Rainbow Bow Baby

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Rainbow Bow Baby

This is Alex Rolins.

She is our Rainbow Bow Baby.

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To be a rainbow baby, means to be born after a miscarriage. As this week we celebrated National Rainbow Baby day, I thought this post was timely.

As I’ve shared before, after the 11 IUIS and one IVF it took to conceive the twins, my wife and I suffered one miscarriage through IVF.

I can remember, at the time, I thought that if I worked hard enough, and did everything right, we could continue to have it all.

I could continue to chase my growing career at an organization that I cared about, so much so, that I thought I could carry a pregnancy during one of our busiest weeks of the year, for one of our most important, and most stressful events.

I even thought I could travel across the country at only four weeks pregnant, on very little sleep as it was, to work 18 hour days, four days straight.

I remember what it felt like to recognize feeling pregnant. I didn’t have that with the twins, because I got so sick so quickly, that it felt more like a ton of bricks. There wasn’t any subtly about it. Almost like flirting. When you recognize the flutter, and you think- what if?

I remember looking at my face and seeing the glow… no, not the kind from the Rodan + Fields Hydration Serum ;P Although, that does make me glow, haha.

The different “glow”. The “it” factor. I had it. I was pregnant, and I was sure of it.

It was confirmed before I got on that plane. I even proudly told the stewardess I’d need to board the flight first, because I was pregnant, and needed optimal seating.

I knew I was pregnant when I raced through the airport, after working for the eight-hour flight, only to continue the hustle on my phone all the way to the hotel.

I knew as I met colleagues that continued to pour on to the West Coast, even though I kept it to myself, not wanting to share the news just yet, afraid they’d hold me back at working as hard as I knew I’d need to over the next few days.

The night of the event, as everything went off smoothly, and I ran into one of my favorite people in the lobby, and felt that I just needed to tell him. My smile beamed ear to ear as I whispered my secret, begging him to keep it.

I knew the morning after as I cried in the hotel restaurant to a friend, both out of exhaustion, but also out of disappointment that all the work and hours and sacrifice I had put in, hadn’t been enough the night before to hit our goal.

I just didn’t know how much I had sacrificed until a week later.

When we got pregnant with Alex, or Alli as we adoringly call her, I got to feel that glow again, and experience every first with a new, more appreciative set of eyes.

After you’ve lost something, you have this strong sense of purpose in appreciating it when love returns to fill the gap it left.

Alli isn’t only our Rainbow Baby… but she is our Bow Baby as well, meaning she’s completed our family, and tied a bow on all the work it took to get here.

She is our light. She is our joy. She is our HAM.


This girl’s boogie is better than most, as she insists on shaking what her mama’s gave her.

Her smile is infectious, and even at a young age - she is funny.

She has the kindest heart.

And she gives the BEST hugs. (Ask the girls at daycare - they fight over getting them when she arrives. And not her classmates- her teachers.)

Alli is our Rainbow Bow Baby. And we simply cannot imagine life without her.

Through COVID, she’s reminded me that the dream I thought I was chasing, wasn’t the one I was supposed to be part of. This… all of this incredible life my wife and I have put together is the dream I always had, always wanted, and always knew I deserved.

To all the Rainbow Babies out there… the souls we carry as long as you let us, that touch our hearts, softening them while strengthening them at the same time, you are always with us.

To all the parents of Rainbow Babies, my hope is that your lives were both enriched because of and despite of the rainbows that will always be yours.

And to the parents who are waiting for the beauty of the rainbow, remember that this life is the only one we have, and perspective between the storm and the sunlight that hits the dew to create those prisms is yours and yours alone. Everything that’s hard in this life is beautiful, and collateral beauty is only for those who are strong enough to accept it. You are not alone. I see you. Just wait for this storm to pass. XO


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Autism Won Today

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Autism Won Today

Someone asked me what it meant when I said “Autism won today”, and I realized that it may be a common phrase heard, but not understood, and the explanation may be helpful if shared.

As I’ve explained many times, each child is unique, just as each human is unique, and because of this, each diagnosis, and the behavior to it is unique as well. For our household, the following are times in the last week that I’ve used the expression “Autism Won Today”:

  • When Luca broke our TV screen protector, that we purchased to protect the new TV after he broke the last one.

  • When Jack’s inability to have a calm body meant that he kicked his sister so hard in the face it left a heal of a bruise on her cheek for the week. Have fun explaining that one to daycare!

  • But when autism really won this week, was when I sat in the car, after carrying a kicking and screaming Luca, who yelled “Help Me. Listen to me. I don’t like you”, clawing at my arms and pulling my hair, as we passed a security guard. I sat for a full 60 seconds, tears streaming down my face, wondering if he planned to follow me out of the store - but thought better not to because we looked to be above his pay grade for that kind of drama. He didn’t know that Luca was disappointed in their lack of sea animal figurines. 

I never say “Autism Won”, by itself, because like most care-givers parenting autism, we are in constant battle-mode- and even if it gets us for a moment, we are agile… we fight back… we learn… we adjust… we recollect ourselves and return to the fight stronger, wiser, and faster the next time.

Want to know how I won this week?

  • When Luca was able to tell Jack, “You’re too loud Jack. Please stop.” In FULL sentences, and he turned and went into the room on his own, like I have been showing him for weeks.

  • When Jack chose to “hulk smash” on the trampoline instead of pummeling Luca, working out his frustration on the bounce versus the brother.

  • And when I wrote this blog post, while three kids sat at the table, eating their dinner, and my wife’s dinner was simmering on the stove. Yes, all three had iPads, and I’ll admit it because I’m all about the honesty here… but if you judge that last part- you can go sit on your smug mountain and watch from a distance because judgement is not welcome here. I’m kicking ass and taking names today. Period.

Here’s hoping you are in the lead today, or that even better, you’ve gotten past the need to keep score, because living in the moment of it has become enough. Keep fighting… if anything, just keep going. You’ve got this. And like Glennon Doyle says, “We can do hard things.” Because: we can. Xo

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Literally, why not?

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Literally, why not?

It’s been a while since I’ve found time to sit and share about our journey.

Our days have been full of swinging until we feel like we are flying… jumping until we “hulk smash”… and exploring every play ground Southern New Hampshire has to offer.

However, there are two lessons that autism has taught me over the last few weeks, that I keep trying to find the time to share.

These two lessons, come from Captain Jack, as he loves to be called these days.

The first, is one I was prepared for: how autism takes everything literally.

As Jack’s speech has become such an enjoyable conversation lately, I find that he and I have the most interesting talks. Now, mind you, we are working on quiet voices, like it’s our job, but in general, he’s just so much fun.

When the boys were first diagnosed, I read every book I could get my hands on, and in each one they explained that many on the spectrum had a hard time understanding euphemisms. This is true for Jack.

One morning, while we were racing to get everyone out the door, and Luca was loving hiding under his sensory sheet in bed, I yelled up the stairs, “Luca, you’re going to miss the bus!”

I meant that my vehicle with all three children needed to leave in 10 minutes.

Jack ran to me super excited and said: “We get to take the bus today!”

Yea. Didn’t see that one coming.

I had to take the 10 minutes we had left explaining what I meant, to a very sad boy who had been wanting the bus to come all summer. When we finally got every one strapped in the car, his teary-eyed face said to me weepy, “Mommy, next time just tell Luca ‘we’re going to be late’, so it doesn’t make me so sad.”

The other fun one that makes me laugh is that while Jack was asking for something (for what felt like the 1,000th time) in the kitchen, I said, “Jack, please give me a minute before I walk off a cliff!”

(Dramatic, I know, but our boy is so incessant, I promise, it was warranted.)

He looked at me, dumbfounded, and said, “are we going on a hike with Auntie today?”.

Completely missing the boat (there I go again!), I said “no Jack, we are not going on a hike with Auntie today.” To which he responded, “then why are you going to the cliff?”

Yep. That’s our kid.

Now, match this with his new favorite question happens to be, “Why not”, and you’d understand our new perspective on life in the Young household.

Typically, at this age, a child will respond “Why” to everything, as curiosity is the driving force behind the age of 5. Jack, however, asks “Why not?” instead. At first, this drove me crazy, as I consistently felt the need to correct him.

But then, I asked myself, maybe he has it right.

Maybe the better perspective truly is- “Why not?” instead of simply, “Why?

As you go about your day today, I hope you catch all the euphemisms we use, and the moments in which we negatively think, “but why”, and replace them with saying what you mean, and the possibility of “why not”. I’ve found that this shift in approach in our days has give me a new look on life: one that is continuously grateful for all that autism is teaching us.

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Status Quo

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Status Quo

As the warm summer days continue to bring opportunities for our kids to swing until the later hours of the evening, feel the sand between their toes, and splash in waves of both chlorine and sea salt, I’ve found that returning to story telling hasn’t been on top of mind.

Without a current story, I thought a status update may do.

The kids are all in school: Alex in full day, and the twins for an hour a day, three days a week, providing some semblance of a routine. We’ve gone from the mentality where every day simply ends in a “Y”, to having some structure to our week, and that structure has grounded all of our behaviors, emotions, and anxiety.

Monday gets us back into the week’s routine. After school, the boys and I venture back home, tidy the house, play in the back yard, swinging for hours to “Who Let The Dogs Out” or “That’s What I Like About You”… eventually returning indoors for lunch and some quiet time. By the afternoon we visit the pool before heading out to get Alli.

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Tuesdays and Wednesdays we find a shaded playground to share with our friends that are in class with us that morning, elongating that morning routine with needed companionship, laughter, and play. We make it back to the house for lunch, and like most afternoons, spend the beautiful weather by the pool or in the sand box, and of course, those awesome swings were the boys can fly “higher and higher”, squealing with delight.

Thursdays and Fridays are for adventures to Papa’s Beach or up to the Lake with friends. Full day adventures during the hours while their sister is at school allow us to enjoy our weeks, chasing down the “thrive” factor, vs when COVID made us feel fortunate enough to simply “survive” each day.

The weekends we get with Mama, and most often, Auntie Sammy and Granny and Pop Pop. We try to keep them low key so the kids can relax but enjoy the sunlit hours together.

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Our status quo has caught it’s breath lately… in the most needed way. Life is not exciting, but peaceful. We are working on calm bodies and quiet voices in doors, and patience on all ends - both for the boys, but for me as well. I’m learning how to ask Jack to whisper his secrets to me, and to hide his hands in his pockets when I can see him jumping out of his skin.

Luca’s words are coming every day, and the song in his heart has found it’s way out in the most bold and confident arrival. When it rains, he’ll sing “Rain, Rain, Go Away” or “The Itsy Bisty Spider.” When he wants to dance, or is in the pool simply enjoying the weightless movement, the words “dance for me, dance for me, dance for me” from “Dance Monkey” escape his lips with the brightest sparkle in his eyes; and when he’s playing in the sand box lately, the words “what the world needs now, is love, sweet love…” are on repeat, as he’s recently rediscovered “Boss Baby” and the song plays in the credits.

As for sleep, because if you’ve followed our journey, you’ve seen us coin the term “sleepless nights with autism”, Luca’s been on Colonodine for the five weeks, and it’s made such an incredible difference. Even though he will still get up in the middle of the night, instead of a 4 hour stimm, we can get him back to peacefully asleep after 45-60 minutes. I know others who are not as lucky, so for this, I’m truly grateful.

Being a full-time mom, juggling supporting my wife’s business, and trying to chase down a writing career, while working a side hustle with Rodan + Fields has had it’s moments of wonderful, challenging, terrifying, and beautiful. If I’ve learned one thing during COVID and the world shutting down as we know it, only to remind us all that sometimes, what we ask for we shall we receive, is this…

The one thing in this life that we never have enough of is time.

It’s what people wish for as they face their last days, what we waste while we are young and don’t know any better; what we devalue during the days we waste wishing our lives were something different; and what we wish we could freeze in the moments we hope to never forget.

So here’s the status quo being an enjoyment of the current time we have together. I hope to write to you again soon, but until then, you’ll most likely find me pushing an eager child on a swing who just wants to go “higher and higher” until the sun sets.

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Until they tell me otherwise...

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Until they tell me otherwise...

I was talking with another mama today about our kids (shocker, I know), about who we hope they’ll be one day… and I felt Glennon Doyle’s words in the back of my head as I shared the story of the pretty dresses hanging in Alli’s closet that she refuses to wear.

I shared that I had adorable dresses I had bought for our daughter, that made her cry and scream in refusal. My favorite was a light blue and white pinstriped sleeveless, purchased for her second birthday photoshoot. I had set up sunflowers and balloons, and knew if I could just get her to sit for less than 5 minutes, I could permanently freeze the time in place, and remember that moment for years to come. However, when I brought the dress down with coordinating outfits for her brothers (incase the stars aligned and they all decided to pose), she was beyond distraught that it was she who had to wear the dress.

I look back and ask myself- why did I not just give her the white polo and navy shorts like she asked?

What would it really have harmed?

I had this picture of capturing our precious girl “while she would still let me dress her” and got caught up in what I thought it needed to look like, instead of just letting our Alli be Alli- the truest form of what she wanted to be at age 2 in that moment in time.

“Until they tell me otherwise…” is the way Doyle phrased it, when sharing with her audience in her memoir, “Untamed”, that she is raising two daughters and a son.

Until they tell me otherwise…

What an AMAZING way to start the description of one’s children.

As they are little, and two of them still finding their words, there is still so much self-discovery for them, that I feel as if this journey has yet to be defined. For Alex, the fact that she has no interest in dresses is merely a piece of it, not a dictation of what’s ahead. She also loves all things creative like music and arts and crafts, and her favorite thing in this worlds is a pink and white giraffe security blanket that we own 4 of incase one gets ruined.

Growing up scared to live my truth, one of the most important lessons I hope we teach our children is that no one else can be you. Plain and simple. Whoever it is you wish to be will be fully supported by us. No exceptions or expectations otherwise.

Where some children know by the time they are out of diapers, I did not know what my truth was until college. Partly, in fairness, because I never allowed myself to really consider it. I knew I was different. I knew I was scared. I knew I was not happy. I knew I felt unsafe to be true to myself. I battled multiple eating disorders, and struggled with self-harm, because I felt so trapped inside a body which I did not feel safe that I didn’t know how to breath, let alone really be just me.

I share this because, as someone who has grown older, wiser, and able to own the shame in those darker days, I can tell you what it feels like as a child to just simply not know - having not felt safe enough to explore what the answers may be, let alone ask the question.

In a day and age where our society is more accepting, but yet, still discriminatory… where people hold no expectations outside authenticity, but others require you to fit in their uncomfortable box… where some can celebrate the rainbows and uniqueness of every human being, and others still see those colors to mean less… it’s crucial that we continue to change hearts and minds by sharing our story, and it must start with our children.

While on the playground today, I heard a child say to my son that he shouldn’t be wearing pink crocks, because they were for girls. He said, “I like them”, and turned and walked away from him. I could not have been more proud.

It’s ok to dream about the potential somebody’s your children will be one day… but it’s truly important to make them feel comfortable and safe enough to simply be them, whatever discoveries they make along the way.

Until they tell us otherwise, we are raising two boys and one girl; each unique and incredible in their own way, their outcomes still yet to be defined, but so wonderfully open for possibility.

XO

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Mixed Emotions

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Mixed Emotions

You know how people are always saying… “it’s with mixed emotions”, and fully aware of what they mean when they say it?

Today I watched first hand what it feels like to have mixed emotions, and try to process it… through the eyes of a five-year-old.

It was the first day of summer school.

This morning I relived that chaos of a hustle trying to get three kids under the age of 5 out the door to be on time for two different drop offs.

Alex needed a lunch.

The boys were confused why they didn’t need a lunch (they are used to 6 hour days).

Jack couldn’t understand why Ms. Nicole couldn’t pick them up on the bus, and spoke with sincere advocacy that he was a big kid who didn’t need me to drop him off.

I couldn’t find Jack’s backpack, but because they only needed masks and a water bottle, it wasn’t a big deal to combine their belongings into one bag, which logically appeased Jack despite that Luca’s name was on said bag.

When I had to wake Luca up, Jack declared with glee “Luca, come down stairs, we get to go to school today!”

Luca did join us in the kitchen shortly after, with a confused smile on his face.

My wife helped get all three kids in the car, and we were 8 minutes earlier to depart than I had hoped/planned.

After we dropped Alli at school, I explained to the boys what would happen, so they could be prepared. I shared that we would pull up to school, right in front of the door, like the bus would have. When we arrived, they would have their foreheads checked to make sure they weren’t sick, and then their new teachers would help walk them into the building.

Jack was excited. Luca, not as excited, started to get weepy eyed. I assured him that Miss K. would be inside and he would be safe (as his amazing teacher was also our nanny during the last few months, so we had scored fortunate familiarity to make this transition easier). It was as we pulled up to school that the tears started flowing.

It caught me off guard because something was different about it. He was clearly happy to be at school, but something was upsetting him.

After the car was in park, I put my mask on, and made my way around to the back of the car to unbuckle their seat belts. Luca came out of his seat willingly, and even let the nurse take his temperature. He said “school” a number of times and you could see the joy and excitement in his eyes.

But then a teacher he has not met, in a mask, asked to escort him in side. He looked at me with those same excited eyes, and fearful tears escaped them. I reassured him Miss K. would be inside, but he stood frozen - the definition of mixed emotions. As he worked to process his choice- to stay with me where he felt safe, but miss out on what he missed so desperately - or to face the fear in the sincere want to return to the classroom, Miss K. appeared in the doorway.

That boy SPRINTED - with feet so fast it was as if the emotions evaporated in thin air- to the friend/teacher he trusted and needed so much. Tears continued to fall with each step he took, but you could see him choose the uncomfortable fear because he knew in that moment what he needed more than to be safe with his Mom.

Jack happily followed behind him, glowing smile from ear to ear.

I spent 60 minutes in the parking lot, listening to “Untamed” by Glennon Doyle, answering emails and getting work done at the same time.

When the hour was up, the boys exited the building, and Luca was still in his mixed emotions. This time, the tears that escaped his eyes were those of happy tears to have returned, but also sad to have to leave so soon.

It was so powerful. Miss K. reassured me he had been present, and working hard in the classroom without tears. Jack couldn’t wait to share the worksheet he proudly carried in both hands, and was simply elated.

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One of the things I’ve learned with autism, for all those Big Brother fans out there, is you always must “expect the unexpected”. Despite that the twins have the same diagnosis, almost everything about them is different: the way they act, the way they learn, the way they grow- you name it. It’s almost as if they live life unfiltered - without care or comparison.

While they were in class, and I listened to Doyle’s audio book, she spoke about how at age 10 we learn how to categorize ourselves, and determine how it is we expect to act. I hope my boys learn to live life unfiltered with such muscle memory, that it becomes a strategy, and a tool they use to be true to who they are. Never finding a box to fit in… never learning the embarrassment of judgement from others. I hope that both because of and despite their diagnosis, they continue to live this life untamed, as Glennon titled her novel, as Luca had just as we arrived in that parking lot, feeling every emotion as strongly as when he was asked to leave it.

As we exited the parking lot, I too had mixed emotions.

I have been publicly advocating that our twins need to go back to school, to receive the medically diagnosed assistance deemed necessary by the doctors and administrators from the moment I learned school would not open. My grateful heart was thankful for the little summer school opened, providing an hour a day three times a week, but still felt that the 6 hours 4 times a week their IEP stated explained this wasn’t enough.

Today, however, after watching Luca work through his mourning of the school time he had lost, and his joy to be returning, my grateful heart is merely that. I am thankful for today, and for the time they will be in the classroom. I am hopeful that sharing our story will continue to open hearts and minds to understand why children like ours, both those with special needs and those who are gifted, are among a smaller population who need the classroom more than others. I will continue to advocate on their behalf, because I know in my heart they need it to erase the regressions we’ve witnessed over the last 6 months.

But today, with mixed emotions, my heart is smiling and grateful for these boys, and for their ability to be in school at all.


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Why did I have kids?

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Why did I have kids?

Do you ever have those moments when you say, “Why did I have kids?”

Like when you step on a toy, and it hurts so bad that your eyes squint and your fists ball up?

Or when you’ve just cleaned up said toys from the floor, turned your back to move to the sink to do the dishes, and hear the container of toys you picked up spilled back onto the floor?

Or when those toys that have now been spilled back on the floor, are now being thrown across the room by siblings during target practice?

How about when you are scrolling through social media, and see the following:

Friends on white sandy beaches, drink in hand, enjoying a vacation you can’t go on for at least another five years…

Or those same friends are showing off their bikini bodies that haven’t changed since high school, forget working to get those bodies back after having said children… (thanks for the stretch marks kids!)

I find myself scrolling and thinking… why did I have kids?

And then I snap out of the day dream, and hear a child scream, because one sibling shoved someone, or pulled hair, or tripped the other…

I chase after each to separate, divert, redirect… settle the kids down… grab plates of food from the table so they aren’t thrown next, and throw whatever bits of left over nuggets or pizza is on it into my mouth as I hear my stomach growl from forgetting to make my own lunch…

Do you ever have those moments? When you’re so busy taking care of others you are ignoring taking care of yourself?

Like in the middle of the night, when you should be sleeping, but you’re putting a kid back to bed, or better yet, letting one snuggle up to you in yours, making any rest you are supposed to get impossible… finding yourself asking at 2am - Why did I have kids?

If you’re in the thick of it… like we are… you are DEFINITELY asking yourself it on the regular.

I’ll be honest… I’ve asked myself it way more than I’d like to admit…

I never thought that at this chapter in my life I’d be a full-time stay-at-home mom, particularly not one who had three kids under 5, two with special needs.

If you told me ten years ago that there would be a period of time that not even school would be available to my littles… and that I’d spend my days dreaming up and creating adventures for said children so that we could work towards thriving, not just surviving…

I thought I’d be working toward a CEO or President title… something that culminated all the work I’d sacrificed after years of education… something that would showcase just how important I had made myself… or how irreplaceable…

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But then… just when I am not asking the hypothetical question, as it about to turns to a serious consideration… IT happens… the WHY shows up… like when they say “Mommy, I love you”, for the silliest reason… or one sibling decides to share with the other, without being asked… or one picks up their toys out of the blue… or one eats all of their nuggets, and asks for more… it’s typically for the most un-alarming reasons that I remember the WHY.

Today… in case you find yourself asking why you had kids… I thought I’d throw out the possibility that the answers are right in front of you.

I’m who my kids want in the middle of the night, to scare away monsters and comfort them until they fall asleep… my WHY shows up when their breathing settles, eyes are closed, and I get to return to my bed to see their sleeping bodies peaceful again from the monitor screen…

I’m who knows that only the T-Rex nuggets are the ones Jack will want, and Luca doesn’t care as long as they’re cut up just right… my WHY shows up when their plates are clean, bellies are full, and moods have improved from attacking their hunger…

I’m who’s put the work in to learn everything she could about what my special needs children need, despite that their school is closed, and that maybe - just maybe - the summer they are about to have (before hopefully we get back to the normal we all miss and need), is one with me they’ll never forget… full of adventure as we work to thrive… not just survive… my WHY is that I feel prepared to face this craziness, because I have a spouse who’s made it possible for me to stay home and take care of our kids…

Turns out… I am a CEO… I am a President… may be of just my household, but there are four humans and one fur-human who depend on me because to them, I am irreplaceable… and YOU ARE TOO…

So if you are finding yourself asking that same question lately, while everything is harder than you hoped… take a minute… because the WHY is usually right in front of you… and even though the battlefield of toys and mess and laundry and dishes can make it really difficult to see it… it’s there.

That body you had in high school or college… the one that birthed the babies and looks different because of it… that’s a pretty amazing body that was the only one that could make your babies possible…

That vacation someone else is on… there is a reason you aren’t on it… because a little human needs the only sand you are on to be the sand in the sandbox they are in…

Eventually… the toys will stop scattering… and even if the laundry never stops - I mean, let’s be honest… this chapter with littles… the pages will eventually turn… the WHY might keep changing, but friend…it’s there… you just have to remember to see it.

Be kind to yourself… find the grace you need… Remove all expectations except for the need to be present, because otherwise, you’ll keep asking the question, and simply miss the answer…

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Why did I have kids? Because my wife and I were meant to be their parents. Whatever journey this takes us on, we were all meant to be on it together… Here’s hoping there are enough friends to keep me sane through this next chapter… enough adventures to chase the summer skies on… and that the school system figures out how to get our kids back to their routine we all miss and need so much…

Until then, friend… I see you. You are not alone… just keep remembering to be grateful for the why.

I know I am.

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The Special When

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The Special When

When we found out we were pregnant, we started to imagine their futures. We started to think about what could be for them one day. 

When we picked out their names we looked to reflect a path we hoped would be possible- providing them strong, dependable, serious and relatable names.

When we pictured what their paths may look like, we thought about this close bond that they’d have as twins. They’d grow up always having each other… a partner in crime… a shoulder to lean on… someone who would always have their back. 

When we navigated those sleepless nights of newborn twins, juggling breastfeeding and pumping, diaper changes and tight swaddles, we told ourselves… this too shall pass.

When they rolled over for the first time, we thought, “A milestone! we hit a milestone!” and anticipated so many more milestones to come.

When we talked about their futures, we gushed over the endless potential sports they would play, the potential jobs they would have, whether or not they’d want to go to college or just jump into learning about the family business… We promised each other we’d support whatever dreams they might have… 

When the boys were diagnosed with autism at 18 months, we were in denial. We thought their speech was delayed because they were twins without older siblings and had never been in daycare. When doctors said they weren’t sure Luca would ever talk, we responded with determined disbelief that the experts had no idea what they were talking about. 

When the boys hit age two, and we started to really learn about what autism would mean for our family, we started to understand how severely unknown our road ahead was, and how all those assumptions of hopes and dreams we had for our boys shifted…

When the sleepless nights returned, on top of bringing another newborn in our house, we started to wonder if we’d ever sleep again.

But then, something clicked… 

When we learned about the magic of autism, we dropped the self-pity and the potential doom autism could mean for our children, and focused on the incredible road that had yet to be paved would look like.

When they started to make significant progress in school, finding words we weren’t sure we’d ever hear out of their mouths, we leaned in hard to asking for help, being open to whatever autism may bring and researched wherever we could to learn about how to be the parents they needed.

When Jack went to his first birthday party of a classmate, played with friends, and even sat down to sing before cake, we began to see glimpses of that life we thought may be ahead for our boys, both despite autism, but also because of it.

When COVID hit, and they took away the routine and resources the twins received from their school, we thought it might be temporary, but stayed open-minded to our ability to show up for them.

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When the weeks passed, and the sleepless nights outnumbered the ones with sleep in them, our tired bodies began juggling the chaos and anxiety the pandemic left on our family. We began to have a hard time keeping perspective that the regression happening before our eyes with the twins wouldn’t be permanent. 

When I reached out to their academic team, and then the administration above them, as well as the Super Intendant begging to know what plan lay ahead this summer, when only the students who were in serious need like our twins would be in the school district, limiting exposure for the virus with plenty of resources to get our twins back on track, we found very little perspective left to focus on, as their optimistic promises to put a plan in place continued to fall flat.

When we learned, just last week, that the summer school their medical diagnosis, and assessments of their incredible academic team assigned them, would be limited to hourly increments daily, we started to feel defeated. 

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When we look at the magic in their autism now, we see it being buried by their anxiety, need for routine, longing for their peers, and regression that has shown to potentially have permanent damage.

When we look ahead to their future, we worry that the lack of what we can provide for them right now, during however long this pandemic keeps them out of school, will seriously effect who they could be, the life they could live, and the choices they will have when the time comes - forget what sports they will play, if they will want to go to college, or what jobs they may want.

The special “when” for children with special needs is being ignored with the severity of everything going on in the country right now, and although it may fall low on the priority list for so many of the talented decision makers out there who could do something, it remains at the top of our priority list as their parents.

So I ask you, WHEN will the medical diagnosis that outlines what our children need be enough to get them back on track, so that their many special whens of the future can remain bright, full of hope and possibility.

When?

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What do you need?

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What do you need?

What do you need?

The question is banging at the door I’ve closed in my mind as I lock myself away in my mental closet of a pity party, sitting on the cold dark floor, letting the tears continue to fall.

What do you need?” It demands from me.

Like my four-year-olds, I sit in the time-out crying, ashamed, and unable to find the words. 

I don’t know!” I want to shout back. “Don’t you think if I knew, I’d know how to ask for it? Or better yet, get it for myself? I’m fully capable.

As I breathe, I can feel the weight in my chest and I whisper… “I need this pandemic to be over.

The lack of response confirms what I already know, that it’s not over, not even close, and it may get far worse before it gets better.

What do you need?” The ask is softer this time, almost with more patience and understanding.

As the tears continue to fall, and I find a steadier breath, I try to think logically, of actual problems I’m trying to solve, not just the overwhelming feeling of weight… What are the little things that could help? 

The obvious come to mind: I need a break. I need sleep. I need to not answer to someone long enough to get myself from the 10 level of breaking, back down to a 2 or 3… that livable weight of reality that is easier to manage… When I’m at a 2 or a 3, if a twin pulls the other’s hair, or throws their cereal, a simple “whoops, we need gentle hands”, or “oh no, our cereal escaped our bowl” is my automatic response. When I’m at a 10, or a 12 like I feel like I am now, after another sleepless night with autism, my responses are not quite as kind. I’m a shadow of the parent I want to be, unrecognizably cold and shut down.

So, what do you need?” it probes again.

How do I get to a 2 or a 3? How did I before COVID?

I had scheduled time… scheduled time that was mine… mine without interruption. Yes, there was a list of things to accomplish, but it was my choice in how they were done. 

It’s been months since my children went to school, or could be taken on adventure for a few hours so I could find quiet. Yes, I could leave, but where would I go?

“Last time… what do you need?” I know my time is running out. The violins are quieting. And reality is calling. Game time decision. Wash your face, girl, or let the world see you crumble.

The truth is… I’ve operated on less sleep. I have three children, and survived through breastfeeding twins. I’ve done this. My muscle memory is already trained and built. I think I’m just resentful that I thought this chapter of my life would be over by now, but instead, plays on repeat.

The truth is… I do have help. I have an incredible nanny who comes five days a week to help me navigate what lately feels like impossible moments of parenting autism during a pandemic to navigate. 

The truth is… I find breaks. We gave up working on the twins’ school weeks ago when the baby napped so I could take the break. And on the nights I really don’t sleep, those two hours are enough of a power nap to keep me on track.

“Think”, the voice smiles, “What do you need?”

And then it hits me.

I need to know it gets better.

I need to know we’re not alone in this, and that someone else has survived it.

I need to know that this type of chapter in raising littles with autism, or twin boys, or just three kids in general didn’t destroy someone else’s marriage, turn them into a cold, shut-down and mean monster of a person, or kept them from giving up completely.

I need to know that someone else’s special needs children who were up all night every night, (we’re going on 17 out of 22 nights right now) eventually slept through the night.

I need to know that kids will go back to school, and that the administration responsible for making that happen is aware of the repercussions this time is having on children who’s needs can’t be met with remote learning.

If I can find the lighthouse to focus on, I can weather the storm, and ride the waves. I can refocus, and celebrate the small wins that get us inches closer to that brighter destination. Not sure what it is yet, but anything is possible when you are willing to work for it, harder when necessary, never giving up.

I can feel my body rise, my hands find my cheeks to wipe the dampness, and my feet find the steps before them that walk me back to reality. 

This may not be over anytime soon: the extra strain that this pandemic has placed on so many of our realities. But if I can’t control the uncontrollable pandemic, I can choose to accept it, and only focus on what I can control. 

Dear reader… if you’ve been there, and gotten through it… share so that those of us who are in it, know we are not alone. And if you are in it with us, if any of this resonated, know we see you, and you are not alone. I have no idea how to fix it, but I promise to keep sharing in case it helps in any small way. 

Here’s to the lighthouses that make the waves of any storm feel possible to weather. May you find yours soon. XO

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Our Village

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Our Village

“It takes a village”, they said.

I can remember when the twins were born, that first day in the hospital, how we disrupted the maternity wing with so many visitors. Our phenomenal nurses kept trying to limit the amount of visitors, despite my dismissal of their concerns, when finally I had to say “they are our village. We just had twins, we will need them. Let them enjoy this moment too.”

Our village, both the extended, and the intimate, has shown up in ways for our family that I don’t know many of them realized they signed up for, even more so since the twins’ diagnosis. Having three small children, two with particular needs, we threw our pride out the window two years ago, and learned how to ask for help when we needed it, sometimes too often. When we’ve had to lean on the shoulders of our village, we’ve had to lean in hard, sometimes placing an unwanted burden.

Our immediate family, particularly my in-laws and my sister, have shown up with such repetition and selflessness, it’s almost become an expected appearance, and one we have to remind ourselves to vocalize gratitude for, because their efforts are offered and by no means required. Granny & Pop-Pop, the Saturday date nights, and continued drop-ins when we need a moment to breath, are sometimes the only way we can recharge enough to be present for our family. Auntie Sammy, your energy and love you shower on our children is not only reciprocated, but clear in their adoration for you as their favorite person. We are eternally grateful for the three of you, and the rest of our family members - THANK YOU for always being our life-line.

Our chosen family, the friends who continue to show up time and time again, that are weaved into the framework of our lives in such a strategic and permanent way, shower us with love and support in ways that I hope we can live up to deserving one day. They sacrifice their time, energy, and more often then not, physical labor, to help us during our times of need - and this is just one moment of public praise and gratitude I thought appropriate to take - THANK YOU! (You know who you are.)

Yesterday, when I asked for help from our extended community, you showed up in ways that I didn’t know possible. Friends from grade school to college, neighbors and community members, and new friends that I’ve never met in person, but continue to follow our journey through this platform, went out of their way to try to help us in our time of need. The support that came after the request was simply heartwarming, and one of the most beautiful moments of this journey for us. THANK YOU all. Not only for following our journey, for sharing this blog with others when you’ve found something helpful, and for messaging, calling, texting ideas that you think may help our family. We will continue to welcome any and all suggestions with open and grateful hearts.

I just needed to take a moment, to say “Welcome to our Village.” We are so glad you are here, and fortunate to be part of yours. Call on us when you need us, and we’ll continue to show up as you have for us.

Sincerely, Christina. XO

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We Need Your Help

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We Need Your Help

It still haunts me… the moment when our son ran into the house, tears streaming down his face, screaming as his scratched at his face furiously. It paralyzed me. I found a way to move toward him and try to comfort him, but it required following him for a matter of 10 minutes trying to calm him down.

I had watched the scene that sent him spiraling before he entered the house. The neighbors had a small fire going, about 15 to 20 feet from our yard. Although Luca stood in his “trees” which are really just large weeds that have grown to create this super cool path for the kids to play in, I thought he was a safe enough distance. The wind that day, proved me so very wrong. He watched the fire intently, trying to understand it, listening to it crackle. But then a large gust of wind took the smoke at him, and as he watched it like a rushing wave on the sea shore, it’s current taking him under with out warning, the smoke attacked his small body, with sensory over load. He couldn’t breath, and you could tell it stung his eyes, as he raced inside in a panic.

I wet a facecloth and held it over his tear stained face to try to stop the burning. I sang quietly and held him, rocking back and forth, hoping to calm him down. My wife was outside mowing the lawn, some where in the front where I couldn’t reach her. I wasn’t sure if he was allergic to the smoke or whatever was burning, or if he was simply scared and just couldn’t tell me.

That’s one of the hardest challenges we face, while Luca is still finding his words. He isn’t able to communicate what he needs as well as Jack, and it requires an elimination game of sorts. As I was parenting solo, I did the only thing I could think of to find answers that might help. I hopped on Facebook, posted about the situation, and hoped someone in my network could give me the words to explain how he was feeling when Luca couldn’t. There was instant support and things to consider, and it helped me triage faster than I ever expected.

Luca calmed down, his eyes relaxed and the puffiness and redness faded. He drank water and calmed his body on the couch. The tenseness in his muscles subsided, but the fear in his face remained. We kept a close eye on him all night, as he flinched at certain sounds, his eyes always searching the outside with caution, clearly traumatized.

I think, as parents, we’re always watching out for what could potentially harm them, trying to either shield as best we can, or hope we’ve given them the tools to face it head on, feeling prepared and capable. One of the most challenging parts of Autism with littles, when they have a sensory processing disorder, is that many of the things that could trigger them are foreign to us parents. The way they also process trauma, without the ability to talk through it, can seem equally foreign.

Luca stayed inside for three weeks. Our boy, who I imagined living in the mountains one day, due to his need to be in free open space as often as possible, had now trapped himself in the walls of his home, rushing to close any door when open, and crying in fear anytime you asked if he wanted to go outside. He would watch from the windows for any glimpse of smoke, and studying our neighbor has he continued to chop wood in the same place he had for months. About a week after the experience, he had some how found a video on youtube of a crackling fire, and had started to play it repeatedly for comfort. I kept expecting enough time to pass where he would eventually just go outside. But after three weeks, I was starting to get really worried.

I couldn’t understand it. I couldn’t find a way to help him. I asked his teachers for help, and had even reached out to a friend who is a psychiatrist for a referral to someone local who could help us.

We took a chance of bringing him to an open field with his siblings, as I had hoped to take their annual photo with the apple blossoms. Although we weren’t able to get any image to be compiled in photoshop of the three kids, we were able to get Luca to run outside again, after parking in two different areas before he was interested in exiting the car. His feet hit the ground, the sun shined on his face, and you could see his body breath a sigh of relief. It was such a win for us. We let him run until exhausted, packing the kids back in the car with renewed hope.

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We had opened the pool the last week of April, but decided to turn the heater on earlier than planned, just to see if he would go through our backyard to get to it. I went swimming first, sending him a video through my wife who was inside with him. He giggled, but still refused to go outside. The second day, we decided to just bring him out to the pool. My wife carried him, reassuring him he was safe, until he was in the fenced in area with 30,000 gallons of heated delightful water. That boy’s smile lit up ear to ear, he stripped out of his clothes, asked for his puddle jumpers, and jumped in with glee. It’s been 5 days now, and there hasn’t been one he hasn’t spent hours swimming.

The thing is, unless he’s swimming, he still won’t go outside. I still can’t understand it. A swing set that was donated by another family, and stained by my wife’s team, is sitting in our yard. I’ve worked, with the help of an amazing friend, to clear the area, removing hundreds of large obnoxious weeds, and level the ground. I enlisted my sister to help me pick up all the large, heavy, half-assembled pieces from my wife’s shop when the stain was dry, to get them to our back yard. (We did have to ask for muscles outside our own to get two crazy pieces- thank you friends who lifted those!) I even have 50ft of turf rolled beside it, ready to be laid out. Today I’ll spread a few yards of loam to finally level it, roll the turf out and hope we can start building the swing set this afternoon.

What worries me is I don’t even know if that will be enough to get him to play outside again. And what if it isn’t?

As a parent, I feel like I ask myself what-if’s so often, I miss being present, or at least as present as I want to be. I’m so worried about the potential, that I forget to live in the what is. I feel like lately, I’m always worried about what I can’t control, and now that I’ve found myself in a situation with real trauma, it’s testing my ability to show up and be the parent our child needs.

I’m working every possible answer I can control, by giving him highly preferred tasks in the hopes he can rebuild his muscle memory of feeling safe outside. If that doesn’t work, we’ll most likely need professional help, which may not be the easiest thing to obtain during these crazy pandemic times. Anything to shape the fears he has of going outside to be saved as a single memory, not the current reality of what being outside really is.

If you have any ideas, please share. I don’t typically ask questions here, but as I’ve connected with so many incredible parents who have walked in these shoes, or are on the journey as we speak, as well as phenomenal teens and young adults with autism, I am hoping someone might have something I haven’t thought of. Some way to understand what may click for him and make him feel safe again. Because if this swing set doesn’t work, I’m not sure what to do next. Thanks in advance. XO

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The Decisions We Make

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The Decisions We Make

Have you found that you find kindred spirits in the strangest places?

Just recently I took on a new endeavor to try to help bring some money in during such a strange time of this pandemic. In that I found the most amazing teammates, incredible women who are also trying to provide for their family and create opportunities for other women to do so as well. Introducing myself and sharing my story, I found a mom who I connected with right away, as her son too, has autism.

She was warm, and kind, and that kind of person that if she lived on your block, you would be asking for play dates every day just so you could become best friends. She has been so supportive of the way I share our families story, that I when she asked my advice on something, I knew she would be comfortable that it inspired the following post.

As parents, particularly while our children are little, we are faced to wonder what of our bigger decisions, and the domino effect of their results, our children may have an opinion on when they come of age to form them.

There have been decisions Steph and I have made as parents that we know our children may have opinions on, from the serious to the insignificant. Some serious decisions, like that we used an anonymous donor to form our family, or that we only chose to have three children despite that we had additional frozen embryos we could have continued trying to give them the next partridge family with (we are pretty musical after all), tend to keep us up at night. Smaller ones like that all their pictures until the age they can handle Going to a barber will showcase haircuts done by Momma Steph with her best skill, and one or two by myself that had a little more Jim Carey feel with those awful straight bangs, or that I let Alex have two Oreos instead of one when she asks because it makes her happy, or that we were dog people and never let them have a cat (or a lizard, snake, spider, etc because that is NOT happening) might be something they hold against us for whatever silly reason.

Truthfully, one of the hardest parts of sharing our story, isn’t just how scary it is to be vulnerable, but is actually the intentionally it takes to make the tone represent something the boys will be proud of one day. I know one day they hate that people know so much about them. My hope is that they understand the intention behind it is to help others like us know they aren’t alone, and to shed light on the magic behind the diagnosis, reminding people that no one is merely one thing or label. Any one little thing about us, is simply that: one thing. It’s one part that makes up so much of the unique beauty we bring to the world; ever growing and changing to be who we want and need to be.

In short, if one day my children question the decisions we made, I hope my heart is just proud to have raised children who can think for themselves, and can form, defend, and believe in their opinions with enough conviction and passion that they aren’t afraid to disagree with someone they love. Maybe they’ll teach me a thing or two one day, that shapes the person I will become because of them, as we know the decisions we make for them today, shape them to be the person they will inevitably be.

I believe if we lead with love, patience, humility and grace, making every decision with good intention, then we can simply let the pieces fall where they may, and everything will be alright in the end. Good humans raise good humans, it’s as simple, and takes as much work, as that. Xo

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Next Mother’s Day

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Next Mother’s Day

Next year, for Mother’s Day, my kids will sleep in, letting us sleep in, and when they finally get up, will play together nicely, working extra hard for calm hands and quiet voices because they know it’s their moms’ day. They will take baths after breakfast, and get dressed in whatever matching spring outfits I found at Jcrew weeks earlier, so that I can take their annual photo in the Apple Orchard where the blossoms that have just begun to bloom make the perfect setting of white gorgeousness.

Next year, for Mother’s Day, when we get back from taking photos, we will put tables out on the lawn, decorated with gorgeous colored clothes, and have flowers everywhere. The kids will have made cards and gifts, and will be on their very best behavior, playing in the yard while we set up for our guests.

Next year, for Mother’s Day, I want to host a big brunch outside in our back yard. I want my mom to drive up and feel spoiled for making the trip, because all her children and grand babies are there to be with her. And when she and my mother-in-law sit together, laughing and watching their grand babies shower them with love, they will get along like old friends, without any awkward conversations or family drama that holiday gatherings typically endure, because we will all just be grateful to be together.

Next year, for Mother’s Day, we will grill deliciously marinated meats, paired with roasted vegetables, and pasta salads. We will make fruity drinks, and have an array of desserts that inevitably the kids will want to eat before dinner, and because it’s a happy day of celebration- we will let them. We will eat too much, take a break, and then eat again, while still having more than enough tasty treats to send each of my siblings home with some for the next day.

Next year, for Mother’s Day, I will sit on my deck after an amazing meal, and watch those same siblings teach their niece and nephews how to play croquet, and bocce in the yard, making memories that will last the lifetime of my children until they are old enough, and fortunate enough, to have littles of their own to teach as well. 

Next year, for Mother’s Day, after the day is done, and the kids have been bathed and put to bed, I want to be able to give my wife a card that enclosed in it, tells her I have booked us a weekend away, where there are no children, and we can just be us for a night again.

This year, for Mother’s Day, it will feel like every other day lately, and that’s OK. We will laze in our pajamas during the morning, and only change into clothes (or a clean set of pajamas-don’t judge) when we are ready. As soon as Luca finally goes back to bed, since he has been up since 2am, I will too, and we will both rest our bodies for a couple of hours before officially starting the day.

This year, for Mother’s Day, we will get take-out from our favorite local breakfast place, and our pup, Piper, and I will enjoy the ten minutes of silence the car ride there takes us, while we wait for curbside pick-up, without anyone else in the car. It’s the only quiet we find since schools closed and the house no longer holds that solace for either of us.

This year, for Mother’s Day, my siblings and I will hop on a Zoom Call with my mother, to send her our love virtually, and safely, in this new normal, because she is of the at risk, who has done everything she possibly can to stay safe during this pandemic. As a breast cancer survivor, and someone who knows first hand what it means to fight for her life, she values every day since, and is taking every precaution to not have to fight again for a very long time.

This year, for Mother’s Day, the second virtual FaceTime call we will make will be to my father. First, to wish my step-mom a Happy Mother’s Day, but second, to see how he is doing on his the first one without his mom, who we lost to this pandemic less than a month ago.

This year, for Mother’s Day, as the day goes on, we will watch movies, and play indoors, because oddly enough, it snowed yesterday, and not conducive for yard games, or a photoshoot. We will most likely have to make up some of the school work we have missed this week, because sleepless nights with autism have made it hard to do much more than survive- working to keep all the kids happy, and safe from aggressive behaviors, let alone meet the homeschool requirements.

This year, for Mother’s Day, we will eat something from the crock pot or air fryer, or some sheet pan recipe, like we do on most days during quarantine when it’s not warm enough to grill. If we take a ride anywhere for take-out or drive-thru, we will make sure to bring happy Mother’s Day cards with the kids scribble drawings on them, to give to any mothers working on a day they should be home with their families, giving them with extra heartfelt thanks for everything they are doing to make sure our families can get what we need. Particularly because like many kids with autism, there are days our twins rely on nuggets and a happy meal to get any protein for full bellies. 

This year, for Mother’s Day, when my in-laws makes it over for dinner, I will have a glass of Chardonnay waiting for Granny, and two open arms for a hug, because as she is in our immediate circle, and someone we see every day helping with child care, she is someone we do not have to social distance from, and such an important lifeline I will be grateful to celebrate the important day with. We will makes sure to overly thank both her, and Pop-Pop, because without them during this pandemic, I am not sure we would be making it through with the grace and patience they make possible through their support.

This year, for Mother’s Day, when the kids are bathed and finally in bed, I will give my wife a hand-picked card, with as much love that I can write in it, telling her that whenever this is over, we will get time for us again. With the card will be boxes of her favorite movie candy, and an invitation for date night, where we rent a movie and put away our phones for the duration of it, pretending for two hours that no one needs us so we can just enjoy each other.

Mama, if you are like us, and preparing to spend this Mother’s Day in an unusual way, I hope my dreams of next year’s Mother’s Day help to inspire you to think of yours, in any of the moments when this years don’t feel like enough. Because there will be next year if we all do what we can to stay safe, continue to social distance, wash hands, and slow the curve.

And to all the incredible mamas who have to work this year, whether it be on the front lines in our hospitals and ERs, or as first-responders, and fire and police woman... to all the incredible mamas who are essential workers, and required to work in order to get that paycheck to feed their families, as delivery workers, mail service carriers, grocery store employees, pharmacy staff, gas station employees, and restaurant employees- thank you. THANK YOU from the bottom of our hearts for all that you do. Happy Mother’s Day to all the mamas out there- whether you birthed your children, or earned the title with every diaper change, life lesson taught, tear-stained cheek wiped, and open-armed hug- if you hold the title and meaning for someone today- may your day be filled with as much love as you have given to those who made you a mama. Until next year... XO

PS: I’d be remiss if I didn’t send a special Happy Mother’s Day to two additional women who shaped my life in ways that are instrumental to my ability to be a present, happy, and respectful mother. To Ma, up in heaven, who always gave me a home away from home, without question or expectation, I hope one day to have the house all my children’s friends want to be at every weekend. And to Anna, who continues to teach me about the mother I want to be, I’m so grateful to be able to ask the question: what would Anna do, and instinctually know the answer.

And to my love, my children’s Mama, and to the only reason I knew I could be a mom in the first place, because you promised to always be by my side… our parentship is the thing I will always be most proud of - despite that COVID19 is challenging it on a regular basis, forcing us to grow and be better every hour of every day for our children. Thank you for helping to leave a legacy where the best is still yet to come. Happy Mother’s Day. xo

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Parentship

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Parentship

A few weeks back, on maybe day two of no school, life is over/*cough*/on pause, my wife had come home from work later than usual, after the first of many long days of adjustment for our new normal at home.

She was fried. As a small business owner, she hadn’t slept much, as her brain was feverishly trying to strategically rearrange the life of her business to make sure her team was protected, could continue to provide for their families from their Pro Image livelihood, and that what she built over the last two decades could survive this. She didn’t have capacity for much else by the time she made it home that night. But I didn’t have capacity for much patience or grace, because every ounce of it I had left had been spent trying to reassure our children things were fine, and the lives they just lost wouldn’t be gone forever. 

Inevitably, our lack of capacity that night lead to a heated conversation, and going to bed angry. Something we work really hard to not do. But the next day, when some of the feelings had settled, we took a few minutes to sit in the uncomfortable, and be honest about how we were feeling. She shared how scared she was for her team, her company, and how to provide for us, and I shared how for the first time in a long time, I felt invisible. That because all her capacity was being spent on her team and her clients, she had none left to see us, her family. That I was looking at really long and hard days ahead with three young children, two of which needed skills and structure that I didn’t know if I was capable of, that they were used to getting for 6 hours a day, that I was pretty sure I was going to fail miserably at. If the one person I chose to be my partner couldn’t find space to see me, I was worried I wouldn’t matter. She shared that she had a team of 10+ who could become invisible if she didn’t have space to think about them, and that if the team failed, she couldn’t provide for our family either.

We sat in that uncomfortable for a good 45 minutes. There were tears from both of us, but once we were completely honest, we were able to talk through a plan that got us both to what we needed. One that could be flexible and could pivot as needed. We understood that with only so much capacity at this time, and with both the business and our family having needs that had us at capacity level, we would need to own our roles but make sure to leave room for whatever else might come up by relying on open communication with each other on what we could handle, and when we needed help. 

That plan has been working pretty well for the last four or five weeks. But this week, after two really long sleepless nights with autism, I failed at holding up my end of the deal yesterday. The boys schedules are totally off, so emotions are high, bodies can’t stay calm, hands are not staying to themselves, and they are super quick and short to react. My reactions weren’t as patient or kind as they needed to be yesterday either. My wife had to call me out twice on the way I responded to Jack.

When she had had enough, she finally looked at me and said “what do you need?” I responded defensively, because I knew my actions weren’t attractive- but I was TIRED. She stayed patient, and asked me again- “what do you need?” After a minute, I cried. I was so tired. At 4am that morning, while Luca and Jack were up, I had been working on quotes we didn’t finish the night before for her work, so that we could keep up with making sure the team’s schedule was full. I had been patient and played with the boys at 5am, even though I just wanted to nap on the couch. And when Luca threw all of his toys at me, including a heavy-duty microwave, I was so tired I didn’t pay attention to my surroundings when I chased after him before he could throw something at Jack- I ran into the baby gate, scoring a solid bruise that still hurts. I cried because even though I napped for an hour while Alli took her morning nap, it wasn’t enough. I cried because I knew I wasn’t holding up my end of the bargain. I wasn’t proud of my behavior either, and was ashamed my wife had to call me out.

She looked at me and said, “this isn’t you, or the parent you want to be, so you need to tell me what you need, or snap out of it.” 

I could have fought back. I could have been nasty, but weeks before I promised to be honest, so I simply said “I am tired”.

She goes, “Ok, to to bed. I will put Jack to sleep by myself” as it was after 8pm and both Luca and Alex were already asleep.

I don’t ever not put the kids to bed. Jack usually needs to hold my hand to fall asleep, and ridiculously, it’s my 2 minutes with him at the end of the day that feels worth all his emotional roller coasters that come before it.

But I had just told my wife what I needed, and I needed to listen to myself, and let her show up while she was willing to.

So I went to bed.

And the kids slept through. Jack got up at 4:30 am, but he was willing to play in his fort (our master closet - don’t judge- it gives me an extra 45 minutes later to snooze which I NEVER get so I am letting it work as long as it can). 

I slept from 8:30pm, woke up at 1:30am to find everyone was sleeping so I went back to it, until 4:30am and didn’t get out of bed until 5:15am. 

I am two cappuccinos in as I sit in the playroom and type this up on my phone watching Alex and Jack play with legos at 6:30am. My wife is still asleep, and Luca is hanging under his sensory sheet, content enough he isn’t quite ready to get up yet.

I share this in case anyone else is struggling as a parent navigating the new normal, not just with their kids, but with their relationship as well.

Our parentship, aka parent-relationship, is one we put a lot of effort into. But while pregnant with the twins, we agreed to make sure she and I, outside of being just parents, always came first. If we couldn’t take care of each other, how could we possibly take care of our kids effectively. 

Sitting in the uncomfortable was a theme my therapist encouraged, that scared the crap out me. She said that if I always thought the worst was going to happen, I needed to find a way to let the facts debunk my fears. By sitting in the uncomfortable, and doing the work to be honest about how I was feeling in a situation and let others do so as well, I would learn that the worst that could happen, wasn’t really the natural outcome, slowly helping to build muscle memory in facing uncomfortable situations for what they are - momentarily decisions that need to be made, not monumental in size or life altering. 

As you face another week of this pandemic, ready to parent, teach, show up as a spouse, and get some work done to pay the bills on top of it, I just want to say- you can do this. You CAN do this. It looks to be that the country will slowly open up again, and although the newest form of normal may still not be the totally preferred one, hopefully it will continue to provide options that make things better able to meet everyone’s needs. 

If you find any of this helpful, what has worked for me is remembering to be present in our parentship, keeping open lines of communication, asking each other for what we need, and letting my partner show up when I ask her to. Nothing about the last couple of months has been normal and we have all had to adjust in some way. If you can sit in the uncomfortable long enough to find what’s comfortable, maybe the solution can be something you never knew you needed, but gets you to be better than you knew possible before.

XO

Oh and PS: if anyone has any tactics on getting a certain 4 year-old to have a calm body and a quiet voice- I am all ears! My sanity is at stake. Thanks in advance.

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Are you grieving?

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Are you grieving?

The five well-known stages of grief are: denial, anger, bargaining, depression and acceptance. Until recently, I didn’t realize what I was feeling was grief, but now that I’ve made my way through all five, I thought I’d share in case helpful for anyone else…


I can remember hearing people say “this isn’t a big deal”… and “I’m not taking it that seriously.”

I mean- yes, I agreed on the toilet paper ridiculousness. Milk, bread, cheese- sure, but toilet paper? Still don’t get it…

But those first few weeks, I feel like we were all in denial. I know I was. 

I thought, “this is temporary, everything will go back to normal tomorrow.”

For me, it lasted about two weeks- and only a week of homeschooling, since our school gave us the first week “off”.

After the first week of filling out forms, taking photos, working on apps, and ignorantly believing I could create the school day in our home in a way that our autistic twins would find comfort and confidence in the routine that ended without warning. 

And then, the second stage hit: anger.

Granted, I had every right to be angry. I lost my nana, the matriarch in my family. But, I found that I started blaming anyone for anything because, quite simply, I was really mad.

I was not alone- my four-year-olds were with me. They yelled and screamed, and stomped their angry feet (calming tactic in this household). They were sick of doing the bear hunt, or practicing the letter “C”. And they started to take it out on each other. 

At one point, not that I’m proud to admit it, I was even mad at their school. How could they think that our autistic toddlers could actually get the services they need from home? (Clearly unfair of me to say, their administration is amazing, but I was mad, and needed to stomp my angry feet).

This lasted about a week for me. My practical self found it’s way to bargaining, and started to wish for any hope of summer school, claiming that if only this was happening to me ten years from now, when zoom calls could work for our kids… or if only I had arranged for services in the home to help the boys with OT and speech, then maybe we’d be able to provide a similar structure to what their used to… or if only I could set up an outdoor playground, complete with trampoline and a swing set, the boys would have everything they need to fill their days which means they’ll sleep at night

I’m not going to lie… I did convince my wife to let us get the trampoline, and it was worth every penny! (If you need one, check this one out. Our friend did a ton of research and got it, and when I researched it, couldn’t agree more, and it’s SO amazing for the kids and their energy needs.)

And a swing set is in her shop, freshly painted, ready to be assembled thanks to an incredible human being who not only gave it to us for free, but kept it in his garage all winter when we forgot to pick it up last fall. SERIOUSLY incredible human being.

And then, last week… I hit the depression stage. I let my anxiety get the best of me… every time I read a headline that said school was officially done for the semester, that summer school wouldn’t happen for our kids… and that some areas were going to stay at the current status quo until August… I just got sad. Unbearably overwhelmed and sad. As it was raining, I gave our crew permission to quit school that week, saying if we got anything done at all it would be too small a win to count. The drama got a hold of me (and my kids, mind you) where I started to feel like this was the end… the end of all that was good… and how on earth could we ever get through this?

Thank heavens this week I found acceptance.

It’s like out of no where, it hit me. Snap out of it, Christina! Yes, we don’t know exactly when this is going to end - but it will end. Yes, it may be almost a full 9 to 12 months of school the kids have missed, but they will go back to school. Yes, the really tragic loss in this country will continue on, but eventually, it will stop. 

If you find yourself in any of the other stages before acceptance, maybe this mindset will help you give yourself a little grace, because whether or not you’ve physically lost something, you are experience grief. You are grieving what you thought your life would be right now, and the reality that a loss of that size has had an earthquake of an impact on your life. On what it was, what you thought it would currently be, and what it is to become. 

Defining moments are happening around you, and if you are like me, stuck in any stage but acceptance, you might be missing them. 

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Moments I’m now paying attention to include: 

  • Letting Jack need to hold my hand to fall asleep at night, and only mine. As exhausted as I am, he’s not going to want to do that forever. And as much as it’s DRIVING ME BONKERS that he literally needs me all day, it’s a humble reminder that one day he won’t need me, or even want me, and that will be the moments I’ll wish to have back. 

  • Mustering up the energy every time Luca locks eyes, and excitedly begs “two eyes, nose, sharp teeth”, waiting with such sweet anticipation for me to make a scary face, raise my hands up with pretend claws and say “It’s a bear!” and chase after him for the 100th time that hour because he’s fixated on “The Bear Hunt”. I know it’s because it’s a world in which he and I understand each other, where I’ve gotten to his level, and listened and validated what he needs, despite any communication barriers. 

  • Having a toddler during quarantine has been such a unique blessing. Alex lights up my day every time she barges through a room, shifting her hips in excitement, without a care int he world. Her smile and giggle just melt your heart. And as I watch her love her brothers, with such unfiltered admiration, learning from them, and teaching them at the same time, it gives me such needed perspective. And the moments when I feel her learning from my wife and I, like how when she’s really tired, and just wants to be loved, or give love, she will let you hold/rock her, and will softly rub your back, almost like she knows you need it, but with an equal encouragement asking you to rub hers in return. 

My best advice, after making it through all five stages, is to just hang in there. You’ve got this. Look for the facts in the situation that will help ground you in reality. Just make it to acceptance where you can remember that although this is hard, awful, sucks, and even unbearable at times, there’s such incredible collateral beauty in all of it. XO

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If my son was in your care...

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If my son was in your care...

Before COVID-19, a good friend who is a social worker asked me what advice I had for her as she worked with children on the spectrum in hospitals. At the time, I had some thoughts, but never got them to paper.

As I sat today, during one of the tougher days with the twins, I found myself grasping for perspective, and my thoughts landed back to that conversation, but how it relates to our current state. What advice would I have for anyone that needed to care for either of our boys, but particularly Luca who hasn’t found all of his words to express what he needs, should he be put in a situation where I could not be present as his advocate, caretaker, and comfort. 

Although the emergency rooms are not filled with toddlers his age, we just learned of the death of one while we watched the news last night, which means it could happen. That in mind, if this is of any help to someone who’s responsibility is to care for a child like Luca, here’s the only advice I can think of that could be helpful. 

If you find yourself needing to care for a boy like ours, in a situation where we could not be present, he would be in fight or flight mode... and he hasn’t let me cut his nails this week, so if it’s fight mode, he will draw blood and leave a mark... like the one he dug out on my chest today. Please be gentle if you need to protect yourself. He is little, and even though he is fiercely strong, he is our baby, and he’s just scared.

If he runs from you, you will not catch him, as he is fast on an average day, but could outrun a championship linebacker when he’s scared... and his little body can fit in places where you won’t be able to find him, taking away your time and energy to search for him when you are needed somewhere else. Small spaces will make him feel safe, and he is far too good at hide-and-seek, so please don’t let him run. 

When you finally catch him, he will laugh at you when he is scared or sad, worst if he is mad... but he will break your heart when he finally cries, because the anguish in his big hazel eyes will pierce through your heart. He loves compression, so if he lets you, please hold him tight… give him a moment when he thinks you are us, and when you feel his body release, please hold on for another minute longer, so he knows he’s not alone.

When he finally starts to trust you, I hope you have an iPad, and YouTube installed on it. Make sure it’s charged because he will use every ounce of juice it has to calm down by focusing on finding his videos. 

And please, for all the love there is in this world, have some kind of box or bag of figurines or cars that he can inspect, line up, and use to take his mind off being so scared. Even five or six pieces to give him enough of a grouping to require order and sorting will be enough. Get creative if you need to. 

Lastly, by no means am I trying to tell you how to do your job, as I know that what we are asking as a society during this pandemic is already too much, so I hope you don’t take any offense in the extreme measures I’m asking you take with my son, or children like him. My job is to make sure he doesn’t end up there in the first place, so we will continue to stay home, wash our hands religiously throughout the day, sanitize everything, and pray that our children do not end up in your care. 

But if for some reason my son, or a child like him, does end up in your care, please don’t worry about anything I just asked of you… because there isn’t anything that will stop a parent of a special needs child for being there when their kids need them… not even COVID-19, so I won’t be going anywhere… you just keep on with the good work you are doing doing your job, and I’ll keep on doing mine. 

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In the mean time, I’ll keep remembering that this too is temporary, and all the sleepless nights that he is having without school, or a dependable routine of *OT, speech, and one-on-one attention from an aide, and scheduled dependable expectations with learning and social interaction… this too will all be a memory eventually. If you’re strong enough to leave your families every day to protect, care for, and save families like mine, the least I can do is work to keep my family out of your care. 

*This post originally mentioned ABA therapy, as the twins attend a school that incorporate some principals of ABA therapy. As we are two years into the diagnosis, all I know of ABA therapy is that our school has deemed it as the least restrictive environment of it, and any time I’ve mentioned it in the past, that’s what I’m referring to. I’m grateful to those who have clarified what it entails, with far more experience than I. I am merely trying to share our story. Thank you for being here.

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Piper

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Piper

Hi, I’m Piper.

Could someone tell me what’s going on?

My little humans haven’t left my house in weeks. It’s never quiet any more.

I was just getting use to having Mom home during the day, and the extra attention she’d give me when everyone else was gone. Now, I’m lucky if she gives me a snuggle when I climb into bed at night.

Momma still leaves the house every day, but when she’s home, I can tell she’s stressed. When she rubs my belly and scratches my neck, I can feel how tired her hands are from working all day. She hasn’t wanted to wrestle in a few weeks either.

Don’t get me wrong, there have been some perks…

Like the snacks the littlest human gives me regularly - she’s a good sharer. She and I like a lot of the same foods: chicken, peanut butter, and bacon. Now that she’s tall enough to get to the cheese drawer herself, she can be easily convinced we need another cheese stick,and that she only wants the first few bites.

Just the other day, one of my little humans, who doesn’t typically like me, and who pulls my tail for no reason, rubbed my back with his foot when I laid under the table. After dinner, I asked him if I could lay by him on the couch, and when he didn’t tell me “no” or to “stop”, I approached with caution, his eyes watching me the whole time. I gave him fair warning, eased in next to him, and felt his body get calm near me. He even put his hand gently on my coat.

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While I laid with him, I could tell my little human wasn’t sure what was going on either. His energy was restless… and almost scared. I just laid there with him for a while until his breathing settled. He doesn’t talk much, so I wasn’t expecting him to tell me what was wrong, but it was nice to feel needed by him.

The other little human, the one who doesn’t stop talking, he knows my name now. He even tells his friends about me when he’s on the screen. Just yesterday he told me to say hi. Maybe soon he’ll want to play with me more than just making me the bear during that hunt game they play every day.

I love my humans… I really do… but…

Could someone remind them I’m out of Greenies? I saw Mom’s stock of my food in the basement with all the little humans food - but I don’t see any more greenies.

And maybe ask them to go back to school? I was just starting to enjoy how happy they were when they saw me from the bus window.

Thanks in advance… - Piper.


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How Parents Are Made

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How Parents Are Made

How Parents Are Made

“Children with special needs aren’t sent to special parents, they make parents special.”

When that powerful quote found its way onto my social media feed, I caught my breath. In the similar way to how Shonda Rhimes resonates every Thursday night in her opening and closing lines of each Grey’s Anatomy episode, it challenged me.

Since the twins’ diagnosis, I’ve settled on the mentality that we were given this family, because Steph and I could be to them what someone else couldn’t. I’ve cringed at my poor parenting, and picked up pieces of my broken heart during the really hard moments of COVID-19, and all the chaos it’s ensued on their diagnosis that catch me when I’m too tired or too frustrated to be the best version of myself. The last few days, in particular, in dealing with the loss of my Nana, has left me emotionally spent, with very little energy available for anything else.

I have questioned a million times over the saying “you are only given what you can handle”, and used it to comfort the exhaustion away, with some naive hope that we were special and chosen for our kids because we had the patience, kindness and life experience that would make us exactly what they needed; exactly what our magical children deserved as they navigated life with the autism diagnosis.

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And then the coin flipped.

What if we weren’t here for them, but they were sent for us? What if they were gifted to us to make us better people, make us more patient, more kind, and provide the life experience in raising them that we will ultimately need for something bigger in this life? 

This last week has been tough in our journey with autism, particularly in managing the constant behavioral outbursts. Not only are they boys, but add the twin factor, and the little sense of remorse Luca feels (currently), with every weight of remorse that Jack feels (hopefully only currently as well) and it’s been a non-stop fist fight for days. I will say, Luca has a serious potential career in baseball- as he can nail his brother in the face, every time, with his water bottle, from as far as 10 feet away. But last night, he decided to give his sister a try, while she was just sitting there watching TV, and the bruise is still fresh on her cheek.

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When we try to talk to him about it, he scripts an “I’m sorry” and goes back to his business, without any explanation of why the behavior happened, or indication on how to redirect it (or even intercept it) in the future. I keep going back to remembering that all behavior is communication, but I can’t figure out the lesson in this. And just when I was finding comfort in the expansion of his vocabulary through the great work happening at his school, life got paused for the world, and I now worry that my lack of teaching experience will cause a regression in our sweet boy’s progress. I worry that my own inability to muster the energy he needs, that he used to get from a one-on-one presence in his aid, for an entire school day, where he was tended to, challenged, inspired, loved and entertained by, will make him angrier as each day goes by.

As I watch our daughter during quarantine, who takes her naps without fuss, plays joyfully with Jack in between them, eats anything (and everything) out of the pantry and fridge, and is more than content to cuddle up to a movie on the couch, I let that concept of children gifted to their parents sink in. If we ever needed to believe that we were decent parents and had any chance of being what our twins need for the next however many decades we are blessed with them, Alex gives us that reassurance hourly.

Because, if I’m being honest, on the really hard days especially lately during quarantine in COVID-19, a parent to a special needs child could be asking themselves, “what did I do to deserve this?” I know I have. Especially at 1am, when Luca is having another sleepless night with autism, and in his frustration he’s kicked me so hard in the face I know I’ll have a decent shiner the next morning. Despite whatever pity party my small violins start to play, they are always followed by the sad question of: “what did this beautiful, sweet boy do to deserve feeling like his only resort to communication is to fist fight or hurt someone until they understood what he was feeling?” 

I hope, dear reader, that as you read that statement you felt the humanity behind it. Because although those moments are few and far between, they are real, and they are something that I know I’m not alone in feeling. If I am to share our journey with you, I need you to see all of it. And maybe, by my sharing, it can help someone else to understand from my perspective they didn’t already have. 

For every moment our life gets so hard that I don’t know what I’m doing, that I question if I can keep going, or that I start to question why I was chosen for this, I have 1,000 more moments of joy, and completely rewarding love, and a reminder that I am worthy. Parenting, and every moment of it, is a gift. Parenting during COVID-19, however, is an even greater gift. Because during these unprecedented times we have to parent at a whole other level. Even though I know it’s a gift, and completely worth it, I’d be lying through my teeth if I didn’t admit to wanting to quit on the daily lately.

Many parents are being asked to work full-time jobs from their homes while ensuring their children don’t fall behind in school. Parents like ourselves, who have littles with special needs, are being asked to find greater patience, greater understanding, and quite frankly, a greater sense of fun to keep each day and every day healthy, safe, and open to learning for their littles.

I didn’t sign up for this. Despite being on every possible wait list for ABA services in the home, I hadn’t found time to apply for social security for the boys, which I was told would be the only way I’d ever get to the front of the list to get help, because I knew the incredible team that was working for them at school was killing it, so social security fell low on the priority list. I had no way to know that we’d be quarantined with returning to school a dream far off in the long distance future. We’re not even sure if they’ll get to go to summer school, or what will happen this fall if we get another wave of this. Even as I type this, the weight of my anxiety sits in my chest and it’s suffocating, knowing that in my email inbox is a letter from the school asking that I wave the state requirement for our kids to get the services they need- because during a state of emergency they cannot provide them at this time.

Staying solution-oriented, the only perspective I need to have is to just keep going. My family is healthy. We have an incredible nanny who is helping every day, which is leading to proactively stopping Luca’s aggression at least 50% more than I can on my own, resulting in 50% less chances of injuries that put our family needing to go to the ER. The kids are loved and cared for and safe. 

If I adjust my understanding from that we’re not given more than we can handle, to the idea that every test of the last few weeks, and last four years since we became parents, are lessons and opportunities to learn how to be a better parent, inevitably being able to handle more adversity, change and growth, then maybe COVID-19 won’t seem like a nightmare of a running a marathon I didn’t train for. Maybe adapting the student perspective, believing that every behavior is communication, turning on those listening ears I keep begging Jack to make sure are working on his head - maybe then this will start to feel more like the training piece… the starting from scratch, learning how to use my muscles to work for me, listening to what they need as they train for the many miles ahead… sharing stories with strangers to help pass the time, making life-long friends from the similar terrain we run together… maybe then, this will just be an introduction to the beautiful adventure ahead - the one where the finish line isn’t why you started running in the first place.

Every child is magical in their own way, unique and different and bound to be incredible humans one day. But those on the autism spectrum, as they dance outside the circle a neurotypical child typically operates within, showcases focused areas of attention where their magic can truly shine. Where there may be areas of learning that do not come naturally to them, it leaves room for the areas they truly care about, and due to that extra space of interest and excitement, can teach you things you may never have known before.

For my fellow marathon runners on this new terrain of parenting, remember to keep eyes ahead, breath through the tough moments where your body tells you want to quit, and rely on that muscle memory built from love, sweat and tears… If you need someone to run a few miles with, I’m here… with stories to distract you, and working listening ears at your disposal, for as long as the pavement lies ahead. You’ve got this. Xo

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Family is Everything

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Family is Everything

Tonight I will drink wine… the expensive stuff on the back of the shelf in the basement… and I’ll order gnocchi from the only restaurant I’ve found that gets it even close to hers… and after we get our kids to bed, I’ll cry as I finish the second glass of wine, because one won’t be enough, holding my wife’s hand when I can finally let this all sink in... 

I often write about the collateral beauty of a situation…. Of the wonderful mistakes that come from unfortunate circumstances… or how to find the rainbow at the end of a rainy day…

I’m not sure how to spin this one… 

I’m not sure how to recognize anything but the collateral damage from COVID-19 as I work my way through this post…

When my father mentioned there had been a few cases of COVID-19 on my Nana’s a little over a week ago, I simply held my breath. As romantically naive of a dreamer I am, I am fortunate to have equal capacity for reality and logic. I understood what that could mean: outside visitors hadn’t been allowed for weeks, but now there was a good risk it would spread throughout her community, and my fierce and stubborn 98-year-old Italian little woman of a Nana, could fall victim.

I knew that feeling helpless would make things worse, so instead I imposed on my family asking each subset for selfie-video messages that I could compile into one message for her. It took less than 48 hours and each son, niece, nephew, granddaughter, grandson, great granddaughter and great grandson had provided a message that was quickly compiled and sent with a request of desperate gratitude to make it to her. Her wonderful nurses obliged, just 24 hours after they let us know she had spiked a fever. 

Later that day, they shared that she watched it with a tear in her eye, and despite her heavy breathing, with peace and gratitude. 

I’m having trouble finding the silver lining in this, because all I want is the chance to grieve with my family, those same 20+ individuals who rallied around getting messages to her so quickly, who know the ache of losing the matriarch of our family. 

During the last week, I found myself easily distracted by my less than silent household, running after one twin to ensure they don’t send the other to the ER (because seriously, unless someone’s dying, we are not going to the ER), and wished I could give my dad that distraction as he anticipated, and now mourns the second loss of a parent. 

I forced a brave smile while on facetime with my siblings as we small talked around the situation, asking if each other is ok, all mimicking the “fine” response and ignoring how each other’s eyes well up or voices crack, because we knew Nana may not make it. Now that the day is here, I wasn’t able to force the smile as my sister and I broke down instead.

Since I first heard that today would be a possibility, I have cried in the shower, because it was the only place I felt like I could let go of the weight of this, without worrying my children. But now that today is here, I yearn for the opportunity to have a wake and a funeral for her where there are acceptable places to be publicly broken for a moment, with others equally looking to sit in the sadness this loss has caused. 

Reflecting on her legacy, the most important lesson she taught was that: Family is Everything.

Nana lived her life with it as the consistent deciding factor, because to her, family gave unconditional love the unconditional requirement. 

To be family meant you were invited to dinner on Sunday: the day that woman would stand on the hard kitchen floor without rest, making pasta from scratch while gravy simmered on the stove top, just so that all the people she loved would gather around the table and find sustenance from her love to start another week. “The way you show someone you love them,” she’d say, “is to work for it, as long as it takes, and make the outcome worth the wait.” 

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To be family meant that anytime you attended a family gathering, large or small, you gave each member of that family the respect and love they deserved both when you arrived and right before you left with a hug and kiss - EVERY ONE. From a young age we were trained to know each relative, even in the extended family, and to this day the greatest insult to an Aprea is if you leave without a hug or a kiss goodbye. Just last Christmas, after Luca had a full blown episode and we had to leave the celebration abruptly, my wife looked at me shocked when I explained I had to go back inside and say our goodbyes. 

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To be family meant that every wrongdoing or mistake would be forgiven, and that the only worst case scenario would be disappointment, never disownment. Telling my Nana that my life was not going to be what she expected, or necessarily wanted, as I’d met the person I intended to marry, and it was not a “he”, was one of the most difficult moments of my life. I watched her heart break in front of me, fully aware that I was the cause. Years later, at my wedding, she said it was the happiest group of people she had ever been a part of, celebrating such a “happy day”. And then, when the twins were born, followed by her great granddaughter Alex, she told me how she couldn’t have been more proud. All she ever wanted for her granddaughters were to have families, and raise them with love, and fully bellies, the way she had raised hers. She may not have wanted, approved of, or accepted my marriage to a woman at first, but the fact that a woman was going to give her the family she had dreamed of for me, made it better somehow. 

To be family meant that you never gave up on each other. I can remember the first time I asked her why Papa had his own room, and she said that even if it required separate bedrooms so that your spouse's snoring didn’t drive you over the crazy edge, you still slept, loved, and raised your family under the same roof, because that’s what commitment is. My guess is it wasn’t just the snoring, but as so many of us are dealing with the stress of COVID-19, and maybe taking it out on our spouses because our typical outlets of dealing with stress aren’t an option (PICK ME), I’m trying to remember that commitment I made to say: for better or for worse; and be grateful my wife doesn’t snore… (Love you, babe.)

Lastly, for Nana, to be family meant that on the sad days when you lost a member of that family, that you should feel it in every ache of your being, because when you are family - from the moment you enter it, to the moment you leave it - you are never alone. Losing a family member, any member, is like losing a part of yourself, and it should be painful as it reflects the love you had for that person. My heart is broken today, but I know it will heal quickly, for it’s mourning the loss of an INCREDIBLE woman, whose legacy will live on in the family members she left behind.

Because family is everything

I am not alone in this. The death toll COVID-19 has taken on our nation is tragic, and families everywhere are forced to mourn in non-preferred ways. Many states in the US still haven’t seen the peak, but we are about to. 

To all those out there who have lost a loved one, sincerest sympathies, and empathy from someone who also has a broken heart. May the pain you feel in their loss merely remind you of the love they gave you while they were here, and their memories continue to warm your heart for all your days ahead.

To those on the front lines, both in the hospitals, doctors offices, and EMS services, thank you for everything you are doing to take care of those we love, even though it puts your families at risk. May your sacrifice save the lives of the ones you can, but may you not take any of the weight of the ones you can’t home with you. You are our heros, plain and simple, and may there be so many Sunday dinners in your future where the topic of conversation is light hearted and not so heavily weighted by the severity of your current days.

To those staffing the nursing homes where this disease is spreading like wildfire, and particularly to the incredible nursing staff at Orchard Cove who made sure my nana got to see her family one more time, thank you for caring for our loved ones like they are your own.

To the Apreas, who I wish I could be with so much, I love you, and I know we will find a way to be together soon. I can’t wait to take the first hour together to say hello to each of you, and the last to say goodbye, as each hug and kiss will have been completely worth the wait.

To my kids, Jack, Luca, and Alex, thank you for filling our days with distraction, learning experiences, laughter, and love. You make every single day worth living. And you can thank your great Nana that she taught me about unconditional love we will continue to shower on you every day, and how to make the most laboriously fantastic eggplant parm there is. 

To my wife, my irreplaceable partner in this life, I promise to buy your breath-right strips if you ever start to snore, and honor the commitments we made to each other on that “happy day”, pushing through whatever craziness this COVID-19 continues to throw our way, because you are my chosen family, and…  


 Family IS Everything.

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