MUSINGS

My Child’s Keeper

 Yitti Berkovic

We aren’t really big on birthdays around the Berkovic house.

We celebrate with the typical trappings – a cake, a present, a card or some balloons – but usually I remember it’s my child’s birthday the night before the special day, and then I’m stuck making a mad dash to CVS and buying whatever they have in stock.

As the kids get older, it’s fun to make little tweaks to the birthday routine. Nowadays, the big kids choose sushi instead of birthday cake, they ask for cold hard cash over presents, and they prefer to celebrate with their friends than with their boring old parents.

But then there are Naftali’s birthdays.

Naftali’s birthdays have a way of staying frozen in time.

Even as he gets older and bigger, his preferences stay the same. He still likes a vanilla ice cream cake (G-d forbid it have even a trace of chocolate on it!), he still likes a present that has something to do with a fire truck (my toy closet looks like a fire station gift shop), and he still loves letting go of the helium balloons (a split-second after we hand them to him) so he can watch them soar into the sky. 

He never wants a crowd at his parties, so it’s always just us, and he never lets us sing happy birthday because he’s way too sensory to stomach the sound of our offkey singing. He likes predictability and sameness, and that makes planning his birthday celebration super easy for his last-minute and creatively challenged mother.

Except for this year.

This year, as Naftali’s birthday inches closer, I’m feeling strangely stuck.

Maybe it’s because it’s a milestone birthday – more for me than for him – and I might be a little knee-deep in denial.

Naftali is turning 18.

My oldest, my once teeny-tiny preemie, my little guy who forced me to grow up when I was still a child myself, will now be a legal adult.

It’s not a milestone because of shemoneh esrei l’chuppah – I made my peace long ago that it’s not within Naftali’s tafkid to marry.

It’s a milestone because in New York State, when a child with special needs turns 18, his or her parents must apply for legal guardianship if they want to continue making legal and medical decisions on their child’s behalf.

In honor of Naftali’s big birthday, I need to fill out stacks of paperwork, find a notary to attest to my signature, and sign on the dotted line for the right to do what I have always tried to do: protect the special neshama Hashem has entrusted in my care.

So, if I usually procrastinate before my children’s birthdays, I am now procrastinating on steroids. I don’t want to look at the calendar because as the day ticks nearer, I know I’m going to have to do something that is making me very emotional.

I am on a group chat with a lot of fellow “special moms” (if we may say so ourselves), and those mothers who have already crossed the guardianship bridge assure me it’s really no big deal. 

Just sign the papers and don’t think about it, they coax, it’s just part of him growing up.

I get it.

I know how to keep a stiff upper lip.

But what if I’m not ready to admit he’s all grown up?

What if it’s hard to accept that he has moved from a child with special needs to a man with special needs? 

When he was little, the gaps between him and his neurotypical peers never seemed as a wide. 

Even when he acted up, when he struggled and challenged, he was still so cute. I could hold him and hug him and soothe him in a way that made me feel like he was any other child who needed his mother.

Then suddenly he wasn’t so cute anymore.

He was big and he was loud, and if I tried to lift him off the ground or to hold him, I’d throw out my back. Before I knew it, he was wearing adult sized clothing and shaving every week. Now, he is taller than I am and weighs much more than I do, so when he’s scared or hurt or unhappy, I can’t hold him and rock him like I once did

The gaps between him and his neurotypical pers grow wider and wider. He still needs me to care for him like he is a child, but he is becoming a man.

A man who needs a guardian.

As his 18th birthday looms, I hired someone to help me with the guardianship paperwork because every time I looked at the forms, the words just swam before my eyes. 

The woman on the other line was kind and understanding, but she has done this process a million times, and she wasted no time in ripping off the Band-aid.  

“You and your husband won’t be able to take care of him forever, you know, so it’s important that you also choose a backup guardian.”

I struggled to process what she was saying.

A backup?

Someone other than his parents?

Who else would love him and understand him and enable him to maintain his routines and his rhythms – the way we did?

Who else would stay up with him at night when his body refuses to let him sleep, and who else would make sure there was no chocolate on his birthday cake and that there was a new fire truck waiting for him to enjoy?

She heard me faltering and she assured me, “You don’t have to choose a backup guardian right now. When your other kids are old enough, they can be chosen as backup guardians.”

I hung up he phone, fighting back my tears. She said it with so much confidence, but life is hard to predict. Would his siblings grow up to love him and care for him when we no longer can? Will their spouses welcome him into their homes when we no longer have the strength or the capacity to have him in our home?

These were terrifying questions, and they unearthed in me something that feels akin to grief. My friends who have daughters Naftali’s age are filling out seminary applications, but here I am, making my way through guardianship forms. Instead of my child flying the coop, I’m trying to make sure he can stay safely in my coop for as long as possible.

There is grief in knowing that I can’t take care of him forever, that life is fast and fleeting, that so many of the things we pretend are in our control have a way of slipping right through our fingers.

So I’m dreading his birthday, not because anything really changes that day, but because it feels like everything is beginning to change.

I know, this step is normal and natural and expected, and I’m going to do it like I’ve done a lot of hard things since Naftali was born: with faith that Hashem has a plan for us all and that I can only do my hishtadlus in the here and now.

But I’m going to hold on to these papers for a few more days, because this time, my pe-birthday procrastination isn’t due to laziness or a lack of creativity.  

This time, my procrastination is my heart’s way of asking for a little more time before doing something that hurts.