Author Archives: Finding The Joy

As a true nostalg I have a strong pull to look at your baby pictures and birthday blogs as your born day draws near. Well. I’m sure it comes as no surprise to you that I am obsessed; the way you fixed me, alter perceptions and change perspectives. Not to be outdone by the joy of your milestones and the delight in the way you love life. In fact, I once called you “Christmas morning” and I still stand by it. You give me such beautiful butterflies that it is a must to spend some of each day soaking you in.

 

But….there’s always a but, isn’t there? I do not want to disillusion you. Christmas morning is a labor of love my darling. There is preparation after the planning. And honey, as the kids grow , it all gets harder. Once , not so long ago, I could throw you some crisp-Christmas wrapping paper and you would toss it with glory and glee. Now, I’m metaphorically building you a bike; complete with tons of decals and a lost set of directions.

 

 

 

Art Williams once said:

I’m not telling you it’s going to be easy, I’m telling you it’s going to be worth it

…and I swear he was speaking directly into my soul. Because, you see, you are the thrill of opening up that gift that you spent your whole life wishing for but never believing you’d get. And you are also the adversity of hunting for that gift in hundreds of stores and waiting hours in line just to get it. It’s not your fault baby, it’s the name of your game.

When you were a wee one and I shouted your worth through a megaphone on top of a mountain, I was not yet chasing you down busy streets or peeling you off floors. You were easy breezy.

 

 

Now I’ve seen behind the curtain of the: great, powerful, Oz that you are. I have to put in the work. We all do. Making sure you remain great and powerful is: hours of paperwork, thousands of conversations, gallons of patience.

I want you to know this as you turn five and you start to get it a bit more. (You even have a loose tooth like a big kid)

All the work is what Art said it is. It’s worth it. You are worth every single hard moment and difficult day. Your joy outshines it all. And everything has changed since I carefully cradled your squishness yet nothing has changed at all.

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Watching you dance, is seeing the Christmas tree lit first thing in the morning. Hearing you talk, is hot cocoa by the fireplace. Seeing you achieve, is singing Christmas carols all dressed up at church. Your smile, is pretty, wrapped gifts with a bow. And the way you know how to love people so good is, the Messiah himself. You truly are the star on top of the tree. You are Christmas my love, bike building and all.

I love you Judah Michael and everything you personify. Happy 5th birthday sweet boy. May this be your best trip around the sun yet.


Oh Augie, my baby, how you steadily undo me …with your clever demands, delicious words and looks that I get lost in.

You exhaust us easily in the way that you know yourself so well. But, in the midst of our exasperation, you should know how well your traits shall serve you.

The way you crawl into our bed, carrying your bunnies behind you. You are a problem solver. You will not complacently allow yourself to be frightened. You continue (and continue) to fight and wail when you are scared. You demand help. I shall never worry about you holding your own if you ,God forbid, meet an unsavory character on the path of life.

You ask for what you desire on repeat.  You know what your needs are and you will not waiver in the slightest bit from the thing that is holding your words hostage.  This will always serve you to be strong in your convictions.  May you hold your stance always the way that you do now.  I see you fighting for what is just and to be honest, it eases my mind a bit about how things will go when I am unable to lead you.

Your sense of style must not be messed with.  You will not be told what Halloween costume you will wear or what shirt goes best with your courdoroys.  You have many pairs of shoes and always wear the ones that fit your mood.   This tells me about your sense of self.  You are not wishy washy in your ways the way I was. You are certain about who you are and will always know the way you want to feel in the morning when you walk out the door.

You consistently ask for a bite of whatever thing me or daddy are eating at any particular time. You will not give up until you get to try our food, sometimes eating more of it than we do.  This tells me you are adventerous and willing to try new things.  You will enter the swirls of life knowing you have options and I know you will hold on to the ones that make you happy.

Your vocabulary is so adorably and eloquently developed.  And you know just how to use those baby blues to compliment your request.  The way you shout “hi” to everyone you meet and give them your undivided attention screams that you will always work well with others.

And let’s talk about you and your brothers.  Being the third is tough.  You get teased, you get hand me downs, and you will yourself to keep up with the gang.  Currently I am watching you surpass your older brother Judah. You fight back now and you hold your own….. but I also see the fierce loyalty you have for him too.  You help him to make good decions and make sure he’s following your bad ones (like jumping off the couch.)  The bond that you have formed with Calvin and Judah will be unbreakable.  I see it from the outside so clearly.  You are this magnetic personality that draws your brothers to you.  You are the glue little darling. The firey, unapologetic, hilarious glue.

I sometimes feel sad that someday the weight of caring for Judah may fall on yours and Calvin’s shoulders. But I know you will handle it all with passionate persistance….the way you handle everything.

You see my sweets. Your mighty personality sometimes gets the best of us.  It is certainly not to be overlooked.  But the things about you that make us beserk are the very things that make your soul so beautiful.   

Happy 3rd birthday Augie.  Life is so much more charming with you in it. I love you sweet boy.


Dear My fellow Moms and Dads,

I believe that we all want the same thing when it comes to our precious children. Whether we breastfeed or bottle-feed, home school, put them on that scary yellow bus, or wave goodbye from the carpool lane. Whether we work or we don’t, give time outs or not, buy from the organic section or keep them on a steady cycle of almost-real chicken nuggets. Whether we go gluten free and media free, or hand them a TV dinner in front of their coveted IPAD . Whether we hover or let them maneuver down the tallest and twistiest of slides. Whether we’re, fresh off of a Pinterest board, completely winging it, rich or poor, typical or not; we all want what’s best for our babies. This is the truest thing I’ve ever known. From my city school teaching experiences to the journey as a special needs mom; the loves parent has for their child is palpable. It is unwavering and it is fierce, no matter what tools we have to work with. We all want our kids to be loved and have friends. We want them to remain the kind, confident, little magic makers that made them believe they would conquer the world as toddlers. And so we all are just doing our best out there, paving the road for the wee ones who own our heart. That’s why we try so hard to preserve them as the ones they are; without fear, hurt or sadness…..

But Mamas and Papas, Occasionally we overcompensate in a desire to protect. I know I do. Without thinking, I sometimes gasp at a mini boo-boo, scaring my child into believing a red-stained, skinned knee is tragedy.

I use this example because it reminds me of when your child stares at mine. I am aware of it every. Single. Time. You see, like you, I am on high alert. I too worry my child will encounter sadness, hurt or fear. And knowing what I know, about the sometimes unforgiving world out there, I also am on the defense.

But my defense is not what you may think… I am armed with a kind smile, a wealth of information (if you want it) and a warm welcome into part of my world.

So please, don’t have your child turn away from mine in an effort to be polite. I get your goodwill, I so get it. I once did not have a child with disability and I still remember averting my eyes.

But, sweet parents, your efforts are backfiring. They make your child fear mine; the way a gasp makes my kid fear a scrape. There’s too much protecting and not enough inquiry. Don’t worry, we don’t mind the questions. There is nothing more innocent and pure than a question from a child. You know that….and so do we. We aren’t sad and we aren’t attempting to hide our beloved. Actually, we are trying to show him or her to the world.

So, here’s where you can help. You can have your child say hello to mine, maybe even have them high-five. And you can always give us parents a knowing wink or smile. One that says: we get it, we see you fellow parent. We are out here loving our children just like you.

In Solidarity,

Beth


We weren’t going to go to the Gala this year. I wasn’t speaking in front of the hundreds of people supporting GiGi’s. Judah’s picture wasn’t there welcoming guests.. I wasn’t on the volunteer committee. I had no hand in the preparation pot what-so-ever and so this year we were going to skip it. Am I glad we didn’t …..

I came in crying. We recently found out Judah has traits that are congruent with autism. And, as with his Down syndrome diagnosis , it is a pill stuck in my throat. I want to go back. I wanted to be at last years Gala when I thought Judah could be anything, not this one where I am constantly wondering things like , will he ever call me mama?

It was hard and raw to walk up that staircase. The butterfly was back. The one that fluttered around my belly when we went to our first World Down syndrome day at the mall. I wondered if I could even do this thing, and all the same, I knew I needed to.

The first thing that caught my eye was David’s picture and I couldn’t help thinking about his mom. I was betting that she would give anything to hug and kiss her boy one more time.

How dare I be sad about my son’s new diagnosis?

Next Bobby and I found out we were sitting at the same table as a couple we met our first year. They were like us. They liked to laugh and be light . We are huge fans of the fun they are and even bigger fans of their strength. You see, they lost their little Bella when she was just a few months old. They barely got to even soak in that extra chromosome. And they were still HERE supporting GiGi’s.

How dare I even sulk a little?

The difference between the autism diagnosis and my catapult into the world of Down syndrome, is that this time I knew I had people. And I found my way to them as soon as we got there. I knew their words like “he is still just Judah” and “we still love him” would save me. I also knew that the way my desperation was met with loving nonchalance meant that this was no big deal. And so through loving listening from friends… and some heart breaking reminders of why I should be grateful….I moved on.

I moved on to remember why we were there.

The video from National bringing so many tears. As one man said:

We all deserve love and to be included., We all deserve to be valued, respected, and to be independent

In fact, this video was so inspiring that radio personality and MC for the evening, Skip Clark, was moved enough to bring his son Zach to the podium. He shouted admiration for his boy and the crowd’s eyes began to rain.

Self advocate Bill made a speech that reminded me how fun this life is.

He beamed about how being a part of GiGis makes him feel proud and then offered give anyone a tour of the Playhouse. He concluded with an invitation to meet him on the dance floor….which did not disappoint by the way.

I remembered how much purpose GiGi’s gives us as Emmit’s mom recounted a doctor suggesting she have an abortion. I couldn’t help but think about all of the work that we still need to do. I couldn’t help wishing every person in the world had an opportunity to be welcomed into the room; that they got to hear this mom profess her love through tears. For they would surely feel what we were feeling. We were all shaking our heads yes with this momma through blurry eyes. We all felt the importance and value of the people we were fighting for . I had to immediately hug her after because rather than wallowing, I once again was ecstatic to be a part of this journey…whatever it may look like.

And as Bobby and I waited in the wings so that I could embrace this beautiful new mama, he and I locked eyes and both emphatically said “this is our thing”

This will always be our thing. Loving and supporting GiGi’s gives us so much more than we could ever give them. It is a sense of commaradarie , purpose, and ultimately, amidst some trials and tribulations; it is also pure joy.

Well we let that joy carry us right on through the rest of the night.

We took lots of pictures. We hit up the photo booth with the best table mates a couple could ask for ; Erica and Jim. We happily bid way too much money on a popcorn maker for our kids. We happily drank too much as we chatted up old friends and made new ones. We talked shop and bonded over commonalities. We made good on our vow to dance with Bill. We swooned over littles with something extra. We ate lots of cookies. We celebrated Sarah who pulled off an amazing feat and greeted new board members with hopeful hugs. We grinned straight until our heads hit the pillow and never one more time did we feel mournful.

GiG’s does that to you. It leaves you ambitious to volunteer, eager to donate, grateful to be a part of it all. It’s the antidote to what ails you. It’s the cure for common casualness. It is the gift that keeps on giving. Never will I ever miss an opportunity to be there for GiGi’s. Not when they have spent so much time saving my soul.


Dear little me,

life-long lover of the written word…

It’s your 45th birthday today!  You made it through some shit, a lot of shit to be exact (sorry for swearing…it seems weird cursing to a baby….but then again it’s odd writing a letter to a baby so ….) Where was I?  Yes, some shit.  You have fought and clawed through this life with demons and battles that may have destroyed others…and you survived!  Not only did you survive but you are thriving.  Do you want to know how little ol’ innocent you,who hasn’t been bent or broken yet, managed?  One word…. LOVE!  You are so loved.  You have been so loved in this life.  You’ve been kicked and gotten some metaphorical karate chops to the face but you’ve been saved by love….and therapy and Lexapro….but mostly love.  From the most handsome, doting husband to the most endearing first born a mother could ask for.  You have a child with special needs too (can you stand it?) and he makes every single thing in your life more special.  You have a spirited little surprise child who keeps you young and makes you feel 45 all the same.  You have so many friends; silver and gold and a family who makes your heart get to the heart of what matters.  This year was your year to heal.  You made a pact with yourself on New Year’s Eve that you would finally unpack all that baggage that life handed you in the last 45 years and learn from it.  Learn from it you did…

You are a perfectionist. A perfectionist is not a person who needs their house in a meticulous order (although that can be part of it) but one who puts unrealistic expectations on themselves that they would never put on anyone else.   The cure? It’s not a magic potion… but rather recognition and saying “delete” to anything unkind that you are serving at your well-being buffet.

Self sabotage is your worst enemy.  Actually, self-sabotage and Imposter syndrome are in a gang together that try to wreak havoc on your self esteem.  But, you don’t believe those jerks anymore.  Their gig is up.  You recognize that the stories they tell you aren’t the truth and the truth is: you are doing a great job!!!!

You are a fixer.  It’s a type of control….but the good kind.  You try to fix everything and everyone all the time because you are in a constant state of trying to make sure nothing bad happens ever again.  It’s exhausting…. and impossible.  So, you’re doing your very best to let go of the un-fixable and working more towards acceptance and being.

You are so loved. Period.  This is what I want you to know the most. You are so lucky to be so loved.  And at 45 you are finally loved by the most important person of all…

YOURSELF!

Never give up, life has some incredible surprises in store.

Happy birthday.  I love you.

Beth

 

 


I’m lingering lovelier than I idled at the start

Knowing I’m lounging in the middle of its heart.

I’m taking in the sticky….the sun sticking around.

I’m buzzing like the bumbles across this whole damn town.

I’m smelling, tasting, and listening to it all.

I’m adoring all the lushness

before the leaves begin to fall.

I’m taking in the harmony of cicada sounds

and the fire of flies that illuminate the grounds.

Half of me keeps wishing

all my days could be like this.

Half knows, if it was so,

I’d say bye to beholden bliss.

Soon, sun-kissed skin

will be replaced with sweaters…

and those moments, make these ones

come together  that much better.


I always joke that my lists have lists, but, in all honesty, it’s not a joke.  Post-it’s are my love language and I manage my life one check-mark at a time.  So, imagine my delight, when someone invented the “summer bucket list.”  I came in hot with my first list.  We created it as a family and added cute little pictures next to each activity.  We actually constructed it on a giant, chart paper-post-it and plastered it as a shrine to our summer. We , (or more me) were downright giddy as we completed each mission.  And, surprisingly, I was not disappointed when little squares were left unmarked.  Our tradition continued the next couple of years and then this year came in like a lion.

For  some reason, life was piling it’s matter on me quicker than I could put it on June’s to-do list and problem solve.  I can’t quite put my finger on the exact item that tipped my tower and made me feel overwhelmed but never the less I was.  The stress I felt was palpable. I was getting physically ill with a cold and fatigue was making it hard to complete the most menial of tasks.  I was slipping into a hole and I would be damned if a minute of my precious summer would be lost.  So, I clawed and climbed and made my way into the summer sun…sort of.

My work buds and I rented a bike to take around Syracuse. I was so excited for this day, yet when it came, I was struggling to stay present.  I  even had to leave because I could barely hold a conversation.  Brain fog is real life.  That same evening I found out two of my 3 kids were very sick and we were going camping in two days. “This summer would not be ruined by illness or fatigue” is the narrative I told myself.  I now know, this narrative is fiction, because to believe you can control the world’s woes, is delusional.

We did all the right things.  We rested.  We called the doctor to make sure camping was a go (even though my gut told me something different.) I called the campground to reschedule but hung up when I was put on hold. We decided and undecided.  We made the camping list and we stayed true to our plan to make this the most incredible first weekend out of school. We tried to will “the very best first camping trip ever”….except that it wasn’t.

It poured. Number one camp ruiner ever happened on the first day. I knew it was a possibility but we had zero boredom busters to relieve it. Back in the day we’d just drink and play Jenga. No bueño when kids are in the mix, that just makes life harder. I felt terrible that it was raining. I was so mad, so disappointed, so not making lemonade with all my lemons. I spent a lot of unnecessary energy thinking how I could have picked a different weekend, or stayed in a hotel instead of a cabin. I basically went over all the ways I fucked this trip up…..then I was so tired from the mental boxing match, I napped. It was a 2 hour rainy snuggle fest next to my sick boy and it was pretty delicious. Sometimes when your down, the best feeling is to sink into it ….I eventually peeled myself up, awoken by a tender husband kiss and vowed to fix my foul mood. Only, too bad for me (as my girl Junie B would say) because the roof top pizza place we went to was serving wine in plastic cups made for beer pong and I tend to slip into old ways. That means fixing my mood by drinking and partying. As afore mentioned, that just made everything harder and I was asleep by 7:30….Leaving me to wake up at 3:30 in the pitch black with no where to go except down the dark endless hole of anxiety. So that was fun. We packed it up and packed it in the next morning and before leaving, Calvin made me buy the ring I had been eyeing the day before.

 

After mountains of laundry, long hot showers and heavy eyelids, we went to dinner on the water back at home and played a game. I asked Calvin on a scale of 1 (having to go to school in the snow when everyone else is off) and 10 (the best day you ever had) what he would rate the trip that seemed like an epic flop in my eyes. He said infinity! Freaking infinity people! I had blanked on our s’mores and Pokémon hunt. I had minimized our quaint children’s book store linger and the trinket search which landed me a sweet little ring. My perspective was skewed. When Bobby also agreed that the trip was awesome, the surprise I felt shook my core like a magnitude 6.5. How in the world was I so out of line with my family’s experience?

 

Monday morning rolled in and before my eyes were even fully opened, I promised to fix my fun failure by making a list of all the things we would do right. I would problem solve the shit out of my situation and make everything grandiose again. And again, for the bazillionth time I was wrong.

When I sat in the chair across from my therapist, tears immediately started multiplying. I hadn’t seen that coming. Usually, as to not waste her precious time, I easily can turn off the faucet, but on this day, I had sprung a leak. I cried for the ways the trip went wrong. I cried for picking the wrong weekend, for the weather, for drinking too much to try to lift my mood, for sleeping and resting, for falling short of what camping was “supposed” to look like. My therapist told me that shaming my self for not being able to control: rain and exhaustion and illness sounded ridiculous ( I added narcissistic) and that my high expectations were unattainable.

Unattainable expectations. Wow. I left there recognizing it. Two weeks later, I’m still deconstructing them. The why is deep rooted, but it doesn’t really matter. What matters is that, in the most literal sense, I am stealing joy from myself. Lists and expectations allow me the illusion of control. But they also stop me from being present. So rather than enjoying the moment I am too busy fretting over why the moment isn’t more perfect and how I can make it better in the future. And that’s why I threw out my Summer Bucket List.

I actually paid money, real live money, to get suggestions for things to put on our summer list. I tossed it aside. I haven’t made a plan yet. And it’s a good thing because summer pneumonia, which I’m currently recovering from, wasn’t on the list. Side note: could all the stress from trying to construct the perfect summer be what caused me to be sick? Maybe? Probably didn’t help. Instead I’ve made a reverse bucket list.  One that celebrates all we have done, big and little.  Life is made up of teeny moments and I’m starting to learn that when I try to decide how those moments will go ahead of time, I undo the magic. I explain how the bunny is pulled from the hat before I even perform the trick.

Today we will go to the market.  And maybe someone will shit their pants and we will have to abandon all our treasured treats?  Maybe we will bring home a puppy. (doubtful but a girl can dream) Maybe we will find fresh hot donuts and share them with a laugh. Or maybe someone will shut their finger in a door and ruin the whole experience (actual example from something that happened at a pizza joint last week) The thing is I don’t know and to assume I can prepare for anything is unrealistic. Also, Why would I want to? There is so much delight in spontaneity . So here’s to my new plan. The no-plan plan. The plan where I plan for anything and try to control nothing.  It’s new, hard and uncomfortable and I can’t wait to place a check-mark next to it on my little reversed summer bucket list.