Adieu, 2020

Let me preface by saying that I didn’t hate 2020 as much as it seems the rest of the world did.

Photo by cottonbro on

I needed to learn the lessons that 2020 had in store for me.

I learned that I can in fact keep going long after I think I can’t. I learned that when there seems to be no solution in sight, and all you see is dark despair, there is still a move to make: just look for the next right thing. Sometimes that thing is to let go and let be. Stop trying to fix. Stop trying to anticipate. Sit in your darkness until the next small move appears. Something will make you laugh again. There will be another tiny, tiny breakthrough. And you can hold onto that until the next one. Your intuition will find its voice again.

2020 taught me that, contrary to what my depression fools me into to believing, I am essential.

I learned that Giancarlo progresses and develops more when he is given freedom to do so. His learning doesn’t depend on calendar time, arithmetic and worksheets. I learned that, until this year, I had only pretended to accept that his path was different. This year I let him take the lead, and he blew me away. I am learning to question everything conventional.

In 2020 I learned how to turn off the perpetual manager in my head. The one that always needs a project, prepares for every possible outcome, manipulates and controls those around me… The one that contributes to my self sabotage.

You see, 2020… I didn’t completely hate you. You taught me a lot of important lessons. Ease up a bit in 2021… though, k? I’m still learning.

Sweet spot

As I was lying in bed, scrolling through social media as I often do in an effort to shut out my thoughts, I came across a post in a mommy group that spoke to me. It was a fellow special needs mama, asking where to turn to vent about the challenges of having a different child. Many special needs communities tend to shame moms for even implying that additional needs can sometimes feel like a burden. I replied to the post saying “I don’t know of any such group, but know that you can reach out to me any time you want to vent to someone who gets it.” And then, as one does, I read the other replies, and noticed that another mom had referred the original poster to my blog!

Ok, not gonna lie, I kinda felt famous for a few seconds.

Then I was flattered.

Then I was self-conscious because I was reminded that when you spill your heart out on the Internets, you may actually be read by people who don’t actually know you and therefore support you by default. So I re-read that post, and, much to my surprise, it was actually pretty good! My own writing impressed me. Then I looked at the date I posted it. March 16th. My brain immediately translates that to “3 days after that day”. The day I was pretty sure I had hit rock bottom. The day I lost total hope that anything would be okay, despite all the colorful signs around the city saying otherwise.

And then, in an instant, a live reel plays in my mind, of all the days since that day. How is it that I haven’t written since then? If anyone is actually reading this, I want you to know how many times I have wanted to blog about what our lockdown life has been like, but I never knew how. Most days, it was even too overwhelming to put into words. Still is, actually, even for someone who fancies herself a writer.

Ever since I was very young, writing was my catharsis, but only when I was in the “sweet spot” of any given emotion. Too little (or too light) and I couldn’t translate it into poetry – too intense, or too dark, and I shut down completely.

And so, I suppose that in writing this, I am declaring (mostly to myself) that I am no longer dominated by the despair that over the past few months, has blocked my creative outlet and any other effort I made to take a step towards coming up for air for longer than a few hours at a time. Any short bout of laughter, pharmaceutically-induced peace, or “self-care” indulgences pulled the weight back just enough so that it sent the pendulum thrashing, past worry and exhaustion, past anxiety and pain, landing violently into the abyss of numbness.

But I am writing tonight. Which means I am back in the sweet spot, and it feels good to feel again.

This is not about CoVid19 – Part 2

I see the news and cancellations and the number of infected individuals coming in from all sides. However, I am so consumed by my own perceived catastrophe, blown out of proportion by all the cognitive distortions I learned about during my CBT therapy. But I am too far down the spiral to climb out of it now. I had been counting on meeting with the social worker and special educator to discuss the steps we would take in what the professionals I spoke to at Giancarlo’s school called a dire emergency. Given the CoVid restrictions, our emergency meeting has been postponed temporarily to March 20th, a week away. I realize I am alone, again. I manage to scrape together enough rational thinking to realize that I need to fix my mindset, quick. More despair and discouragement ensue. I observe my mom engaging in blowing balloons and playing barbies, cooking up a meal and caring for my little monsters. They manipulate and take advantage of her weaknesses – she is so worried about me that she just wants to keep them happy so I can stay on the couch and not intervene. What a fucking mess of a mother I am.

My parents decide to take Giancarlo to the chalet with them Friday night. The squeals of joy and happy flapping that boy emits when he is excited – boy, it even made my numbed heart smile. I get up to help him get ready for the trip he is so enthusiastically anticipating. He takes a running start and bodychecks me into a bear hug. This boy loves me so intensely. He needs me to get my act together. They leave and tears are streaming down my face, although I barely notice. I am lost in thoughts I cannot even identify. Rosalia looks up at me and asks “mommy, are you okay?”

Somehow these words come out of my mouth, “Honestly, my love, I’m not so okay right now. But I will be. I just have so many feelings right now that they are pouring out. But I am going to work on finding solutions. I am good at fixing problems. Everything will work out and I will be okay again soon. You don’t need to worry about fixing me.”

Together Rosalia and I create and laminate an activity wheel, individualized schedules for her and her brother, and prep a bunch of activities for our first “homeschool” day when Giancarlo returns from the chalet. We laugh together. I feel productive, proactive, I see glimpses of hope that maybe it won’t be as bad as I am anticipating.

I have been through worse. I need to stop listening to the lies my anxiety is telling me. Andrà tutto bene.

The world is fighting a fatal pandemic for fuck’s sake. My problems pale in comparison.

Andrà tutto bene.

I ran away to a hotel last night. I live a priviledged life, I know. I am grateful for that, but it only adds to the guilt. Look at everything at my disposal and I still can’t snap out of this. I was staring up at the stars last night – something I haven’t done in so long. Cried my eyes out again. And that was it. I decided I was gonna keep fighting.

I took the time to be alone and take a bath and write this blog. In a few seconds I’m closing my laptop and going to pick up my kids from the chalet (I dropped Rosalia off there yesterday). I can’t wait to see them. Wish me luck!

This is not about CoVid19

Except it kind of is. You see, this quarantine came at a time when the worst possible thing I could imagine was being in close quarters with my kids 24/7. In fact, in the days prior to the quarantine, at the end of the school day, I would sit in my office, put my face in my hands and break down crying at the thought of going home to my kids. What kind of a monster of a mother does that?! It’s hard to admit. I am ashamed. But it is the truth. I have been in a depressive state for a while, and the only thing helping me to keep my head above water (besides meds) is the fact that I would force my ass out of bed, dress like a professional, and go to a job I am good at. No matter how heavy my heart was and how many tears I fought on the way to work, the load lightened as the day went on – a silly comment from a teenager in their broken English, extra endearing because of the effort to connect with me despite the generation gap and language barrier; the sweet “thanks for the class, miss!” when exiting the classroom, making me feel like, maybe, just maybe, I still got this despite my world falling apart. And my rock, my colleague, who pops into my office to eat lunch with me and naturally brings out the “me” that I have lost. The “me” that laughs, the “me” that loves hearing about wedding plans, the “me” who still sees humor in things, the “me” that can still find solutions… the “me” that gets lost once I pull into my driveway and I am overcome by something similar to a vacuum sucking out everything from your breath, to your voice of reason, leaving you empty.

Obviously I didn’t get to this point overnight. It’s been a slow and painful downward spiral, an accumulation of mental surcharge, juggling everything a typcial high school teacher would, in addition to weekly appointments with a social worker to animate family meetings regarding our differing parenting styles (my parents, who live with us, have basically been co-parenting and consistency is a huge challenge). To that mix, add a change in special educator assigned to our family, emotional fatigue, and physical abuse. From my 8 year old son. My 130 pound 8 year old son with defiant behavior disorder, in addition to his Autism and lack of impulse control due to his ADHD.

His violence has been something I have asked for help on for years. The multidisciplinary team supporting us through it has changed members several times, each with a different philosophy, way of working, observation periods, charts to fill, medications to adjust, advice to give… but at the end of the day, my bruises keep multiplying, both on the outside and, the ones that heal less easily, the bruises on my heart. I stopped believing this would ever get better. And to add salt to a very open wound, his psychiatrist last week, after agreeing to try a new med, added that changing doses and molecules will be en eternal cycle until we place him in a center. Put him away. My sweet, joyful, affectionate boy. Torn from the people he loves so intensely. That is the solution I was offered.

I spent the next few days on the couch, in a bit of a haze. Alternating between despair and numbness. When I was finally able to put into words all the noise that was in my head, I reached out to other professionals. I tried to make a plan. It’s how I deal. I plan. Except, what was missing this time was the convinction that my plan would change anything. And then the dispair comes back and I am back on the couch crying. In the meantime, my mom has stepped up to care for the children. When I finally give in to their pleas and requests for mommy, I try to put on a face and participate in an activity. Giancarlo wants to bake a cake. It’s something he has recently taken an interest in and I have stocked up on Betty Crocker mixes. His energy level is through the roof – a mix of excitement and anxiety. I know him well enough to notice that we need to write down the steps before starting. Reading gives him the pause to breathe, and the structure offered by a written enumerated plan also calms his anxiety. It was a strategy I had used effectively many times before. Except, he started insisting that we should not add salt. “No, Giancarlo, no salt”. “NO SALT, NO SALT NO SALT!” He bangs his elbows on the table The escalation has begun. “Giancarlo, no salt, look, first…” and I read the steps I have coped down from our trusty Betty Crocker box. “No salt mommy!” “No, my love!” (me trying to remain calm) He must have taken my no as a denial of his request for no salt. He skipped three levels of regulation and went full-on apeshit. Threw himself on the floor, punching the legs of the table, knocking over the mixing bowl. I get down to his level to try to reason with him, because clearly there is a misunderstanding. He locks eyes with me and reaches for the hair near the nape of my neck, right where it hurts most – his favorite spot. What happens next is a blur. I just know that how I reacted was out of character for me. “Me”. God, I can’t even recognize myself anymore, neither in my actions, nor in my parenting, and much less in the thoughts that have flooded my brain lately.

And then comes the news. Schools are closed for at least 14 days. WHAT THE FUCK AM I GOING TO DO?!

My mommy and her monsters

I’ve been trying, unsuccessfully, to put into words what has been going on in my head and my heart. The weight on my chest. The quiet, yet high-pitched ringing in my ears, constantly reminding me of the blast.

“How does it feel when a bomb goes off?”

“What are the symptoms of shell shock?”

“truth bomb”

These Google searches led me to sites ranging from party games to Hiroshima, but nothing close to what I have been feeling. A confusion so deep that it blurs all the other emotions like a fog hovering over the debris. Now that I think about it, maybe it wasn’t a bomb that fell over us that day. Maybe it was more like a volcanic explosion. Years of secrets, rage, and fire brewing, brewing.

active ash cloud ashes blaze
Photo by Pixabay on

“There are several different causes for a volcano to erupt which all fundamentally come down to a  pressure change within the volcano which forces the magma to overflow the chamber it is held in.”

That chamber was my mother’s heart.

For as long as I remember, I knew that my mother carried many secrets that weighed heavily on her. In recent years, I even thought I had figured them out. But I had no idea. None of us did. No one saw this coming.

The thing is, despite having spent her whole life shielding everyone from the truth, my mom is finding her words. Perhaps that is why I cannot find the words to write about this. It is not my story to tell. But I had to say something. I could not contribute to the silence.


I used to fear silence as a young girl. There was something so gloomy and heavy about it. In recent years, though, between teaching in a language classroom and raising two boisterous little humans, silence has been a rare commodity. In managing my own very loud anxiety, silence became therapeutic. But since that day when my mother broke the silence, it carries new weight. A weight that is too much for my chest to bare. Silence is piercing now. Cuts my breath like razor blades. Squeezes my heart so hard that I want to scream.

But scream what?

It is not my pain.

They are not my monsters.







Powered by Love

Yesterday, on my birthday, I addressed the crowd at the 2019 Autism Speaks Canada Walk, on behalf of my little monsters who were this year’s walk ambassadors. Giancarlo and Rosalia blew me away yesterday, holding hands and marching proudly as the crowd followed them. Sun shining, surrounded by the people I love most, watching my kids walk ahead confident and happy – it was the greatest birthday gift ever.

Just look at this pic. Tell me I’m not the luckiest person in the world. Go on, try. I would never believe you. I have everything I need, right here. We are Team GiaGia, and we are powered by love.


Good morning to all,

First and foremost, I want to thank Krista for once again putting together a beautiful walk. This event has been important for my family for many years, because, as it is for many of you, it is one of the few events we can attend that is free of judgment. Instead, there is a beautiful sense of community, solidarity, understanding, and the comforting knowledge that we are among our tribe, joined by a cause that is dear to all our hearts.

It is for that reason that I was so honored when my children Giancarlo and Rosalia were asked to be ambassadors for this year’s walk. Giancarlo is 7 years old and if he were able to get passed his anxiety and address you this morning, he might tell you how excited he is that there is no school today and how much he loves the bouncy castle and bubble makers, but he doesn’t understand the honor that was bestowed upon him as ambassador. His 6 year old sister, Rosalia, however, does. She knows that she was chosen as co-ambassador because it is important for people to know that Autism doesn’t only affect the individual, but it affects siblings and family members alike. She knows that her role as a sibling is an important one, and she has a wealth of experience to share about living with a brother who is on the spectrum. The problem, though, is that Rosalia is extremely shy. She accepted to be ambassador on the condition that she wouldn’t have to talk on stage, so I am humbly speaking on her behalf.

I also spoke on my children’s behalf several times during this year’s Autism Awareness Campaign leading up to this walk, and very often, the main goal was to demystify what it means to live with Autism Spectrum Disorder. However, I won’t stand here this morning and lecture you about it. If you are here today, it’s because Autism has touched your life one way or another. You may have witnessed, from near or far, the ups and downs of being on the spectrum. Like me, you know that for every small victory we celebrate, there have been obstacles and struggles that preceded. Like me, you also know that none of the victories, big or small, are achieved alone. If you are here this morning, it’s because you’re part of someone’s tribe. Someone’s village. And on their behalf, I thank you. Whether you are a family member, a friend, an educator or a cheerleader for someone on the spectrum, the fact that you are here, wearing your team tshirt proudly like a loyal fan, it means the world to someone. I know it does to me.

Team GiaGia is my tribe. They are the village that, through their love and support, are helping me to raise Giancarlo and Rosalia, who BOTH live with Autism and its challenges. Yes, Rosalia is neurotypical, but she is still very much affected by it. From a young age, she was aware of the fact that her older brother wasn’t able to do many of the things she was quickly learning. She learned early on to stand up for herself when she felt that she wasn’t getting a fair share of attention, as Giancarlo’s special needs took up such a large part of our time and energy. She started worrying a lot too – more than anyone her age should. For example, it worried her, and continues to worry her, when Giancarlo is having a meltdown and I intervene. She worries for my wellbeing. She worries about going to or missing out on events that would be too overwhelming for her brother. She is constantly faced with the conflict of caring for her brother and finding her independence from the weight of his disorder, and that is something she, and other siblings, might live with all their lives.  On the playground or at the park, to decide between playing with the other children or staying behind trying to help her brother integrate into the group. As she grows older, the decisions will become more complex. So, yes, Rosalia has a lot to bring to the table as an ambassador for Autism Speaks Canada, even though she herself is not autistic. She is, though, very much part of the village that is helping me raise Giancarlo. She is his translator, because when he struggles to make himself understood, she is often the one who can decipher his sometimes cryptic requests. She is his ally, his guide, his positive role model, and his best friend, and although Team GiaGia is named after Giancarlo, she is as much a star of our team as he is.

And what a team it is. Team GiaGia is a team composed of not only these little ambassadors and their mama, but also a supportive and loving father, grandparents who are generous with their time, energy, and are basically co-raising Giancarlo and Rosalia, educators whose dedication towards Giancarlo’s success is surpassed only by their patience with him and with me! Team GiaGia also has a large following on social media and the outpouring of love and support that I have received through them has given me strength during many difficult moments. The same is true for the family and friends walking with us today, some of whom travelled all the way from Ontario. It is such an honor to have you all in our corner, wearing our team name on your hearts. All the walkers today are doing that for somebody. Know that if you are here, you’re making someone’s load a little lighter and their heart a little fuller. Every team has a story. Every team has its cheerleaders. And every team is powered by love. It is a true privilege to stand before all of you this morning and be witness to such love, and I can’t wait to see that love pour onto the field when the walk begins in a few minutes. However, before it does, know that we are walking with you. Not only on this walk, but on this journey. Whether you are raising or supporting someone on the spectrum, whether you are a grandparent, sibling, or friend, we see you, we applaud you, and we are honored to walk beside you.

Without further ado, and on behalf of the ambassadors Rosalia and Giancarlo, I wish you a beautiful walk.

Post-Mother’s Day Post

I’m sitting in class, affectionately watching my students with their faces in their laptops, pretending to do the grammar exercises that I assigned in their online workbook, but my mind is elsewhere. I brought my cell phone with me to class today, which I never do, and I was fully expecting it to blow up with texts, but not a single one came through, which makes me even more nervous. You see, this morning, for the first time ever, my husband is taking care of putting the kids on the bus ALL. BY. HIMSELF.

Obviously, before leaving the house at 6:45, I made the kids’ lunches, prepared their breakfast, crushed Giancarlo’s cocktail of meds and stirred it into the peach and carrot flavored apple sauce that he likes best, I packed the school bags and put their school shoes by the door, but I didn’t prepare ALL their clothes. Would Rosy remember that it’s spirit week and today she could wear the sparkly emoji shirt instead of her usual uniform? Of course she will remember – we left it out last night. But I didn’t get her sparkly tights out. I should call. No, Carlos needs to feel like he can do this on his own. It’s important for me not to be that nagging bickering wife that makes him feel useless. He wasn’t nervous about this morning at all. Why would he be? First of all, he is too macho to show any kind of weakness, and secondly, he doesn’t have any real idea of what it entails. Whose fault is that? Not his.

Anyway, of course I ended up calling. Who are we kidding? But I was sneaky – I asked to speak to Rosalia, and reminded her about the sparkly tights myself. And to tell her father to tie her hair. And to watch the clock. When she passed me back to her father, I was all “you got this babe, super dad!” I just sent him a similar message congratulating him for surviving and getting both kids to their separate buses on time. He did it! Truth be told, I didn’t have much faith that it would happen. It was probably a shit show. Actually, my kids are such little shits that it probably went super smoothly, just to prove me wrong and make him think it’s that easy all the time. No arguing about what goes in the lunch, no dragging them out of bed, no chasing a naked stinker around the house, then dodging kicks to the stomach to give him his meds. Guaranteed, those little monsters were on their best behavior with dad.

Should I not have done those extra steps to facilitate his task this morning? If I hadn’t, who would have suffered? Everyone but him. I would have been agonizing all morning, no – all day, wondering if the kids had a good enough lunch (we all remember how judgy lunch monitors can be, don’t we?) I would have spent all day feeling anxious about Rosalia’s possible disappointment if she had gone to school without her sparkly tights, and as that disappointment would evolve to wrath, it would not be directed at the adult who helped her get ready this morning, no, it would be directed at me, the Doer of all Things. But, as several therapists have pointed out to me, if I do all the things, then I don’t leave any space for someone else to do them, because they are done. All the time. Because if I don’t, my mother, the Queen Doer, does. And Papa barely even notices.

Except when he writes you a sweet Mother’s Day card thanking you for being the Doer of all Things. This post may have gone very differently if he hadn’t!

purple petaled glower besode pen
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Meltdown at Maxi

No, Giancarlo didn’t have a meltdown at Maxi (yet). It’s been years since I’ve ventured into a grocery store with him. I actually have a trip planned there during March Break and his special educator will come to observe and help – that’s how well I anticipate it will go. I have been lucky enough to be able to schedule my errands so that I go alone. In peace. And it was peaceful until I heard someone’s child losing their shit. I could hear it a few aisles away, and the tightness in my chest got worse as I approached. So did the looks on other shoppers’ faces. The eye rolls, the whispers between couples. Maybe they, like me, were wondering what set the kid off, or maybe they were judging the mother. Mostly, though, everyone just wanted to get on with their groceries undisturbed. As I pushed my cart closer to the hollering child, I tried not to make eye contact so as not to make the mother feel like she was being watched or judged. In my peripheral vision, I could see the child’s feet kicking and arms flailing as his mother kneeled on the floor beside him with a hand to his chest in an effort to either restrain him or calm him. Shit. Ok, Jenny. It’s not your kid. Breathe. Just go get the orange juice you need. Breathe. His mother will take care of him. Your kids are with their grandparents, they are fine. Focus on your breathing. But I can’t. The kid’s “NOOOOOOOOOOOOOO” pierces my soul and shakes me to the core. I turn around and walk towards the mother and I see her telling her son “c’est fini” (it’s all done) while doing the sign for it with her hands, and then she looks right up at me apologetically. There it is. I had known it from the 3 aisles away, but now it was confirmed to me. This is an autistic meltdown, not some bratty tantrum. I try to give her my most compassionate look as I too kneel down beside her son. I asked her what I could do to help, but she was too busy apologizing. I put my hand to her arm and tell her I am an autism mom too and I understand. And then she starts bawling her eyes out. My heart breaks in a million pieces. As I am trying to figure out what to do next, I notice the boy standing beside me asking his mom for his hat. I get it for him because his mother has the same spaced-out look I get after Giancarlo snaps out of his fits. I don’t know at what point the boy stopped screaming and stood up, it just happened in a split second. The mom was visibly shaken but just thanked me, dusted off her pants, took her son by the hand and led him to the cash with her head down, avoiding eye contact with anyone who had been watching the scene.

Why do we, as mothers, feel so ashamed when something like this happens? Why do people tend to act annoyed by it, or choose to ignore it? Why is it so shocking that someone would try to help?

As she struggled through the self-checkout with her son touching everything and unpacking the items she put into the bag, I couldn’t take my eyes off of her. She looked like shit. Eyes bloodshot and teary, trembling and trying to hard not to snap, I was overcome by admiration for her. I would have left without my groceries. In the past, when I was in her shoes, I have. And I have sat in the car hyperventilating and crying as Giancarlo, unphased, babbles happily. He is so sweet post-meltdown. I hope her son is too. I hope the worst is over for her and that little boy. I wish I had told her that brighter days will come again. I wish I had told her she had nothing to be ashamed of. I wish I had told her she is brave.



Let’s talk, for real.

Mental health. Merriam Webster defines it as follows:

1: the condition of being sound mentally and emotionally that is characterized by the absence of mental illness and by adequate adjustment, especially as reflected in feeling comfortable about oneself, positive feelings about others, and the ability to meet the demands of daily life.

Spoiler alert: I have been experiencing mental illness on and off for the past 6 years. That is the modest estimation. A more accurate statement would be that I have dealt with depression, anxiety, and disruption in normal thinking my whole life. I was recently off of work because of my mental illness for about a year and a half.
Are you feeling uncomfortable yet?
I have been known to ruffle a few feathers, but few things make people more uncomfortable than a seemingly strong woman telling you that she is mentally unwell. Because what does that even mean, right? Am I going to go apeshit and stab you in the neck with my pencil if you say the wrong thing? Will I be so overcome with melancholy that I will be unable to speak between sobs? Will I prance around chanting hare krishna between yoga poses? No, but I will most likely have to fight for every breath to get past my diaphragm without it being painful. I will most likely snap at the first whine that comes out of my children’s mouth and I will spend most of my energy deciding whether to ignore or act on the annoying voice reminding me what an inadequate mother I am. I will likely spend all night awake ruminating and the next day my state will be worsened by the fatigue. I haven’t figured out which part of all that is perceived as a threat to people, but I have often been treated as though it is.  In the past, I often alluded to my mental health struggles with humor, but even so, it has often been met by judgment. You’re not supposed to be bothered by people judging you, because you know better, right? But when the people closest to you have gossip sessions about your spiraling behavior and questionable decisions instead of acting on your cries for help, it hurts. Yet, our first reaction is to judge. What a drama queen. She’s always acting like the victim. Too lazy to work. Always making up an excuse not to come out. All of a sudden all she wants to do is go out? She seems perfectly fine to me. Her mother takes care of her kids for her, what is she complaining about? What has NOT been said about me?
I suppose that just by writing about it, it seems that I’m looking for attention. I am not. Nor do I want pity. What I do want, though, is to spark some reflection and compassion. Instead of engaging in gossip, check in on someone who seems to be acting differently. Instead of resenting someone who repeatedly cancels, try to understand why. Instead of name-calling, let them know you are thinking of them. Offer to visit. Tell them you don’t respect them less simply because they cannot function on the same level they expect to. No one wants to be unable to work. No one wants to depend on someone else to take care of their kids’ basic needs. Mental health or the lack thereof is not a choice, so why do we judge as though it were?
If you follow the social media trends and share the hashtag or use the filter, good for you. Thank you for spreading awareness. What we need more of, though, is acceptance. Accept that not all disabilities are visible. Accept and understand that some people have triggers and fight battles that you have no idea about. Recognize that what goes on beneath the surface has nothing to do with makeup being done or a smiling face. It has nothing to do with how many blessings a person has, how much money they make, or how difficult their kids are, and it doesn’t mean that they think your life is easier than theirs. And if you are on the receiving end of those judgments… if you are the one struggling… never apologize to others for their misunderstanding of who you are. You keep fighting. Your breath will get lighter again and the wave of darkness will eventually retreat and the ebb and flow of light and air will resume its natural course… and you will be happy again. I know. I am.

Happy birthday, Giancarlo

So much has changed since I wrote this letter on this day 3 years ago. You are now terrified of the happy birthday song, so we will not in fact be singing it tomorrow. I no longer bring you to therapy because I don’t have the physical strength to drag you there or back on task when you act like a stubborn little brat… but I am still so proud to be your mama. You still amaze me every day. You still give me strength every day, and I am still so grateful that you included me in your miracle.

Cue the tears.

A letter for my son… (2015)

Dear Giancarlo,

Two years ago, on November 16th, 2013, we had to cancel the party I had been planning for you the following day… because you had been sick, but it wasn’t until that day that we understood how serious it was. Your kidneys were in bad shape. You were diagnosed with Nephrotic Syndrome. The next morning, on your second birthday, you took your first aggressive dose of a strong steroid which you’d continue to take for months. You suffered so much from the side effects… emotionally and physically. Deep down I believe that it’s not a coincidence that the symptoms that later led to your Autism diagnosis started during that time. But those nasty meds saved your life. Two years ago, the specialists told us that this syndrome would be our new way of life. Your kidneys would be in danger every time you caught a cold or a virus. We would have to limit your contact with others during flu season and keep a close eye on the protein levels of your urine. We were told that, in a best case scenario, you would outgrow it when you hit puberty. Relapses would be frequent in the first year, we were told… and only 5% of all patients with Nephrotic Syndrome do not relapse.

Well, my little champion… you showed them! Today marks the anniversary of the scariest day of my life and I couldn’t possibly be any happier to say that those kidneys of yours are miraculous! How many people really get to say that they’ve beaten the odds? Thank you for including me in your miracle.

Tomorrow is your birthday, but unlike most 4 year olds, that means nothing to you. You’ll go about your day in the same way, bouncing and flapping with joy at the simple things that you find so amusing. When we sing “Happy Birthday to you” and you blow out your candles, you may just say “Happy Birthday to me”, right on cue, because it’ll remind you of the episode of Wallykazam when the Cake Monster says that and it cracks you up each time. To others, it’ll look like a perfectly normal reaction from a birthday boy, but I’ll know that it’s your echolalia and the way your brain makes rigid associations… but I’ll still be so proud of you. For the first time since your second birthday, I’m not terrified for your future. Your immune system is strong enough to allow for a “normal” life and your ability to imitate “normal” and “expected” reactions might just be enough for you to have “normal” relationships when you are older. In the past few months, you have worked so hard in all these different therapies we’re putting you through, and you are flourishing. And you’re happy. And I couldn’t be any prouder of you, my boy. Your energy and your challenges test my strength every day, but you give me strength every day. Thank you for choosing me as your mommy, Giancarlo. On November 16th, every year, I will allow myself to get emotional and nostalgic like this… but tomorrow, on your birthday, I promise to do nothing but share your joy. I can’t wait to see your eyes light up when I surprise you with cake and candles at school. Because you love cake. And when you say, “Happy Birthday to me”, I’ll say it right back to you, with nothing but pride and joy.