December 31, 2015

'Tis the Season

It is the season of sickness, of compromised systems, of worry.

It is the season of vomit, of missing day upon day of school, of frequent doctor visits.

It is the season of fevers, of sleepless nights and hospitalizations.

Having a child that is medically fragile makes for a life of unending stress, worry and exhaust, particularly during the winter months.

In the early years of Bridger's life we spent months in the hospital.  In subsequent years it reduced itself to weeks, and last year we celebrated with the year's tally of only a few days admitted.  With age has come a bit more robustness with him.  It has also come with more involved home protocols to avoid hospitalizations - which ultimately makes life much more exhausting than a hospitalization with round the clock g-tube fluids, meds and such.  Our docs know that we have to avoid the hospital with Bridger because of his immunosupressed system - he is byphasic and always contracts something secondary in the hospital that extends our stay.

We had one of those sick spans from Halloween through mid-November.  My home protocol just wasn't cutting it so the pediatrician finally sent us in and Bridger was admitted.  The attending doctors are always somewhat surprised at how calm I am when I rehearse his history and what has been going on for the past weeks with his health. Frankly, it is just routine life as we know it now, and by the time I get to the hospital there is a sense of relief that I am not fighting this on my own with him any longer.  

I also have learned by now how to make a hospital stay as close to resort-like as possible.  I know just the tricks up the sleeves of the Child Life Specialists that will make Bridger a wee-bit more content. I pack my earplugs and eye mask and bring my own pillow to sleep with - so I actually do get some sleep, and I park his iv pole right next to my bed and know how to operate all the controls so there are no beeps and alarms that otherwise would continually go off during the night.  

It is nearly a vacation. 

Sorely kidding. I am just telling myself that to convince myself it is more fun than it is.

I have written about the power of the mask previously. I emphasize again how every parent needs a stash of these to get through vomit cleanups.  We go through them like candy here.

We had ourselves a brief 5 days stay with only 1 really big scare from Bridger while we were there.

He cracks me up when he is in the hospital -- wrapping every nurse around his finger. Every nurse that entered was asked the same 3 questions by Bridger every time:

What is your name? 

Where is your house?

Do you have any sausage?

The boy is obsessed with sausage -- such an obsession it is deserving of its own blog post another day.

He had not eaten orally for 3 weeks, so when he was seeming to feel better I would gently present to him some dry cereal or a cracker -- to which he would immediately begin retching.  His sensory system knows when he is well, sick, or coming down with something and responds accordingly.

He also had his share of drama which I was quick to catch some of on video.  When his iv blew I thought his performance was worthy of an Oscar.  The exaggerated back of the hand over the forehead was a move straight out of Scarlett O'Hara's book!  "I'm fainting!"  Seriously, what is the kid watching on tv?

The final day when I presented him a breakfast tray and he gasps and shouted in delight, I knew he was back to himself.  He inhaled the bacon and french toast sticks and I nearly started undoing the iv myself to bust us out of that joint.

He's a tough cookie and has endured more pricks and pokes, uncomfortable testing and physical pain in his 8 years than most people do in a lifetime.  Seeing him well again is a beautiful thing.

Wishing it would be the last of it.  Although I know full well it won't be.

'Tis the season.

December 30, 2015

A Modern Stone Age Family

A holiday or two behind.  Still catching up on the past months.  And I need to confess, 

I'm not keen,

on Halloween.

I asked my husband a couple years ago if we could just skip it -- perhaps we could go away for that weekend.

He shuddered and looked at me in shame.

He is keen,

on Halloween.

It is one of his favorite holidays.

I think that is because moms bear 99% of the weight of work for the holiday and husbands just get to show up and eat the Snickers out of the candy bags.

So, for his sake, for their sake, I try.

Some years I try harder than others.  Remember the year I met the Halloween Fairy?

This year I tried to put a little more heart into it.

And, the kids loved it. . . and I may have to admit, I did too.

I mean, how can you not love THIS???

Missing from the picture is Dino (aka Bridger's service dog, Ty) -- who wasn't keen on this Halloween either (or at least didn't care for his Dino head I tried to make him wear).

I had seen a way to make fake logs on the internet -- so I took that and improvised with my own frugal ways and asked the hardware store for the thick empty cardboard carpet roll that was about to be discarded and l took a cardboard fabric roll from the craft store trash and I sprayed them with insulation spray foam.  I sliced across the top of the foam with a serrated knife and then spottily spray painted them two different shades of brown. I bought a concrete form, cut it in half and spray painted it and added some cardboard cutouts from Bridger's monthly diaper supply boxes, framed the whole thing together with a hidden frame I made from pvc pipe and cut out the top from from white fabric scrap I had and added the rope.  I think it came pretty close to the real thing!

I have to admit -- this was one of my favorite Halloweens.  We didn't go door-to-door.  Wanna know why?? Because going door-to-door is AWFUL when you have a wheelchair. Navigating front walkway to driveway to front walkway to driveway makes it very hard to keep up with the kid's group that is running across lawns to the next door.  Then, you can't even get to the front door because of the steps prevent you from getting within 6 feet of it and no one wants to step out of their door threshold to give candy out and they usually can't see him anyway because of the cluster of kids clogging the doorway eagerly surrounding the candy bowl so he just sits there and stares at the fun he is not a part of.  Just not my kind of fun.  

We tried to join the neighbors at their annual pre-Halloween chili cook-off.  Bridger and I parallel parked his chair alongside the path to the patio - the only accessible place for us to be, until he started projectile vomiting within 90 seconds of arriving. I was trying to catch it all steady on a flimsy paper plate and trying to reverse the whole mobile get-up with my other hand back down the path and make a quick exit while he continued to retch as others were trying to come up the path and slightly hesitate over their mixed emotions of what the unknown proper etiquette might be in such a situation until they eventually decide to say their polite greetings to me as we passed and avoid eye contact will the spillage on my paper plate.  Yup, we sure know how to make an entrance. . . and an exit.

I also learned that Lance could have been a voice-over for Barney Rubble.  He had us all laughing with his "Hiya Fred"!

Our town celebrates Halloween in the most charming of ways with a quaint parade.  A few thousand adults and children line the historic streets as high school bands, floats from local businesses and political candidates march down the main street and throw candy out to the people along the old brick sidewalks. We have never been because parade=crowds=not a possibility for Bridger, but when we were asked to join a candidate for a local election alongside his parade "float" and hand out candy with his entourage, we thought we might be able to experience a fun Halloween alternative.

My kids felt like celebrities as we heard people yelling greetings to the Flintstones as we passed by.  They loved passing out candy to all of the cute children on the street holding their bags out to them.  Soon into our parade route, however, Bridger and I fell behind as the Fred Flintstone mobile travels at a slightly slower rate than the parade car we were walking behind.  The float behind us was some distance away, so Bridger . . .er, I mean, Fred, became his own lone parade float for a while.  

I heard people clapping for what was before us, and I heard people clapping for what was behind us, but what I heard while Bridger was rolling by made me lose it and my eyes started watering.  {Sheesh, crying at a parade?! I am a lush.}  Absolute roars of applause.  Sincere and genuine.  Standing ovations, people yelling to him that he was the highlight of the whole parade.  He had candy that he would roll over and give to children as adults said the most wonderfully kind things to him and I.  A friend in our parade party came back to jog with Bridger to catch us up and I captured of snippet of the cheers on video. . .

Bridger was a star and he knew it.  He felt joy and was glowing.  He still talks about it to this day.

I was so grateful to each of those parade-goers that made him feel on top of the world for a brief moment that evening.  It made my heart swell with love for my town and the kind people in it.

Maybe my heart might just be changing towards this thing called Halloween.

Let me eat a Kit Kat. . . or seven. . . and think about it.

December 29, 2015

Mount Up with Wings of Eagles

For those that may not know, Lance loves his brother.  A lot.  He is his best friend, his pride, his purpose and his passion.

When we began talking to Lance about what population he might want to serve for his Boy Scout Eagle project, I did not want to pressure or lead him in any way to do a project for "special needs".  I asked him if he wanted to help the homeless population? parks or schools?? the environment???  He looked at me and simply said, "Mom", to silence my train of thought. He said it with the absolute tone of, "Duh."

"I want to help children with special needs, of course!"

That is where his heart is and I love him all the more for it.

He thought about his project for a couple months and it was when were were donating some of Bridger's old equipment this summer that he had an idea.  He wanted to do a pediatric adaptive equipment drive and collect the equipment, clean it and deliver it to an organization that serves children with special needs in Southern Virginia.

The Eagle took flight.

He created flyers, emails, networked, met with distributors, visited hospitals and schools and logged hundred of miles driving all over the Washington DC area over the course of 8 weeks collecting equipment.  He and I had a great time doing his equipment pickups, jamming out in our mega accessible family van - turned delivery truck.

He lifted and sorted, hauled and even did a test drive. . . just a quality assurance check, of course:)

We especially enjoyed when our deliveries took us in the Alexandria area. . . (ie Krispy Kreme)

He ended up collecting over 70 pieces of equipment!  Most range in value from $5000 - $9000.

For the second part of his Eagle project he organized volunteers for a cleaning day. These chairs and such have been used for daily living. I cannot tell you how gross Bridger's chair can get after just a few weeks.  Cleaning all of the hidden cracks and crevices and under cushions is enough to make you lose your appetite or take the skin off your hands to scrub off.  Likely both.

He had a team of 50 volunteers in stations cleaning, steaming, sanitizing, inspecting and rinsing.  He even had a professional adaptive equipment repairman on site from Rehab Equipment Professionals that would inspect parts and pieces and make repairs onsite to make the equipment as good as new.

The third part of his Eagle project was delivering three cars full with three attached trailers full of equipment down to Children's Assistive Technology Service in Southern Virginia that matches children with special needs with the appropriate adaptive equipment who might not otherwise be able to afford it.

Area therapists met him at the delivery site with "wish lists" for their clients and took equipment right off the trailers.  The other items were tagged for their database and will be loaned upon request to families in need.  This little adaptive bike that was collected by Lance and given a hour long scrubbing by a mother and daughter volunteer duo was immediately snatched up by a therapist to be placed under the Christmas tree with a big red bow for a little girl with special needs.

Lance received a wonderful article from the newspaper down there about his service which also brought a lot of attention to this wonderful organization.

Watching Lance grow in his role as Bridger's brother has taught me so much about selflessness, devotion, patience and unconditional love.

He is, as the prophet Isaiah promised, being mounted up with eagle wings.

Isaiah 40:31 
But they that wait upon the Lord shall renew their strength; 
they shall mount up with wings as eagles; 
they shall run, and not be weary; and they shall walk, and not faint.

December 28, 2015

Happy Fall Y'all

I decorated my mantle for autumn.  I blinked. Then fall was over.

It's all a blur now, as posts to come will explain.  Even though we had a lusciously long fall, the beautiful falls of Virginia could last for twice as long and it would still not be long enough.

We kicked off the first week of fall leaving our soggy home and ventured to the high ground at our cabin to ride out the last bands of hurricane rain at our cabin.  Being the first weekend of October meant it was time for our annual Sudnuts and Spider party to celebrate the beginning of our favorite season!  Really, it is our Spudnuts and Cider party but when you say it without thinking, 7 times out of 10 it will come out as sudnuts and spider -- so the name sticks.

Bridger was celebrating the weekend at his favorite place, Jill's House respite lodge, so we partied without him -- but was wishing he was with us. . . except when we got to sleep in on Saturday morning -- we weren't missing his 0-dark:thirty rooster call then.  It is hard to celebrate fun family time when our family is incomplete.  But we also know that the fun family time often just turns into "family time" and not-so-fun when he is with us.  It is one of the stinging realities of being a Special Needs family - that in order to fully enjoy an activity, we can only be a partial family; and in order to be together as a complete family - that the enjoyment or happiness we seek in an activity or vacation will be severely limited.

Sadie brought her bestie with her and the 7 of us rolled, punched, glazed, snarfed and chugged our way through the spudnuts and cider.  

Eliza enjoyed her favorite spot and watching the deer over the porch railing.  Alan was giddy seeing so many deer with the Annual Larson Menfolk Deer Hunt commencing just weeks after.  Just like always, thought, those deer were there to taunt him as all men left the hunt with an empty cooler to take home.

The remainder of my fall memories were of afternoons spent on the field of Eliza's first (and possibly last) softball season.  Bless her heart, she was the littlest small fry out there and could hardly hold the bat.  The first time she hit and all of the coaches were frantically yelling at her to run she just took off like Forest Gump straight into the middle of field towards the pitcher's mound.  I have pretty much given up on the hope that my softball gene was passed down to someone.

After the softball dirt came some greener pastures of Sadie's field hockey turf.  She loves that sport with a passion and was so excited to be chosen for the All-Stars team.

While Sadie was whacking with her stick, Lance was pounding the pavement.  He discovered a love of running (definitely not a gene neither I nor his father passed down to him) and takes off on 5 mile runs.  He added an extra challenge to his runs by pushing his brother in his special jogging stroller.  Bridger's 80 pound body plus the 30 pound chair adds a significant drag to a runner's wind and is a feat to be commended.  I was sitting on the front porch when Lance ran back up the front walk in complete exasperation and left his brother in the jogging stroller at my feet and declared he was DONE.  It turns out Bridger, in his initial excitement to be on the runs with Lance, would throw his body back and forth and sway with all his might, laughing hysterically at making his chair nearly tip over.  All the while Lance was running, pushing and strong-arming the handle bar with all his might to keep the chair from tipping for the several miles he ran.  That would have pushed me over the edge in 10 seconds, but the ever-patient Lance held on for 3 miles enduring that with warnings to his brother to hold still using what breath he had left.  We problem solved by taking some fleece fabric scraps and tying Bridger's excited body to the chair and Lance was off and running with him again the next day.

I celebrated the new stage of life that I waited 14 years for of all of my children in school full-time by up'ing my tennis court time to 4 days a week.  Tennis is my outlet.  Love it and the ladies I play with.

I love fall.  It makes me happy.  It makes my family happy.  It is what Virginia does best.

Happy Fall Y'all.

December 27, 2015

Brace Face

Now you see them. . .

Now you don't.

3 stages of children's orthodontia complete.

5 stages to go.

This is killing my spa fund.