problem:  I need to push a wheelchair, that takes two hands.  Eliza loves to wander, which is usually not a problem in our every day crowds to keep an eye on, but this was Disney.  Eliza would rather jump in the lake of goose sludge than hold her sibling's hands.

Solution:  Rubber chain and handcuff.

My heart took a leap after 2 seconds of staring at that for the solution that lie within its pirate play intentions.


I hooked one side onto Bridger's wheelchair.  The chain extended just far enough that Eliza's toes wouldn't be run over by the wheelchair and gave her a little loop to put her arm through so she didn't have to even remember to hold onto something -- which, when you are enticed by a store we are walking by, is apparently hard to remember that you are to keep ahold.

She felt tied to us on her own terms.  I kept her attached to me through the crowds.  We used it all through Disney Springs and the Magic Kingdom.

Brilliant.

Problem solved.

For less than $5.

March 30, 2016

Carefree


Our entire mission for the day was to be leisure and just enjoy the moment we were in.  

Our goal was to feel carefree.

First order of the day was to leisurely stroll Disney's Boardwalk.  We perused the shops...



and saw all of the things I had no desire to buy.

And then found the one thing to purchase that we couldn't live without on this trip.



To the average shopper, this might look like a key chain. 

But no no no, this is no ordinary key chain.  THIS little green rubber thing is a CHEWY!

CHEWY
/chu wee/
noun 
soft object that can be munched and chewed in the mouth as needed to self sooth during times of an overly taxed sensory system.

We were embarking on a completely unstructured journey, with sounds, crowds, extra stimuli and such. We needed a Chewy - one in Bridger's favorite color and shape no less.

Bridger knew what to do with it and put it to immediate use.  Every time he was getting upset or anxious, he fingers nervously grabbed for his chewy which we had attached to the strap of the stroller (along with a half other brightly colored Mickey shaped keychains that he couldn't live without).


At the boardwalk with time on our side, we ferried over the boat dock.  Eliza cracks me up at her independence.  No fear of strangers, she confidently parked herself on the bench between two of them when space was limited in the wheelchair row where I was sitting with Bridger.


At the dock we decided to go on a family boat ride through the Disney channels.  I have never driven a boat and was a little concerned that that didn't concern the boat company. Did they see me look down for the gas pedal?  Wouldn't that have given them cause to worry?  Nope.  They threw a couple life jackets on the littles and gave me the keys and away we went.  Our bodies were soaking in the gorgeous weather.  Having just come from "snowy with a chance blizzard", this was the most pleasant shock to our systems.








Notice the Chewy in use?
 We jammed out to tunes, soaked up the sun and reveled in the feeling of being carefree.

Being carefree is a feeling that is not experienced very often in the life of Special, and is not a feeling I could put a price on.

But today's price was $9.95, precisely the cost of a Chewy.




March 20, 2016

Meanwhile, Back on the Homestead


Poor Alan.

He got the short end of the stick in my magnificently spontaneous plan.

His lot was to stay home and work.

However, an epic snow storm that shuts down D.C. doesn't lend itself to the kind of work he was left home to do.

He did another kind of work.

Hard, manual labor.

Shoveling,

and more shoveling.

The original plan called for us going to Florida together.  We were supposed to leave the following week and drive down together as a family.  When I saw the storm coming and decided to skip town a week early, we knew that Alan couldn't take the extra time off of work.  So we found a one way plane ticket for him to use the next week and fly down and meet us.

That plan hinged on him being able to get out the back door. . .



March 19, 2016

Off the Clock


We had the storm behind us and sunshine ahead of us and time on our side.

That was the most refreshing part.

Time.

Our time, on our terms.

I get exhausted by the tight clock we live on.  It starts at the 0:dark thirty hour we have to get up for the laborious effort to get Bridger ready and is dictated by the final evening hour that his medication must be administered.  The clock is ruled by bus times, by doctor appointments, by meal times, by activity times.  My husband's time is dictated in 7 minute increments for which he is accountable and I am mindful every time I call him at work of how many of those 7 minute increments I take up.  I time our phone conversations to be 6 minutes and 59 seconds.  

We all live on a clock, and that clock gets pretty bossy sometimes.

The luxury of a our spontaneous getaway was that we didn't tell the clock we were going.  We didn't pack it and we didn't let it follow us.  We left the clock at home.

The only requirements of our time was that I knew we would have to eat. . . at some point.  I knew that we would have to sleep. . . at some point.  And I knew that I would have to change Bridger's diaper. . . at many points.

It felt incredibly liberating.

We dilly dallied our way down to Orlando.

When we saw the Hot light on as we passed a roadside Krispy Kreme, we stopped for a break. When we decided that the boys were looking a little shaggy, we stopped at a barber.  When we stopped at the hotel for the night, we requested a late check out and lingered as long as we wanted the next morning.  We stopped en route to Orlando at the charming city of St. Augustine and wandered, off the clock, until we felt inclined to continue driving.


Upon arriving in St. Augustine, we checked into a hotel and gathered around the little coffee table in our room for a picnic of Subway sandwiches.  The excitement was still palpable.  We were having a great adventure.  The hotel lobby greeted us with an eclectic pirate shell lady inviting us for some family crafts -- which is another word for a heap of junk that the kids would think was the most valuable treasure, not to be parted with until it became confetti all over the floor of the van.  But when there is no clock, why not go hang out in the lobby with a table full of shells, dollar store trinkets and a glue gun.



He called it his "masterpiece" and it survived for several days in the car.

That was an especially exciting night for the older kids, as the hotel didn't have adjoining rooms, so Lance, Eva and Bridger had a room all to themselves.  Because of lessons Lance has learned in our Special life, in many ways he is 14 going on 24 and assumes the responsibility of such.  The thought of being the "man of the room" brought out his responsible side (much to my relief).  He sets up Bridger's special needs bed and helps get him ready for bed, he even can administer the meds via g-tube and takes care of his feeding needs.  I checked on them often and tucked them in.  They exercised their independence by turning the lights down low for Bridger to sleep and reading late into the night.



\

In St. Augustine we toured the Alligator Farm. Some animals didn't like Ty, and Ty didn't like some animals.  Ty wanted to jump in and play with the exotic birds and whined to get on the other side of the glass window.  In the next moment he looked like he was going to lose his breakfast when he had to walk over the boardwalk suspended above the pond swarming with gators eagerly waiting the food pellets we were throwing at them.






Even though Ty couldn't see them it was obvious that he still had a very keen sense of smell.  And he was not keen on what he was smelling.

When Ty feels uneasy, he is sure that Bridger must be feeling the same way.  So he comforts and loves - whether needed or not.




When we had had our fill of the gators, we looked up the best eats in St. Augustine, according to Trip Advisor {insert my love for Trip Advisor} which led us to the north end of town to a food truck.  We dined on fresh shrimp Po' Boys and shrimp bisque soup.  Eliza was in heaven. I am pretty sure her face was just about to melt into her bowl with every scrumptious spoonful.  



Trip Advisor then led us to a delicious Liege waffle shop tucked into the center of town. Not a very handicap accessible center of town, so I found myself an undersized parking space for my oversized van and sat there with Bridger in the van and gave the older kids $20 and told them to come back with whatever looked good.  They excitedly took on their assignment and returned to the car with a sampling of treats that we all enjoyed.  We drove around the historic Fort Mantanzas National Monument and finally decided Orlando was calling.

Bridger was a champ.  For a boy whose functional state requires structure, he was letting his love of novelty and excitement dominate his emotions and was such a delight.

We drove on,

on our terms,

according to our whims.

Off the clock.

March 11, 2016

The Flip Side to Flexible


When you have Special in your life, you learn to adapt.  As do your other children.

I am not speaking of the adapting of your physical environment - your home, your furniture, the car, etc. Although, we do all of that to the umpteenth degree.

It is the adapting of your brain.

The other children learn to adapt their brains -- to be disappointed, to be intruded upon, to be hurt, to be patience when they don't feel it, to be calm when they are stressed, to be inconvenienced, to be annoyed, to be put upon, to be put last, to be wronged, to deal.

They learn to be flexible.

Special comes with a lot of lessons in flexibility. 

This January, as I was sitting in the hospital all afternoon unexpectedly with Bridger - I had just hung up with my daughter who learned that her 11th birthday party she was so excited for - that was scheduled for that afternoon, would have to be postponed as a result of the hospitalization.  Because of her learned flexibility, she took the disappointing news like a champ. After I hung up, however, I had another idea. . . 

To put into action the flip side to flexible. 

Because their lives have become accustomed to all of those elements of "adapting" -- which are disappointing, not fun, not fair and threaten to suck so much joy out of a child's life, they have become incredibly flexible in every way.  We have had to have a lot of flexibility this winter, so I decided that it was time to test that flexibility in a positive way.

While in the hospital with Bridger, anticipating discharge within an hour, I called home and told the kids that if they could pack themselves and help pack their younger siblings in 30 minutes, that I would drive them to Disney World that night. . . or towards Disney World that night, at least, which is 13 hours away.

That night -- the night when The Great Snowmageddon of 2016 was supposed to hit. There were winter weather warnings across the entire mid-atlantic region.  

I wasn't flexible in my timing.  We had to leave in 45 minutes to miss the storm and that required the kids packing while I finished up at the hospital.  I had calculated that if we left in 45 minutes, and drove as far and as fast as we could, that we could hit the southern tip of the storm at a semi-reasonable hour of the night.  We could beat the storm and stay the night in a hotel on the North/South Carolina border and continue our drive the next day under clear skies. 

I arrived home to see a flurry of packing activity.  It was a comical flurry -- it was. . .  um, what's a word to use here. . . intentional, though I wouldn't necessarily credit it as efficient or thorough, but it was their best effort so I went with it. When I had called home to make the announcement, they stopped dead in their tracks of whatever they were doing and threw together their best guess of what they thought they would need and had it loaded in the van. Lance had put together all of Bridger's special stuff needed for a road trip and we headed out for a late night adventure.



We grabbed some Little Caesar's Hot and Ready (not easy to eat in the car -- but one of the few things Bridger can eat on the road, so we are flexible).  Lance sat next to him and fed him bites as Sadie acted as the van waitress.  I watched my phone all the long night drive, following current estimates of when the snow was supposed to start falling and watching that southern tip of the storm on my tracker with the hopes that we could make it out of the advisory area.  Eva, despite being very tired, demonstrated her flexibility and stayed in the front seat, keeping me awake in the wee hours as we embarked on a very fun, however unexpected adventure. 

We settled into our hotel at 2:00am.  Groggy but elated.  We woke up to a van covered in ice, but only wet roads that allowed us to continue our southward trek.

I was filled with pride as I watched my little crew march into our hotel room that night and start the routines of setting up the special needs travel bed, jammy up the littles, potty the service dog, charge the electronics, refrigerating Bridger's meds. They would have rather just immediately crashed into a bed.  It was 2am.  They were tired.  They were flexible.  They kept doing what had to be done.

For every time they have to miss an event,

For every time they have to have their parents miss their event,

For every time their brother breaks something precious to them,

For every time they have to explain to their teacher that their brother ate their homework, again,

For every time they have to sit in the seat next to their brother and get smacked the entire car drive,

For every time they celebrate a holiday with their brother and mom in the hospital,

For every time they have to watch their brother's preferred cartoon,

For every time they have their hair pulled,

For every time they have the are forced to give up their sausage from their plate at Bob Evans to avoid a Bridger meltdown,

For every time their favorite toy becomes the object of Bridger's obsessions,

For every time they get screamed at point blank in their ear and have to breathe through it unfazed,

For every time they get their toes (painful) or heels (even more painful) run over by the wheelchair and have to keep walking,

For every time they have to "abort mission" and leave a fun destination because it is not accessible or their brother is having a meltdown,

For every time they have to wait for hours in the boring doctor's office for their brother's appointments,

For every time they are forced to be flexible. . . . .

There is a flip side to flexible.  They are flexible to join me on the journey to find joy and excitement in our adaptable life.

And I am grateful that their flexibility bends that was as well.





March 09, 2016

Paying Homage


We paused for a moment yesterday and paid homage to,

The Pancake.



Yes, indeed.

National Pancake Day.  

A day for reverence.

Pancakes hold a place near and dear in our hearts.

In some brilliant luck in motherhood, I had 5 young children convinced that pancakes are to be eaten plain.  All of those head to toe, syrupy sticky messes made by little ones who consume a short stack -- not here.  Plain, boring and clean was the way to eat a pancake in the Larson house and I counted that blessing every time I served them up.

Pancakes are also special because it was one of Bridger's first oral foods (second only to the waffle - that we honor in August).  Bridger's diet, outside of enteral feeds, was exclusive to pancakes for years.  

We rejoiced at his consumption of them.

Pancake vomit cleanup was frequent - and much preferred over the formula puking.

We are all versed at the oral finger sweep to free gooey pancakes lodged in the roof of his mouth that he cannot motorically manage...and can initiate such action rather quickly before more pancake vomit follows.

"Pancake" was one of his first signs.  He then learned his first "signing sentence" when he added "drive car" before his pancake sign, which meant, "I want to go to McDonalds for some hot cakes."

That signing sequence became burned as a forever memory on my heart.  After one of Bridger's massive seizures - a time that we were sure we had lost him, and he was intubated and severely  sedated for days to allow his brain to recover, I was watching his little lifeless body finally regain consciousness in his hospital bed.  With a single eye barely half open, he looked at me and signed "drive car, pancake" and smiled a lopsided smile.  You had better believe that this momma jumped out of her chair and got some McD's hotcakes delivered to his room STAT.

So to those of you that celebrate with us, and for those for whom yesterday was just another day, I say to you on behalf of the flapjack, griddle cake, hotcake loving Larsons,

Happy National Pancake Day!


March 08, 2016

One Day Longer


Are you tired of seeing that creepy mannequin head for the past 2 months?  

Me too.

I'll try and do something about that.

I have been tired of seeing her picture stuck in the leading position on my blog.  

But mostly, I have just been plain tired.

When explaining to a friend how tired I was recently, she asked me why.

"Has Bridger been sick lately?  Has he been in the hospital?"

We have been hospital-free for the past 2 months.  Bridger is healthy.  I thought about the source of my fatigue and my only explanation to offer her was,

"No. . .  I have just been doing this one day longer."

I am not sure it made sense to her.  But it does to me.  The daily physical and mental demands are so great that sometimes they catch up to me.  The only explanation to a sudden hit of fatigue is that I have just done this one day more.

I was experiencing that fatigue last week when we were hitting our 5th doctor's appointment of the week (which is topped by 7 appointments this week).  The appointments are not close by.  They require tricky scheduling for the other children to keep their lives going as they should.  It is exhausting to load Bridger in and out of the car and at the appointment.  I usually leave with a huge pat on the back and some very kind words of support from the doctors. . . along with a longer list of things to do to medically manage Bridger.

In that moment of exhaust, I looked in my rearview mirror and saw this,




How can that cute mug not do anything besides put the wind in your sails and make you smile?


On the way home from our appointments we always stop by my favorite Mexican quick serve restaurant for a celebratory salad (while Bridger dines on his drive-thru hotcakes from the neighboring McD's).  It feels more fun to call it our "Celebration lunch" doesn't it? We are celebrating another appointment down.  We are celebrating one more day that he and I did this together.  And that feat calls for a party.

This last party was a celebration in and of itself.  We had just come from his gastroenterologist.  We have been seeing him for 7 years.  For the first 4+ years Bridger was entirely g-tube fed.  Over the course of our time with him and years of intensive feeding therapy, we have seen amazing progress.  

Progress is hard to see when living the Special life.  Every day looks like the day before and tomorrow will be more of the same.  We get giddy when we see someone we haven't seen for a while and they gush at the difference and growth of skills in our child.  It helps us step back and realize how far our child has come -- one micro step at a time.



Sitting there at our dining table I had one of those moments.  I was watching him clumsily hold his fork with his shaky awkward grip.  He intensely focused on his plate as he speared the piece of pancake and slowly made it to his mouth (most of the time).  He spilled his plate on his lap a couple times, but he kept going, piece after piece until he declared with a smile that he had finished.

That moment took years of time, hard work, therapy and medical interventions to achieve.

The smile that it put on my face gives me the energy to keep going. . .

at least for one day longer.