February 28, 2015

I Forgot

I forgot how much I love the library.

I, quite by accident, have raised a house full of bookworms.

I love that.

Because I love it so much, books have been the center of our Valentine's celebration for the past 13 years.  Every Valentine's morning the kids excitedly rush down to find a new book for them and a little box of chocolates at their place setting on our breakfast table.

Unfortunately, my love affair with our local library ended a little over a year ago.

I was there one afternoon with my children - my older kids were leisurely browsing the shelves to find their next read, Eliza was plopped on the floor buried in a pile of picture books and Bridger was sitting in his wheelchair playing at one of the children's computers lined up in a row. He was very excited and was making his special sounds every now and then.  A group of boys, about 8 or 9 years old, were by themselves huddled together around a nearby computer and were obviously annoyed with Bridger's foreign sounds.  After one such sound, one of the boys yelled, "What the FREAK, shut UP!!"

wow.  ouch.

I know that many kids don't know better, because they haven't had exposure to Special, so I gently knelt down and said to them in my sugar voice, "Oh boys, let's not tell him to shut up.  His name is Bridger, and he has some special needs, and because of that, he also makes some special sounds as he sits here and plays by you."

"Oh," the boys said.  They then understood what had been strange to them before, and I was proud of myself for what I thought was sweetly handling the situation - teaching and gently protecting in what I thought was a perfectly appropriate way and would have done so, without hesitation, in front of their mothers if they had been there.  

Until. . . an unrelated woman sitting on the couch behind me shouted, "Are those YOUR children?"

Shocked, partly at her and partly at her volume, I said, "Uh, no."

"Then you have no right to be talking to them!"

"Well," I slowly started to respond, still stunned, "When someone refers to my son as a freak and tells him to shut up, I absolutely am going to respond."

She proceeded to tell me, in her same very loud volume, that those boys are exactly right to feel that way and that she too thought that his sounds and behaviors were VERY disturbing and made her feel very uncomfortable . . .  and she continued on for a bit but I stopped hearing.

I was speechless and nearly shaking.  Her rant was also being said in front of my other four children, who had lined up next to me as she began her commotion.

I couldn't think of anything to say, but to ask her if she had never seen a child with special needs before?

She had an answer to that, although I didn't stay to listen.  I turned on my heel and wheeled Bridger out of the library with all my other children following behind who were equally disturbed at this women's words to us about their brother.

I went the car, loaded him and his chair and the other children in, started the car and turned on the movie for the kids and just sat in the parking lot and cried.  It was a good hard cry and I did not feel better when it was done.

Sadly, there are people in this world like that who still exist - people who say the most unfathomably rude, insensitive and hurtful things to and about people with special needs.  I was embarrassed that those things were being said to me, about my child, in front of my child, in front of my other children, in front of those boys who needed to learn, in front of an entire library full of patrons who heard every word of our encounter - or at least hers.  I was proud that the few words I spoke to her never rose above a library whisper - because if I saw her again I am not sure I could restrain my volume now that I have had time to process the experience.

I have never returned to our local library after that incident of over a year ago.  I would hit up a nearby library every now and then, but I couldn't go back to that one.  It might not make sense to anyone else, but the thought of going back there would trigger all the anxiety, sadness and hurt that I keep covered up as I go about my day trying to make our life feel as normal as possible.

On Thursday, our billionth snow day of the winter, I threw my kids in the car and, without thinking, went to our local library. It was a great afternoon! We wandered and browsed, fingered and flipped pages.  It wasn't until I was in the library and facing that couch where the woman had once sat that the memory came back to me.  I looked past the couch to my children excitedly browsing the shelves and I gave that invisible woman on that couch no more power over me or where I would go or not go, and it felt liberating.

Dear Grumpy Library Patron,

Warning for next time - if you are going to have a problem with special sounds, you are going to have a problem with me.

Your fellow bookworm,
Mama Bear

February 27, 2015

Dumpster Dates

In 1998, when Alan and I were dating, he took me on the most incredible date.

He took me to the local gas station for a 29 cent soft serve ice cream cone.  We ate our cones behind the gas station, sitting on a dirty curb, next to the dumpster.

It was a great date.

Little did I know during that date that Alan already was fixin' to propose to me - not there, however, because that would have just been too romantic.

Apparently, he is drawn to the kind of girl who doesn't stick up her nose at a 58 cent afternoon date at a table curb for two by a dumpster.

It was what he could afford, and it was wonderfully simple, just like I like life to be.

Something happened over the past 8 years of our 17 years of marriage.  I call it the Side of Special.  It has taken everything that was simple in our lives and turned it into something very complex.  If I let myself talk my special language and spouted off at the daily complexities of the special life - I would lose every reader I have.  Parenting a child with special needs, especially when those needs include physically and medically complex needs, affects every single aspect of our life.   It affects when we sleep, what we eat, what we say, how loud we can say it, where we go, where we can't go, what we can drive to get there and who we can talk to when we arrive.  It affects our marriage, our other children, our friends, our employment, our finances, our vacations, every minute of our daily life and our very outlook on everything we see. Despite our best attempts to the contrary, the special life has made for a very complex life.

My husband and I long for the return of simple.

So we seek the simple inside of the special.

This week, we took a page from our beginnings, for a wonderfully simple dumpster date. We sat late at night, by a dumpster, behind a gas station, and sipped some wickedly delicious peanut butter hot chocolate and talked about our day.

It's comforting to know we can still find a little moment of simple, buried in this big complex beautiful pile of special.

February 25, 2015

My Biggest Fear

Between my 5 kids and all that goes with them to achieve an education, my mom mind is fried.

"You need something signed? By last week? Where is it? Who needs their violin today? Is it an A day or a B day? Gym uniform washed this weekend you say? Too bad it is now Monday and you are late for the bus - wear it and be smelly.  Class party money? Here it is in dimes and nickels, all $5 of it. Library book - I haven't seen it, I told you to stop bringing those things home! Bridger ate your homework - literally?  Sorry honey, just tell the teacher, she will understand. I don't know where the scientific calculator is - just figure it out in your head - that is how Pythagoras did it. Run out to the bus stop - HURRY! Why are you back from the bus stop? What? It is a teacher workday? Oh. Why, it is.  Yes, you can just put on those mismatched gloves and be glad you are warm - I only buy 45 pairs each winter and you all have successfully managed to lose a single glove of each pair so tough luck. Poster due tomorrow? Ugh, we'll get to it in the morning. Tardy again - oh well, we will still get into college."

That is my daily dialogue - to myself.  Because I am pretty sure no one is listening.

School exhausts me.  Don't get me wrong, I love our school and especially love our wonderful teachers - but that extra *stuff* wipes me out.

Stuff like Pajama Day.  Is there a special prize for the mom that sends her kid to school in pajamas thinking it is Pajama Day, only to be nonchalantly told by the child when they arrive home that it wasn't Pajama Day?  I win that prize.  I can barely get my kids out the door with homework, folders, forms, wheelchair attachments and other "special" equipment, lunches and appropriate winter apparel.   Can we please put the kabosh on crazy hair days, stuffed animal days, spirit days, hat days, wacky sock days, character days, pajama days, etc?

That was what today was - a day of that extra *stuff*.

Or, at least, I hope today was.

Because THAT is my biggest fear - sending my kids off in some whackadoodle attire only to find out that my schedule is misaligned with the teachers.

Today was the 100th day of school - I think.  Eliza was supposed to dress up and go to school today looking like she is 100 years old - I think.  It takes serious concentration to disregard the 15 notices I had of such.

After I sent this cute little 100 year old lady off to school, I had a brief panic.  What if I got my dates mixed up??  Yipes, her satisfaction with her white floured bun might be short lived.

I love me a good education with a great teacher.  That's all.  Clearly the 23 consecutive days of -2 deg temperatures are affecting my mood.  I'll stop being the killjoy to all of the enthusiasm surrounding such "academic" energy and end my rant now, because I have a trail of flour to go clean up off my floor that leads out the door to the bus stop.

With all that said, you still couldn't pay me to homeschool.

February 20, 2015

What Kindness Breeds


It is the most precious commodity I have in my life.

No matter how many chocolate doughnuts I eat, I just can't seem to create any more of it.

Consequently, I have to conserve and protect the energy I have which doesn't allow me any excess to waste in negative ways -- road rage, pettiness, needless complaining, etc.  It is a refreshing predicament to find yourself always carefully rationing your energy.

Tonight a miracle happened.

My energy grew.

I was going about my usual evening routine - serving the kids their dinner with Alan still at work.  I was exhausted.  Arctic conditions have overtaken Virginia and the kids have been home for nearly 7 days straight.  With typical children this would make a mother pull her hair out.  With a child with special needs it makes a mom pull her hair out, her temples throb, her right eye continually twitch and a perma-wrinkle form between her brows.

In the middle of it all tonight, from the darkness of the cold outside appeared my bestie, Danielle.  She came over and told me she wanted to kidnap Bridger to come home and play with her kids and have an extended evening party.  Bridger nearly popped out of his chair with excitement at the prospect.  We changed his diaper and put on his coat and off she went carrying my heavy boy in her arms and a smile on each of their faces.

After they left, I stood there shocked and warmed all over.  That has never happened! Never has anyone come to my house and said they wanted to pick Bridger up to go play. What a beautifully kind gesture.

That act of kindness then proved miraculous,

because it created energy.

I learned tonight that kindness can breed energy.

After she left, even though it was late in the evening - pretty close to the time that I collapse into bed unable to move another muscle, I was infused with a fresh energy and went right into my bathroom and proceeded to give it a good cleaning.  Not the regular wipe-down kind of clean, but the scrub so hard your nails peel off, your hands become raw and you are coughing out the fumes of the cleansers kind of clean that it was in need of (sorry green friends, I love me some chemicals and nothing smells of joy in my house more than some lemonylicious fumes of Lysol.)

I never would have had the energy to do that after the physically demanding long day (and week) I have had, but for her spontaneous sweet act.

I am grateful for my friend and especially grateful for the energy that her kindness grew in me.

My boy is now tucked into his bed having thoroughly enjoyed this unique first time experience tonight.  I am predicting he is likely never going to fall asleep. He is upstairs excitedly chattering away to himself about this evening.  Apparently, this kindness created extra energy in him too!

February 19, 2015

Calling All the Single Ladies

Take a number and line up because. . .

Mr. Dapper is in the house!

Last weekend Bridger was crowned Prom King, along with dozens of other beautifully special children at Jill's House, Night To Shine, sponsored by the Tim Tebow Foundation.

It is Jill's House annual prom, an event celebrating the beautiful children that they serve.

Bridger had never attended this event before, and he had no idea what to expect. Nor did I.

But the minute we pulled up to the valet service and saw the red carpet and "paparazzi" waiting his arrival, I knew we were in for a treat!

After he received his crown and sash we hit the dance floor and the ladies came a flockin'.

They were all of the wonderful staff and volunteers at Jill's House, all gussied up for the night.  He cut a rug out on the dance floor with his beauties, but his favorite dance partner was mom.

When "Let it Go" came blasting out of the speakers I knew that it was a dance that needed the wheelchair to be left behind.  I lifted him out of his chair and we danced and sang, spun and dipped.

That dance catapulted my thighs into a 24 hour burn after that and I could not lift my arms above my head the next day.  Who knew what a workout it is to dance while holding a 70 pound non ambulatory child?!

After he had performed all his moves on the dance floor he hit the photo booth for some snaps.  There may or may not have been some lip action in that booth.  A boy doesn't kiss and tell.

He took a brief escape from the party to go have himself a limo ride.  I laughed during the whole ride with him.  It was dark, he couldn't see - and for all he knew, he was in a strange car that was leaving the party.  He was making it very clear to me during the brief ride that he had every intention of returning to the party and that the limo was not taking him home.

We have never stayed at an event from beginning until end.  Bridger doesn't make it -- and often, WE don't make it.  Sometimes we just feel so out of place and the challenges are so constant that the pain of being out in public settings outweighs whatever benefit there may be.  

At the Night To Shine there were parents chasing their child across the dance floor as the child did the expected/but yet unexpected bolt to the parking lot.  

There wasn't any staring or gawking at such scenes.

There was a big bowl of goldfish crackers positioned between all of the fancier desserts.

How blessedly thoughtful and accommodating.

There were children {mine} messing up the meticulous decorations without a second glance of concern from anyone there that had gone to great lengths to set up the event.

What comfort this brought.

There was not an impatient glance from the long line as Bridger took forever to get in and out of the photo booth - all eight times.

The company surrounding us knew there were far more important things to give thought to.

Alan and I made it a date for us as well as we enjoyed holding hands in the chairs lining the walls as we watched our boy shine.  We commented how incredibly comfortable and happy we were.  Rarely can we go out into public and not worry about the disturbances, obstacles and challenges that we face as we do so.

This was an evening to relax and celebrate Bridger and all of his peers of Jill's House as we basked in their light.

Indeed, they shined!!!

Check out CBN's national news spot on the event. . . and spy yourself a dapper little man in the beginning of the segment rolling down the red carpet!

February 16, 2015

I Am A Maker

I'm a Butcher, I'm a Baker. . . 

Forget the candlesticks, I'm a Maker.

Last weekend I had another little escape.  I know what you are thinking, "TWO consecutive weekends away!?!"

Gluttony, I tell you, sheer gluttony.

I went away to a Maker's retreat, where for 48 hours I buried myself in threads and fabrics, needles and yarn with 45 strangers.

If you are going to go tuck yourself away for a spell to do such a thing, I highly recommend this place:

The Salamander Resort.  It is the essence of old hunt country Virginia with the most luscious bed I have ever slept in.  I was tempted to spend the whole weekend in my room, toasting my toes by the fireplace at the foot of my bed, but after a good night's sleep, my sewing machine was calling.

The Maker's were a curious site to the other hotel guests.  We each had our fill of questions.  "Who are you all?" was asked of me no less than a dozen times as the 45 of us sat hand piecing fabric around the grand fireplace in the Great Room on Friday night.

We buried ourselves into our work from the dawn to dusk, breaking for some scrumptious eats in town and an occasional stretch that we allowed ourselves to roll our shoulders back that had become stiff from being hunched over our machines.  Leading our group was a celebrity in the sewing world, famous for her patterns and own fabric line.  To sit at my machine coached through a garment modification by her was amazing! I soon, however, labeled myself a Faker Maker.  These incredible Makers had honed their craft.  They were at the retreat wearing wardrobes that they had entirely made themselves.  {insert out of my LEAGUE!} When they saw my scarf and bag, they excitedly asked what pattern I made it from.  Um, yeah, I told them it was from the Charming Charlie collection. 

So what makes a Maker?

The Maker's are the women who were pinning long before Pinterest.  They are the women who were making things before it was even cool to do so.    Said the owner of the Finch Sewing Studio that hosted the retreat during the kick-off party:

"[Our hand-crafting] will stay above the cliche.  Making things is important.  Finch opens a space where something we know in the quiet of our hearts is confirmed: that hand-crafting is vital to who we are.  It fuels our curiosity and challenges our ability to learn and grow.  It builds our sense of self-worth and simultaneously brings us together. . . during this restorative retreat weekend, I will dwell in the company of kindred spirits."

And kindred spirits we were.  Makers hold a magical connection.  To meet one is to love one and there is a kinship and connection that forms immediately.

The best part of the retreat was not the cute dress, skirts and satchels that I made, but what happened when surrounded by Makers.  What started as a room full of strangers soon became this:

After the first evening of sewing a dozen of  Maker strangers-turned-best friends adjourned to the firepit for some overpriced s'mores and to laugh until our faces hurt, only then to look at our watches and realize that somehow it had become 2am.

In this pocket of delightful company at first unrecognizable, I soon found the warm and cherished familiarity of Makers.

February 10, 2015

My Lucky Day

Last Wednesday I had a lucky day.  I had spent 6 hours throughout the morning and afternoon in medical appointments for Bridger.

That was not the lucky part.

As a reward for such weary doctor days, Bridger and I have a ritual of stopping by the Cafe Rio that we pass on the way home for a little date to celebrate making it through our difficult day.

I unloaded Bridger from the car (which took a good 20 minutes) and wheeled him towards the door. Through the glass windows of the restaurant, a woman saw me approaching and jumped up out of her seat and ran to the door to beat me there to open it for me.

I was dumbfounded.  I was so touched and looked her in the eye and offered her the most genuine "thank you" that I could say.

As I was standing in the line to order my taco I reflected on what had just happened and I felt that big scratchy lump form in my throat and my eyes began to well up.  I can count on 2 fingers how many times someone had jumped out of their seat to open the door for Bridger and I.  There have been a handful of other times that someone, after watching me struggle for an ample amount of time -- getting wheels caught, stuck on thresholds, blocked by door jams and lack of hands, who would then come offer to hold the door, usually after I finally made it through. Then there are uncountable occurrences of people the just stare at us when we are fumbling through the door.  I will choose to ignore this latter group, just as they ignore me. The few in the second group I am grateful for, but there is a difference between watching someone struggle, then hesitantly coming to help and the first group, now 3 in total, that leap out of their chair at seeing us coming, detecting the need to help before the struggle ensues. For that first group I mentioned, I am forever touched.

I ordered my taco, tucked Bridger under a table to enjoy his requisite pancakes that I brought in from the neighboring McD's, and I walked over to that woman sitting at the table by the window, obviously on a lunch break with her colleague.

"Excuse me," I said, "I wanted to let you know, again, just how very grateful I am that you did that. That has only happened a couple times for us in his little life and I am so moved by and appreciative of your gesture and wanted to let you know that."

She popped out of her chair again and gave me a big hug.

I wanted her to know the extent of my gratitude in such a way that every time in the future that she sees a wheelchair coming down the sidewalk, she will continue to jump to action, without having to be compelled to by first having to watch a struggle, just as she had so selflessly done that day.

Bridger and I enjoyed our lunch and afterwards wheeled away to leave. As I was standing to go another customer jumped up and got the door before we even approached the exit. I didn't hug him, though I thought he deserved the same, but looked him directly in the eye and offered another heartfelt, "thank you!"

What in the world, I thought, twice in one day?!

We had one final stop for Bridger at the optician. As I approached that door, wouldn't you know, a man seeing us through the glass on the inside jumped out of his seat and ran to the door to open it for us!

Three times in one day! Incredible! I couldn't suppress the bounce in my step the rest of the day.

3 doors opened - and all without with an embarrassing struggle to display to earn such a gesture.

3 simple gestures, all received with gratitude and delight - it was absolutely my lucky day!

February 06, 2015

Lessons from 33,000 Feet

A little shadow was lingering on the final hours of our special moms getaway, caused by the fact that it was nearly over and we were soon to return to our reality.

Don't get me wrong.  We love our lives - all the special stuff included.  We were longing for our sweet children within a couple hours of being gone.  But to escape our special life gave us a glimpse at what other people feel on an everyday basis.

And that was bittersweet.

It is almost easier to keep doing the hard stuff, not knowing what you are missing out on or what life feels like without the weight on your shoulders.  To get a taste of a stress free day gives us a comparison point to how extremely difficult our daily lives are - and comparisons aren't healthy.

As my plane was taking off to return home I had a brief flashback, remembering the many cross country flights I took as a college student.  I couldn't help but to compare that carefree feeling I had in my early 20's, with a degree of shock, to how I got "here".  How did I get to be a grownup, flying home to a crazy life filled with 5 children and a house full of wheelchairs?

I lay the side of my head against the window, trying not to feel overwhelmed at what I was returning home to.  The sunshine was pouring in the window onto my face and the white puffy clouds that surrounded the plane were breathtaking.

I had a feeling at that very moment, straight from Heaven to my core, that my life is exactly as it was intended to be.

There is no more comforting feeling that could have come to me at that moment, or at any moment, than to know that this is the life I am supposed to be living.

It wasn't the amazing getaway with some girlfriends that had the most impact on me this past weekend.  It was a simple, but powerful lesson I learned at 33,000 feet.

February 05, 2015

How Do You?

How do you relax when all you know is stress?

We figured it out.

How do you act carefree when every minute of your life is accounted for by someone else's demands?

We solved that problem.

How do you make your body sleep when it is programmed to always be awake and on alert?

Didn't seem to pose an issue.

How do you find your laugh lines when your worry lines are so very overly pronounced?

They magically appeared.

How do you fill your time when you aren't used to having any for yourself?

We found a way.

These two other special moms and I appreciate laughter more - because we experience too many reasons for tears.  We savor moments to relax - because we live constant stress.  We appreciate empathetic conversation - because we rarely have it.  We relish each other's company - because the special life often finds us alone.  We find more reason to enjoy the most simple pleasures - because those are the little pearls we hope to find lurking somewhere in our grueling and exhausting daily routines.

The first annual sorority meeting of the Special Moms of Congenital Disorder of Glycosylation Type 1a San Antonio edition is a wrap - and what a lovely meeting it was!

For the record, I don't want to see another bowl of guacamole for a very long time.