Monday, May 8, 2023

what really matters

Today we had a triennial evaluation for Grey. Parker's is tomorrow. 

I want to cry or throw up or run until the road doesn’t exist. Writing seems a little more healing and productive than any of those things, (and I already cried as soon as I got in my car.) 

For those not in the know, a Triennial Review involves the complete reevaluation of a child classified with a disability every 3 years in order to determine whether or not the conditions upon which the original classification was determined are still evident. It’s a pretty hard core process and takes a lot of work for students and the passionate assessors that work with our kids. A triennial also helps determine the content of a student’s IEP- Individualized Education Program. Spoiler alert: Grey’s still super autistic. He is perfectly and wonderfully made. He reminds me that God doesn’t make mistakes. 

I always say I don’t give a rat’s ass about the test scores and evaluations for the boys. And I don’t, except for when I do- usually in conjunction with reading and discussing the reports. Then I do so big. To see words like severe, lower extreme, below average when all he does is work is gutting. 

The older kids get and the more profound their disability, the less options are available to them in school and life. We are limited by what already exists, and what most likely has existed in the exact same way for the past 100 years. 
My brain spins after these meetings. I think of the groups of young adults with Disabilities I see wandering the aisles at Target and it feels me with profound sadness. And then flooded with guilt for feeling so sad. Is that the only available options for these children in Special Education who grow into adults who live on the world’s periphery? Who am I to judge- I love roaming the aisles at Target. So why do these encounters seem to pause my soul for a moment? Do they have money to spend? I wonder. Are they happy? Do they feel that emptiness I sometimes experience when I feel disconnected from the world?

We are in the figuring out stages for the boys next steps. Next year Grey will be eligible for high school. A huge transition for any student and their family. But for us feels like running uphill while carrying weights. I turn my brain inside out trying to figure out the perfect plan and necessary accommodations when most things are completely out of my control. I’m trying to learn the new acronyms and rules. After almost 14 years of parenting, sometimes I still feel like a rookie.

In a day or so, the sting from words on reports and ideal placements will wear off and I will remember my why. My boys have shown me that you don’t give up when it’s hard. You give up when the task is completed. The pain from these experiences always transforms me after the sting wears off. 

My life’s work: Making sure my boys are understood and supported in a way that helps them thrive. It’s never easy and always worth it. 


And as I sit and write I remember, if we are only trying to catch up to the assessments and evaluations, we will only be left out of breath and feeling broken. 

My boys and kids like them aren’t broken. Our evaluations don’t know how to access the information their unique brain holds. We don’t know the language or the rules of Spectrumville, so my boys must survive in the land of the typical. Can you imagine how hard that would be to constantly navigate the unfamiliar? Translating from a foreign language to the best of your ability? 

I looked over at Parker today and just soaked him in. His tiny soft ears. The tuft of hair that always sticks up in the back of his head, glowing gold in the sunlight. I was as just in awe of him as I was when he was a newborn. 

(Big Exhale). No one is a sum of their deficits. But instead we are the sum of what we overcome. We are bright and brilliant spiritual beings. We aren’t what knocks us down- we are if and how we choose to get back up. We are transformed by the hard parts. We aren’t how the world looks at us, we are how we look at the world. 




My boys remind me to look at the world with curiosity and awe. Greyson and Parker remind me to celebrate the differences instead of mourning over the deficits. Until then, I’ll write my own assessment.

Greyson Michael Kelly

Age 13 and 11 months

Eyes so blue they make the sea jealous. Great hair (seriously, above average). Effortlessly cool. Creative as heck. Resilient as hell. Detail oriented. Calming to be around. Skillfully observant. As resourceful as an engineer. Visually excels. Brilliant. Incredible memory. And no matter how hard, how complicated, how painful life can feel- he never ever gives up. (Resilience- Upper Extreme).


Tuesday, April 4, 2023

the middle age no one talks about

 Welcome to middle age.

I begin most stories with, “I can’t remember if I told you this or not.” I don’t exactly know when this started- but I think it was a part of “pregnancy brain” that never went away- just morphed into new and different forms of amnesia. 

Ah, it feels like just yesterday I was making fun of old people for telling the same stories over and over. I’m sorry old people, I am you now. The other day I was listening to Bonnie Tyler’s 1983 hit, “Total Eclipse of the Heart” and I felt like she was referring to Middle Age. 

(Turn around)

Every now and then I get a little bit nervous


That the best of all the years have gone by


(Turn around)


Every now and then I get a little bit terrified


And then I see the look in your eyes

I’m assuming that "look in your eyes" she refers to is cataracts, but I haven’t gotten to that part yet. Oh joy.

I’m too young to shop at Chicos, and feel a little ridiculous at American Eagle. I’ve created an imaginary teenage daughter backstory in case anyone asks if I’m lost and wonders what I’m doing there. Comfortable wins over fashion 7 days a week. 

I can’t lie- sometimes I look around and think- Is this it? 

I’m not famous. I never wrote a best seller. I gave up on climbing the career ladder thirteen years ago when my boys were born. Those tiny babies grew into a a 12 and 14-year-old who feed and clothe themselves. My very existence annoys them. Forget singing along, I’m not even allowed to tap to the beat of the oldies music (90’s gangsta rap) playing in my car. I’ve been chastised for looking at them too long. “Mom, Stop,” is a common phrase in our household. One day I’m wiping their butt after they poop, and the next I’m not even allowed near the bathroom if they are in there. 

 I’ll never have flat abs or perky breasts again. Most nights I prefer my bed, a book, a heating pad and my three dogs to anything else the world at large has to offer. And then I wonder why I’m lonely.

I’ve come to the realization that I never did get to marry George Michael-  I fondly remember my 8th Grade self obsessively reading the Faith Album’s cassette tape cover lyrics. He in fact will never be my Father Figure. (sigh)

And marriage is positively nothing like a John Hugh’s film. Think more co-parenting and less rom com. It’s hard as hell and frequently leaves both of us feeling under-appreciated and misunderstood. 

A big hobby of mine is attending Doctor appointments. At least that’s the story I tell myself because I go to so many. 

“Are you still getting your period?” the had to have just finished medical training Physician Assistant asked me at my annual appointment. “YES,” I answer defensively with a scoff. (I mean the nerve, never mind she’s holding my chart with my date of birth on it and the question isn’t as out of line as it feels.) Menopause. I picture a kind and cuddly looking grandma. She is knitting and on the front of some brochure for Menopause. She is NOT me. I am not her. 

Aging. There is discussion about this topic at every single Doctor appointment for every body part that I attend. Every single doc. I can’t get away from it.

You are offering me bifocals?! Where in the Costco did you get your optometrist degree? I’m too young for those even though I now can’t see near or far apparently. That’s not the point. I AM A YOUNG COOL MOM. 


Here I am at a Doctor's appointment to get a referral for a colonoscopy.  Photo by Parker.

Aging is front and center at my Orthopedist office where I go for knee injections. My Doctor said– “Well, as we age Inflammation, breakdown, and eventual loss of cartilage in the joints leads to osteoarthritis. Did they teach you to use “we” in med school Dr. Doogie Howser? You aren’t a day over 30 and I can tell from here your cartilage is doing just fine. Enjoy it before it hardens and wears away!

At least my tastes have become more refined, I lamented to a friend when stating that I now liked red wine and dark chocolate. She informed me that our tastes buds DIE AS WE AGE. I begged Google to prove her otherwise. It refused.

“As we age, the number of taste buds that we have decreases. This usually begins to occur in our 40s if we're female or in our 50s if we're male. At the same time, our remaining taste buds also begin to shrink, or atrophy, and do not function as well.”

Listen, sorry to be a buzz kill. I don’t know where the silver lining in the Golden Years lies. The Cosmo magazines I dog eared in my 20’s, promising I’d have my life and confidence perfected by my 40’s was a crock for me. Many days I still feel like that insecure teenager trying to figure out how the rest of the world seems to know how to navigate life with much more finesse than I possess.

But I do know there is power in sharing the most vulnerable parts of our soul, and maybe, just maybe you feel this way too. 

With Love and Fiber,

Chrissy

Monday, October 17, 2022

Big Fresno Fair 2022

 The best time to write, is the worst time to write. I know this to be true. 

It's like exercise- the more you attempt to talk yourself out of it- the more likely you need it. But I don't want to. I love having written, but sometimes I dread stirring up the sludge. 

I wish it was 100% easier to find a good fitting therapist- somewhere you could approach it like a dating site. Swiping this way or that for potential matches. Especially in my 20/30's, I've gone to and left more therapists than hair colorists, and that's saying a lot. I remember I went to a woman's house for therapy- I found her through insurance and didn't even realize it was a house until I pulled up. This is pre everyone has a cell phone and pre GPS. Ohmyword, the anxiety. IS MAPQUEST RIGHT?! This can't be right?! 

"I hope you like cats?" she asked as little Pepper bounced like a box spring across my lap, leaving a tiny little blob of goo on my pants. What in the heck are you supposed to say to that if you are, in fact a licensed and card carrying dog person? 

"Yes! Love them!" I let her know because I am a caring good person with wonky mental health. I swiped the goo away with a smile, and immediately realized it was poo. For our entire hour together I tried to not focus on how horrible my finger smelled. 

Needless to say, good therapy is hard to find, so today my therapy comes in the form of these little taps on this here machine in front of me. 

I had the worst night of sleep last night. I started my period, and I was ragingly awake at about 1am. Then the thinking demons pounced on my vulnerable brain asking me who would take care of Greyson and Parker when I die. Where will they go. I had a transition meeting for Grey who has "aged out" of ABA, and we discussed horrible things like Group Homes and Conservatorships. I can't say this out loud for fear of literally turning to dust. Worst than childbirth without an epidural.

In my pitch black room I ran my hands over Laney's fur, literally the softest I've ever felt, and reminded myself - Answers don't come from the sharp place of fear. They come in the calm. And like Johnny Depp in Nightmare on Elm Street- I turned my back to those demons. I know better than to try and reason with them. Depriving them of oxygen is the only way to survive.




Which reminds me- We adopted Laney! The Momma pup we had been fostering. Her baby has been adopted out to a wonderful family and I am so happy. Like- if I had to write the perfect family for her into existence it would be them. She follows us and reached out to me on Facebook! The first several days were brutal, which was expected, but exponentially greater than I imagined. Part of my grief was the loss of her joy and absolute zest for life in our house. She filled us all with life. Part of my grief was Laney's grief. For the first few nights, we literally clung to each other as we sweatily slept. One night she was pressed against my side, so I lifted my shirt up to expose my stomach for her to lie against. OHMYGOD, Chrissy- you are skin to skin'ing with a DOG?! The part of me that knew it was absurd emphatically stated.  "I know, I know, but it's who I am." 


She couldn't eat dinner for a day or two, so neither could I. And each day we found ways to make our own joy to counteract the sad. We get updates from Baby- now Daisy's human Momma, and I tell and show Laney with a smile and maybe some tears in my eyes. 


Look how big she's getting. One of her ears is turned back!!!❤️ 

REMINDER: When given the choice to love, take it every time. Even if you know it might hurt. What an honor it is to love.

Yesterday we went to the Big Fresno Fair. We go every year, and I can tell you with certainty, Grey likes it more than Disneyland. Which is what I kept reminding myself yesterday morning as I got ready and was a tiny bit dreading it. (OK fine, alot bit).

My tiny humans are almost as tall as me.


This is his absolute FAVORITE. This is the first year he's been able to get on the swing and buckle himself in all on his own. It makes me so happy, and a tiny bit sad.


Grey was here for all the spinning rides.



And he was here for the fun and food



Obligatory Ice Cream Pic 2022


2016




2017


I know how fast this parenting and life gig goes, but boy do pictures remind me. So many perfect moments. (Click, click, click). Hold on tight my friend, and enjoy the ride.


Thursday, September 8, 2022

I believe...

I believe that you are much much too hard on yourself. I'm talking to both of us, so listen up us.

I believe that a flushed face after exercise and a song you play over and over and over again, and belly laughs with a friend over the most ridiculous thing are reminders of how good it feels to be alive. Touchstones, a quintessential part of a life well lived.

I believe life is hard for every single one of us. We all want to quit. We all feel like we are failing in 4 out of 7 of our life categories. Or maybe it's more like 14 out of 27. I don't know- I didn't pass the required math class for a Communications Management Major until my Senior year. And I think it was my third time taking it. 

I believe that whatever you look for, you will find. I feel so sad for the people who only look for bad, but pretend like that's actually all that exists. 

I believe that we wear our pain in our body, and we simply must get it out. Last year I had to get a tooth pulled to prepare for a dental implant (YES! It's as fun as it sounds!). As I felt the most intense pull and heard the crack of the roots release, I wanted to start to scream and sob. Not because it hurt, (thank God I was numb). But because I could feel this stored sadness and fear and anxiety coming out, deep in my bones. It was in incredibly intense feeling, and a reminder that we must talk, or write or exercise or create these feelings out. An occasional cry or adult beverage works too, unless it's daily. A lot of people drink to get their feelings out, but it doesn't work. It just hides them like dust swept under the bed. It adds up.

What a week. It was shorter, life was closed on Monday for Labor Day. I'm giddily anticipating Friday. Yes, giddily is a word- as a non-math, Communication Major, I should know.

I think a lot about what the boys' futures might look like. Sometimes those thoughts come like demons in the middle of the night. Note: nothing productive comes from those late night sessions, yet at times, they still occur. "It's time for sleep, I will not entertain you right now," I tell them. Sometimes it works. 

I know the boys are brilliant, and talented and so much more intelligent than any test can show. I don't say that in a patronizing or wishful way- it's a damn fact. As they get older, meetings and evaluations discuss long term plans. Vocational Goals. Job Skills. That is often the part of the meeting where I am physically sitting there but I go to Sephora or Cancun in my mind. If there was an overload alarm I would be blinking and beeping. 


I've been thinking hard about what life will look like when they age out of services. For some therapies- like Behavior Therapy- that's coming up very soon. Thank you Managed Care! I like you as much as dental implants! That's when I came up with the idea to ride the current social media/world trend and do "Content Creator" or "influencer" work with the boys. The "i" word- influencer-seriously makes me want to gag. I instantly picture a perfectly groomed girl with 22' beaded row extensions, and tarantula eyelash extensions, constantly using the word, "obsessed" to describe anything they find decent enough to promote. The truth is, we are all influencers in our lives and in the world. Influence: the capacity to have an effect on the character, development, or behavior of someone or something, or the effect itself. It's a noun/verb that should never be used recklessly. Ok I'll stop. I am madly in love with words and their meaning so sometimes I get a little too literal with the ones that feel sacred to me.





But I love shopping, living and sharing. And my boys do too, plus, they are pretty darn cute. Parker and I made a video asking for help to get to 10,000 followers on Instagram. That is sometimes a minimum milestone brands and companies look for. It's called "micro-influncer" omg, I hope you are laughing too. Maybe I'm just too old for this shit. 😂 (Hey! I just realized I can put emojis on here now!) 

 

There were lots of shares and kind words. I was like- This is AWESOME! We will get 1,800 and totally hit 10,000 and more! I will do whatever it takes to make this happen. 

Now, six days later, We still need 1,477. I even had a few unlikes today (thanks buttholes, WHY DON'T YOU LIKE ME?! 😂) My mindset is- This is stupid. We will NEVER hit 10,000. And I don't care anyway. In fact, I quit trying to get to 10,000. I don't care! We can do this without that number. 


I've realized this is almost always my middle mind set when something is hard. (Fine! I didn't want you anyway!) But when I stick with it- through the hard part, through the vulnerable parts- that's when I succeed. When I excel. When I tackle it like a full time job and I'm employee of the month. I'm ready for my plaque.

Anyway, since I've started writing this post, I remembered, truly, it's never going to be about numbers for me- connections and creation are so much more meaningful to me. The most important influencer we will ever be is the one inside our own home.


So Much Love,

Chrissy

FOLLOW US on Instagram HERE!


 



 

Saturday, September 3, 2022

vulnerability

Vulnerability.

I crave it in connection and communication with others. Envy it when I see it in big doses in others. It escapes from me like a tiny hole in a pool raft when I write, when I love, when I connect. I feels so awful and then so good.

Vulnerability and authenticity. I am a bug and they are the light I can't get close enough to. Yet, somehow, it still feels like the place from which I run. The place that holds the dark. The place that if you saw, if you knew me, you would see how incredibly flawed I am. How hard it is sometimes to show up in the world feeling so freaking exposed. 

Where does this come from? Is this the 9 year old girl who had to go on a high dose of prednisone to stay alive? I was in the hospital for 5 weeks and 3 days, I remember a priest in my room, performing the sacrament- the Anointing of the Sick. This Catholic sacrament is administered to bring spiritual and even physical strength during an illness, especially near the time of death. It is most likely one of the last sacraments one will receive. I had to have surgery to have a biopsy of my lung taken so they could send it to other hospitals, hoping for help in diagnosing the super sick little girl.

What are the odds of her surviving the surgery? My Mom asked my Doctor during rounds.

Let's step into the hall and talk, the Doctor responded. 

And that's when I thought I was going to die. I very well could have, and that's what my Mom was told in the echoing hallway. My heart pounded in my chest. I couldn't breathe, not just from the anxiety, but literally- it was so hard to breathe. I had been sick for a year. In and out of my pediatrician's office. On constant antibiotic after antibiotic. 

They finally found a diagnosis, the second ever pediatric case of Desquamative Interstitial Pneumonitis, a disease almost exclusively reserved for smokers and ex coal miners. I was on a high dose of steroids to stay alive for several years. I remember going home from the hospital. Signs scattered throughout my neighborhood, welcoming me home. All the neighbors waiting as my car pulled up.

I was hideous. That's what I told myself every time I looked in the mirror. My body was so tiny, weak from being sick for so long. My face was huge and swollen- a side effect of the medicine. Everyone looked so tan and healthy- flushed with August heat and the glow of swimming pools and Summer. I was sickly pale, having spent my Summer in a stale hospital room with glowing florescent lights and a tiny box TV hung from the ceiling. 

I remember telling my mom I was so ugly and so fat. She said it was the medication, and without it, I wouldn't be alive. I told her then I wish I wasn't alive. I hated that weak, sickly girl I saw in the mirror. 

Next, I was diagnosed with scoliosis. (Unrelated.) I had to wear a back brace during pre and teenage years. I would go to school early so I could hide my brace in my locker. I felt like such a freak. I learned how to use humor and made fun of myself so I could beat others to the punch. I had an eating disorder my Junior year of high school. I still only saw the chubby, prednisone full 9 year old kid. But now with a back brace.

These things- the things that you think you are over, are sometimes buried so deep in your bones. I am crying as I type this, realizing just how much sadness is still in there. Tears rolling down my face. So much imposter syndrome. So much- not skinny enough, too sickly, too weak. You weren't supposed to talk it out then- it was, Suck it up buttercup. You are lucky to be alive. 

But we go on living- right? We try our damndest to learn what we are supposed to learn. We move on. We learn to love ourself- or at least we try. But sometimes, it's so freaking hard. Sometimes I still see the sick, chubby, pale girl in the mirror. I know I can't always trust my eyes, or my perspective. It's triggered when I'm sick or hurt and don't know why. It's triggered by my skin in the Summer- I have vitiligo, (a condition in which the skin loses its pigment, which results in discolored patches in different areas of the body). Sometimes I want to cover my body and hide. That's hard when it's 110 degrees out. It's triggered when I feel like the only different in a room full of sames. It's triggered sometimes by social media- a place that sometimes feels so hard to navigate while imposter syndrome and a need to be liked is so much bigger than I know what to do with. 

I was laughing to myself this morning as I put on self tanner. Me: I want to be completely authentic and fully myself. But also, self tan, whiten my teeth, and get Botox. Ya know?!

I was recently interviewed for my friend Wendy's podcast called, What I Meant to Say. Regarding being inclusive of those with Disabilities, I said, 

“I think it starts with really bringing our own differences to light and examining them because we can’t love and accept differences if we carry shame for our own differences.” 

And I believe that, so I do the work. We are on week 2 of fostering two sweet puppies. It's hard, but getting easier as we establish our routine. It's also achingly beautiful. This experience is here to teach me, and I am ready to learn. 







Momma Laney has been an incredible Teacher for me. I had never seen a nursing pup before, and she came to us with sagging nipples and hanging skin. (I just googled, Do Dogs have Boobs? because I didn't know what to call them.) Oh mylanta. At first I was wide eyed and shocked. Ewwww, I don't want to touch them by mistake. Why are they so...hanging?!* I wondered. And then I saw the magic of nature. I saw Momma nursing her baby. I pet Laney without worry that I would touch her tummy by mistake. I realized how freaking beautiful she is, and how beautiful nursing is. I remembered that we are so much more than a feature that is different. Loving her, has helped me love myself. I'm serious.

Self-acceptance. So that's the work I'm doing right now, with you here. It feels awful. The tears have stopped flowing and I feel better. Lighter. Knowing that the uncomfortable is where we really grow and change. I love you, just the way you are, and I am working to love myself just the same. 


XOXO,

Chrissy


* OK, fine mine were like that after nursing, and that's why I still wear a bra to bed. 

Sunday, August 21, 2022

From Inclusion to Life

Sometimes it feels like we are looking through a glass partition at life. My palms are placed flat on either side of my face as I gaze in longingly, wondering what it would feel like to be on the other side. The side where people don't even realize they are included- because it's all they've ever known.

It takes effort to include. In my experience, the times my boys or I have been excluded wasn't because someone was purposely being mean, it's just that they forgot about us, or just didn't think to include us.  And I can tell you with tears in my eyes and the deepest ache in my heart, it hurts all the same. 

I'm the type of person who, when I see something I truly need, I will do whatever it takes to make it happen. I don't take no for an answer. If it doesn't exist I'll do what I can to make it. Especially when it comes to my boys. 

But Inclusion... it's something that keeps me awake at night. It's something we've had to fight for in almost every aspect of living, this is not a topic that is limited to Education. We fight for a place at the proverbial table-to be included. At times it's been mildly frustrating, and times downright gutting. You have to be polite when you do it- so the very group you want to include might be more willing to do so in the future, even if your heart has been broken over it 100 times before. Can we come too? I promise! We don't take up much room! We won't get in the way! It makes me sad, to have to advocate for what should be every human's right- to be included. To be welcomed. To been seen as adding value simply because we exist. 

It takes a Village to raise a child, they say, but sometimes that Village does not exist for families like mine. I don't think we should be relegated to a Special Needs only Village- which is what the world so often tries to do. Can't you just hang out with your own kind? Won't you be more comfortable there? (Which really means- we won't make you uncomfortable.) I'm so glad Special Needs Sports Team and Proms and Classes and Clubs and Special Movies with Sensory screenings exist- they fill in a gap of participation and belonging that many people with Disabilities need and love. 

But that's not what my boys need and want. They wan't to participate with EVERYONE while at the same time- being their perfectly atypical selves. They want to play with friends and to be invited over to hang out. They want to participate in activities that other kids their same age participate in. But they aren't, or they aren't allowed to in some cases. It's a vital part of childhood for others, it was for me- but for them- it simply does not exist. The playdates and sleep overs, the clubs, the bike rides, having a best friend they can hang with... It builds up in my Momma heart. It's lonely. It's part of why we are exploring moving to St. Louis- with the hopes that there will be a place for my whole family to be included. Schools and a Catholic Church and neighborhoods and playdates and Family BBQ's and more. 

My friend Wendy has a beautiful Podcast called, What I Meant To Say. She shares, "I believe that the greatest gift we can give to the next generation is our own self-awareness. The goal of this podcast is to connect us through the visions, stories, and life lessons of people rising in sports, business & life and uncover the optimism that is sometimes front and center, and other times under the surface." Wendy has the truest perspective for the World, and an optimistic vision for the Future. No one makes me feel more myself, and I don't think anyone makes me feel as seen. I love the way she sees my boys so dang much, a view always centered around strengths and gifts. I am so grateful for her friendship. 

In an Episode of What I Meant to Say launching Wednesday, August 24th, fueled by the beginning of the 2022/2023 School Year, Wendy and I have a deep conversation about Inclusion. There's no better time than to build an inclusive world than at the beginning of something new. 

Speaking of Inclusion, this week the family and I are trying a new adventure. We are fostering Momma Laney, and her 4 week old puppy. 







We are on Day 3, and each day it's gotten a little easier. It's hard work, and not for the people who like a clean and chaos free house. Lucy and Oliver are adjusting really well. The boys love it. It's been hard but beautiful. They are reminding me that life isn't fair, that we don't all get the very basics of what we deserve- like love and a home to live in. But Momma and Babe are so very perfect and worthy of love. Just because we may not be included, doesn't mean we aren't worthy of it. I wish Laney could talk and tell me her story, like there were other pups in her litter. (I cry thinking about it all.) They both still have the ability to dole out unlimited tail wags and kisses, despite their hard knock circumstances. I don't know why we get the stories we are given. Especially the sad ones. But I do know that we are all given the ability to write our own happy ending.





Sunday, August 14, 2022

Every little thing is alright

Big Breaths


In ……. Whoosh


Out… Ahhhhhhh


You can do it little buddy. You got this.

I have a confession- In this story I am 'little buddy'. And anxiety is coursing through my veins, it’s dancing in my stomach, it’s stomping on my chest. Freaking anxiety. My wingman. My liar asshole wingman (you can’t do this, this is too hard. You are doing it wrong. Danger up ahead) Non sequitur time. (I am superb at those. And bonus points to those of you who use  non sequitur this week in a sentence).

non se·qui·tur

/ˌnän ˈsekwədər/ noun

1. a conclusion or statement that does not logically follow from the previous argument or statement.

Michael and I are getting extra life insurance on each other. Don’t worry- it was my idea. Otherwise that would absolutely mean he was just about to murder me according to every single Dateline I’ve ever watched. This process is a real pain in the ass and involves all the things I HATE. Talking on the phone. Talking on the phone to a STRANGER. Talking to a stranger on the phone about private MEDICAL things. Nothing makes me feel older and more pathetic than listing all my ailments- ESPECIALLY as someone who works so dang hard to exercise and eat healthy and take more supplements than I can count on one hand.


Familial high cholesterol 

Hashimotos thyroidistis 

Degenerative disk disease

Anxiety/depression

5 yes FIVE herniated disks…. I’m going to stop now. I’m depressed. 


Then I had to fill out things, and fill out things to get access to my medical records. FINALLY we got a phone call that my account was approved with some changes made to our initial request- a decrease in coverage and increase in cost that they would discuss with me on a phone call.  After playing phone tag for a couple of days, I finally connect with the super nice but for sure ex radio DJ on the phone.

Christina Kelly! I’d just like to go over some information (all said in a booming game show announcer voice). We DID approve you, but not at the original amount because of the following conditions:

  • You are 5 ft 2 inches and weigh 170 lbs.
  • You are being treated for anxiety


My eyes go wide. I feel anxious, even a little ashamed, like I screwed up at something. Ummm…..I don’t weigh 170. 170? It says 170? (I feel like he thinks I’m lying and I need to talk extra to prove I’m not lying.) I can send you a picture. (Stop talking Chrissy).

"I don’t weigh that. I weigh 115. Maaaaybe 117 after a long weekend. Maybe someone confused 117 with 170?" I say.

"I’ll look into that with the department who put your file together and we can get to the bottom of this. Is it true that you are being treated for anxiety?"

"Well… Yes, I do have anxiety and I’m taking medication for it. I don’t see anyone about it though- I should (stop talking Chrissy). So- does that count as “being treated?” (stop talking Chrissy).


Turns out, it does. Which is fine. I didn’t want to ask the guy any more questions, I just wanted to be off the phone. I figured I would ask any questions I hadn’t yet processed to my friend Google in the privacy of my own non-judgemental computer. 


Google said, 
Because anxiety can have a major impact on both your physical and mental health, life insurers typically treat anxiety as a very serious disease, similar to heart disease or other physical ailments that may shorten your lifespan. As a result, having anxiety can make it more difficult to get approved for life insurance coverage — and can also affect what you’d pay for an insurance policy.


WHAT?! My anxiety got worse reading about it. HAHAHA! Why do they even have to include that info? Why do I feel like I did something wrong by having anxiety?! WHY IS ANXIETY COSTING ME MONEY? I DIDN’T DO ANYTHING WRONG. YES YOU DID STOP BEING ANXIOUS. This is all out of my control, so I just keep breathing and stop thinking about it. (Anxiety is HARD WORK).


Anywho- flash forward to today. Sunday August 14, 2022. Tomorrow starts a new School Year Schedule change. (We had just, ALMOST figured out our Summer schedule). I used to blame my TOTAL schedule change anxiety on Grey. I just get anxious because HE is anxious. Every autistic kid is different but for Grey it absolutely means struggles with transition and change. Although he does get super duper anxious- I have my very own pot of anxious brewing on the stove at most times, but schedule change brings it from the back to the front burner. I have to work to separate his fear from mine.


WHY so anxious? I ask myself. I want to do it perfectly. I want to support and remember things and times. I want to make each boy a visual schedule which is VITAL for their life when we have any big schedule change. As I type out my specific worries/concerns they look ridiculous to take up space in my brain. That’s what anxiety does, I remember. Lies and tells me every little thing- is NOT going to be alright. 

But it is-right my friend? It is. Every little thing is.


Today the most perfect words found me at the most perfect time. It’s a Ted Talk by Caroline Myss- Choices that change your Life. This 25 minute ted talk is Liquid Golden sunshine. You must listen.



She shares, "I want to emphasize the power of choice. And perhaps there was a time when we wouldn’t even talk about it, but we have to talk about it today.

Because choice is a fundamental power of the human experience. We need to put choice as an authority, as a power that is so huge, that if I ran the world… I would make studying the power of choice part of every e school curriculum .That everyone should learn, that the power of the choices you make have infinite consequences. From the littlest choice to something that is great big, huge- and that – here’s the paradox, you have no idea what a little choice is, or a big choice. What we are used to doing, is believing that a big choice is an obvious one: buying a house, getting married, getting a divorce. In fact, those are your small choices. The choices that actually matter when it comes to your health, when it comes to healing, when it comes to positioning yourself, empowering yourself, are the tiny ones that-or the choices I should say, that you think have the least power, that you make in the privacy of your own company, that perhaps you think are the most insignificant, I have found repeatedly, repeatedly, are the most powerful choices of your life, the most powerful. That have the most powerful impact on your biology, on your soul, on your sense of who you are, on your well being on your whole life map

You can watch the whole talk HERE.



Myss talks about looking to the future to make choices, because the past us no longer exists. “Be in the newness. Not afraid of it. Be in that newness. Be there.”


The switch flipped in my head as I walked to the bright light of the newness. I showed Grey his new schedule and I comforted him as his hands shook and big old globe sized tears chased each other down his cheeks. He went to his Summer Schedule (which had less hours of work) and said, “This one, this one, this one” over and over. I remembered we had a choice.


Now it's time for new, and there will be good things in it. That schedule is over. And this week will be hard but then it will get easy. You can do this, because you are so smart and so strong, and I am here to help you. 



We slid into my bed, turned off the lights and closed the door. "Do you want me to go or stay here with you? I asked him. "Stay here" he said. So I did. And we breathed in and out and remembered every little thing WILL be alright. It always is.

Good luck to you in your life transitions these next few weeks too my friend. 

XOXO,
Chrissy 

Thursday, August 4, 2022

the lost art of story telling

My goal in writing this blog has always been one thing. World domination. 


Ok, fine, I’m kidding. But I do want to reach as many people as humanly possible with my words on this screen. I want to talk about capital L Life and connect with like and opposite minded people. Genuine connection. Genuine conversation. I want to talk about Diversity and autism and acceptance, because boy have my boys taught me more about the human experience in ten years than I learned in my entire life before that. I want to talk about the difficulties in accepting the differences in our own selves, because how can we truly celebrate diversity in others, if we hide our own differences in shame? I am a big old work in progress, and I believe examining and understanding our own patterns in life can help us see where we are stuck or holding ourselves back. We all deserved to be loved, exactly the way we are. 

I love a good story. Reading takes me places the world can’t or won’t. It takes my brain out of its overthinking circle. When I read, I am free. I love writing almost as much, although it takes more effort. It’s a way to release, to connect, to organize thoughts and to make sense of things that don’t always make sense at first. It’s kind of like working out- I often dread it before, and then once I start I wonder- why don’t I do this more?! When I’m writing, I feel most like me. 


When do you feel most like you? I think that holds very important answers to questions we don’t ask ourselves nearly enough.


Recently the boys and I participated in a promotion for our local mall. Basically, we got to go shopping and then I shared about it on social media. Like many of you, I have a love/hate relationship with Social Media. I love the education and the connections it provides, but it also often opens the doors to comparisons that leave me feeling annoyed or less than. It feels like so much of it now is a person selling only a product with an image of themselves or their life in a way that feels incredibly inauthentic. There’s a huge focus on what we look like, what we buy and what our life looks like from the outside in. Much of it is curated to be on trend and on brand, to look perfect and to be aesthetically pleasing to the eye. I love beautiful pictures, but also long for a big dose of reality mixed in.


As I was putting together a reel of our shopping experience, I decided I would enjoy the experience of storytelling through pictures and videos. I’ve always run full speed away from anything remotely “influencer”y. (Ironically, I am easily influenced and let Instagram tell me what I need to buy on the regular.) But over the past several months, I found myself wanting to engage in that realm with my boys. 


I didn’t grow up knowing much at all about “Special Needs” anything. When I was exposed, I was uncomfortable. Back then the world rules were- “Don’t stare and don’t ask questions.” There was an unspoken, (and sometimes spoken) message that these people were broken and to be pitied. We mustn’t make them feel worse than surely they are already feeling! Anyone who engaged with these individuals as parents or teachers were “Saints!” and “Angels”! 


Fast forward to three months before my first-born son-Greyson’s -Third birthday, diagnosis day. The day I realized we were part of that club, even though we never asked to join it. There was a long parenthesis of time after that contained mourning and fear and deep sadness and loss. We had no choice but to go through the motions of living life. And in doing so I slowly began to realize- in so many ways- that the story I had been sold about Special Needs and Disability was wrong, and that we could still have a beautiful life. I searched online far and wide for someone who could show me- yes, life will be hard, harder than most- but it will also be MORE beautiful too. I couldn’t find it so I began relentless photographing my boys and writing in this blog to remind myself- and to show others, that life is whatever you set out to make it. I wanted the world to see as much good in my boys as I do. 


It’s been ten years now. And I’ve forgotten and remembered my purpose too many times to count. I’ve let the world leave me feeling defeated, and confused. The irony is that my boys’ diagnosis isn’t what leaves me gutted- it’s the world who isn’t always accepting of different. A world that loves hashtags about diversity and autism inclusion once a year, and then goes back to being its regular mean girl self when the month on the calendar flips. I’ve realized there are so many more good folks than bad, but like the iconic scene from the movie Pretty Woman says:

Vivian: People put you down enough, you start to believe it.


Edward Lewis: I think you are a very bright, very special woman.


Vivian: The bad stuff is easier to believe. You ever notice that?

The bad parts are easy to remember. 


I wrote about Diversity in Advertising in before it was “on trend” (must be said with a snotty accent) back in 2014 HERE. In it I share:

But the world still needs more real and less perfect. I want to help you show the world what we as their parents already have the privilege of knowing- These are some of the most amazing and beautiful children in the world, and they deserve to be seen and celebrated. These kids struggle to overcome things that come so easily to the rest of us. Things we take for granted. They teach us about patience, hard work, unconditional love and how to find the truest of beauty in the unexpected.


And recently I realized- Being an influencer is actually perfect for us! It doesn’t have to be synonymous with fake and expertly curated. It exposes people to Special Needs in ways I wasn’t growing up. It gives other people with Disabilities someone who is relatable. And I get to control the content making sure it’s in line with things my boys do and love anyway. I can combine my love for telling a story and taking pictures. Here are some outtakes from our afternoon...



Will Work for Ice Cream 



I’m trying to learn how to connect with an audience who doesn't often value the art of telling a story in more than one slide or ten seconds.Time Magazine wrote an article You Now Have a Shorter Attention Span Than a Goldfish.

"The average attention span for the notoriously ill-focused goldfish is nine seconds, but according to a new study from Microsoft Corp., people now generally lose concentration after eight seconds, highlighting the effects of an increasingly digitalized lifestyle on the brain.

But I’m committed to keep living our story, and to keep sharing it while remaining true to my boys and myself in the hopes that one day the world will see what I see.





Plus, we get to have fun while doing it. I think there are more of us who love a good story here on earth still than we realize.

XOXO,

Chrissy


Here's our final Reel HERE