September 13, 2016

Let's Talk


Did you know that my blog isn't one-sided?  

While I love to brain dump and share my musings and document my family's special happenings, my blog has many voices.  It is my voice, and yours.

One of the favorite consequences of my blog is the opportunity it has provided me to connect with people all over the world!  I love the messages I receive!  The sorority of Special doesn't discriminate, there is no age minimum or maximum, nor relational limitations.   We find one another through many means, and I am grateful that my blog is one of those tools to connect.  I respond to every message that I receive. And a little silly secret - for my international readers/commenters, I see the country you are writing from and I read your message with that accent in my head.  It makes me smile. 

There are no strangers that I receive messages from.  They may think they are strangers to me and give introduction of themselves as a preface to their message they send.  But we are all friends here in Special.  Some reach out as a parent, as a grandparent, as a teacher, as a neighbor, as a friend of someone special, or even as someone who is just lingering and a bit curious, who is finding inspiration along the way -- because you can't stand on the Special sideline in curiosity very long and withstand the forces of humanity nudging you into this circle. 

My heart grows knowing that the community of Special is so tight and supportive that it can push one out of their comfort zone to reach out to a stranger in a blog.  I keep messages sent to me unpublished and private for that reason.  In Special, we speak and share with protective and vulnerable hearts.

I received one of my favorite messages last week.  It still warms my heart every time I think about it.

It was a unique type of message, one that I don't get very often.

It was a woman asking me how she can be a better friend and supporter to her friend that has a child with special needs.  Her friend does not live locally to her.  I receive messages and questions from all categories of Special people, but rarely from someone wondering how to be a friend through someone's new, unfamiliar and incredibly frightening special journey.  What a selfless and beautiful heart. 

I share, with permission, a part of her message.

I'm also inspired by many of the posts you openly share about your journey with Bridger. I have a close college friend who I reconnected with recently ....get to talking with her and realize that her special needs son. . . has been getting "worse" -- more seizures and therefore more medications, leading to worsening speech, motor skills, etc. I'm at a loss as to how to help, what to do, when to call and connect with her to let her know that I know it's tough (and somehow don't know at all at the same time) but truly want her to know that I would do anything I could to support her as she (like you) simply acts as the best mom to [him] she can possibly be. Any thoughts you have on what you are sometimes looking for from others, especially close personal friends, when the going gets tough is greatly appreciated....I'm feeling so helpless to help in any meaningful way 😞



For the benefit of others out there with a special friend in their social circles, I include a portion of my response to her. . .

She is one lucky friend to have you! Your friendship will be so important to her whether you feel it is or not. . . .
As far as specific ways to help: 
1) Your friend is/or will be in a very isolated place. Special moms universally say that they just feel so alone. Cheery texts of support or compliments are always wonderful to receive. Likely, when you send those texts, she will be reading it during the middle of one of her hardest days. After the acute diagnosis, the rallying crowds die down and your friend will be the only person patting herself on the back after a hard day. Another person championing her on will be such a welcome wind of support to her.  
2) Calls may be hard to receive, because there really is not a good time to ever catch a minute to talk on the phone, but a card in the mail – even one with a little gift card to Starbucks for a cup of coffee will feel like the biggest gift in the world to her.  
3) Let her talk about her son. I have to guard myself in social conversations not to mention Bridger’s name too often. His care has become my life, and subsequently dominates my talk and I have to guard myself to limit what I say so people’s ears don’t wilt off. But yet, in keeping silent there is so much about my life that I can’t share. Ask her about her son, and just listen, and listen and listen and don’t try to compare it to a similar situation with your kids.  
4) Make her laugh. Talk about old college days or something that reminds her of what is in the core of her. She likely is losing herself in caring for her son and it is refreshing to have an old friend remind us of who they know we are.  
5) Don’t be worried or think your efforts aren’t helping just because you don’t get the response that you think. If I was throwing someone who was drowning a life preserver, I wouldn’t think my effort was wasted because I didn’t hear them say, “Thank you.” Just know you are helping and keep doing it. I have to decline invites so often and I can’t respond to texts – but I always hope that people don’t strike me off their list because I declined for the 7th time or haven’t gotten back to responding to their text. Your friend is there, just remember that she is drowning, but she is grateful for the life preserver. 
You are so kind to want to reach out to her. Thank you for reaching out to me, feel free to do so anytime!
What an amazing and brave friend to reach out into a social sphere of uncomfortable, awkward and unknowns to support her friend!  She has since shared with me that she passed this along to two other friends who have now formed a "team" to support their friend.

With all of the nastiness and improper use of social media - I loved this message last week that showed me there is still so much good that can come from it.

For the friends of someone Special that are reading this, my hat's off to you!  Some of us are on this journey by default, but your presence here is one of choice and that is very admirable.

Every mother caring for a child with special needs requires two things - thick skin and a good friend. . . and maybe a big chocolate chip cookie every once in a while.  Ok, so that is 3 things. 

So Let's Talk!  Have any questions for Special here or for anyone else in your circle of influence somewhere?  Don't be hesitant to ask them. We steer clear of critics, but of friends with comments of support and love - we hold you in the same esteem as angels.

Thank you to all of the Special friend warriors out there, especially to "M" from last week!  This post is honoring YOU!



September 08, 2016

It's the Little Things




It's the little things in life.

Like having a cup holder

that attaches to your wheelchair

in a place that you can reach it

to get a drink whenever you want one.

It's those little things

that make his day

and get two thumbs up.



September 06, 2016

Second Honeymoon


A highlight of the early summer was Alan and I enjoying a vacation together.

We took an anniversary trip back to where it all began, Cancun, Mexico.

As poor little newlyweds, with Alan in law school and me working 60 hour weeks being the sugar momma to support us and get him through law school, our honeymoon felt extravagant to us.

When I look at that picture from back then I see carefree, naive and two kids full of hope.



To celebrate our 18 year anniversary we took our not-so simple lifestyle back to where it all began.  A wonderful friend took care of the homefront so we could escape without the small army and 400 worries that would normally accompany any attempt to get away.



When I look at that picture snapped as we took off, I see tired, weighted and anything but naive people - that still have lots of hope. The main difference I see between those pictures is our eyes.  Our eyes have so much more to say to me in the latter picture, because our eyes have seen and know so much more.  And for that reason, it is my favorite of the two.

This trip came with a different energy level than our first.  We laid under our cabana from sun up to sun down reading and dozing.  We lounged in the infinity pool and reflected on the unexpected twists and turns of the past 18 years and how we wouldn't have wished our lives to have gone in any direction but the one that they have.


Apparently I thought my daily dose of guac and chips was important enough to capture in a photo

We laughed at memories of our the first honeymoon - how we scrimped and pinched our pennies by only eating 1 or 2 meals a day and sharing only one meal between us each time we ate.  This time we ate guacamole at every meal, ordered whatever snacks we wanted to our umbrella and finished our afternoons with a cup of delicious gelato from the gift shop - which we shared, by choice.  I enjoyed a couple hours in the spa every day and had every muscle knot from lifting a heavy wheelchair and a heavier boy worked out.  I learned how to say all of the key massage and facial language in Spanish.

Alan laid under the umbrella and read Wright's Law - a nice page turner about Special Education law in preparation for part deux of our ugly IEP pending upon our return -- because Special parents really don't ever get to truly relax.



In a life that has special making demands of your mind, body and time 24/7, it was nice to be off the special clock.  Enjoy the moment, together, and celebrate - which included some anniversary fireworks on top of our dessert at dinner.  I am pretty sure that would be completely illegal in the US.



Compared to those two naive young kids 18 years ago, we look tired and worn out.  But we have, together, accumulated more love and understanding than we ever could have imagined.  I am so grateful that we are in this journey together.  We are taking the twists and turns one step at a time - sometimes Alan and I have to jump into unknowns with both feet, and other times we are taking baby steps.  But for a few days, it felt great to give our feet a little rest from stepping.





























Cheers to 18, Alan!

September 03, 2016

Tea for Three



More like tea for six -- if you count all of the stuffed guests.

Ty is a service dog to Bridger.  He greets him off the bus every afternoon, he takes off his stinky socks, he picks up what he drops and brings the object back to his lap, he serves as the easel for his ipad, he opens doors and closes drawers. . . 

and he attends Bridger's tea parties.

Very serious work indeed.

He is a very polite guest.  He patiently waits for everyone to be served and only eats his plate of fingers sandwiches and crumpets Cheerios upon Bridger's command.





Now if he would only learn to stick his pinky finger up as he laps his water up from his cup.  Sheesh. His manners! Was he raised in a barn?



September 02, 2016

A Tale to Tell




My Friend has Special Needs, a book written by author of the Beamer Book series, Cindy Chambers, finally came out of publishing this spring. The Beamer books introduce difficult topics to children in a way they can understand.

This one is a story about us.  

It is a story about our life with a side of special.

The author met with our family and interviewed us several times over the course of a year and a half.  She caught our family in many highs, and she saw us in many lows.  I had no idea how this finished story was going to read and what thoughts we shared with her would stand out to her as the story formed in her mind.

She also highlighted Jill's House in her book, a not-for-profit respite lodge here in Virginia serving families with children with special needs.  It is Bridger's favorite place away from home and one of the most important gifts to us as we manage and attempt to thrive in our special life.  Proceeds from her book benefit Jill's House.

What makes this book so important to me is seeing the impact it had on my children.  They loved answering the questions the author asked about their life.  They loved having themselves drawn into illustrations and placed as characters in a story about their life, citing actual events and occurrences.  But also knowing that their life was so wonderful and special, that it was worthy to write a book about, boosted their confidence in their own special journey.

Especially boosted was Eva's confidence.  Eva is our little poet that, for years, has laid in her bed before she falls asleep and writes poems.  A poem she wrote a few years ago about Bridger was put as the introduction page in the book.  With the printing of the book, she became a published author.

The Tell Me Town Foundation that creates the Beamer books had an awards ceremony and our family was honored.  We received the Special Needs Education Award.



And sweet and shy little Eva received the Tell Me Town Poetry Award.  Eva has since been asked to write another poem for a Beamer book that came out of publishing in June.


We ended the evening with a celebration with the author, the Jill's House family and all of the doctors, educators,  notable guests and many other amazing people that were included in the writing of the book.  We are so grateful for the opportunity we had to share a little piece of us in the book to help others, children and adults alike, know how to help and respect people with special needs and their families.


It is a sweet little piece of our tale to tell.

Order your copy here:





September 01, 2016

Recovery



After starting off the summer with the other children thoroughly traumatized by Bridger's behavioral. . . um, er. . .what shall I call them. . .episodes (lacking the word to properly label that month of our life of physical, mental and emotional strain), we all needed a little recovery period.  Lance had been off at camps during most of the first month, so it was the girls that needed their PTSD addressed.

I took the three girls away for a long weekend at the cabin, exploring the area south of it and doing the things that the boys don't particularly care to do.  It started with a visit to a sweet little cupcake shop we found that made our mouths water something fierce, followed by taking them to a salon for a fresh 'do for the summer, and we may or may not have gone back to the cupcake shop again after the salon. . . what happens at the cabin, stays at the cabin.


On the way back to the cabin from our romps around town we stopped for dinner.  I wanted to check a box off their bucket list and have them eat at a Waffle House.  A once (and ONLY once) in a lifetime experience everyone must have.  The thrills at Waffle House begin with the stickiest menu you will ever touch.


After watching the cook handle all of the raw meats with her hands then immediately handle our food over and over again, I winced my way through a few bites and tried to whisper to the girls to not eat any more off their plates while the cheery waitress was gabbing with us at the barstools and told me to stop rushing them through their food.  I was pretty sure we all were going to be sick, in fact, I am throwing up a little in my mouth just recalling this all-American dining adventure.

After venturing about, we settled in back at the cabin with the necessities for a homestyle spa pedicure.  We spent the evening sugar scrubbing, massaging and painting each other's toes.  My "emoji toes" were courtesy of resident pedicurist, Sadie.




I tried my best to make watermelon toes on Sadie.  I won't quit my day job any time soon.



After the painting and polishing was finished, we all snuggled with a good book on the porch as the sun went down and buried ourselves in our books until we could no longer see the words on the pages.




We spent three days like that, with some yummy cabin culinary creations sandwiched between our lazy mornings and afternoons of reading, games, and berry picking at our wild blackberry and wineberry patches.




Lazy, quiet, peaceful, and luxuriously simple.  Such a contrast to the month we had all just endured and the proper way to kick off the beginning of summer.


After a couple days we were ready to go home and face the next round of behavioral challenges. Recovery accomplished.  

However, Eliza just came home from school the second day with this. . .



Apparently, she is still suffering from the trauma of this summer.  It looks like Bridger's behavioral challenges are making her 'wilt'.  

Perhaps she may need a little more recovery time.


July 13, 2016

But then. . .


But then, after the tantrums dissolve, the scratches heal, the headache subsides, the muscles regain strength, the vomit is cleaned up, the scream-induced ringing in the ear fades. . .

after all of that, there is this...


This beautiful face and those eyes that plead to my soul.

"Help me," they say to me when I look at him.

But when I look even closer, they actually are saying, "Help me to help you."

Bridger is the one providing the help to me.

This face is helping me to learn humanity, to learn humility, to learn resilience, to learn refinement, to learn patience, to learn beauty, to learn wisdom, to learn perspective.

And that makes all of the things I spoke of in my last post worth it.

The things I last spoke of are all hard.  But hard doesn't mean bad.  Hard is just hard.

And we can do hard things.

The greatest challenge in all of this is Bridger's to bear, not mine.  And if he can do so with such courage, then so can I.

July 02, 2016

Invisible




Sometimes, there is a lag between blog posts because I am consumed.

Some may see me consumed by the obvious physical needs of Bridger - all of the visible needs.

But most of the time, I am consumed by the invisible.

Bridger has his obvious disabilities -   They are the obvious ones you can see by the sight of his wheelchair, by his spindly legs or stout curving spine.  The ones you see by looking at his eyes, or at his g-tube on his stomach or by the extra puff in his pants from an oversized diaper.  They are the ones you hear when he tries to speak or answer a question you ask.  

Bridger has his invisible disabilities, the ones that involve behavior and sensory integration.

And right now, the invisible is swallowing me whole.

It is swallowing our entire family whole. 

I am spending more hours at more doctor appointments and adjusting/changing meds - which only complicates the behavioral battle.

If you look at Lance's arms today, you will see deep scratches down both of his arms caused by Bridger, that yesterday had oozed blood when Lance was trying to get Bridger to move towards his room from the tv. 

If you look at Alan's ear today you will see fresh scabs by the gouges that Bridger took out of Alan's ear today when he tried to get Bridger dressed.

If you look at me walking you will see me hunched over and if I turn to the left without premeditated thought you will hear me gasp and drop several inches towards the ground in pain from throwing out my back so many times the past couple months trying to move Bridger's 85 pound thrashing body to a safe place for him to continue his full body tantrum/meltdown.

If you look at Eva's arm today you will see similar scratches to Lance's when she tried to coerce him to come to the kitchen for dinner.

If you ask Eliza about her head today you will hear her explain how Bridger unexpectedly chucked something at her in anger when she was just trying to play the ipad with him.

If you ask any of us today, we will tell you that we are tired.  We are so very tired of the invisible things.  Not that we want them to be seen - but we feel we need to wear a sign requesting a pass or a pardon from keeping up with the ordinary.  After experiencing the constancy of the challenge of the invisible, it is difficult to keep our social smiles on, to get our other children to their various commitments on time with their can good donations and other assignments.  It is difficult to always answer emails or even care about the trivial details of happenings or even carry on a conversation some times.  It is difficult to answer "fine" to the wasted question of "how are you?" when no one really is ready for their ears to hear the real answer.

The invisible in Life with a Side of Special also becomes the secretive.  Special families hesitate to share all that is awful about behavioral disabilities because they don't want to paint an ugly picture of their beautiful child.  It is hard enough to get people to engage with and desire to approach our child, that I find myself only sharing what is charming and lovely about him to keep what limited positive perception there is about him at the front of what people see.  I have already pushed his wheelchair through a gaggle of children yelling, "ahhh, MONSTER!" as they run away.  I don't want to share with anyone that he actually acts like it sometimes too.

Life with a Side of Special can be sweet, grueling, blessed, impossible, refining, exhausting, elevating. . . 

. . .and it can be, torturous.  

Invisibly torturous.

Not to worry, as soon as he is done attempting to kick out the car window here as we are going to the grocery store, he will be simply darling by the time we walk in.  But just to be safe, I am turning around to drive back home and order pizza for dinner.




June 03, 2016

Have His Cake and Eat it too


Bridger's first birthday.

Spent in the hospital, getting a gastrointestinal tube (g-tube) placed in his stomach, which process begins with a nasal gastrointestinal tube (ng tube) placed for a couple weeks.  His "birthday cake" was some vanilla formula through the schnauzer enjoyed in a laundry basket I had brought from home and strapped him to with a Leckey vest to hold his body upright, since he could not yet sit, with the blankets holding up his head so he could enjoy a makeshift hospital ball pit.  Watch out, we know how party.




Bridger's third birthday.

Still 100% g-tube fed. We had been working with the feeding therapist for 9 months with the goal that Bridger would eat birthday cake on his birthday.  No frosting, no colors.  Just letting a crumb of plain yellow cake touch his tongue.

I can still feel the excitement bursting inside me in this picture taken on his birthday, when he finally tasted that celebratory crumb.  





Fast forward to a couple months ago.

Bridger's 9th birthday.  Still has the g-tube. Still will sometimes let a crumb of yellow cake touch his tongue.  And sometimes, he surprises us.  Like when I went to get the birthday candles and turned around to catch this.  His birthday excitement overpowered his sensory limitations.  This cake was supposed to be just a prop -- a cake for the rest of us just so he could have his candles that he likes to blow out, then cry when they are out, then relit, then blow, then cry, then relit . . . repeated 10 times.  {And, while we are talking about birthday routines, don't you dare try to sing happy birthday -- that will launch him into uncontrollable screaming and crying, no matter who's birthday. No singing here.  None.  Never.}  He had some plain vanilla ice cream ready in the wings for him - that he may eat . . . or may not.

Seeing this, our jaws dropped in astonishment and we laughed as we just let him go to town. 



By all means, he can have his cake and eat it too.


June 02, 2016

Her


Her.



Not the first child.

Not the last.

Not the first daughter.

Not the last.

Stuck in the middle.

Go with the flow.  Roll with the punches.  Walk in the shadows.  Deal and move on.

That is my Sadie.

I have always called her "Joy in a Can".  There were no other words to describe her.

She had just turned 2 years old when her special brother was born.  Her sweet toddler life came to a screeching halt.

For a good chunk of her third year of life she was without a mom.  I was in the hospital for weeks and months at a time.  She was tucked in over phone calls and given kisses through the receiver.

Her preschool experience was forfeited to hours upon hours of doctor appointments as we went through the painful "diagnosis year" for her baby brother, searching for answers, discovering symptoms, documenting baselines, which continued into hundreds of monthly hours of therapy appointments that she sat dutifully by my side, watching her brother "play" with balls and puzzles, stamps and toys.  She was watching, always steadily watching.

She was my sidekick.  It was her and I enduring the daily struggles in Special.

Beautiful qualities are still emerging from her developmental years that came with a Side of Special.

One very strong quality I learned she possessed a few years ago.  I had flown out of town to attend a wedding - it was to be my first ever getaway from my children.  While the kids were at the cabin with their dad, Bridger had a terrible wheelchair accident.  Alan threw everyone in the Suburban and immediately went down the mountain to the nearest hospital.  Because of the severity of the concussion, Bridger was going in and out of consciousness.  Because of the fall, he was also bleeding heavily from his mouth.  Lance's job was to keep him awake and to wipe the blood.  Lance, who was 8 at the time, kept saying, "Come on Bridger, you can make it," as he wiped the blood from his mouth.  He reported to me that he thought Bridger was dying, and he was keeping him alive.  

Eva was in the back seat, hysterically sobbing with worry, distraught over her brother.  

Sadie was sitting silently next to her the entire ride to the hospital.

"You're not crying, you don't care about Bridger!" Eva accused Sadie, sobbing through her words.

On my phone call with my little 5 year old Sadie as I was waiting for the red eye flight to return home and head to the hospital, Sadie explained to me as her voice slightly cracked,

"I do care about Bridger, mama.  I was just trying to show you how strong I am."

With those brave words spoken, she began to sob.

As did I.

I learned the most important quality about my middle child that day.

Stoicism.

Sadie is fiercely stoic.  She is rock steady.  She will take a hit, and hold it in.  She will observe and study, be wronged and offended, and go forward -- not letting it build up for a later explosion, but tempering it.

That quality is such a wonderful part of her, and a blessing to me.

But it is something I have to consider with great caution.

In our life with a Side of Special, she will take a hit.  She will have to take many hits.  She will observe much, and likely only be an observer too often.  I cannot take her stoicism for granted.

I need to look out for her.

My favorite way to keep tabs of those needs with my children is through a little one on one time.

Alan had some business to do in NYC a few weeks ago, so I decided to take my trusty stoic sidekick and crash his business trip.

She and I decided to try out one of the $20 express bus services to NY.  {insert reminder to myself to never do that again}



I catered the trip especially to her taste, which started with a taste of the Cake Boss at Carlos Bakery. We loaded a bag full of goodies to take back to the hotel for the night where we would reunite with Alan.



After we checked into the hotel in Times Square and took a brief snooze to recover from our bus lag, we headed over to my favorite Manhattan lunch eats at Sarabeth's next to Central Park.  A bowl of Sarabeth's tomato soup should be on everyone's bucket list.

Sadie is a foodie.  She has the palate of a well traveled grownup, not an 11 year old girl and it makes her a fun traveling companion.



After strolling the streets, we headed over to Dylan's Candy Bar where she chose to pick out treats for her siblings.  They converted their third floor to a cafe, so we decided to check it out.  With some time to kill and no dessert in our stomachs yet, we indulged in some sugary delights of her choosing.  A Pop Rocks sparkling punch sipped through a candy stick straw with a Pop Rock rim and a sour fruit roll garnish - um. . . yum??  One sip and my eyeballs popped out.  Four sips and she was done.  We lingered there, people watching through the glass wall by our table and enjoyed each other's company.  Sadie is my daughter, by also my dearest friend.  I enjoy her immensely.  




We went back to the hotel, freshened up and headed to Broadway to see Matilda.



Adorable, funny, amazing.  Sadie was captivated.

The next day was our touring day.  I indulged her deepest dream to one day own a selfie stick. We saw all of the sites, walked to Amy's Breads for our lunch, shopped some more and hit Broadway again, this time, for Wicked.  Ohhhhh, how we loved it!  Pretty sure we were the last people to see it.  It was worth the wait!





She had a taste of NYC nightlife.  Decided 5 minutes was enough for her and we went back to crash at the hotel and tell her dad all about her adventures of the day.

The next morning, I let her enjoy a first for her -- room service.  Reason #283 to love Sadie, she loves to take the morning slow and leisure about and watch HGTV.  She knows every episode of Fixer Upper.  



After we lounged about, it was time to pack up.  We headed to the M&M store for some souvenirs, strolled Times Square and walked over to Alan's building to meet him for lunch. A couple quick slices of NY pizza later and we were back on the bus towards home.

A little time alone with Sadie and her stoicism can melt.  You get to her vulnerable, her feelings, her heart.  You can get her to her safe place where she can open up and allow what needs to come out to be flushed to the surface, and help her process the unique challenges of her life and let her keep all of the joys close to her heart.

Stoically stuck in the middle, but never to be overlooked.

Her.

I love her.

My sweet Sadie.