The Most Deserving

I’m currently on my work trip and will be gone for the next two days, so my anxiety is at an all-time high. Nico doesn’t do well typically when I’m gone, so I have to do a lot of prepping in the days leading up to my trips.

This includes filling out the “mommy away, mommy here” chart so he knows exactly when I am gone and when I will return, leaving him voice memos with our daily affirmations so my sister-in-law can play them each morning, dropping notes in his lunchbox with those same affirmations and a countdown until I return, and prepping his teacher weeks and days in advance so she can be ready for any meltdowns. We have found that when he is prepped like this, his school days are more regulated and he has fewer meltdowns.

Then there’s the morning-of-travel routine which includes me getting dressed and ready by “candlelight”—aka cell phone flashlight mode—so I don’t wake him up (or his younger brother which would be actually even worse since he is still attached to the invisible umbilical cord). I tip toe around the house until I am safely in my car and neither child has been woken up, and then pray like the dickens that they don’t wake up until it’s time.

It’s exhausting; yet, I wouldn’t have it any other way. To lessen Nico’s challenges is truly my top priority each day. I’m not trying to eliminate EVERY struggle for him; that is simply unrealistic and won’t do him any good in the years to come. Life will always be filled with challenges and he won’t always have me to lessen them for him. But, as long as I can for as long as I can, I will.

Just writing that makes me choke up instantly. I know you’ve heard me say that constantly, but it LITERALLY tugs at my heart each minute of every day. I know I won’t live forever and it freaks me out to no end thinking about Nico’s life without me. That is why I try my hardest to balance my need to coddle him with my need to teach him how to be comfortable with struggle.

I’m sure the mom that is on this plane with me thinks about it too. I know she’s an autism mom because her son is behaving just like my Neeks. Using lots of scripting, struggling to keep his voice as an “inside voice” (which she is constantly reminding him of as he talks to her at the top of his lungs), and playing with his prized toys, which are little stuffed animals and pieces of paper.

I wish I could send her a signal or sign letting her know “I feel you” and understand every thought, worry, emotion, and feeling she is having as she works to help her son CONFORM to the norms society has dictated for him.

He can’t be loud.

He can’t make noises or talk out loud about things that don’t make sense to others around him.

He can’t exhibit any kind of struggle or adverse behaviors that his mom wouldn’t be able to squash quickly because he’ll then be seen as difficult or entitled.

He basically can’t be himself.

He can’t be autistic.

Why why why must our kids constantly work to conform to others’ expectations instead of others learning what autism looks like and being open and accepting of it?? This is why that mom and I are tired and anxious and scared everyday.

We are raising our autistic sons in a world that STILL refuses to be open to difference and individuality, which is BEYOND ironic since that is literally what our world is grounded in: DIFFERENCE and INDIVIDUALITY.

I overheard the little boy say “We’re going to see Grandpa!” and the mom looked at him with such elation and replied, “We sure are! Grandpa can’t wait to see you. He loves you so much!”

I thought I was going to break down in tears right then and there. My dad loved Nico more than life itself and it gave me infinite comfort that Nico had him as a protector and constant source of love for the last 10 years of his life. I can only imagine how excited this mom is to see her son’s grandpa. It warms my heart just thinking about the comfort and maybe even relief she will feel when they come together.

Nico is my absolute heart and all I want for him is to be happy and content in his own world as much as possible. That is why I do all I do for him on these travel days.

He deserves it. He deserves a mom who knows him inside and out, and who will continue to work to make the world he lives in one that makes space for him. A world that SEES him and says,

“Come on! We see you and want you to be exactly who you are because you DESERVE nothing less!”

I want our world to say the same thing to this child and his mom who are on this plane with me because they are awesome and DESERVE nothing less!

Hell…I just want this plane full of people to say that to them. The looks some of these people have given because this little boy was too loud and/or was displaying behaviors they didn’t like is appalling. Such a shame.

Oh well…can’t let that get me down. I just have to keep focusing on what my Nico deserves.

I sure hope he has good days while I’m gone. I hope all that I have done to set him up for peace and comfort are enough. And, I so hope that that grandpa is waiting with open arms to embrace his grandson and his mama when they arrive at the airport.

I guess Neeks and I don’t have it too rough though…Grandpa is ALWAYS with us, watching over us, protecting us, and sending us all his love straight to our hearts and minds every minute of our day. He knows we both DESERVE it!