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…
Never give up, life has some incredible surprises in store.
Happy birthday. I love you.
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.
Ever since I made the announcement that I was having you people started telling me not to blink because it all goes by so fast. So, I soaked you in real good. I snuggled you close for long lingering afternoons and let chores remain undone. I played with you and as I did, I bore holes in to my brain of what it felt like so it could not escape. I took pictures. Lots of pictures. I took you places. Lots of places. I would not forget. It would not go too fast. I would not miss a thing or regret a moment. I would hold on for dear life to the sound of your voice. I would ingrain your adorable Calvin-isms into my long term. I actually have them all saved on my phone. I analyzed your face from every angle , your fingers from every knuckle; especially how they looked clasped in mine. I watched you sleep. I still watch you sleep. And every chance I get I squeeze you hard like you’re leaving for your first semester abroad.
But guess what? I’m still forgetting. I’m blinking. It’s not that I’m not absorbing. It’s just that you are changing faster than my mind can lock the previous version of you in my memory bank. You are constantly morphing into a more independent, opinionated, stronger character. According to you, all this change means you may like mashed potatoes again. And you also told me you’ll never change so much that you won’t need my help building robots, so that’s a relief.
The things you said were cute and funny quips. But I did what I do and I took them to heart…..:
I told you that you were changing so quickly and your instinct was to comfort me by reassuring me that it could be a positive change…one that involves your old favorite side dish, mashed potatoes. You’ll never change from that incredibly kind boy who looks out for other people’s feelings. You’ll always find a way to look at the bright side when someone is down in the dumps and you’ll continue to make me laugh with your delightful introspect.
When you asked me why I wanted you to stay six a little longer, I was honest. I told you that as you grow you don’t need as much help from me and I really enjoy helping you with things. You made a conscious decision to always need my help building robots. I love that you know you will continue to love robots. You know yourself so good. You aren’t a flip-flopper and unapologetic-ally so. God I hope you don’t lose that. Because we do sometimes. We lose ourselves to become what others want to see in us. Or we lose us to how we want to be seen. We wear masks. Please, don’t do that. Do not cover your beautiful soul.
And finally, you put family first. You want me and your dad to help you build robots and forts and watch shows and you want us all to be together all the time. Believe me, I wish that wouldn’t change. And I will foster your love for that with abandonment. To fly is inevitable though. And I want it. I wish it for you.
Just please don’t forget that there will always be mashed potatoes at the dinner table waiting for you if you decide to like them again. And there will always be a stash of cardboard, tape, and markers for robots waiting to be built. And when it goes away, which it will surely do…. Well then I will find peace in knowing that I peeled my eyes open all the time. I did all I could do to stop them from blinking.
Happy 7th birthday. You are spectacular darling. Just spectacular!!!!
Worry is like a wart, a blemish, a literal gray hair. It is an extension of me that I wish wasn’t there. It shows itself with just the smallest amount of prompting; most often while the birds cease their chirping and the world is dark. It is incessant, relentless and it picks up speed as thoughts feed off each other like a persistent connect the dots. And then….the light of comes and the sun blurs it a little. Warm hot coffee and laughing littles lessen its blow.
Today surgeries are complete. Doctors and specialists have called to give their all clear and I can feel how I will flow through this day with ease. My shoulders don’t hug my ears. My breath is not hard to swallow. My heart does not feel trapped in my chest. Biopsies came back all clear, MRI’s all clear, bills paid, children loved and happy, husband healthy . All is as well as well can be and my body feels it. My brain knows it. I am at peace….
Yet, still, tucked way back, behind the ease and the breeze, I can’t help but to worry about when the worry will be back.
The life of a worry wart.
I have just finished riding a pretty tubular special needs wave.
A Medicaid approval, my very first IEP experience, World Down syndrome Day, and a respite refuge application came crashing in and we rode it out without wobbling. We are 4 years in on this journey though, so surfboards do not easily capsize . My husband and I handled it all like bosses and we even learned some things along the way.
Here is what I know for sure:
1. Parents of kiddos with special needs are fierce fighters and unabashedly so. Never, have I ever worn a t-shirt to a concert I was attending, but you can bet your sweet self that I wore my “Advocate Like A Mother” shirt to my son’s IEP meeting. We are proud parents who aren’t trying to pick a fight. But, we are passionate protectors of the ones we love and we know firsthand how hard they need our safeguarding.
2. Parents of kiddos with special needs are some of the kindest people you will ever meet. Although the grizzly is within us, much like the good Dr. Bruce Banner, we wish to remain calm and unstirred. We need a lot of energy, we do not wish to waste a single whisper of it. And we empathize, my goodness how we empathize. We fill doctor offices with knowing smiles, we meet moms in grocery stores ,who have screaming children, and we authentically console. We understand tired parents, piles of paperwork, bad days, and friends who are unable to keep commitments. We only stare if we want to offer up a smile, only judge if we see cruelty, and even then we don’t hold grudges.
3. We know people stare at us. What seems like forever ago, we too did not know about special needs. We curiously watched others trying to comprehend a world so foreign to us. We understand that’s what you are doing. We know there is never malice and we get it. We also hear our child being loud in an otherwise quiet restaurant. We are quite aware that he or she is throwing an abominable tantrum. We know we look different. Do not be embarrassed for looking a bit too long as you try to get a peek into our reality.
Also, I can’t speak for all parents, but I kind of like it. You know the popular Dr. Seuss phrase “Why fit in when you were born to stand out?” This resonates. I never felt like conforming. In fact, I rejected it. But that rebellious childhood story is a different tale for another time. In any case, I enjoy changing perceptions just by being seen. And while I realize that sometimes when people see our family it may invoke pity or sadness. Some others may observe us cheers-ing our drinks or smiling wildly and think “what do they know that we don’t know.” Maybe their peek inside our reality won’t seem foreign or scary or sad but more like some beautiful, whimsical secret.
4. We are very aware that people with special needs are the greatest minority group, yet, they are the least supported and most under utilized. If people with special needs were formally recognized as a minority group, 10% of the world’s population would be living with a disability. According to the United Nations Enable fact sheet, that would be 650 million people. The World Bank also estimates the 20% of the worlds poorest people have a disability. So, imagine the frustration of families when Betsy DeVos made the reckless decision to cut funding for the Special Olympics. Please refer to things I know for sure #1. We are fired up. We feel slighted. We feel less than. And most importantly, we feel sad. Because it is everybody who is losing here. The special needs community creates a narrative of overcoming, of perseverance, of unconditional love and support. It inspires. It is in fact that whimsical secret. The Special Olympics was the spotlight shining on worth. Now I am afraid that the people who DON’T know already are going to be left in the dark without a flashlight. And, in the dark, without a flash light, well, that’s how fear happens.
You will not see those of us who love our community rioting, or retaliating , or even fussing with a vengeance. We will kindly remind you of our loved one’s worth by holding hands and wearing t-shirts. We will talk to our congressmen and sign petitions. We will share inspirational stories ourselves and pick up the slack created by our politicians….And we will band together in hopes that nice guys do not in fact finish last!
I’ve been wondering a lot about your birthday blog this year. I kept thinking to myself how I’ve said it all. How there’s nothing new in the world of Down syndrome. How I’ve not only turned over every stone but have also dug deep in the earth below. And then today, without warning, I opened my eyes and opened my facebook. (This is something I have been vowing not to do as of late….so it serves me right I suppose.) I opened my page to find a headline so disturbing it brought me to tears before I could even bring myself to read it.
How dare the world shock me when I believed I was unflappable? ….when I believed I wore armor impenetrable by anything Down syndrome or disability. Well my darling, 4 delicious years later and I can still be brought to my knees by my fierce and innate need to protect you.
You’re still too young to understand this and by God’s grace, I hope the world changes before you are old enough to get it. But here is what they are saying about you:
They are saying that the world doesn’t get you. That they are scared of you. That because you take a bit longer to walk and talk and learn, that you are not worthy of life. They are saying that you are being put on a special list to be preserved because you are rare. You are not rare because of your changing environment like the polar bear though, you are rare because people are choosing that you need to not exist.
You are rare baby. You are a rare gem; hidden, secret and shimmery. You invoke gladness and goodness and you have come here to shine.
You are rare. You read people like no other. You know when I need a hug, need to laugh and you knew to come here to save me. You taught me patience and what it’s like to persevere in this world; to love this unfair world anyway.
You are rare in the way that you do not know how to be anything else but authentic. You can not pretend when you are frustrated. You don’t people please or put on airs. That is rare.
Your infectious laughter is rare and the way you dance whenever you hear the music as if nobody else is watching. That is also rare.
What you have brought to our family is rare. You have given us the drive to protect those in need and the ability to see everyone’s strengths.
The grandiose love I receive for spreading your story is rare. We get to see the world differently than some; full of love acceptance and through the eyes of the many people that have your back.
We get a rare glimpse into the world of special needs; a world where there are lots of figurative winks because we get “the hard and the beautiful” on such a deeper level.
So you see my son, you are rare…. but your article should read:
“People with Down syndrome on Time’s Most Influential List”
“People with Down syndrome on Nobel Peace Prize List”
“People with Down syndrome win hands down on How-To-Be-A-Human List”
You are winning at life my little love. You have got so much of it all figured out already. Thank you for teaching me and thank you for making me the lucky mom of someone rare.
I love you Bubby. Happy 4th birthday.