July 15, 2015

This is How We Roll




Cross country road trip is underway.

Me and my kids minus Bridger.

These kids know how to roll.

10-14 hours per day on the road has been absolute bliss.  Quietest three days I have had in the past 8 years.

They read.  They watch out the window.  We have listened to hours of talks on cd.  I have taken advantage of the captive audience behind me and have had some wonderful discussions about life. 

We make our token stop at Cabela's in West Virginia to load up on their delicious fudge to nurse along our long drive.

We roll into the hotel and crash.  There isn't the insane setting up of a special needs travel bed or the hours it takes for their special brother to decompress from the stimulation of the travel.  We roll in, brush our teeth, and fall instantly to sleep.


On the road we don't have to stop at every Wal-Mart across the interstate (as we did in our previous trip) to appease the hours of screaming from Bridger who is obsessed with Wal-Mart.  We only stop twice for gas during each 13 hour leg on the road - and hopefully that times itself with each child's need for the restroom.  Tough beans if not.  Lunch is assembled on the road, courtesy of Chef Sadie, who passes the trays along.

The first night we had a picnic dinner at a quaint little table for four outside of Sheetz gas station.  Every was just grateful to be able to eat outside of the car for a change.

Our second night I surprised them with a dinner at the famous Brookville Hotel in Abilene Kansas.  Delicious fried chicken dinner and all of the fixin's served up family style in a dining room with the most ornate wallpaper you have ever seen.


Across the Midwest you see a lot of semi-trucks with their beds loaded with the most interesting equipment.  We play a game every time we pass one called "What do you think THAT is for?" and every one tries to come up with their most creative guess as to what the obscure hunk of metal atop the semi bed is used for.  That is how we pass those otherwise long hours across Indiana and Kansas.

The last day of our leg is when the trip really starts getting good -- because that is when the amazing scenery picks up.  Not that we didn't love the scenery of Kansas.  But here are the comparisons - you be the judge. . .



Within a few hours of our destination I found a little roadside gem - a ginormous completely accessible playground.  It made us all miss Bridger and wish he was with us.  All of the kids ran every single stiff joint back into full range of motion and jumped back into our van for the final few hours of driving.





We landed safe and sound at our first destination, where we dropped Lance off for a week of Boy Scout camp and the girls and I continued on the road to begin our mother/daughter road trip.

Most wouldn't think traveling solo with four children 13 and under would be listed as a cake walk.  But the perspective and experience of the alternative for us can't help but make us label it the easiest three days of our summer so far!

Rolling Onward!



July 10, 2015

Muscle Through It


55 pound chair.

82 pound boy.

94 degrees.

85% humidity.

Recipe for death I tell you.



With Bridger's growing size body and growing size chair, our existing accessible van was no longer accessible.  In preparation to sell it, we removed the wheelchair lift and remounted the power sofa in the rear - which has made it ultra-inaccessible and restricted me to my little (but hardly little) Chevy as a daily driver.  For the past month I have been performing the circus-worthy feat of lifting his chair up and into the back of my Chevy while rotating it in the air to slide it sideways and bounce it back far enough to achieve clearance to shut the tailgate.  That performed only after I lift the 82 pound boy with his 40 pound (feels that way) cast into the car placing him limb by limb into the back seat.

I am not going to miss that.

I head out in a few hours on a great adventure.  Operation "Bye Bye Van".  I am driving across country to drop off my van at a dealer as a trade where I purchased our new soon-to-be-accessible van from that will be shipped to us some time not soon enough.

Alan is staying home to work and man Fort Bridger and Sir Ty, along with the help of our trusty caregiver.  By night fall I will be somewhere in the middle of Indiana with four little side-kicks in tow.

I have some amazing adventure planned.  You should know me well enough by now.

Stay tuned.

I hope my muscles don't go soft with this decadent break from my daily weight lifting routine.


July 09, 2015

The Up's and Down's


We have had our share of up's and down's this summer.

A crazy day at the amusement park proved to be one of the most relaxing days we have had in a long time.

It was wonderful!

With Bridger enjoying a fun day-long date with his sweet caregiver, Alan and I took the kids to King's Dominion for the day!  We dared to embark on the next stage of parenting called "fostering independence".  With our older kids being of appropriate age and having grown a sensible enough brain, we gave them a phone, $20 and a time to meet back up later on in the afternoon.  Lance informed us that was "very good parenting" and took off with his friend, Evie and Sadie and the four of them had an absolute blast.  This strategic move also allowed Alan and I to escape the requisite rides of those mega coasters that we have to go on when we accompany our kids.  I just can't handle those kinds of ups and downs anymore.






Alan and I sat on a bench and watched Eliza as she scampered from kiddie ride to kiddie ride to her heart's content.  There was not a brother with his associated needs and demands to slow her down or detract from her fun in any way and she glorified in that complete attention.

The ride that cracked me up the most was her Snoopy Driving School.  Instructed to stop at red lights, she then would stop in the middle of the road when she saw a red light, any red light, no matter how far away she was from the intersection.  It made for slow progress on the road for her.



Somehow Alan drew the short straw and had to go on this ride with her.  I think he knows that he will always draw the short straw when it is a ride I don't want to go on.  Hello!?! - laying on your stomach and spinning around in circle.  Holy hurl.  Way to take one for the team honey.




We enjoyed a delicious catered lunch (courtesy of it being Alan's firm family day). We enjoyed waiting out a quick and intense downpour and really enjoyed the nearly empty park after the storm cloud passed and having access to every ride with no lines.

After the up's and down's we have experienced with Bridger the past few weeks, it was wonderful to have a little taste of some summer fun.

July 03, 2015

Brand Snob


I proudly strut my Wal-Mart jeans.  Grocery store double stuffs are far superior to Oreos.  I risk the ripping spillage from cheap black trash bags that the Hefty commercials scare you into thinking will happen.

When it comes to frozen pancakes, though, we don't mess around.

Pancakes are holy here.  It was Bridger's first oral food and continues to be one of his only oral foods.  After Bridger had one of his major seizures and was intubated and heavily sedated for many days and was first regaining consciousness, he could not speak and could scarcely open a single eye.  With that half open little blue eye looking at me he clumsily took his hands and signed "drive car", "pancake" - which interpreted means, "I want some hotcakes from McDonald's" and gave a little weak smile.  You had better believe this momma was charging down that hallway to get some pancakes to room 524 STAT.  After thinking that we might have just lost him, that was the most precious request I have ever seen.

Pancakes still play an influential role in his life.  Bridger created two poems this year using his voice-output device.  One was about his beloved service dog, Ty.  The other, was an ode to pancakes.

Pancakes
By Bridger

In the morning
I look at them
circles, brown
syrup!
Happy!


Bridger's favorite book this year --



Yep.  More pancakes.

So when it comes to frozen pancakes it is nothing but the best here.  Eggo or bust baby.

My husband is continually tempted to save the 59 cents and purchase that generic box of microwavable pancakes.  

The generic microwavable pancakes are a little gooier and gummier when Bridger chews them.  He can't motorically manage that in his mouth, which then causes him to gag, retch, and vomit.  You get a very short notice of such.  I hear that initial soft gag and I immediately perform multiple finger sweeps of his mouth followed by a forced drink from his sippy cup of milk to help wash the remaining offensive pieces down his throat.

On Wednesday I was working at my typical speed of 50 mph getting him ready for the school bus that was set to arrive in 90 seconds.  You have to be waiting for the bus when it arrives at the end of my driveway - because it will not wait for you.  Bridger was at the table eating his generic pancakes and I was preparing his snack when from over at the table I heard that warning gag.  I did a grand flying leap in my bathrobe to get to him in time to perform the finger sweep. . . but it wasn't in time.  Full stomach vomit including an entire chocolate formula box all over him, his chair, his seat cover, his harness, his ipad, the table and the floor.  I froze in space and surveyed the mess, looked at the clock and let out a long slow exhale.  I had 45 seconds to right this wrong.  Evie and Sadie snapped into action - one bravely scrubbing the butterfly harness while the other got me a fresh outfit for him.  We worked like mad cleaning up him and all the pieces of the chair in a hot 60 seconds following which Evie wheeled him out to the bus as I was running behind her spraying air freshener on him.

Some days are just that good.

The ipad was a goner.  The cost savings of such a choice has proved to be at a net loss to us. Brand snob from now on.

July 01, 2015

I'm Broke


Summer is in full swing.  Or, at least, should be.

Let's face it, many mothers of children with special needs would rather chew glass than endure a long summer.  The sudden lack of structure that the school environment provided wrecks havoc on sensitive systems, thus creating countless and endless behavioral outbursts.  Hauling a heavy wheelchair, and its accompanying boy, in and out of the Virginia heat and humidity is a workout to rival any spin class.  The lazy days of summer don't exist in a home with a child with special needs, nor do most fun summer activities.  The pool is impossible, as is anything else that exposes heat or sunlight to Bridger.

Do I sound like I am griping?

I am.

I didn't start off this way.  I had grand ambitions for this summer.  This summer was going to be different.  I had carefully plotted and planned wonderful adaptive camps to allow windows of time to take the other kids to the pool and escapes for a short soft serve cone.  I got a taste of my wonderful planning for the first three days of summer.  It was delightful.  It was the summer of my dreams.

Only 5 days into our break, however, we broke.  He broke.

Fractured fibula.

*sigh*

I dared to take my eyes off Bridger for 30 seconds.  He was sitting in the family room with me working in the kitchen and scooted on his bum into the foyer where Eliza was playing and proceeded to scoot up to the third stair.  

{insert note: He hasn't tried to go up the stairs (because he can't) but I had been working on the skill with him as a safety measure.  Our house is proofed in every way that I can stand it.  We have automatic closing gates at the top of all our staircases.  We have ramps out of our doors.  We have covers on the sockets and cords out of reach.  We have reduced every transition piece inside and out to avoid wheelchair tipping hazards. We have furniture anchored to every wall.  What makes life safe also makes it exhaustively annoying as well.  Anyone can stand to live like that through a few toddler years, but it produces a much greater fatigue to know you will be barricaded and barred throughout your home for the rest of your life.  Now we will add gates to the bottom of all of our staircases as well.}


The doorbell rang and Eliza answered it as I walked in to the foyer to see Ty running down the stairs to see the guest at our door.  He knocked into Bridger who fell forward  onto the second stair with his legs folding awkwardly beneath him and we caught him before he fell forward onto his face.  The "we" that caught him would be myself, my guest at the door. . . and Ty.  Ty immediately knew what he had done and he pushed his body protectively at Bridger.  It was amazing to watch his instinct.  I have seen a lot of emotions from that dog, but this was the first time I had seen remorse.


Children with special needs often don't present with the same pain threshold as their typical peers.  Perhaps they live with such discomfort every day that a broken leg feels just as uncomfortable as any other day they endure.  I examined Bridger and didn't see or feel anything out of the ordinary, nor did he act hurt.  I sent him to camp the next morning but felt I should pick him up early to get a precautionary x-ray.






My gut instinct was correct.  Sure enough, the x-ray revealed a fractured fibula.  Tough boy.  He had a temporary cast put on and we went in the following day to the orthopedist for his hard cast.  They were sensitive about his altered mobility and cut it low so as to not irritate his thigh when he bum scooted and gave him an extra thick heel which he uses to pull himself when he maneuvers on the floor.  {note: that extra thick heel is currently ripping up my hardwood floors. Oh well.}

That is when the discomfort began.  Bridger can be poked and prodded and endure an hour of iv placement, but it isn't until they put on a bandaid that he freaks out.  The broken leg is no different.  The cast is worse than the injury.  To quote my older son, he is a "hot mess".

We had to cancel his adaptive summer camps for the next couple weeks and wait this out at home.  It is a long wait.  I am not sure how much the cast weighs, but it feels like a combined weight of a couple hundred pounds when I try to awkwardly lift him.  He has also learned how to use it as a weapon when he is upset and has nearly knocked my head off a few times.  When he lifts his legs when I change his diaper, he is unable to manage the extra weight on his leg and his foot falls hard and knocks him in his nose if I am not able to anticipate that and catch it first.

Rough times.

Ty continues to show his love and remorse by giving his leg extra loves.





He also follows him around the house.  It is quite hilarious to watch.  Wouldn't you agree?




This last video is our favorite command, which Ty is most obedient to.  It isn't one he came to us already knowing, it was one we taught him.  Bridger loves a big wet kiss.  As you can see, all is forgiven.


The wonderful 1/2 full glass that I have come to know and appreciate is that just when I thought life was hard, it can become harder.  Which then, when it returns again to the former, makes you realize how easy it was to begin with.

Counting down 3 more weeks until I have my "easy" back.