December 10, 2018

Could I Order a Seizure Salad?


In Life with a Side of Special, there is always a base layer of stress, angst and anxiety - caused by one thing or another.  Sometimes I feel frustrated that our moments of joy are never without the co-existence of a little knot of sick in my stomach.  I was trying to describe it to someone the other day.  The best physical description I could give it is like swallowing a burning hot marble -- and always feeling that hot marble rolling around in your gut.  There is a rare moment that I can get so busy that I can forget that it's there - but almost always, that hot marble ensures a constant awareness that not all is well.



One extra layer of angst this week has been an increase in seizures for Bridger.  The school called on Monday reporting some convulsive seizing, then called again later that day to report more.  I brought him home to observe him.  By Friday we had 2 pages full of noted seizures.  I cancelled my plans for Wednesday and took B for an EEG, which I try to convince both he and I that it is indeed a fun date by having lunch together after.  If his EEG could read perseverations in his brain it would have shown that all he could talk about during the test was what Wreck-It Ralph car he would get in his Happy Meal.


There was a hair salon next to McDonald's, so I applauded my bold move to take him to Great Clips after lunch and let the stylist scrub all the EEG goop out of his hair and give him a haircut at the same time.  That stuff takes forever to get out so I was smiling all the way home from his appointment. {simple joys}

Whenever we have a health *bump* -- even one that will resolve itself in time, it means opening Pandora's box to a few extra doctor's appointments/tests, a few more days home from school, a change in medication - which means some negative behavioral changes while he adjusts to the new dose, and a few more insurance phone calls.  Always extra time for that in December, right?

So if I seem distracted at times, please forgive me.  I am thinking about that hot marble I swallowed and the seizure salad I am being served this week, that I didn't order.

December 06, 2018

Picking Up






Picking up from the present.

Picking apart the 6000 blogs that have filled my head since my hiatus.

Picking through the memories of Virginia that I took with me in our new family adventure in Dallas, Texas.

What a year.

How did we get HERE?

I ask myself that same question in disbelief some days.

It started with a question that Alan and I looked at each other and asked,

"How do we want it to end?"

We said the same answer to each other,

"Not this way."

The "it" was the beginning of the end of parenting our littles as they become bigs and find their wings and fly.  Lance was a sophomore.  How that happened, I don't know.  We realized our precious oldest child would soon be gone.  Then would follow his sister, the very next year, and another sister 2 years after that.  

I'm not ok with that part of God's plan -- that we care for these children that we love so passionately to our core, and then they leave.  But we don't get a say in that, so at least we can have a say in how that chapter ends.  When we had 5 children in 7 years, it was all we could do to keep juggling all the chaotic toddler circus that we were immersed in.  Never did I get a thought that having the children so close together meant they would leave just as fast, on each other's heels.  It is surreal to think how those crazy days of 5 kids 7 and under, could go so slow when time can go so fast.





For the better part of the past 20 years, Alan would leave for work with the children still in bed and he would return home from work and the children would already be in bed.  He would work on vacation -- I will never forget the many conference calls he tried to be on while in the lines at rides at Disney.  

Lance is everything we could ever dream or want in a son, and we didn't want his last two years at home with us to end like that -- with Alan at work when Lance's day started and coming home after Lance was asleep.  We wanted to leave this chapter with no regrets - making memories every second that we could so that when each of these older children leave, our hearts our satisfied that we did everything we could to savor this gift of time with them.

We decided that it was time for Alan to leave law firm life and go work as in house counsel for a company.  Corporate 8-5 life, vacation time, sick days -- all the luxuries we had never experienced.  He started looking, not sure when a position matching his seniority and expertise would pop up.  It was a slower process than we thought it would be with the criteria we had set.  Well into the summer of 2017, the perfect position was discovered.  HR worked quickly to make the transition for us in time for school to begin in Dallas, which was just a couple weeks away.  We tried to find a house in a whirlwind 48 hour trip to Dallas.  I cannot even begin to go into the restrictions and criteria of a house to meet Bridger's needs and be wheelchair friendly.  There wasn't one on the market and the decision was made that we needed to build - even though that meant an 8 month time table and a non-wheelchair friendly rental.  We got a late start into the new school year, packed ourselves in a rental, signed a contract to build, put our Virginia house and cabin on the market and started our new chapter in Dallas.

It was a mess.  The house didn't sell immediately, nor did the cabin.  We had some strong grievances with the school system for Bridger as well as the high school.  Living in a non accessible house - even for a short time, was torturous on us physically and mentally with Bridger.

Abort mission.


We made the decision that I would return to Virginia with the kids and finish out the school year there in our house while it was on the market.  We found better school district and location to build our accessible home in another suburb and signed that contract to start digging.  Alan would fly home on the weekends.  We called our first attempt our "Faux Move" and had the comfort of our brief three weeks in Dallas to know that we loved it, and to know what things we needed to change to make it the best we could for everyone.

We took the opportunity to squeeze in as many East Coast adventures that I could with the kids knowing that our time as Virginians was almost over as we would soon convert to our new title of Proud Texans, and let our inner "y'all" find its way into our vocabulary.

So here continues the story of these little acorns growing into great oaks, Texas Edition.





July 07, 2017

This Moment







Oldest daughter and myself

each with a new library pick

sitting on the creaky porch of an historic building turned taco shop

surrounded by more of the same in the charm of our town

lingering over a lunch gone long -

over two hours long,

as we read in quiet contentment

and savor every moment of our perfect Saturday afternoon together.

This moment will be added to my collection.

July 03, 2017

The Cavalry


As newlyweds, I learned the importance of compromise in a marriage.  

First lesson learned - there would need to be compromise with the television.

You see, I learned my husband and I were television-incompatible.

I liked HGTV, and he liked. . . I honestly don't remember, but it wasn't HGTV.

We settled on a "compromise" channel, the History Channel.

I learned a lot about history in those early years of our marriage and a little phrase has stayed with me since, 

"Here comes the Cavalry!"

In battles, the cavalry often were a critical component to win the battle.  Cavalry were critical to be quick to get where needed, secure best ground, set up the infantry to be in the best position possible to battle and provide reinforcement and relief when infantry were battered and weary.

When I had a gaggle of little children at home I used to enthusiastically say to myself, "I am the cavalry!"  I had a busy mommy life with 5 young children (that were ages 7 and under), I had a husband working long hours - often leaving for work by 6:30 in the morning and home after 10pm.  It was me - the army of one.  I knew that when I was tired or stressed or going crazy (or usually all three) that I was the one that would need to assess need, be the problem-solver and would be the only one there when need called to provide the reinforcements.  In the thick and throes of motherhood, I had to find the strength, roll up my sleeves and solve the problem.  My mid-day mantra whisperings of "I am the cavalry!" was an encouraging reminder to myself that I had the ability to get through the challenges before me and conquer the day.

A few years later, my battleground changed.  Those earlier daily challenges of potty-training failings, wall-coloring, raisins stuck up the nose, puking in the car, sleepless nights, crocodile tears, knocking ketchup bottles off grocery shelves, boo-boo's and spilled milk transformed into something else.

They evolved into the challenges of Special.  Special challenges include all of the above, on a much larger scale, with the addition of sleepless years, backbreaking physical requirements, strains to the body, mind, pocketbook and calendar, and guilt to make a wonderful childhood for the other children.  We were fighting daily battles, however we found ourselves deep in the trenches - tired, weary and little room for hope.  

My self-affirmation, "I am the cavalry" lost its effectiveness, because in my new journey of Special, I was no longer certain I could summon the strength to overcome the challenges before me.

I was no longer the cavalry.

But the cavalry still arrived.

The cavalry came in the form of others, coming in to bring reinforcements to me.  And, like it must have been for those weary infantry, the cavalry -- my cavalry are a sight for sore eyes.

My cavalry has come in the form of a friend bringing a chocolate shake on a bad day or a friend showing up on our doorstep and asking for the keys to our lawn mower (and not accepting no for an answer) to mow our lawn so Alan could have some time with his family when he got home late from work.  It has come in many other small but critical waves, including Jill's House.


Cavalry has come in the form of Jill's House - Bridger's respite lodge.  Jill's House has been a large cavalry brigade that allows Alan and I (and our other children) a weekend of rest each quarter.  I cannot describe the feeling of rest and relief we experience in our home that Saturday morning when Bridger is enjoying his time at Jill's House.  It is the feeling of peace compacted and condensed into rich, relaxing moments when he is not screaming for us before the sun comes up and his list of demands and needs begins.

Jill's House gives rest to the weary and wounded.  I often linger in the thick leather sofas after I check Bridger in and watch the other exhausted parents enter with their excited child and their overnight bag in tow.  I recognize the weariness in their faces and also recognize the look in the parents eyes after they hug their child "good-bye" for the weekend and they look gratefully upon the attendants that lovingly take their child back to their room.  It is the look a tired soldier would give to his heroic cavalry brigade.

That is why I was honored to speak the week before last at one of their major annual fundraisers, the Jill's House Ride.

Pictures cannot do justice to the sight of 350+ purring motorcycles riding in a powerful pack from Manassas, VA (a fitting location to this analogy with its rich history in Civil War battles)  to Jill's House in Vienna, flanked on either end by a team of police officers on their bikes.  They pulled into the parking garage waving to our greeting of cheers.  And, prone to spells of lachrymosity as I am, my eyes became quite leaky at the power sight of those roaring bikes pulling in as my family and I stood waving.



During the lunch to follow.  Bridger proudly accepted the check on behalf of Jill's House for over $135,000 that they raised that day.



I then began my remarks by telling those riders something they probably didn't want to hear.

I told them they were beautiful.

I know when you see large packs of power bikes, with men and women covered in studded leather, with beards and heavy boots, tattoos, belt buckles and such, that the words that come to mind might be cool, tough, awesome, fierce. . .



But that afternoon, in that moment, they were beautiful, and I told them so.  I think they felt it, too.

They were beautiful at that moment as they came riding to benefit Jill's House, because they became my cavalry, and the cavalry to everyone of my dear friends that loves Jill's House and all it represents just as much as I do.

Through my challenging experiences in my last decade since our Special journey began, I have learned to listen closely for the same voice that comes to my mind as it did in those early years in motherhood that says, "I Am the cavalry."  

The difference now -- I realize that I am not the one whispering it.


June 30, 2017

Dear UPS:


Dear UPS Driver,






It's early Friday evening, and I know we are both tired.  But in your effort to save yourself some steps, you prevented someone who is unable to take any steps at all from going into a toy store.

I can't imagine that you didn't notice when you reversed in to park, that you were parking in a handicap spot.  Not only did you take up one handicap spot, but you took up TWO handicap parking spots.  Which could also be numbered as all of the handicap parking.

I drive a large van.  It is nearly as large as your truck, so we have that in common, you and I.  Where we differ is my large van is an accessible handicap van with a lift that I use to get my son, who is (and will always be) in a wheelchair in and out of the van.  Our ability to go places depend on those handicap spaces.

I sat and watched your truck for a long time.  I was two aisles away, in a row that would have plenty of space for your truck.  It would have required you to use your dolly and take a couple trips. However, it couldn't work for me because when you parked in all of the handicap spaces you were also blocking the handicap curb cut out.  So even if I didn't mind pushing a wheelchair around the end of the aisles of the parking lot rows to the main shopping center lane and back down around towards the handicap parking spots (because, you see, wheelchairs can't fit through the parked cars of the aisles like walking people can), I still couldn't have been able to get into the store because you were completely blocking the curb cut out for wheelchair access.



Maybe, to you, this is a little thing.  But to a mother of a child with special needs, who just wanted to take her non-ambulatory son to the store, it is a big thing.

There are already enough challenges to people who need handicap parking caused by those who illegally use handicap tags that they get their hands on.  We can't afford to add to that the abuse by those who don't have handicap placards issued to them.

I know that the speedy delivery of those packages is important to UPS.  It is a great convenience you offer customers to have their packages delivered promptly.  However, your parking choice of "convenience" to accelerate that customer service to some is an incredible disservice to others that you displayed your blatant disregard to tonight. Which, to you, is clearly a population that is not as important.

I would pay millions of dollars if my son didn't have to be in a wheelchair his entire life and my physical burden this evening could have been limited to a handful of extra steps and a dolly.  But it isn't.  Nor will it ever be.  So for now and forever, I am grateful for my special blue tag and the access it allows an amazing little boy to experience just a little bit more of life.  

Please don't take that from him.






June 27, 2017

DIY {A}



I have spent many a moment holding back the tears as I walk through the aisles at Toys "R" Us every Christmas, birthday and occasions in between trying to find something that Bridger will be able to play with.

I come away empty handed and heavy hearted.

I have a favorite catalog of special needs toys and such that I receive in the mail.  I pour longingly through the pages and am used to the steep price tags attached to everything "special", but I have figured out the formula to help unfamiliar minds calculate those prices.  

Here it is:

**With any special needs equipment or toys, take what you think it would cost, triple that number, then add a 0 to the end of that number, and you will be correct.**

The price of "play" for Bridger is nearly impossible to swallow.

Bridger had a wonderful physical therapist early on that taught me to look at Home Depot through "special" eyes.

And that is what I did to make some summer fun for Bridger et al.

I call it DIY{A} (Do it Yourself Accessible).

I had been looking at the special needs catalog and drooling over an expensive accessible sensory table for Bridger for the past year.  I knew he would love to wheel up and play in the water and sand buckets.  It was something "age appropriate" where peers would want to join him in play.  Unfortunately, an accessible sensory table play table cost around $800.  And because we still like to eat, it is not in the budget.

But maybe. . . just maybe. . . 

I drew up a design, measured Bridger all around and did some hard math (that really should be easy math) and headed to Home Depot to look through the aisles with my "special" eyes.

I cut a bunch of different lengths of 2x4's, added some decking brackets, heavy duty concrete mixing tubs, screws and casters from Home Depot and used some left over paint in our garage.




I created the frame which the girls helped me assemble, screw and paint.  We added the two concrete tubs,

And voila!




An accessible sensory play table for $41 that can roll out of the garage to the driveway or roll back into the garage for some shady cooler play time.  Ty likes the shade space underneath -- even when Bridger thinks it is funny to have some water continuously dribble from the tub onto his tolerant pal below.







It's not catalog worthy - but it is wheelchair kid worthy and they have enjoyed hours of playtime fun with it.

I purchased a dozen pounds of kinetic sand (awesome for kids with sensory integration disorders) and a bunch of miniature sand toys and put them on one side, and added water and little plastic bead things that grow to large gel-like water marbles (because that is as technical as I can describe them) which are sensory delights, along with a bunch of water toys on the other side.



I have spent many afternoons in my lounge chair watching friends gather around him at the sensory table and play with him.  It makes him smile.  It makes me smile, too.

*     *     *     *     *     *

As I was becoming more brave with my crafting abilities, my mind continued to chew for a solution for another dilemma.  Bridger loves imaginary play with food.  All of the little play kitchens and play markets I found were designed for the under 4 crowd and the designs prohibited play if Bridger was in his wheelchair.

But maybe . . . just maybe. . .

I drew up a design, used some geometry that I still had stored somewhere in my brain and headed to Home Depot.

I had an employee cut me several lengths of PVC pipe and purchased some different angled couplings and end caps.  At home I took an old Ikea bookshelf that was getting dusty in the closet, some leftover fabric and bought some plastic shelf liner and hanging baskets from the dollar store and an old office tape calculator that I found at the county surplus store for $5.

I created the market awning frame from the sections of PVC that I painted green and mounted the top of the frame into the wall with cheap curtain rod hooks.  I screwed the end caps directly into the top of the shelf and inserted the pvc pipe into it so it is nice and secure.  I eyeballed a crude pattern for the awning and began to cut and sew and attached the fabric awning over the back part of the frame using some velcro strips I sewed along the back flap of the awning.  Crystal clear? I was afraid it might be.  That's how I create.  No pattern, no instructions, just measure twice, cut once. . . then get a little frustrated and measure a third time and cut again.

I took out the best power tool of all - my glue gun, and after using a dinner plate to trace my scallop onto the plastic shelf lining, I glued it to the hem of the awning.

And voila!







An $18 accessible play market!

Again, it is not catalog worthy, but it is wheelchair kid worthy!  Bridger and Eliza have had hours of imaginary playtime with it - and Bridger's older sisters have been roped into to playing grocery store a time or two as well:)  It is sturdy, high and deep enough to for him to wheel behind in his chair and be one tough market boss.  Warning: his prices are steep and he leaves no room for negotiation!

In the world of Special, I have learned that solutions to problems have to come from within.  Sometimes it is discouraging to think that my attempts at finding answers to help Bridger thrive yield more failures than successes. But the successes I have give me hope, which is fuel to keep trying.

And for the moment, there is happiness all around in these two victories.

Moral of the Story:  You can DIY{A}!


Have a favorite DIY{A} success?  Please share!


June 26, 2017

Castaways



We unanimously agree that our favorite day of the cruise was our day on Disney's island, Castaway Cay.


We came off the ship bright and early for the older three kids to start the day by running the Castaway Cay 5k.






Sadie now recommends not stuffing yourself with bacon from the breakfast buffet prior to racing.   Live and learn.






One little upgrade we decided to splurge on was our own private cabana on Castaway Cay.  Of the handful of cabanas they offer, Disney has one accessible cabana.  We were so excited to secure it.


Worth EVERY penny.  I credit our cabana for making this the best day ever.



We left the crowds and entered a gate leading to a private beach and meandered down a little path to find our welcome,






This little hut away from the crowds of the cruise, with a stocked fridge, cool wet towels, beach toys and an cabana host was to be all ours for the entire day.




We enjoyed the hammocks, the lounge chairs, the music. . . it was sheer bliss!








We love LOVE love Disney's beach because of the beach wheelchairs they provide!  We have a beach wheelchair at home (our favorite piece of equipment EVER) that we enjoy using at beaches close to our home.  But with all the equipment required to vacation anywhere beyond our immediate area, there is not room in the van for the beach wheelchair.  I am so grateful for Disney's beach wheelchair which makes this the only tropical port of call that we can enjoy.

This cabana was also magical to us, not only for the obvious, but because Bridger cannot tolerate the sun very well.  Sun and heat induce seizures for him and beach time for the other children has always been cut short due to their brother's health risk - including on our last cruise.

When Bridger's system is overwhelmed by the sun and heat, he does what we refer to as his "shut down".  Which is literally just that.  It is a protective measure, but in the heat and sun it is his protocol prior to a seizure.  However, when he is pulled out of those elements and shuts down in the cool shade, during that protected time he can reset his body and then awaken to continue for several hours more play time.




His shut down and seizures (both threat of or actual) will make the fun for the rest of us come to a screeching halt and we will have to abort mission and end our day no matter how much of it there was left to enjoy.  But his shut down time in the comfort and protection of the cabana allowed for continued relaxing and fun time for the rest of us.



Shutting down:





Then up again and ready for water time!





The cabana was also delightful for the privacy factor.  Having to keep Bridger out of crowds for the past 10 years has made me a bit crowd-a-phobic as well.

With the cabana came a private beach with a guard standing there to keep everyone off. 

Let's do the side by side comparison:


PUBLIC BEACH:



OUR BEACH:


ahhhh.

We lingered long - tubing, snorkeling and napping, until the last moments before the final boarding call to return to the ship.  







We thoroughly enjoyed our own little Gilligan's Island for the day.

Favorite vacation day ever.  Pure bliss under a palm thatched roof.