When Dana turned 3 we put her in pre-school for the first time. It had been a hellish 2 years for all of us and since I was still quite sick, we felt it best if she got out of the house for a few hours a day to enjoy a more positive environment. There really are no words to describe how excited she was that day. “I’m so big! I’m so big! I go to school now mom because I’m so big!” As emotional as I was I couldn’t help but get caught up in her enthusiasm. How do I describe the outfit? Let me think. Remember Justice? Imagine if Justice could vomit all over your daughter. Got a visual? Even the shoes were made of glitter. And to complete the outfit she had a pink, leopard print backpack with a big letter D on the front. I sometimes imagine her walking in on that first day, dropping the backpack and announcing to the class, “It’s all right, I’m here now, and things will be running more smoothly from this point forward.”

We pulled up to the school and as soon as we crossed the parking lot she let go of my hand and ran towards the door as fast as her little legs could carry her. She opened the door front door, turned around, looked at me incredulously and said “I don’t need you,” then stepped inside.

Now I know what you’re thinking: “That’s so sad!” But I didn’t see it that way, because Dana doesn’t need me and she never did. She even rejected my breast milk. I tried to feed her in the hospital, but to no avail. The nurses said not to worry she’d latch on when we got home, but when we arrived and I tried it again she looked up at me as if to say, “You’re kidding right?” I dried up a few days later. The moment she started to crawl she crawled away from me. The moment she started to walk she walked away from me. The first day she managed 10 steps she walked right to the baby gate and starting pointing outwards as if to stay, “Mommy there’s a world out there and I want to see it. Let me out now Mommy, it’s time to let me go.”

And I know you’re probably crying thinking, “How did that not break your heart?” And at that time I couldn’t have answered you. Only now I think it’s because I always knew that something was coming, the way you can smell a storm in the air long before the clouds start to darken. In those 2 short years I had her all to myself, it seemed as if Dana and I were trying to squeeze a lifetime’s worth of love into every second and that every hug was more us clinging to one another before it started to rain.

I can still remember the feel of that sweet doctor’s hand in mine and the subtle smell of lilacs when she told me my body had shut off the oxygen supply to the boy and they’d be taking him out in the morning. “Go home,” she said. “Get as much sleep as you can and I’ll see you in a few hours.” I cried the whole way home. I cried when I got home. I cried and cried and cried not because of what she’d told me, but because I could no longer quiet or ignore the little voice inside my head. A sound like a leaf falling from a tree in the dark, at once startling but easily dismissed, was now the deafening reverberation of a bass drum. “There’s something wrong with this baby,” it sang. “Something very wrong. Wrong enough for your body to want him out. Wrong enough that your body is willing to let him suffocate.”

So yes I cried, loud and pitiful tears, until I heard her little feet on the stairs.

“Mommy babies coming tomorrow?”

“Yes sweetie they are isn’t that exciting?”

“Aunt Audra is taking me big slide.”

“I know I’m jealous.”

And this is the part I will never forget. She looked at me with so much love and sympathy, kissed my cheek and said, “You don’t have to worry Mommy, I’ll be fine.” Not you will be fine, because I wasn’t, Not it will be fine, because he wasn’t. I’ll be fine. And she was.

Fast forward 12 years to Kevin’s first Special Olympics swimming competition at Trenton State. Understand this is a HUGE deal for us because Kevin has never slept over with anyone except family and this is a weekend long event!

Now if you are an organizer of the Special Olympics, let me begin with thank you, thank you, thank you, God bless you, the kingdom of heaven is yours and in case I forgot to say it, thank you. That being said, for the benefit of us “newbies” I’d like to offer a few suggestions. For example, when you pull into Trenton State there’s a huge banner above the entrance that reads, “Welcome To The Special Olympic Summer Games!!!!” I recommend you change that sign to read something along the lines of……”This Is The Special Olympics. You Are About To See Some Really Weird Shit. Deal.” It might help people like myself not be so shocked when they walk out of the parking garage and immediately get hit in the head with not one but 3 tennis balls. It might also assuage the shock of being asked by a complete stranger if I have my period immediately upon entering the aquatic center. Only to be told that if I DO have my period it’s best not to enter the pool because it will attract the sharks. Just a suggestion.

Anyhoo, after a lovely and detailed exchange regarding my menstrual cycle I set out to find Kevin before the races began to wish him luck. After all I’d been away from him for almost 24 hours and was starting to suffer the effects of acute separation anxiety. It’s one of the reasons why, when the volunteers asked me if Kevin could sleep over, I initially said no.

Why not?

Well he still wears pull-ups at night I don’t want you having to deal with that.

Mrs. Ulriksen it’s the Special Olympics, they all wear pull-ups at night.

Well, he is very nasty in the morning before he’s had his medication.

So am I. Mrs. Ulriksen he wants to sleep over with us, let him.

So I did, but I didn’t like it, because when it comes to Kevin, I am a shameless helicopter mom. All club members are shameless helicopter moms and no one bothers us about it except………Special Olympics volunteers. That’s what their T-shirts say: “I am a Special Olympics Volunteer.”

Attention Special Olympic organizers!!!!!!! This is my second suggestion: In the interest of being transparent I recommend you change the Tshirts to say, “I am a member of the Parent Police: stop hovering or I’ll backhand you.” These people are no joke. I got to the auditorium entrance and asked the sweet looking college girl if I could say hi to Kevin and she said, “No.” Just like that, “No.” Slightly taken aback I asked, “Uhh, Why?” And she very diplomatically replied, “When your son finishes his race he’ll be brought up to the gymnasium for awards. You can see him then.” So annoyed but unwilling to be back-handed I walked upstairs to the bleachers and when they marched Kevin’s team in I jumped up and down and screamed and waved and made a complete ass out of myself. When the race was over I ran up to the gymnasium and asked the first Parent Police Officer I could find, “May I please see my son?” “No,” he replied. “You can see him after he walks off the podium with his medal. Have a seat please.” Meany.  So finally Kevin gets his medal and I get to hug him and tell him how proud I am of him. After a lot of hugs and kisses I said, “Hey buddy it’s 12:00 they’re setting up a really yummy-looking lunch outside you wanna eat with me?” Then his coach appeared to congratulate him and asked, “Kevin it’s 12:00 are you eating with Mommy or are you coming out to lunch with the team?” And without skipping a beat Kevin said, “I eat wif my team.” “May I join you guys?” I asked the coach. And before the man could open his mouth Kevin opened his and said, “No mom you say here. I not need you.” Then he walked away to rejoin his teammates. Now I’m guessing I must have turned white as a sheet because Kevin’s coach, who is typically quite impersonal, very gently said, “You can join us for dinner if you’d like,” before he too walked away.

I don’t know how long I stood there. It must have been quite a long time because the moment I realized I was standing there, staring at the door, the room was empty. It was then that I rehearsed a little conversation I would never have with Kevin in my head.

“You can’t tell me that Kevin. You can’t. It’s one thing for Dana to say it because I needed her to be independent. She couldn’t need me because you needed me so much. You need me more than food or water or breath or love, I’m everything to you. When I brought you home you screamed and screamed and I got so sick I ended up in the hospital. The depression got so bad I couldn’t eat or breath and I told them the truth. It was humiliating and sickening but I told them all the truth about wanting to die and wanting you to die and I got help: for you. I got better. It took a long time but I got better and as soon as I did you got worse.

There was no one to tell me what to do I had to figure everything out by myself and all the doctors told me was what was wrong and what you couldn’t do. You couldn’t talk, but eventually I fixed it. You couldn’t walk, but I fixed it. You bit your classmates and pissed on the walls in Kindergarten and they talked about sending you out of district and I fixed it. You hit me and kicked me, broke my things, attacked my dog and sometimes you still do but I’m fixing it. Little by little I’ve chipped away at everything they said you couldn’t do and everything they said you’d never be and you’re here at the Special Olympics with a gold medal around your neck having defied everyone’s expectations because of ME!!!! I made this happen. I gave up everything for you. Did we go on vacation every year like other families? No. Why? Because speech therapy and occupational therapy and social skills training and behaviorists and special needs personal trainers aren’t covered by insurance. We’ve begged, borrowed and stolen to get you where you are and I’ve never asked for anything in return but for you to hold me like you’d rather die than live without me. Because the way you’ve needed me all these years, the way you look at me like I’m your whole existence has kept me fighting. It’s kept me living and it has kept me dreaming. So don’t tell me you don’t need me anymore Kevin. Don’t ever ever say that because if you do…………. I won’t know who I am anymore.

By now people started had started filing in and I deduced that lunch was over. I knew Kevin would be back in what the parent police called the holding tank, and I knew what I needed to do. I walked to the auditorium where the same pretty girl was standing guard and said, “I need to see my son.” And before she could open her mouth to say it I said, “No.” This confused her. “Look miss, I understand you have a job to do but my son, who up until today has been my ENTIRE life, just told me he didn’t need me anymore. He didn’t mean it. What he meant is that all the work I’ve put in is finally paying off and he’s becoming more independent so I need to back off a little. And I can do that. I can.”

Deep breath Rachel

“I can do it but I need to see him and know he chose to eat lunch with his teammates over me not because he doesn’t love me but because he’s growing up.”