Freeze Frame

I wish I could freeze time. Right now. Just freeze it as it stands—regardless of all the chaos that is enveloping our world at the moment—because Nico is having an amazing summer.

I don’t think I have ever felt this at ease with my son in the five and a half years since his diagnosis. I had to actually stop and think back to the last time Nico had a real meltdown or bad day because I couldn’t understand why I was feeling so content lately. Normally I am so silently on-edge, waiting for something to happen. But, he has been so regulated and happy these last several weeks that I, for the first time since his diagnosis, haven’t been hyper-focused on his Autism.

No joke. No exaggeration. I have not looked at my son and thought about Autism. I have not felt anxious, overwhelmed, or hopeless in what feels like ages and it’s because Nico seems so content with life. It’s not as if he has completely stopped stimming or scripting. He hasn’t changed up his interests or diet or sensory needs in any extraordinary way; yet, I have been utterly transfixed on his lighthearted disposition.

Now, it could be 100% attributed to the fact that he has spent a majority of his summer so far with his cousins and he feels so comfortable with them. He can be himself with them. They just get him. Nico doesn’t have to say anything or do anything extra for his cousins to know what he needs or wants. They know when he needs a break. They know when he needs affection. They know when he wants something simply because they have learned to pick up on his verbal cues and nonverbal behaviors.

With a pandemic in full effect, typical summer vacation plans were squashed, but that didn’t stop Nico and his cousins from enjoying a family-imposed “Stay at home” order. They swam all day, watched movies, snacked until their tummies were busting at the seams, stayed up way too late for their own good, laughed until their insides hurt, and made these quarantined times as fun-filled for each other as possible.

And with Nico spending so much time with his family, he is using more language again. He is socializing more. He wants to be around us more. My heart is bursting because my son is engaged and present in ways that I haven’t seen for awhile. This is what we had been missing ever since schools switched to remote learning and kids weren’t in school socializing anymore.

However, if there is one moment from this summer so far that I could freeze and replay over and over again it would be the moment Nico gave genuine attention to his baby brother, Max. Normally, it’s like pulling teeth to get Nico to even acknowledge that Max exists. He knows his brother is here to stay, but he just lets Max do his thing while he does his. But, the other evening, I was rocking Max to sleep in my arms and we were both nodding off when I felt the most subtle brush past my arm. I opened my eyes and there was Nico rubbing Max’s head ever so gently. Just enough to let him know, “I see you. I love you. You mean something to me.” But, not with too much pressure that would have woken either of us up.

He sat there and rubbed Max’s head for a good minute or so and I kept ever so still with my eyes slightly ajar, watching my sweet boy give his brother love and attention…on his own terms. On his own time. I didn’t open my eyes or let him know that I saw him. I wanted Nico to have that moment for himself. That’s what he wanted. A private moment between brothers. Instead, I choked back my tears, took a mental photograph of the moment, and noted the date and time for memory’s sake.

My sweet boy continues to surprise me each and every day. There is still so much of him I have yet to discover, so when he is present in the moment with me or welcoming me into his world I have to recognize it on a grander scale.

Now, I don’t know what the remainder of summer will have in store for us when we have to say goodbye to our family. I know it will crush us, especially Nico. And, I am scared beyond words at the thought of the upcoming school year and what option is the best for him. I know the socialization and daily routine are absolutely paramount for Nico’s continual progress and growth, but not at the cost of our family’s health.

In a year with so many atrocities and so much despair, I want to carve out this one fragment of time and just hang on to it for dear life. Who knows if these moments will ever be replicated again. Autism can shift and change at any time and take Nico in a completely different direction.

But, what I do know is that Nico is happy. Nico is having fun. Nico is surrounded by his family who seem to magically evoke this incredible transformation which frees him of challenges and limitations.

So, for now, I plan on giving Nico a summer filled with as much socially distanced, quality, quarantined family fun time as possible.

Let’s just hope that this blog post will not trigger a tsunami of superstitious jinxing (which really means Nico decides to basically say, “just joking, mom…here’s an epic meltdown for ya!”) at its conclusion. Fingers crossed!

Stay safe and healthy, but remember to live, love, and laugh everyday. We’re all in this together.

A Mother’s Love

I don’t think there is any stronger love than that of a mother’s. There is not anything I wouldn’t do for Nico to make his life easier, less of a struggle, more fulfilled, or more neurotypical. I have made ultimate sacrifices for him that have truly tested my faith, patience, and resolve, but I literally could not imagine NOT working this hard for my child.

This pandemic has been catastrophic on many levels and it has affected our little family in many ways, especially Nico. The only silver linings I have clung to have been the fact that he has his ABA therapy everyday and our backyard haven. We follow strict guidelines so that we know both Nico’s therapist and Nico are healthy each day they work together. Without ABA right now, I don’t know where we would be. And, when Nico comes home he enjoys his pool, swing, and trampoline in the backyard since going out or traveling is out of the question. That has been our life for months now and because of this dramatic change in daily life, Nico has regressed. I know he will have to relearn so much. It keeps me up at night just thinking about. I walk around my house with knots in my stomach just thinking about it.

As a mother, my life is my children. I have two now so I have to spend it equally between both of them, but that can be tough when one has special needs. I just always feel myself being pulled a little bit more towards Nico. Being a bit more protective of Nico. Wanting to give Nico a smidge more attention otherwise he would really never interact with his father, brother and me. Nico would be perfectly content to sit in the living room with us, but live in his own world surrounded by his books, his iPad, and his little knickknacks he finds around the house and collects in a pile. I catch myself staring at him, just wondering what he’s thinking. Wondering if he even knows or cares that his mother is literally watching him from just a few feet away with such wonderment and concern. I wish so many things for him. Every chance I get, I am trying to get him to talk appropriately or engage with us in functional ways. I live for the moments when he wants to be tickled or wants to show us his dance moves. It shows me that he can connect to us when he wants to.

Nico has no idea how much I truly love him. It’s an all-consuming feeling. I cannot find enough words to even describe the feeling. I tell him every single day, multiple times a day, that I love him. He very rarely registers what I’m saying, but I have to believe he knows what those words mean and he knows that he is loved. I now fully understand what my mom meant when she said those same words to me over 20 years ago. “You have no idea how much I love you…truly you don’t and I will never be able to explain it to you.” I found it so overly dramatic at the time, but I allowed her to hug me and gush over me because we were setting up our home for my high school graduation party and she was feeling very sentimental. I gave her a big kiss, told her I loved her to pieces, and then took off before she got weepy because I knew it was headed in that direction and I was a teenager just wanting to finish my chores. I knew she loved me, but as I reflect back…I really had no idea how much she loved me.

I am beyond thankful though that we had that moment together and she spoke those words to me because it would be our last mother/daughter moment. I would not have her with me after that day and I discovered there truly is no substitute for that kind of love—a mother’s love.

It’s a love that makes you wake up at 7am every weekend to make your children their favorite pancakes.

It’s a love that makes you take out every seed from a watermelon because you know your kids struggle with the seeds.

It’s a love that has you making your own secret blend of cinnamon sugar for your child’s favorite food in the world—cinnamon toast—because it makes him deliriously happy.

It’s a love that makes you stay up until 2am on the weekends to play all the Super Mario Bros. games because it is the best time to spend quality time with your one child while the other is sound asleep.

It’s a love that makes you want to sing to your child each morning and evening because his eyes radiate and it puts a smile on his face to hear music.

It’s a love that makes you leave everyone and everything you have ever known and move to a whole new state so your child can have a better quality of life despite your fears and reservations.

And, it’s a love that will continue to break you down, build you back up, carry you through, knock you over, and make you whole again because it’s a love reserved for your children.

My sons have no clue how much I absolutely love and adore them, despite how much I smother them with kisses and hugs and “I love you.” Just like I had no clue how much my mother truly loved and adored me in those childhood moments. But, I am so grateful to her because she taught me what a mother’s love should look like and feel like and what it endures and sacrifices.

So June 27th will always be my day to go an extra mile in showing my sons what a mother’s love feels like because there is nothing else like it. And for my Nico, I will continue to try and move mountains for you because you deserve nothing less.

To My Boys on Mother’s Day

Mother’s Day will forever be a bittersweet day for me; I yearn for my mother to be by my side. It’s one of life’s real cruelties to lose a mother, especially at a young age, because a mother’s love is one that can never be replicated. It’s one of a kind. The bond my mother and I shared was truly symbiotic.

The job of a mother is, ultimately, the most important job. We literally bring life into the world. When I held my boys in my arms for the first time, my life was forever changed. It was no longer just mine. An equally over-joyous and overwhelming feeling consumed me when I thought about the immense responsibility I was about to take on as a mother, yet I couldn’t imagine anyone else taking care of my child better than I could so I took that baby in my arms and motherhood commenced. The bond was formed between mother and son.

My boys are my life. I live to just watch them be their unique little selves. And, the biggest silver lining to come out of this nightmarish pandemic is that I have been able to spend so much quality time with them together and separately. It truly has been a blessing because it is these times that will help build the bond between my boys and strengthen the love they have for each other. These moments will also help cement their bond with me, I hope, and teach them that a mother’s love is all-encompassing.

But as I lay here on the eve of this somewhat muted Mother’s Day, I thought I would write to my boys. Something for them to read (and to look back on) during a time when they lived in a world that was uncertain and precarious.

To my Nico and Maximo:

  • I can never fully express how much I love you both in words. Like, I literally can’t find the right words to express how much I absolutely love the two of you…and I’m a writer…talk about ironic.
  • I am a very strong woman, but I cry pretty easily so be prepared. You may take turns consoling me and bringing me tissues. Oh, and this will also probably mean you’ll end up marrying someone who is equally as emotional as your mother because that seems to be how things work out so…you’re welcome.
  • You are a joy and a pain in my life. When you are happy, I am over-the-moon ecstatically happy for you, but when you are sad it is the most heart-wrenching, hopeless feeling ever because all I want to do is make it better for you and I know that won’t always be possible.
  • I have to will myself not to kiss and hug and squeeze you over and over. I am very affectionate so you will need to humor me when I ask for a kiss or I expect a hug every single time I see you. I promise, I will never (intentionally) embarrass you with my affection as you get older.
  • You will always be my “babies.” I will try very hard to not coddle you and make sure to give you space, but I can’t promise I won’t use the terms of endearment I have had for you since you were born. Hey listen, your grandpa still calls me “pussycat” and I’m a grown woman for Pete’s sake. Parents adore their kids…what can I tell ya?
  • I will lose my patience with you and it probably won’t be pretty….ask your father. But, if I do then you must have done something pretty stupid or pretty bad because I have a lot of patience. So, word to the wise: Don’t make me lose my patience. You don’t want to see the “evil eyes.” Instead, think before you speak or act.
  • You will experience some challenges in life. Everyone does. I have experienced plenty so I will be one of the best people to come to when you need a shoulder to lean on or cry on. Yes, I said cry on. It will be ok for you to cry. Men are allowed to cry. I am a very good listener and I promise I won’t try to fix the problem if you don’t want me to. I will simply listen. Just please come to me every once in awhile.
  • I stare at you both all the time. I am constantly taking mental photographs of you in my mind because time goes by so quickly and we are never promised a tomorrow. I know that’s pretty morbid, but it’s true. I learned that the hard way with your grandma’s passing, but I adored your grandma so I watched her a lot and have many mental photographs of her to keep me comfort. I hope you will do the same with me.
  • You two are going to be tight for life. I can feel it. Yes, you will have disagreements, but I know you will always look out for each other. I am trying to instill that in you both now. I will always encourage you two to be close so don’t get annoyed if you share a room for an unusually long time. Just kidding…maybe.
  • I have been blessed with boys who symbolize the love I have for their father and who will forever know me as their mother. I love you both with an unconditional love. A love that you can always count on to carry you through anything. Thank you for making me a mom.