Special Needs Siblings

Just One Special Night

We made it to the play in time to get seats for opening night - a borderline Biblical miracle. It was my daughter’s first time in drama club and they had practiced for months. I wanted this one night to be special for her - my talented, easy going, doesn’t-ask-for-a-lot daughter - because she deserved it, maybe more than most.

I’d managed to find both black AND white hairspray for her. My purse held a full powered Nintendo DS and multiple snack options for my son. Hopefully we could skip an apocalyptic meltdown, just this once. Then in the parking lot, I noticed that people (as in almost every other parent) had flowers. It had just never occurred to me to bring a bouquet. 

Refusing to accepting defeat, I sent my son inside to get seats and rushed to the nearest grocery store. I found gorgeous pink roses - a dozen for $10 (such a deal!) and Papyrus cards (one for $7.95 - that has to be a typo, right?! Aren’t cards like a buck ninety-five? Where have I been?).

I paid, jumped back in the car and made it to the middle school in time to discover my son teetering on the edge of the cliff of crazy. He’d sat down in the seat he wanted, only to have a parent tell him that it was saved. 

Never mind that saving the entire front row seemed like a Third Reich move to me, but the RULE is that seats can only be saved if they have a ticket on them. AND THESE SEATS HAD NO TICKETS ON THEM. So, Ms. Totalitarian Land Grabber, this is not Poland and you cannot just annex all the chairs by planting your Post-it note flags. I would have taken her on, but my Howitzer was in the shop. WWIII went on hold while I frantically searched for other seats in the now almost-full auditorium.

My brilliant, funny, sometimes soul-suckingly frustrating son could not accept this thwarting of the rules and move on, any more than Obama can accept that ISIS is really not called ISIL. I’ve learned from more error than trial however, that attempting to squelch my son’s frustration is like stepping on jello - the more you push, the more it squirts out all over everything.

Gently, I suggested he “Let It Go” (the play was called “Saving Disney” after all), with no success. One true thing about my son is that he is tenacious - stage 4 metastatic pancreatic cancer tenacious - especially about following rules. For the rest of the play he obsessively, painfully banged his elbow against his hip, while loudly discussing the injustice of it all.

When my daughter stepped on stage as Cruella de Ville, the audience actually gasped a little. She was stunning - beautiful and mature beyond her years. The spotlight loved her. I basked in her reflected glow, while frequently shushing my son.

The play was a success (glitches to be sure, but not torture, so kudos to them). But it kills me that so often my daughter’s special moments take a back seat to my son’s special needs. I wish I could tell you that I can be a physician, a single mom of twins (not Plan A, I assure you), cook gourmet organic meals, keep my son afloat and give my daughter the attention she deserves, but - I can’t. My sense of humor, my energy, my patience and just my day run out with so very much left to do.

A week earlier, my nanny had rushed my son to the ER in the hospital where I was working. He’d written a suicide note at school. He asked that I not tell his sister, so I didn’t - but she’s a smart girl.

She texted him the following message: 

Ti amp *amo.

What does that mean?

I love you in Italian.

Thank you. Sorry if I made you worried about me. Were you worried about me?

Ya, but mama said you were ok, so I didn’t worry too much. I hope you feel better. 

My heart bleeds for my son who spends every day swimming upstream against the Class V rapids of middle school life. The currents can be treacherous for most kids, but they are torture for my son, who lives outside the main stream. On good days he ends up exhausted, treading water; other days he’s close to drowning.

Every time “Middle School” comes up on my phone, I feel end-of-the-world dread. What’s happened now? Where do I find the emotional duct tape to keep my son’s world from collapsing? Can he stay in school - do I want him to?

But my heart also aches for my daughter, who gets pulled into her brother’s undertow. And I have a special understanding of her - because I was her. 

When I was growing up, my brother had so many needs that did not feel special to me. His crises were ravenous, chewing up and spitting out birthdays, vacations and large chunks of my childhood. Invariably they were timed to cancel out my accomplishments. (One was the day I graduated from medical school, another the day I had my twins.)

So I desperately wanted this one night to be special for my daughter: full-on, 1000-watt, white-hot, star-power special. Still, I don’t know how to let her shine without making my son’s darkness darker.

When we were leaving the play, my son said, “I told her before the show that you were getting flowers, was it supposed to be a secret? If you want something to be a secret, Mom, you have to tell me. You know I don’t have the social skills to get that on my own.”

I wanted to apologize to my daughter for everything, when my son turned to her and said, “You looked beautiful tonight, like a real movie star.”

So maybe we pulled it off after all.