Today was supposed to be great.
The sweet little girl whose Daddy I married when she was just 7 was graduating high school today. My hubby was beaming. Grandparents were flying in from all directions. She did it! With a 4.0! She is going onto college with an athletic scholarship! Days of festivities were planned and the graduation ceremony at a local college stadium was kicking it all off. We had our tickets. We had pretty new outfits, proud smiles plastered across our faces and just 7 days to go.
Around that same time, a letter came home from the High School. It was signed by the Principal. It was co-signed by Dean of the college hosting the ceremony. Amidst the medium-sized print that explained the details of the big day, one bold and extra-large sentence jumped off the page at me.
NO STROLLERS ARE ALLOWED ON CAMPUS.
Gulp.
But…but…How will I get my little man around?
Anxiety was setting in.
Don’t panic. This is simple. Just call. There’s a simple way around this rule and you will find it.
With a knot in my stomach, I dialed the phone number at the bottom of the letter. I flipped the page over and prepared some bullet points for the conversation/confrontation. Upon connecting with a live person, I steadied my voice and launched into it. “It” meaning the “for-the-love-of-God-help-me-what-am-I-supposed-to-do-ness” special needs mom pre-panic.
“Hi there, I’m hoping you’ll be able to help me. We’ll be attending the HS grad ceremony next week at your facility and I saw the letter that states your policy on strollers. I have a son with complex special needs —
{{The cliff notes on little man. Hypoxic-ischemic-encephalopathy. It’s kiiiiiiinda like a stroke for babies. Infants who survive this “event” often go on to be diagnosed with cerebral palsy as a result of the brain damage that occurs. Hypoxic (no oxygen) ischemic (no blood) encephalopathy (brain disease) – the brain is starved of blood and oxygen resulting in damage. I ramble when I’m nervous so this poor woman whose job it is to answer the phones at a college arena basically took a 10 minute crash course in pediatric neurology before I got to the point. Much like here.}}
“I don’t know how we’ll attend without his stroller. He won’t qualify for a wheelchair until age 3, he relies on a feeding tube for nutrition… I can’t park in the parking garage, walk two blocks to the stadium, wait in the line to enter, find seating (potentially up several flights of steep stairs) all while holding him and his feeding supplies, while in a crowd. He can’t support his own weight yet (very much like a newborn) and holding him (at 30+ lbs) is very quickly exhausting – please, I can’t miss this event. How can we attend?”
please don’t say get a babysitter….please don’t say get a babysitter….please don’t say get a babysitter
“Ma’am, please hold and let me transfer you to the right department.”
Three transfers later, I figured out how to tell my story much faster and we got where we needed to be. The angelic voice of Teresa came over the line to reassure me just as sweetly as if she was my very own momma – “Oh, noooo. Please, Miss. Do not worry for one more moment. You do what you need to do. Use your stroller. Tell anyone during admission that you need to be seated in the handicapped section. They will take you there and you will have no problems.”
No problems. NO PROBLEMS! What a concept. So I did not worry. I could attend sweet girl’s graduation with my little man. A wave of relief and gratitude washed over me. We would be there with bells on! Asking to sit in the handicapped section never even dawned on me prior to calling. (Maybe that says more about where I’m at in that whole denial/ acceptance part of the journey? Sigh.)
But problems we had. We arrived very early in the hopes of beating crowds but of course, everyone had the same idea. It was cuh-ray-zee. I felt a lot of eyes on me as I wheeled the stroller through the crowds outside the stadium. Was it my imagination, or was every parent of every writhing toddler looking at me like what the hell does she think she’s doing with that stroller?
Of course not. No one is looking at you. No one is thinking about you. Get over yourself.
After navigating the loitering crowds was the first stop – purse check. I offered up my purse/feeding supply bag to the guard with the bomb-detecting chopstick and he poked around it. He informed me that strollers were not allowed. I was ready for this. Big smile, cheerful demeanor – CHECK.
“Oh, thank you, I know. I’ve called ahead – my son has a disability and we’ll need to sit in the handica—“
“Go on ahead. Elevators are back and to the left.”
“Thanks!” Wow! That was so easy! Look at me go. Pat on the back for me. I did my due diligence. I called ahead. I am one together, grown-ass lady who advocates for my little man. We take no shit and make stuff happen. No strollers allowed, hmph. I am special needs mom. Hear me roar.
We shuffled forward and got in the line for the elevators. Several people in wheelchairs, lots of elderly, a few using canes, and a few seemingly able-bodied folks and even a few strollers were there. A mom and her brand new baby were in the stroller just one spot ahead of us in line. Naturally, I eavesdropped on the conversations around me. Their baby was only 5 days old. Surely they could bring their stroller in. They approached the next guard, ‘elevator guard,’ who let them know that no, surely they could not. It became clear that this section juuuuuust before the elevators was the stroller graveyard and he was the grim reaper – just collecting them. No stroller would pass. I begin to suspect that both Teresa and the semi-friendly guard up front betrayed me with his casual attitude towards strollers. New mom pleads her case. New baby was sleeping. New Mom and new Dad would take turns and roam the upstairs hallways, staying out of the seated area, they just didn’t want to wake the baby by parking the stroller. Elevator guard was steel faced and told them to park it. New mom huffed and puffed. Grandma and Grandpa shook their heads while new mom unbuckled sweet, soft, brand new baby and new Dad grabbed the diaper bag and parked it. Everyone looked pissed.
So now it’s my turn and I get to follow this scene. Joy of joys. Elevator guard looks me square in the face and says “NO STROLLERS.”
I meekly approach and attempt to keep my voice down low enough so that I’m not be screaming about disabilities but loud enough to sound like a lady who knows her rights and will be heard above the crowd. “Hi there, you see, I know everyone here has a reason for NEEDING their stroller, but my little man has special needs and we need to be seated in the handicapped section please.”
Elevator guard stands aside and allows us to enter the NEXT line for the elevator. He delivers one new morsel of information – only one family member can accompany little man. Of course darling Hubby offers, but…this is more his night than mine. His family is here for his daughter. He should go with them.
“Go babe, we’ll be fine.” Sure we will. I’ve got this. Grown-ass lady, no shit taker and all that.
“Text me if you need anything” he says and we kiss goodbye. We plan to meet in this same spot in about 3 hours. New Mom notices me as I push my stroller through and stand near her in line. Does she wonder why I was allowed to have my stroller? Is she pissed at me? And more importantly, why do I care?!
Now a 2nd elevator guard glances at us, gives me a big ol’ stop sign with her hand and says sternly – NO STROLLERS ARE ALLOWED HERE. Then, as if I am not standing directly in front of her, she yells to the 1st elevator guard – “WHY’D THIS STROLLER GET THROUGH?” to which the guard replies “KID’S HANDICAPPED” from a distance of about 20 feet away. At this point, people are looking back and forth (naturally eavesdropping, I guess) and I’m beginning to want to sink into the ground. Or cry. Or yell. Or flip everyone the bird while crying and yelling. We awkwardly wait for the elevator that takes a minute or two or forty to arrive and we make the ride up.
Surely this is it. They said the handicapped section is right there when you get off the elevator. You’re close now. Suck it up.
I exit the elevator and attempt to haul ass to our section. I don’t even make it 10 feet.
“Ma’am! Ma’am!” A young man hurries over to me with a look on his face that had me questioning if I’d inadvertently worn my dynamite-covered vest to the event.
“Ma’am. No strollers are allowed up here.”
I guess four was my limit. I just couldn’t do it politely a fourth time.
“OK, I guess I’m going to have to say this to every employee I pass tonight. I called ahead. I was told I would have no problems. My son has cerebral palsy and we need to sit in the handicapped section. For the love of God, would you please escort me there, so that I can just get there in peace?”
“Yes! Yes, of course. I apologize for your troubles ma’am. Yes, let me walk you to your section. It’s right over here.”
I wiped away a couple frustrated tears and we began to walk. We had barely turned in the right direction when a stout and surly looking woman with a walky-talky began to call his name, which I mostly forgot, but somehow still think was Corey. She waved the walky-talky back and forth over her head and came barreling toward us. “Corey. She cannot have that up here. Ma’am. You cannot have that stro-.”
And that’s when Mama lost it. “You must be joking. All I want to do is make it to the handicapped section. My son has cerebral palsy. We NEED HIS STROLLER. I CAN NOT CARRY HIM THIS DISTANCE.”
But in her eagerness to have me comply, she raised her voice back and I don’t believe she heard the words I actually said.
“Ma’am. You don’t understand. It is a fire hazard. There is nowhere for it to go. The aisles are narrow and the stairs are steep. YOU CAN NOT HAVE IT HERE. IT IS A FIRE HAZARD.”
At this point the tears began streaming. I am still coming to terms with my son’s disabilities. Your healthy baby having a hypoxic-ischemic-encephalopathy and nearly dying during delivery are not events you plan for. Watching him fight for his life and spend months in the intensive care unit will change you. When he needs a feeding tube and other various surgeries to survive and then eventually come home, you do your best to raise him and love him. You pray for him and then you curse God. You pray-apologize. You see the best in him. You think maybe, just maybe…everything will be ok. Then you go to the local library story time and see all the same age babies and it takes your breath away. Is he really disabled? I know what the doctors say. I know what the therapists say. I know what I see. But he is so young. Is it permanent? We can do anything we set our minds to. I don’t want to sit in the handicapped section. I don’t want any of this. I don’t want to be here.
But here I am.
“A fire hazard? Are you kidding me? What kind of place is this? WHERE DO YOU PUT THE DISABLED PEOPLE?! WHAT KIND OF PLACE IS THIS!!!”
Her face began to whiten and her co-worker placed his hand on her arm. He leaned in and whispered something to her as I continued to shriek.
“HE HAS A TUBE IN HIS STOMACH. I CAN’T MANAGE HIS NEXT FEEDING WITHOUT HIS STROLLER. I CALLED AHEAD. THEY SAID I WOULD HAVE NO PROBLEMS.”
And then she hugged me. She just grabbed me and hugged me tight to her while I caught my breath. She grabbed my shoulders and said “I am so sorry. I did not hear you. I was not listening. I looked at your baby. I didn’t think anything was wrong. He’s just so handsome.”
(The handsome comment didn’t bother me till later. Brain injuries don’t really affect your looks and certainly there are “good looking” people with disabilities, or people whose disabilities won’t always be obvious but who deserve understanding and the right to just get where they need to go without lengthy explanations. But in the moment I was happy to hear a compliment, because yes, he is handsome and I am still a gushing, proud, kinda-new momma too. However, as I sit and write this now, the lack of awareness still aches deep inside my belly and it makes me want to put my baby in a bubble where the “compliments” are light years away from the likes of “well he doesn’t look brain damaged.”)
“Thank you. He sure is handsome. He’s also the sweetest baby in the whole wide world. Now please, we are just trying to watch his sister graduate. I need to feed him very soon and we’ll need to be seated and settled.”
She linked arms with me and the young guard flanked my other side. We walked, three people side-by-side, little man in front, making our way to the section we needed to be in.
I wish I could say the drama ended there, but it didn’t. I thought upon arriving to “our section” that we would be safe – we’d be with our people and far, far away from the looks and questions. But I wheeled my stroller in and wouldn’t you know it, even babies with cerebral palsy get cranky. I tried to comfort him but he was beyond comforting. There were stares. Is it wrong to put words in their mouths? I just kept thinking that every glance meant “Why is this baby in our section? Oh, fancy pants moms these days, can’t just hold their babies, can’t do without their strollers, won’t hire a babysitter. Have to come up into OUR SECTION with those giant strollers and crying babies.” So I nervously smiled. I bounced him on my lap, I held him, I fed him… TUBE FED him, mind you. That was the ticket and he fell asleep. (Also, a few peeping Toms understood why we were in the section after all and smiled at us.) I put the supplies away and the ceremony was about to start. I sat back in my seat and listened to the valedictorian.
I might actually get to enjoy this.
I searched for sweet girl’s face amongst the sea of caps and gowns. I was startled out of my focused search by a tap on the shoulder.
“Excuse me. Strollers aren’t allowed up here. Would you mind at least scooting down to the end of the section, we have a wheelchair coming in.”
So… we scooted down. He slept. I saw nothing through my tears, heard nothing through my silent rage.
It wasn’t supposed to be about us. His abilities or disabilities. It wasn’t our day.
I just wanted to watch her graduate.
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