Fins and Gills. I mean it.

We had made it almost ten years without Benjamin needing anesthesia for anything at all. 2013 was a year that scarred us more than a little because of the multiple surgeries he required but honestly he had already had more than I can count before that year happened. 

Regardless it had been ten years. Ten wonderful, glorious, no-need-to-panic-fret-and-bake-all-the-cookies years. 

And really, today was not a huge deal. He needed an endoscopy and that required him to be sedated. No big deal really. 

Except that in the ten years since his last surgery, Benjamin has aged ten years (funny how time works like that) and so went in to this procedure as an adult. At an adult hospital. Always he had been at children's hospitals. Always. But not today.

We rolled in several minutes ahead of schedule (That is not relevant to the story but by golly I needed it documented somewhere that we were E.A.R.L.Y.) After waiting for a while, the admissions desk clerk asked me for his name and birthday. Let me say that one more time: She finally came to her desk where we had been waiting for almost ten minutes, and then proceeded to look at me and ask "What is his name and birthday?"

I turned and looked at Benjamin without opening my mouth. He replied to her and to her credit she asked him the rest of the questions.

Benjamin had been worrying about this appointment for days. He had some specific requests and I was so proud that he verbalized them all. "Please make a note on my chart that I want my mother to go back to pre-op to help me." She said she would. "Also, please note that I want her brought back to be in recovery when I wake up." She agreed to note it.

I thought Benjamin just needed my emotional support. I assumed the staff would be able to meet his basic needs in this adult hospital where healthcare professionals care for patients all day every day.

But Benjamin knew. I don't know how he knew but he knew. He insisted I be present because they wouldn't know how to help him. They wouldn't know what to do for him. I am not sure those professionals could have known less if he had swam in asking them to care for his fins and gills.

I got him undressed and in his gown and on to the bed.

Nurse: "Sir could you sit up for me?"

Benjamin: "No. I can not."

Me: "I can hold him up, would that help?"

Nurse: "Uh yeah."

To her credit, the anesthesiologist came in and met him and determined to do his IV herself certain that it would be tricky to get a vein. But then she blew my warm feelings:

"Can you straighten your arm more?"

Benjamin: "No. I can not."

Me: "Can I help you?"

Nurse: "In the procedure room you will have to roll onto your side. Ok?"

Benjamin: "No. I can't roll myself onto my side."

Nurse: Blank stare.

And on and on and on it went. Are you paralyzed? No, I have Cerebral Palsy. Can you move your feet? A bit, see.

The recovery nurse was perhaps the most condescending of them all. I kept hoping his tone was just insulting my ears, that Benjamin was still feeling relaxed enough not to notice. But of course, he noticed. It was bad.

He started by reading the findings of the endoscopy. I wish I could explain his tone of frivolity. That was bad enough but then he turned to Benjamin and suggested that he eat small meals to help with his reflux. Benjamin assured him that he has been doing that for two years. Don't eat close to bedtime. Don't lay flat at night. Don't.....

All things Benjamin has tried in the hopes that he could find a way to manage something that has forced him here, today, in an endoscopy suite recovering from something he has avoided as long as he can, dreaded since the day it was scheduled.

And maybe reading that paragraph, you are thinking I am over-reacting, he was probably just doing his job. And to that I would kindly ask you to re-read the suggestions but in a voice as if you are speaking to a toddler. A disobedient toddler.

Understand now?

Benjamin needed to sign the release form. I placed the pen in his hand and positioned the clipboard for him to sign. He was still a bit relaxed, struggling to hold the pen in a firm grasp but he had it. As Benjamin does -- and many people with CP do -- when he is working hard to complete a task, he looked up at the ceiling, a spastic involuntary muscle reaction.

Recovery nurse: "Hey, you need to look where you are signing."

He doesn't, he trusts I have the paper positioned correctly. He can't. His body does what it wants to do.

Oh I am not really angry at this team of healthcare workers. I would invite most of them over for coffee as a matter of fact. I think they were doing what they could with the knowledge they have been given. 

Rather, I am here typing and venting and trying to discern what in the world could have helped this situation. I firmly believe with every fiber of my being that we must (must must must) provide our healthcare professionals more disability awareness training while they are in school, as well as after for continuing education. I don't mean a half paragraph in the textbooks either. I mean expose them to a variety of disabilities -- have them treat, examine, talk with people with actual disabilities.

No one we encountered today had any idea what Cerebral Palsy was or how it affected Benjamin. Earlier this week he spent an hour with the pre-op nurse by phone answering pages of questions about himself and his abilities, etc. We did not do some sneak attack stuff that didn't allow them to have a heads up as to their patient today.

And yet.

Maybe next time he SHOULD show up with the fins and gills.

I vote for Benjamin.

Just last week I had the privilege of standing with Wade and my friend, Carrie, the social worker for his Cerebral Palsy team, virtually as we recorded a talk on Caregiver Stress for the upcoming American Academy of Cerebral Palsy and Developmental Medicine Meeting.

(Never mind that this meeting was to be held in New Orleans and Wade and I had been planning for years the fun restaurants we intended to take the team to...but alas Covid means the entire thing will be virtual.)

My point is not to grieve a trip to the Crescent City (though I am grieving), my point is that the information on the unique stress for caregivers is fresh on mind. The data, the statistics, the tools for working through and around it. Fresh. On. My. Mind.

Carrie does a beautiful job explaining how in parents of children with special healthcare needs, the baseline mental health level is one of stress. And while I have struggled for years to accept these words, to own them for myself, I think it is important that I say: The baseline level of stress in our home is a high baseline. High.

This does not mean that joy is not pervasive. Oh goodness, we have so much joy. This does not mean that our family doesn't know how to have fun. Do I need to post some Mickey-Mouse-Ear-Clad-Shraders to remind you of the before-Covid times and the fun this family has together?

But the bottom line is that when your baseline is already high, any added stressor can make life feel catastrophic. For example, a tornado ripping through your yard might cause you to be completely stressed out and overwhelmed. A pandemic that kills hundreds of thousands stresses every one out admittedly but for the family with special healthcare needs already, the stress can paralyze.

I am not saying all of this because I need your pity. I do need your awareness. I have threatened to make t-shirts.

All of the data, statistics, coping skills are fresh on my mind. But yesterday, we hit a snag with Benjamin's care team. The details are not important except to say that this is hard. Trusting someone else with your child's care is hard....even when child is a grown adult.  Having care providers in your home several hours a day, often with nothing to do but analyze every move you make is hard. Making sure the young adult who has never done his day to day care himself knows how to articulate his needs is hard.  

And yesterday I forgot all the coping skills as all the hard spilled out of my eyes. And when I had dried them off, when I had received comforting texts from Philly (my Claire), South Carolina, and Mississippi (Thanks, Tupelo Girls!), and when I was ready to go forth again, the hard spilled out once more. And so I pounded out a run on the treadmill, hoping that would be the thing, but the hard spilled out again. And when I cleaned my face and got my shower and dressed to take my favorite 14-year-old to get her ears pierced (Again. You will have to see the PowerPoint Presentation involved in convincing us to do this!), and my new friend said she had heard it was a rough day, stupid hard spilled out of my eyes again.

And then young adult -- who is not stupid and not the reason for my tears -- felt like he was in fact the reason for my tears. And so we talked and discussed and brainstormed. He too feels the absolute weight of trusting people who aren't always trustworthy, of course he does. Of course he feels it more than I can even imagine. He feels the weight of having to count on people who don't always fully embrace the role he needs them to embrace, who can't understand that there is more to this job than simply serving him meals.

I got a call today asking for a reference for a former care attendant during our time in Mississippi. I may have been a smidge over-exuberant as I recalled how this attendant could think for herself in times of crisis, how she had initiative to go the extra mile, to do the task I had not yet realized needed doing, to brainstorm for the most effective manner of providing Benjamin's care. Oh how I miss our Mississippi team. 

But today, I got to serve as Benjamin's attendant as he worked for his Senate candidate during the Delaware primary election. That he was incredible is not a surprise to me. But listening to him as he talked to voters, I was once again reminded of all of his gifts. Benjamin's worth is not limited to his motor skills. His worth is not dependent on an attendant. 

Benjamin is an intelligent thinker, an avid researcher, an articulate speaker, and a charismatic communicator. I watched voter after voter stop and just listen to him today. I watched voter after voter return to the parking lot after casting their vote and thank him for the education he offered. I watched as voter after voter assured him they had in fact voted for Jessica.

After a hard, challenging yesterday I am so thankful that today reminded me of why we fight for Benjamin's rights, why we fight to hire the right team, and why we fight to ensure he gets to chase his dreams.

I don't know how his candidate will fare across the state -- she is the underdog for sure. But I do know that I will cast my vote for Benjamin all day long in the race against all the hard things this life has to offer. 

And any other race he chooses to run.

Star Wars Fans since birth. Literally.

Wade and I had been dating for almost a year when he invited me to sit and view three movies back to back. He didn't tell me it was a test. But in hindsight, I am absolutely certain that the very future of our relationship hung in the balance. The very fact that he kept dating me after learning that young young me had not gone to the theater to see Star Wars, speaks volumes to the fact that he already loved me when this was discovered. Whew.

We were expecting triplets in 1997 when the original movies were re-released on the big screen in anticipation of the prequels. For "A New Hope" we braved the crowds and when the lobby of the Chicago movie theater turned in to a mash pit, a kind theater manager whisked me into the theater early. And so it began.

These babies kicked the entire movie. THE ENTIRE MOVIE! I was laughing out loud because already, I knew they were going to love watching it with their Dad.

When "The Empire Strikes Back" was re-released, the theater manager saw us when we walked in and whisked me to the calm and safety of the theater. And when "The Return of the Jedi" re-released, I was in the hospital on bed rest and had to miss it.

But in 1999, when "The Phantom Menace" opened, we stood in line all day to see it -- well, Wade did. I had three two year olds at home. The babysitter came in time for me to meet Wade to go in and FINALLY see a Star Wars movie the first time it was released.

After the hype died down a bit -- and by hype I mean the crowds because the hype was alive and well at our house -- Wade and I loaded three very excited two year olds and headed to the theater for their first action film. One bitty baby got scared when the previews started -- the surround sound hurt his little ears, I think. And when I went to take him to the lobby, his sister wanted to go with us, too. That left Dad with Benjamin. And Benjamin, well, Benjamin sat on Wade's lap, holding on to the seat in front of him talking to the screen:

"Hey Yoda! Daddy, it's Yoda!!!" 

"Jar Jar!!! Daddy, Jar Jar Binks!!!!"

"Darth Maul!!"

Don't worry, we were in a small town, months after the movie premiered and there was only one other Dad and child in the theater. My enthusiastic Star Wars fan didn't disturb anyone.

The next summer, when Benjamin needed surgery requiring a cast after, we were sitting with him when he woke in the recovery room. 

"Daddy, look! I am in a pod racer!!!"

And that boy didn't complain ONE time about wearing his "pod-racer" cast all summer!

And so last night, we were at the premiere of the latest movie, "The Rise of Skywalker." On a work night. On a school night. We were there. 

And I know, judging by my social media feed and the way we had to buy tickets months ago, (And you know, because I don't live under a rock!) that we are not a unique family in our love of Star Wars. And yet, last night, I felt super emotional as familiar faces popped up on the big screen. Memories swirled of babies kicking to the brilliant music of John Williams before they were even born, to the surgeries the films have distracted us from. 

I felt grateful for a universe that creates a level playing field for my boys with their friends (and strangers, and all of Twitter.).

But mostly, I felt grateful for shared experiences with their Dad. In my head I could hear the thousands of conversations over the years where they deconstruct the movies, where they read the books, where they anticipate the rides! I feel grateful for Jedis and lightsabers and even the Sith. 

And I am totally blaming my gratitude for the dozen or so times, I teared up last night. Totally.

So whatever the next generation of films offers, we will no doubt be huge fans. But last night -- for me anyway -- felt like saying thank you to the ones who began it all. And I loved every minute.

May the Force Be With You!

It is a gift to be seen.

My first-born (by a minute and a half but still) graduated from college yesterday. I have watched as for four years he has met obstacles with grace. He has overcome challenges with perseverance. He has pushed through physical limitations with a smile and an encouraging word for every single person on his campus. I am as proud of these attributes as I am the fact that he graduated magna cum laude with a degree in Dramatic writing and a minor in political science. No, I am not as proud. I am more proud.

I fully intended to spend my morning today trying to describe what yesterday meant to us -- in 5,000 or so words because the enormity of the emotion demands that (smile). But Benjamin's sister -- the triplet that does NOT have Cerebral Palsy -- has put the day into words in a far more beautiful way than I ever could. I am so grateful she is letting me share:

Sunday words by Claire (By my amazing precious girl)

As my brother rolled across the graduation stage, eyes bright, mouth open in a wide grin, his PCA (Personal care attendant) followed, and accepted his diploma. Slowly, beginning with the last row of faculty onstage, the entire auditorium stood up. My parents stood to my left, and I glanced at them out of the corner of my eye as I snapped photos as fast as I could. Tears freely fell down both of their faces, and as my mom held her camera to her eye, smile almost identical to Benjamin’s, her whole body shook with sobs.

As we all sat back down, my dad and I gripped my mom’s hands as the tears kept falling. I looked at the two of them, my strong parents, and felt the tears catch in my throat, too.

As I saw them cry at my brother’s graduation, I saw them crying when they held my brothers in their arms and received a diagnosis of Cerebral Palsy.

I saw them crying as my mom lay in the hospital and wondered if her babies would make it.

I saw them crying as they sat beside our isolettes in the NICU, watching as nurses cared for us in the first few weeks of our lives, when they just wanted to be home as a family.  

I saw them crying as they watched me hit milestones which Benjamin never would.

I saw them crying after IEP meetings, therapy sessions, and pre-op appointments. Moments that reminded them how hard this road would always be.

I saw my dad crying as he drove past Little League fields, grieving the loss of a life he thought he would have.

I saw my mom crying when churches turned us away, afraid of disability, afraid of their own humanity.

I saw my dad coming home to us after leaving my mom and brother in the hospital, eyes red with tears and exhaustion, hugging us hard and wiping our tears, as well as his own.

I saw them crying in all of the moments I never saw, the moments where they must have processed what Cerebral Palsy meant, when they saw other children with the same diagnosis, when they wondered what my brothers would be capable of and watched in amazement as they constantly surprised them with their determination.

I saw them crying with joy when my brothers walked to meet Mickey Mouse, when Aladdin made us all feel special, when my brothers played beside their peers on the accessible playground my mom worked so hard to get built.

I saw on my parents’ faces, in those few seconds, the tears of 22 years of hoping and praying and crying and grieving and rejoicing and fighting for victory. As a sibling whose whole life has been touched by disability, it’s easy for me to sometimes forget that, for my parents, a world once existed without Cerebral Palsy. They walked through all of this for the first time before I could even pronounce the words. Yesterday made me remember that. They once held us, such tiny babies that one of us fit in their palms, and now they stand beside us, in our caps and gowns, celebrating college degrees.

I can not begin to understand what these 22 years have been for them. So I look to them with admiration, with adoration, and the understanding that the joy we hold in our hands today was forged by many other days of tears. And it makes me want to hug them hard.

May we, those of us walking alongside (or even within) special needs families, do better to recognize what we see in the eyes of the parents in our midst, and then let’s hug them hard.

Thank you for seeing us, Claire. Thank you for so eloquently putting into words so much of what we were feeling. Thank you for always always being free with your hugs. We love you so (and can not wait until next weekend when we celebrate two more college graduations!!)!!!

Happy 22nd Birthday to Benjamin, Mason, and Claire!!!!

Today is the 22nd birthday of my amazing trio. And I will just tell you that birthdays while your kids are in college are for the birds. I haven't been able to see them, hug them, celebrate them all day. When they were growing up, I always let them take the day off from school so we could play -- but today was the final regular class day for Benjamin before his finals exams and one of the last for Mason and Claire. We couldn't just take the day off and play.

We also had tornadoes in the area all afternoon. So I couldn't just get in my car and make the college rounds.

No, rather, I have sat and watched a feast of sappy rom-coms with my 13-year-old who I think was missing the celebrating as much as her mom.

It occurred to me the second or third time Cate and I had to jump into the closet because the tornado sirens were going off that today wasn't that much different than their actual BIRTH day.

I didn't get to see them that day either.

Sweet first photos!

On April 18, 1997, I had been already been in labor for ten weeks. I had been on bed rest in the hospital for nine of those, not even allowed to wiggle a toe off the edge of the bed, never sitting up. I had taken a myriad of shots on a daily basis to promote lung development and we were praying them to a safe delivery date.

My due date was July 7. I knew they would come early, but I was shooting for May 27 -- my daddy's birthday. It never occurred to me -- never -- that we would have April babies!

But my body had done all it could do. Physical changes for me -- not the babies -- mandated a C-section on that April day. 

All together in one swing in the NICU!

As I was wheeled into the operating room, my nursing team filed in to kiss my cheek one by one. They had been caring for me -- and for these three -- for months. They all told me they were praying.

The room was full of medical personnel. Doctors and nurses for me, and an entire team for each baby.  Poor Wade, I was too scared to talk and he had NEVER seen me unable to speak. I think that scared him most of all.

The doctor warned me that the babies might not have enough lung strength to cry upon delivery. I was prepared. But each one of my mighty three gave a cry to greet the world before being whisked into the waiting hands of their own personal medical team.

I did the smocking for these little outfits while lying in a hospital bed -- my
dear friend Linda turned them into heirlooms for their baby dedication!

 I was taken to the recovery room and vividly remember just being so cold. My doctor got me this wonderful heater that blew hot air under my blankets. (Honestly, I dream about that heat some days.)

I was so anxious to see my babies but I wasn't yet stable enough -- my body just had had enough. Those precious recovery room nurses saw my angst and one of them dug through the cabinet until she found a Polaroid camera. She handed that camera to Wade and told him to go get me some photos. Wade was so hesitant to leave me but he too, was eager to see our babies. I needed him to go to them. He came back with my first visual of the little people I had been talking to for months. I have never loved three photos more.

I would be wheeled down to meet them myself 24 hours later when it was deemed safe for me. They were the most beautiful little bitty things I had ever seen.

Those tiny babies would spend the next weeks in the NICU where one would have a good day, one might stay steady, and one would take two steps backwards all before switching it up the next day. I very vividly remember thinking that as long as the days in that NICU felt, I was going to blink and they were going to be grown up. And I was so very right.

Today, they are finishing their final semester of college. All three of those babies who spent their childhood doing every single thing together -- will graduate in just a matter of weeks. And all three of those babies who were born almost three month too early, make me so proud I could burst!!!

They better be ready to celebrate the 22nd Anniversary-of-the-first-time-I-got-to-see-them-with-my-own-eyes tomorrow -- because that is totally a thing!

Buzz, my three, and the little sister!

Happy birthday, Benjamin, Mason, and Claire! You are seriously more loved than you can ever imagine!

Writing with a gentle grasp....

I'm not a hundred percent certain I want to type yet. I don't want to disrupt the flow, or ask for trouble, or jinx anything, not anything at all.

And it is not that I am superstitious. I'm not. But I do know that pride can be the downfall of many a successful plan. Oh, I don't want to appear proud.

But I want to praise. I want to give praise. I want to shout my praise.

Benjamin has been on campus since Sunday and four nights in, all is well. Maybe not yet terrific. But minus a couple of hurdles, he is making it and even enjoying some of the late evening campus activities that he has never been able to participate in before....

There was a time when I would proudly proclaim my opinions to anyone who would listen -- part of the college experience is living on campus. I was adamant that a huge part of the education college kids receive happens in the dormitories as they learn to navigate the differences of the students all around them.

I lived in university housing at Mississippi State University for three years and deeply regret I didn't continue on campus for my fourth year. I had the privilege of working as a resident assistant for one of those years.

When Wade went to medical school, we worked as resident heads (dorm parents) for an undergrad dorm at the University of Chicago. The triplets were literally born into campus housing life. We ate meals with our students in the hall cafeteria. I clipped little chairs to the big circular table and our earliest family meals included three teeny tiny babies and a table full of brilliant college kids.

So, I am not kidding when I say I LOVE on-campus housing.

But a few years ago, I realized I should turn my opinion-volume to low. I should stop proclaiming how integral ON campus living was to the college experience because frankly I didn't think it could happen for Benjamin.

Mason has been on campus all four years -- as a matter of fact he is serving as an RA in his dorm for the third year in a row.

Claire has been on campus -- this year she is technically across the street from campus in an apartment, but it is still university-owned housing.

But Benjamin lived at home for the first three years. His freshman year, we didn't have a choice. The existing men's dorm was not accessible and he didn't have a staff of personal care attendants yet. Home was his only option. And really, being on campus and navigating classes, buildings, etc was a huge change for him. It was ok that he came home at night.

By sophomore year, we were so proud of the system that we didn't hesitate to continue doing what we had already done the year before -- except now, with some help from personal care attendants.

By junior year, we knew the new apartment had an accessible room but neither of us were too eager to discuss it. Dad however, began to talk about the opportunity to try independent living on campus. Dad began to plant the seed in both our minds.

And so, we jumped the hoops, made the calls, did all the leg work -- and met some amazing people along the way -- and this year, Benjamin is living on campus. He had an elevator snafu his full day living there and injured his foot painfully. But he kept going. He has been to several events on campus. He has learned to navigate for meals, for studies, and to all his classes. And he has faithfully called to let me know he is ok.

As for me, I am sleeping for the first time in 21 years in my bed without hearing him breathe over the intercom system he uses at home to communicate with me from bed. Rest assured I am still listening. But I can not hear him from here. I fret about his hair looking good. And I worry that no one is checking his posture in his wheelchair. I worry about this and that and the other and really just need to lay down my need to be the only one who can get his care right. It isn't true.

We are four days in. And I must say, I am hopeful for tomorrow.

Thank you, Mrs. Ernestine.

My first word of advice when parents ask me about college choice is always -- always -- look more at the heart of the school than at the architecture.

My trio all chose old, well-established universities. They all chose schools that were built before the Americans with Disabilities Act (ADA), and small enough liberal arts colleges that big overhauls have not been made in accessibility.

Loudly, I want to proclaim that overhauls are necessary on all three campuses. There are things that need to be done -- physically, and policy-wise to make those campuses more accessible. Period. (And rest assured, all three are doing what they can to get awareness raised on their respective campuses.)

But today, I was reminded of just how right I am when I say the heart of the campus is the biggest thing. The very biggest thing.

Almost four years ago now, Mason and I visited Millsaps College for a Welcome Weekend event. He went to his information sessions and I went to the parent sessions. In one session, the speaker introduced himself with a myriad of titles but one -- Accessibility Director -- caught my attention. I sought this administrator out following the session to introduce myself. I told him about Mason and what he needed to be successful in college. I asked if Millsaps could provide these things. He assured me they could as we walked across the campus. When we ran into Mason, I was thrilled to introduce the two of them. And then promptly realized how different college-life would be, when the director looked Mason in the eye and asked:

"Mason, I know what your mother thinks you need to be successful in college. What do you think you need?"

It won't surprise you to know that Mason's list was only a fraction as long as mine had been.

That was the day Mason took ownership of his college career -- months before he actually moved onto campus.

Today, I was at Millsaps for the semester ritual of Mom and son going together to purchase his textbooks -- for our next to last time. My mother-heart was happy enough watching the mini-reunions with everyone we ran into in that bookstore. As he begins his senior year, it is so clear that Mason has  a community.

After paying for his books, I started making my way out of the student center only to be stopped by one of the custodial staff, Mrs. Ernestine. "Are you his Mother?" she asked, nodding her head towards Mason. I smiled and said that yes, I am. 

She returned my smile, "Everybody on this campus loves your boy," she said. "You don't have to worry about him. We are all looking out for him."

I thanked her -- and tried not to cry. She went on, "Come here. Look over there. He is surrounded by his friends. I told you everybody loves him. Now you go on and don't worry."

Mrs. Ernestine is part of the heart of that campus.

Last week, Mason called concerned about some construction fencing that was blocking his accessible path for his scooter. I urged him to stop by and talk to the head of security, a college friend of his dad's, John Conway.

Mason called me back in minutes. "Mom, Mr. Conway is already on it. He has a plan and has instructed the construction team to move the fencing to make a path for me. I didn't even need to ask for it."

John Conway is part of the heart of that campus.

Benjamin has similar stories with a dear lady, Mrs. Elle, on his campus. Mrs. Elle has stopped me on numerous occasions to assure me she can get the doors for Benjamin and I should go on. She worries about him when he doesn't stop for lunch and she is always there with a hug when I am on campus. Mrs. Elle works in multiple buildings on Belhaven's campus but she always seeks out Benjamin to say hello. She is part of the heart of that campus.

I talked to my girl today, too. Goodness, she doesn't need the accessibility, and yet she actively fights for it for those that do. I told her about my conversation with Mrs. Ernestine and she laughed and told me that she was walking to campus for the first time from her just-off-the-edge-of-campus-apartment and one of the security officers saw her and offered her a ride in his golf cart today. We laughed that even she is well taken care of on campus.

As my trio begin their senior year of college (SENIOR YEAR!!!), I have learned so much about college choices, campus accessibility, and the ability of my children to overcome and persevere. I am not going to sugar-coat it and pretend that all of it has been rosy. And I am keeping notes in an effort to help those who come behind us.

But we were spot on when we said the heart of these three schools was exactly what we were looking for.

Mrs. Ernestine was a perfect reminder.

Yes, he is handsome. But also so much more.

The little girl couldn't help but see us as the host led us to the table right beside her family. We removed a chair so Benjamin could drive up to the table and all took our seats. Little three-year-old never turned away. She had her eyes focused not necessarily on Benjamin at first, but definitely on his wheelchair. And then she began asking her mom questions. Mom smiled at us and tried to whisper to the little girl as she physically attempted to turn the little one's body around in the chair to face their table, not our's. But little sweet thing was persistent. She needed to ask her questions, she needed to take it all in visually. I couldn't help but smile at her little inquisitive self. I nodded to her mother and told her it was ok. She should let her ask questions. I explained -- in my best three-year-old way -- why Benjamin uses the wheelchair. She seemed satisfied and actually turned around for about 30 seconds. Her curiosity just couldn't be contained. The family got up to leave not long after. I met the Mother's eyes and told her to let her daughter continue asking questions because as that generation becomes more comfortable with wheelchairs and the amazing people who use them, the better the world will be.

Because let's face it. There are plenty of generations walking around that have no idea what to do with wheelchairs or the people who use them.

In our travels this summer we found ourselves waiting in a line for a photo op the crazy mom wanted (that's me, btw ;) ). As a group ahead of us made their exit, an older woman in the group stopped when she got to us. She leaned over to me and told me how handsome Benjamin is. I smiled. She continued, "I mean, at least he has that going for him." And kept walking.

I was left stammering. What. Wait. Huh? I wanted to chase her -- No, I mean yes, he IS handsome, but NO that is not in any way an "at least he has that!" 

I opted to stay in line for the photo op. And took a deep breath.

An old friend reached out to me this week to encourage me in a particularly trying situation. Bryan is wise -- he has always been wise -- and he is articulate in a way that has me reading and re-reading his words. They are a balm to my soul. He suggested that most people can not recognize the disabilities and fragilities in their own lives, therefore they see Benjamin as wholly different from them.

The wisdom in those words is staggering because the reality is that we are all broken in some way -- physically, emotionally, spiritually. And as such, we all need concessions made to accommodate our own special needs.

Unfortunately, too often we see people like Benjamin and feel arrogant in our bodies' ability to run, jump, climb. We feel like the older lady in our travels, that at least he is handsome, and move along. 

Or perhaps, our arrogance leads us to extol on our own virtues -- I was able to show kindness to a disabled person, therefore others should be exceedingly proud of me. Our child deserves a medal for the kindness they showed. Or our students should be commended for being so accepting of people with disabilities with grace. Our church body should be rewarded for the [condescending] way they patted that young man as they walked out around him.

And perhaps my own fragility is revealed oh too clearly in that paragraph -- in the way I feel broken, weary, and exhausted because the battle to be seen is sometimes more than I want for my children.

Benjamin is a handsome guy. But far more than that, he has a brilliant mind, is a skilled listener, a loyal friend, a gifted writer, and a master at Disney trivia (you KNOW this if you happened to be on our ship this summer!).

My disabilities far exceed his. I wonder if maybe, just maybe, some of those who have patted themselves on the back recently for being so good to Benjamin might say the same.

I mean, you wanted to see the photo we waited for, right?

One. Two. Three. Or something like that.

I wish you could have been a fly on the wall last night in our condo. Really.

Because we are here temporarily, we don't have personal care attendants to help with Benjamin's daily needs. So this summer, it is all Mom, all the time! So Claire offered to help transfer last night. She learned some great two-person-lift-techniques at camp last summer and thought they would help. The space here is tight though and so we were adjusting how to lift Benjamin from his wheelchair to the bed with very little space for the three of us. We made the plan and then I thought she said "On three, 1-2-3." And so I lifted. She belatedly lifted his legs which threw me off balance causing me to fall onto the bed with him and then onto the floor (just me -- B was safely in the bed) laughing so hard I was crying. We were ALL laughing so hard we were crying.  

Now, I should point out that Claire actually said, "Mom, count to three." I had misheard her. And that just made us laugh harder.

It was several minutes before I could get up. It was just so comical. (And was made even more so by the fact that mascara was literally running down my face because I had actual tears streaming from laughing so hard.)

Getting help was almost my undoing.

I like to do it all myself. I like to. It's not that I want to be a martyr or anything. I have just spent 21 years taking care of my boy (now a man. I know.) and I have a system, a routine if you will.

And though I know that he is taller than me. And I recognize that his strong personal care attendants lift him much easier than I do and so probably cause him far less discomfort, I still like doing the things that must be done. I still think that I can and should.

And so I recognize that as funny as last night was -- it probably emphasizes a problem I have with asking for and accepting help. And if I am honest, the problem is probably more with accepting that I NEED help than anything else. I was blessed with these three and it was a privilege to provide their mothering. And while they are young adults these days, it still fills my heart when they NEED me.

So taking care of the one who still requires my help physically, is probably helping me cope with mothering adults! I like being needed.

We are going to try again tonight. I will work on hearing the count this time. I will work on accepting the help. And I will work on acknowledging that I am mothering adults.

But ya'll might want to work on sneaking a video camera in to capture the fun. Truly.

The Good. The Bad. And the Ugly.

Sorting through the thousand or so photos I took over the last two weeks, I am struck by the absolute beauty of this trip. I am overwhelmed with gratitude that we had this experience. And after a semester having my family separated by thousands of miles, I confess that I took as many photos of my crew as I did the scenery and I do not apologize for that even a little bit. (Especially since we left Mason studying off the coast of Spain so already we are separate...again.)

But I am also keenly aware that my photographs are of the good moments. I don't stop and photograph the hard times -- though I try to be honest about them -- and so am always struck when people comment about how happy we are "always".....seriously, that is not our reality and I don't want you to think it is.

So, if you are interested in a traveler's tale, please grab some coffee. I have about a million photos I want to share and might get a bit long-winded!

Let's start with the good:

1. Gelato. Holy smokes, the gelato was so divine. And this little gelato spot in particular made us smile for a myriad of reasons -- not the least of which, they recognized us upon our return and welcomed us back!

2. Entrance Fees.  We usually only paid for one or at the most one adult and one child. Italy's policy is that those with disabilities enter free, as does one companion. 

View from the Coliseum!

3. The history.  From the Arch of Constantine and the reminder that it was Constantine who returned to Rome demanding everyone become "Christian." To the Coliseum, where for 390 years, battles were reenacted, executions were held, prisoners were fighting wild animals for their freedom, and all in the name of entertainment. In those years more than 400,000 people died.

We saw the forums of Rome's mighty leaders. We toured the Vatican and saw the Sistine Chapel (I posted photos from those sights here and also here). And toured St. Paul's Basilica, built where Paul is buried. Seeing the actual chains from when Paul was imprisoned was emotional. 

And convicting. Paul wrote from his prison cell:

"I am not saying this because I am in need, for I have learned to be content whatever the circumstances." Philippians 4:11

Oh, I need to have that level of contentment.

Outside of St. Paul's.

Inside St. Paul's Benjamin had plenty of room to navigate.

The eternal flame burning at the altar where Paul's prison chains are housed.

For perspective -- the columns were huge at the Basilica.

4. The pizza. Need I say more?

5. Tour guides. We made a wise decision prior to our travels and hired an accessible van for two days in Rome, the drive to our ship, and to also meet us at the port of Livorno to take us to Pisa and around Florence. On these days, Benjamin had to navigate the roads much less and Mason had to walk the cobblestones much less. They still had to....but the reprieve between major sites was a nice change.

We used www.romeconnection.com for these drivers and tour guides. They did an outstanding job helping us navigate the ancient cities!

With Marco, our tour guide for two days in Rome. Marco got us into and around the Vatican as if it were easy -- it is not. We were so thankful for his expertise!

With Heliana, our fantastic tour guide in Florence! The history this woman knew was incredible and so fascinating! 

With Florin -- our absolutely delightful driver! He and this van were an absolute game-changer!!!

6. The views. Once upon a time, I read a little book -- "The Red Sails of Capri" -- aloud to Cate that promptly drew her teenage-siblings' attention and enthralled us all. We have dreamt for years of visiting Capri. It did not disappoint.

And of course, my archaeologist son, Mason, was thrilled to visit Pompeii. He worked harder than he has ever had to in order to navigate these enormous cobble stones of the ruins but did not stop smiling the entire time!

Under an arch in Pompeii with Mt. Vesuvius behind them! Look at the size of those cobblestones!

The tour guide was enthralled with Mason's enthusiasm and knowledge. Of course.

She hardly had to break a sweat to hold it up! :)

She didn't either! (And no, the boys would have no part in the silly photos!)

Overlooking Florence in all her splendor!

And from the bridge in Florence.

A calanque (creek)  in Cassis.

In the village of Cassis, France.

7. Family Time. Oh man how I loved needing a table for SIX for every dinner!!

The Bad.

1. When we clicked wheelchair-access on the Disney Cruise site, all excursion options disappeared. EVERY. SINGLE. ONE. We considered not taking the cruise at all. Not taking the trip at all. But the bottom line was that I desperately wanted my crew to experience Italy. And I also knew that Disney would ensure our rooms at night and our meals were accessible. Beyond that we were on our own.

So, Benjamin was able to tour Rome. Because we flew there and arranged our own tours.

Shrader SIX in the Coliseum!

He was able to see the tower in Pisa, and sight see in Florence. Again, because WE arranged the van and tour guides who would give us an accessible option.

My fab four in front of the Leaning Tower of Pisa!

All six Shraders able to see the Duomo in Florence!

But he wasn't able to get off the ship in Capri. Or Marseilles. Or Cannes. So he and Dad stayed on the ship. He enjoyed every minute. He loves that boat. He WON six out of six Disney Trivia contests, was known by many families around the ship due to his wins, and thoroughly enjoyed himself. But still. He missed Capri.

Only four Shraders could see the majesty of Capri.

 And Cassis.

And he missed the short walk we took through the streets of Cannes. And the crepes at the little sidewalks. And we missed sharing all of this with him and with Wade.

2. Cobblestones everywhere.

Giant cobblestones in Pompeii were a physical challenge but my archaeologist son still smiled every minute!

3. Exhaustion. We walked five to ten miles every sight-seeing day. The weather was lovely and yet, the sun got hot as we tried to rapidly see as many sights as possible. This trip was not for the faint of heart. Not even a little.

Girls napping while we wait for lunch (Pizza, what else?!) in Sorrento!

The Ugly.

1. Rome arrival. Detailed here. I can't even go into that again. Sigh.

2. My attitude. Oh man. In the first days of our time in Italy, I desperately wanted everyone to love it as much and as intensely as I had dreamt about them loving it.  And the hard-to-navigate roads, coupled with inconsistent curb-cut-outs of Rome were leaving Benjamin frustrated and a bit frantic so we needed to help him drive. This led to some short tempers. Ok, this led to my short temper. One day, I will learn to get my expectations out of the way.

Luckily, we remembered to flex before we were too many days in and the trip because much much more enjoyable after that.

3. Taxi in Barcelona. We disembarked Saturday morning in Barcelona. We had to get Mason to his Field School and so had opted to just fly home also. We booked our transfer from the ship to the airport through DISNEY. As guests poured off the ship, they loaded charter buses for their transfers. Not one was accessible. We were told to wait. We waited. They called for us and led us to a small van with a steep ramp. I mean steep ramp. The "van" was not tall enough for Benjamin to get into and you know, keep his head on. :)  We measured and angled and finally reclined him, drove him up the crazy ramp and then raised him back up as much as possible. The vehicle didn't hold us all and our luggage. So Wade and the luggage went on one of the buses. The kids and I in the taxi. (I will commend the taxi and bus drivers and say that they worked very hard to stay together. At one point, the bus driver pulled to the side of the road to wait for us. He obviously read our discomfort with being separated in an unknown city/country.)

3. Arriving back in Philadelphia. Same song, hundred and fifteenth verse. Plane lands. Passengers get off. Wheelchair does not arrive. We wait. Aisle chair arrives. I have to explain Benjamin can not get into that until his chair arrives. Entire flight crew gather round us. THANKFULLY, they all understood and just sat down and visited with us. But we waited 45 minutes for his wheelchair to be unloaded and brought to the jet way. Seriously, can I say AGAIN, that the time lost in us forcing airlines to have a lengthy flight turn-over could be avoided if they engineered a way for his wheelchair to lock down instead of having him transfer out of his chair!! (Before you criticize me, please know the drawings have been done and are actively being considered. I didn't just come up with this idea! Check out this video!)

Traveling with a disability is a struggle. We have left Mason in Spain where he is doing a field school at an ancient burial site. He is walking up five flights of stairs for housing, hiking through brush for half an hour, and working in the sun on his knees and belly all day. Clearly, we don't avoid the hard stuff. But really, there is no reason Disney can not provide excursions from this wonderful cruise itinerary that make it easier for families like ours to travel. I want to encourage families to not be afraid to explore the world -- but until companies like American Airlines, Disney, and other travel companies decide our patronage is valuable, and make an effort to ease the travel burden by providing more accessible options, I can only say that seeing the world is worthwhile, and seeing the world is hard.

I have some jet-lag to overcome but if you want to come by and see the other thousands of photos I wasn't able to include here, just give me a shout! :)

From the overlook in Florence!

www.romeconnection.com