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.

To three or not to three…

In the past hour, I went from having a conversation with a new mommy about how shitty and rewarding motherhood can be, to finding out that a girlfriend just gave birth, and another girlfriend is expecting her third. Cue baby fever.

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I’ve always wanted to be a mother. In my early 20s, I chose my career so I would have the same spring break and summer vacations as my future children. I tried for my second when the first little monster was 9 months old (and got knocked up on the first shot!) All I’ve ever wanted to be was a good mother, but I had no idea what I was getting myself into. I am barely making it with 2… so why, oh why are my ovaries crying for a third baby right now?

Is it the finality of it, because I am approaching an age where said ovaries will begin shriveling up? Is it because of that conversation hubby and I had on our last date night, when after too much wine, he admitted that he always wanted to have another baby but felt bad telling me cuz I had been struggling so much (and I broke down crying in the restaurant)? What a mindfuck that was. I really had no idea before that. If I had known, maybe I would have hesitated a bit before selling every baby item we had owned on Facebook Garage Sale. Maybe Rosalia has started wanting to hold onto everything because she knows something that we don’t. A clairvoyant did, in fact, tell me once that my daughter had special powers… but I digress. So, ya. There’s that. Do I really want to buy everything all over again? New crib, new stroller, new swing, new everything that we now consider necessities when bringing a human into this world?

But here is where the inner conflict begins. Giancarlo loves babies. Rosalia would be over the moon if only we could give her a baby sister. And the truth is, it will likely make her life easier when she is an adult because otherwise, she will bear the weight of her aging parents alone. Not only that, but if Giancarlo continues on the same path, he may need a caregiver even after we are gone, and that will rest solely on her shoulders if she doesn’t have a sibling. And what if she doesn’t want kids? I will never be a grandmother. Unlike my husband, I have no delusions. In no world will Giancarlo be able to be a father. There – I said it. But I want to have a full table and little monsters running around at Christmas time when I’m in my golden age. Maybe the only way to secure that is to bite the bullet and get cracking on another baby.

Then there is the elephant in the room: what if this third baby is as high needs as Giancarlo? I’m not sure I could handle that. No, I know I COULD handle it because I have a great support system… but I don’t want to. Does that make me a terrible person? Maybe. If I could make some kind of contract with God and have a guarantee that my third child would not be handicapped, I think I would do it. I mean, I could get the crib and baby swing, second hand, right? Easy peasy. Sleep deprival? I already don’t sleep! Might as well shove a bottle in a baby’s mouth while I’m awake! Money? We would find a way to manage. My mental health? Oops. You got me there. My last postpartum depression lasted 5 years. That’s only a slight exaggeration. I am scared shitless of losing myself and my sanity again. So just like I have always done when I walked past a pregnant woman or held a newborn in my arms, I am going to tell my ovaries to shut the fuck up and leave me alone, and I will ignore the pang in my heart, and convince myself that I am fulfilled with two little monsters.

Or not… for as Paul Arden once said, is it not better to regret something you have done than something you haven’t…

Mommy and the inadequate lunch

Last week it was implied by my daughter’s lunch monitors that I am an inadequate mother. That morning, I left the house before anyone else woke up, so I didn’t have the chance to ask Her Royal Highness Rosalia what she wanted me to pack for her lunch. This has become quite the issue at home, and despite choosing what goes in most days, she ends up eating like a bird and half of it comes back intact. Knowing my daughter’s preferences, I CONSCIOUSLY packed her a variety of small portions, which I judged to be balanced and complete when combined. You see where I’m going with this, don’t you? I left the house at 6:40am that day, and only returned after 6pm, at which point I was greeted by a fuming Rosalia, hand on hip, attitude at full speed: “MOMMY WHY DIDN’T YOU PACK ME A LUNCH TODAY?”

Confused, I asked her if she had forgotten her lunch box. My mother, who I am lucky enough to have around for help, informed me that Rosalia did, in fact, bring her lunch box, but because I had forgotten to pack a sandwich, the lunch monitor lent her $3 to buy one at the school cafeteria, so I now owe them money. Wait a minute. What? I didn’t FORGET to pack a sandwich. I packed carrots and hummus and cheddar cheese, grapes, and 2 snacks… ALL OF WHICH WERE STILL IN HER LUNCH BOX. All she ate was the $3 sandwich that someone other than her mother decided would be a better choice. At this point Rosalia interjects, hands still on her hips, eyes still squinting with attitude… “ya mommy you only put me snacks!” I saw black.

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My mother didn’t understand my fury. After all, she is an Italian nonna and she likes anyone who feeds the people she loves. There are few things more important in my mother’s world than having a full stomach. But that isn’t the point. The point is that if my daughter had eaten what I packed for her, her tummy would have been full. I didn’t want it to be full of a big bun and cold meat that day. If I did, I would have packed the carbs and nitrates for her myself. Who are they to judge that what I packed was inadequate? So much so that it was returned to me? ARE YOU KIDDING ME?! A week has passed and my blood is starting to boil again now as I write about it.

What if my daughter had dietary restrictions? What if she couldn’t have eaten that sandwich because she was gluten intolerant, or vegetarian, or what if I didn’t have $3 to pay them back? Ok, that’s being a bit petty, but anyone who knows me knows that I am petty AF. On a more serious note, what message did that send to my daughter? She already thinks that she is better than me. I am trying hard to find a balance between encouraging her to be involved in and having some control over her choices, but also just doing what is imposed on her when it’s necessary, because, well, authority. The lunch monitor’s judgment undid that. The message is, if you don’t like your lunch, don’t worry… choose whatever else you like better and we’ll make mommy pay for it. Fort. Très fort.

I was going to send in a letter the next day with the $3 that I now owed, but it wouldn’t have been a pretty one. I decided to let me blood cool enough to compose something without profanities, but then too many days passed and I decided to let it go. Every day I pack her lunch, though, I am reminded that it will be judged. And my daughter will be judged, but ultimately, I am the one who will be judged, because that’s what people do – judge mothers and their ability to raise their offspring based on one isolated incident.

Oh, talking about judging other mothers, I posted about this on a mommy group. I felt like I needed some validation since wasn’t getting any from my mother or my best friend who answered me, “ya, you should have packed her some sopressata or capicollo!” Most of the online mommies were on my side, but one mother actually said that it would have been a better idea to pack a pogo. A pogo. I totally judged her.

Netflix and cry

atypical-netflix-760x450_cLast night my husband and I started watching Season 2 of Atypical. We watched a few episodes and experienced the same rollercoaster of emotions as we did when watching the first season – no surprise there. When we turned off the T.V. and tried to sleep, we both lay there in silence, unable to shut off our heads. My husband is a man of few words, and it is often a mystery what goes on in his head, but this morning when he got to work, he sent me a text message with some insight.  “What am I going to do when I can no longer throw Giancarlo in the air and spin him the way he loves? What if people are mean to him at school and he doesn’t know how to defend himself? It broke my heart when he told his sister that he wants to take care of her sometimes… we forget Giancarlo is older than Rosalia, don’t we?” The little hamster in his head had been pretty busy, it seems. These are the questions that led my anxiety to spin out of control a while back. Until recently, I was the worry-er and he was the eternal optimist, reassuring me that everything would be okay. Of course, Giancarlo will be able to work when he is older. No, you won’t have to wipe his bum till he is in his 20s. No, why would he get bullied? Denial.

One of the hardest things about going through the different phases of acceptance regarding Giancarlo’s autism is the fact that we went through them at very, very different paces, and it nearly tore us apart as a couple. When I was desperate to learn everything there was to know about possible and impossible treatments, I stayed up reading studies all night, went to conferences, tracked down professors and doctors abroad, managed different therapies and a multi-disciplinary team, both in the public and private sectors, I did it alone. I worried alone. I broke down crying in the shower, my office, in the car – alone. I have been so consumed by the tsunami of thoughts and worries that I have been unable to catch my breath. When I was spiraling out of control, gasping for air between two of Giancarlo’s violent meltdowns, my husband didn’t see me. He didn’t see my mind race ahead 5 or 10 years when I will no longer have the physical strength to overcome my son lashing out at me and then crawling into my arms so I rock his over-sized body back and forth, back and forth, back and forth as I weep.

But last night he got a glimpse of that because of that show on Netflix, and I imagine that other viewers will, too. They will see how a family like ours can be torn apart because we all deal with the challenges of Autism in very different ways. They will see how hard it is for someone on the spectrum to wrap their heads around the simplest things we take for granted. They will see how the siblings struggle with, embrace, and reject their role.

I am both excited and apprehensive to finish watching the second season. Partly because I don’t want it to end, partly because I know I’ll ugly cry, but mainly because although I relate to it on so many levels, it brings up raw, intense emotions. And it gets my husband to express himself better than any therapist I’ve been able to find, so I’ll take it!

 

Run away with me…

When the going gets tough, I fantasize about running away. The first memory I have of this is when I was about 6 or 7 and my dad and uncles went to the farm for the day around Easter time, and they brought me home a “pet” baby goat. I will spare you the details, because I don’t want to deal with pissed off animal activists (my brother is vegan, so I have heard it all before)  but I abruptly discovered that the baby goat would be Easter dinner. The betrayal, trauma, sadness, disgust, and anger were so great that all I could do was pack a bag and leave. They found me at my neighbor’s house later that evening. I never ran away again, but I have wanted to countless times, and even moreso as an adult.

Sometimes, it is the innocent fantasy of a luxurious tropical vacation when dealing with the reality of winter is too much to handle, but other times, the fantasy is not so light. In recent years, dealing with my explosive and energy-sucking daughter and all the mindfucks related to raising a child with autism and hyperactivity disorder, I have taken daydreaming to another level. It’s not something I’m proud of, but I often find myself wanting to pick up and leave. Checking out. Giving my husband no other choice but to figure it out on his own. When it’s not so bad, I sometimes even look into a weekend getaway with a girlfriend that I don’t really intend to follow through with, but more often than not, it’s a nagging thought when I am driving alone, on my way to pick up my daughter from daycare. Keep driving. Don’t go get her. Go somewhere. Anywhere but home. They’ll be okay without you. I am so ashamed of the thoughts that spiral from that voice that I cannot even bring myself to type them. On those dark days, I fantasize about running away alone.

In recent years, whether I fantasize about spending a month in an ashram or hitting up Miami, it rarely includes my husband. How sad is that? When we were young and in love (well, at least I was young), it was nearly our mantra. We were freakin JLO and Marc Anthony, all Escapémonos tan lejos de aquí, Distantes de todo, En la oscuridad donde no haya más, Que ver en tus ojos… fast forward 10 years and my fantasy is to get away from him?

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Until yesterday. In the thick of the darkness in my clouded mind, I yearned to get away from it all and be on a terrasse with him somewhere in Europe, people watching and sipping on a stiff drink. With him. Like it was once again him and I against the world. As though I could once again let myself be convinced that when he holds me in his arms, that everything will in fact be okay.

I need to let that last line sink in a bit. It’s been a while since I’ve let myself fantasize that everything will be okay. That daydream is too painful to snap out of.

But when I snapped out of this one, my first reaction was to try to make it reality (then I realized we have no money to spare and I am scheduled to be back at work next month)… I proceeded to tell him about it and he enthusiastically offered dinner and drinks in little Italy as a consolation prize. The reality was that I had to turn that offer down too, but it felt good to pretend, at least. It felt good to want it. To dream it. To believe in my husband enough that I want to let him in on my secret escape. To run away with me…

Hello darkness, my old friend…

I knew this was coming. The darkness.

When school ended and summer began, Giancarlo had a hard time adjusting to the transition to a less structured environment and his meds were fucking with him so I was inconsistent with them. I was tired and high strung, so he was high strung, and it led to about 2 violent meltdowns a day. I ran on adrenaline for those 4 weeks, and I neglected to take care of myself, so I knew that once Giancarlo started day camp, I would crash. It’s my pattern; once I have a chance to breathe and rest and let my guard down, the darkness creeps in.

Today was Giancarlo’s third day of camp and the darkness didn’t waste any time. It “snuck” up on me the way kids try to tip toe to your bedside at night but you know they are coming before they make it to your door… I couldn’t keep it away. I can’t let that get to me. This time, I am treating the darkness like a relative staying for a visit. I knew it was coming, and although I don’t know how long it plans on staying, I know it’ll leave, so I have the upper hand. Every other time, I was so afraid that it would get so comfortable that it would just stay forever, but now, I am confident that, like a storm, it will do its damage, but it is temporary. The wave will pass and I will breathe again without it being a conscious effort. I will once again be able to be alone without falling apart. I will be productive again. I will not listen to someone take care of my children in another room while I am lying in bed fantasizing about running away.

I know what I can be doing to make the darkness feel uncomfortable and start packing. I had a plan. I had yoga classes booked and appointments set up… but the darkness threw me a curveball, the sneaky shit. It either took advantage of, or paired up with a bout of vertigo, and of course this lovely depressing weather.

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But I still see silver linings. And the universe hasn’t abandoned me. Giancarlo makes sure I see the rainbows and he makes sure that he induces a good ol’ crying session when he feels the pressure building up inside me and we both explode together. Ironically (or not), today he kicked in his wall because he couldn’t get the rainbow in the game he was playing. It was much more intense than that, but I was in such a haze and it was all so much to process that right now that’s all I retained. Rainbow. Rage. Sadness. And then my son cradled me in his arms. My 6 year old beast comforted me after he kicked in the wall beside his bed.

Soon the darkness will pass. But until then, we are gonna cover it up with a Thomas the Train poster and we will drudge through until brighter days come again. Because they will.

Because I finally found some balance (and other reasons why I’m terrified of going back to work)

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Last night Giancarlo woke up at 3:40am and didn’t fall back asleep. At 5:20 we were in the basement and he was body painting. Part of my burnout from work was due to the fact that, on top of my anxiety, depression, and all the stress of having a freshly diagnosed preschooler and a fiesty toddler, I continued going to work and teach a classroom of teenagers despite having many such nights, sometimes in the same week. Severe sleep deprivation fucks with your mind and body in a way that is very difficult to explain. This morning I was fortunate enough to send the kids off, cancel the yoga class I had signed up for, and I went back to bed. Yup. I sent Giancarlo to school even though he has been up since before the sun rose. Why? Because I learn from my mistakes. Firstly, he functions much better on no sleep than I do. Secondly, in the past, when I have kept him home under the pretense of having him take a nap, I usually end up pinning him down in bed to no avail, and spend the rest of the day putting out fires because he is overstimulated, and because, in my exhausted state, I do not provide him with the structure he needs. On those days, I look and feel like a terrible mother. At least , when he bounces out of the van at 4pm, I will have some fuel and patience in me to be the mother he and his sister deserve (for the most part), and I will not be as short tempered, irritable, lazy, or full of rage as I would have been if I had either kept him home, or, heaven forbid, gone to work. I am terrified of having to do that again.

Sleep deprivation is only one of the factors makes going back to work so scary. My energy is so fragile even if I sleep “properly” (it should be noted that the nights that neither of my kids wake up are very rare). I have regular appointments with my doctor, Giancarlo’s social worker, Rosalia’s special educator for her anxiety, a nutritionist to help me with the weight gain caused by my meds, my therapist, a spiritual guide, yoga… then there are the errands associated with keeping a full house properly furnished and meal prep… and on the rare occasion I see friends, it is usually while the kids are in school… and this new lifestyle has taught me that I can live again, versus simply surviving as I had been doing for so long. It sounds dramatic, but it feels like if I had to fit work into the mix, I would be giving up my life.

But I can’t say that to people. Friends that I have lost touch with seem to need reassurance that I will re-enter the workforce, as though it gives them great comfort and pleasure to know that I will have a normal life again. But my life will never be like that of a regular working mom. I don’t think any of my other friends spent the other night wide awake googling strollers and harnesses for a 90 lb 6 and a half year old because they can’t take him for a walk without him running into the street. I doubt any of them live with the guilt that they nearly got their son killed twice in the same month. And how many of them, when they are working, have students come to confess their dark secrets on their breaks and lunch hours? How many of them sat with a trembling, sobbing, preteen who confessed to having suicidal thoughts. How many of them work with that and then come home to an autistic son and a daughter that demands constant reassurance and attention? But that makes people, even “friends” uncomfortable. Hell, it makes my own father uncomfortable and he lives in the same house. Everyone seems to want reassurance that everything will fall into place and I will go back to work when summer is over… and what? Suck it up? Deal with it until I can’t deal with it anymore and I crash all over again? That’s what I am most afraid of. I don’t want to return to that darkness.

What I know for sure is that the decision to go back to work or not weighs too heavily on me… so much so that I want nothing to do with making that choice. I have told my doctor that repeatedly. The decision will be hers, and ultimately, God’s. God’s. Because there is a reason for all of this. Because my transformation over the past year is not for nothing. If I have learned anything, it’s that my plans mean nothing. I have surrendered myself to His plan… How is that for making people feel uncomfortable?