When my garden grows...

My cutting garden looked beautiful and sad simultaneously when I returned home from a week away. My Zinnias were more bountiful and colorful than in previous years, affirming my decision to plant them in a different spot this season. But they almost looked as if something large had flattened them in areas -- oh they were still blooming, but they were laying down! 

From my garden.

I am a complete gardening-novice even though this is my third growing year. I tweaked my garden set-up this spring to make it manageable throughout our very busy softball summer but I still am guessing mostly.  😁  I have spent several mornings outside this week attempting to determine if the growing-far-out-of-their-container pumpkins had somehow aggressively flattened my Zinnia. They have not. (Though the aggressive growth of these vines makes me think we will be able to stage our own "Jack and the Beanstalk" soon...."Shraders and the Pumpkin Vine"???) 

I brought hair from my amazing hairdresser's recycling bin to sprinkle around the corners to keep away any deer, fox, or whatever might be using my Zinnias as their nightly bed.

And then this morning I made a discovery....

In addition to Zinnias in my cutting bed....I also threw in some seeds that I thought were Black-eyed Susans. I thought the seed were old. I have tried unsuccessfully to grow these for years. In my ooh-I-have-space-I-will-just-throw-these-in-the-corner gardening style, I assumed they would never take hold. And clearly didn't notice that what I was planting was a vine-variety. A vine. And since I just threw these seed in last minute, I failed to provide something a vine desperately needs -- something to climb. 

And of course, THIS is the year the seed took hold. And then because I didn't provide the support necessary, the plant used what it could reach -- the stems of my beautiful, bountiful Zinnia.

As I attempted this morning to free the Zinnia, and yet save the vines, I couldn't help but think about how often we latch on to anything in the absence of the thing we actually need. We scramble for the support, reaching for whatever is near. And sometimes, I fear we wind around things that can no way support our needs, stabilize our growth, or encourage us to reach our full potential.

And we flatten that support just like my Zinnia.

One such example for me: moving a couple times in these last few years has left me seeking fellowship through social media -- and feeling bereft when a pandemic, politics, and polarization leaves me feeling a lack of connection. I need real relationship to fill that void. I recognize that. 

Goodness, I am sure I don't need to list all the ways I fail to grow with the right support....or fail to offer the right support so those in my care can grow. But I do keep circling back to a quote about disability from Judy Heumann, disability rights activist, who said "Disability only becomes a tragedy when society fails to provide the things we need to lead our lives."

Well-supported cucumber vine.

Can you see that? The tragedy is not in the disability. The tragic thing is in the lack of supports Benjamin and Mason require to be contributing members of society. Simple things like barrier-free access to buildings still elude us all over the country. Transportation that allows Benjamin to stay in his wheelchair -- from our van to buses, trains, and for the love, airplanes -- often feels like we are asking for the moon! Finding care attendants to help him get dressed, eat, meet his hygiene needs is a constant struggle.

He and Mason both need the right supports to reach their full potential. But my goodness, don't we all?

I scavenged around my yard early today for supplies to re-direct the vine to something more sturdy, more able to provide support, more likely to help my little flowering vine reach its full potential. 

Time will tell if this support allows my vine to grow.

If you need me, I will be here working to ensure Benjamin and Mason have the support they need to do the same!

Stairs, ramps and the right Elevator.

First holiday concert in two years happened tonight. Benjamin and I were so thrilled to hear Cate and friends perform but the concert was in the brother school and thanks to Covid, we have only barely been in Cate's school....we certainly have had no cause to enter the brother school several blocks away.

We found the accessible entrance. I went ahead to scout it out before unloading Benjamin. This pandemic has made our entering new spaces extremely rare but my memory serves. I know access isn't a guarantee.

As I entered, I noticed a set of stairs in either direction. I could see a ramp but it was in the middle of a hallway with stairs on either end. I was confused. I asked a young student if he could direct me to the accessible entrance of the theater. Simultaneously, I actually realized an elevator was right inside the door but wasn't sure where it went. I asked if this could get me to the floor of the auditorium.

Young student eager to help began making his way to me: "Oh," he seemed a bit concerned. "Folklore around here is that the last time we had a student in a wheelchair, the students just carried him everywhere." 

I assumed that meant the elevator could in fact NOT get me to the auditorium. My head was starting to spin off my neck. I could feel it. I just decided to go get Benjamin and try the blasted elevator even though this guy was insinuating it wouldn't help me. But I was panicking a bit. I didn't have a plan B.

The elevator worked. The main entrance to the auditorium was located somewhere else entirely -- somewhere reachable by elevator.  We found our way. 

But as the choir began singing the first beautiful Christmas carol, I finally realized what the young man had said just as my head started to spin....

He seemed burdened with the lore of students carrying their classmate. And yet, he took a deep breath, looked over his shoulder at the handful of students sitting outside (what I now know to be) the stage entrance to the auditorium and said, "I guess we will have to do that."

Bless him.

And as the holidays rush towards us, and as we navigate a world still weighed down by a seemingly never-ending pandemic, I think that is a message we all need right now: I am here and willing to carry you if necessary. 

Or at the very least I can help you figure out if the blasted elevator can get you where you are going.

Getting back to normal. Or not.

Benjamin and I went to the movie this morning. It was my first time in the movie theater since the world shut down last March. (Benjamin and his siblings had been over the summer.)

It was weird. And good. And really weird. I mean, first of all, it was the earliest showing of the day, and Benjamin and I -- well conditioned to arrive super early to ensure a wheelchair spot in the theater (yes, even with reserved seating) -- were there before staff arrived. Once inside, the concessions were eerily empty. The theater only had six guests. And while I am certain some of this is the time and day of our viewing, some of it is in direct relation to Covid. I mean, Benjamin and I would not have gone to see a box buster without the whole family once upon a time.

And so even as I reclined in those comfy seats and settled in for the show, I was struck by how many things have been changed by Covid. How much is different today as we attempt to re-emerge from the safety of our little cocoon.

Oh, this summer was already so much more active than last summer. For sure. For starters, we had family visit and that alone was enough. To hug and be hugged by my brothers and sister-in-laws, and to love on my nieces and nephew was a breath of fresh air. 

My mom and her grandchildren.

And to see my Mama with my own eyes was an absolute gift. My brothers and I are scattered around the country. Sometimes it is a hot minute between our visits. I am not a fan of that at all. But I have come to accept it and look forward to the times we do have together. But my Mama?? I have never not seen her for that long. To have her here was healing.

Softball had sustained us last summer and that ramped up even more this year as more tournaments opened up and travel restrictions were lifted. But still, the bleachers were rarely open, concessions usually closed, and many teams opted not to high five after the games, and coming to the line and waving became more a norm.

School is back for the three Shraders IN school and all are happy to have in-person classes again. But they are wearing masks. And braced for some classes to go virtual as Covid cases arise.

All of that to say, I can't help but wonder what the long-term affects of this pandemic will be on society. I hope that we recognize all the changes were not negatives. I hope we recognize that some things need to hang around!

Benjamin has been able to serve on several committees and campaigns from his very accessible space. He hasn't had to fight for transportation, ramps to enter buildings, or accessible toilet options -- just to name a few things. It is my hope that we will maintain the accessibility that virtual meetings have offered to so many for a multitude of reasons.

Benjamin and Mason have both had virtual doctor appointments. And while I like an in-person visit generally, these have worked very well for ensuring questions can be answered, and needs addressed without exposing them to a myriad of germs -- not just Covid.

My Mississippi book club, which I had missed terribly, has been meeting virtually and are gracious to include me. Recognizing that technology can bridge the miles certainly isn't new. But this pandemic made it commonplace to gather virtually and I have enjoyed it more than I ever imagined I would.

At the risk of being labeled more Pollyanna than I well, already am. I have to also say that I may never go back to NOT wearing a mask when we fly. I mean, not for only obvious reasons. This Mama is just generally exhausted getting the laundry done and the bags packed, and everything to the airport. Getting through security with wheelchairs is stressful and tense and so when we finally sit down on the plane, I am generally asleep before take off from pure exhaustion and relief. The mask prevents anyone from seeing how very asleep I am....as in no one knows that my mouth is hanging wide open! It really is a plus.

Is there something about this year that you hope lingers? A technology you have learned to enjoy? A state--of-being that you are happy to embrace? I would love to hear!

And if you see me on a plane....don't tell my secret! 

Real Super Heroes: Personal Care Attendants!

Benjamin was 15 the first time we hired a personal care attendant to assist in his daily living routine. Our dear Zack had no prior experience with such a position and of course, we didn't have any experience with the position either. 

The whole thing was such a learning curve for both of us. Zack was a rock star though. A few years older than the triplets, he treated them with respect, and even as we were easing him in to the daily care (trust me, the easing was for my sake....I had the hardest time letting go of my daily routine!), we all jumped in to a friendship with this amazing guy that makes us miss him like crazy every day. I will forever be grateful to him for setting the bar high in what to expect and truly holding our hand through the learning process.

Visiting with Zack on a visit to AZ a couple of years ago!

Since moving from Arizona, graduating high school, and desiring and requiring more independence from me, Benjamin has needed a team of personal care attendants.

We looked long and hard for that team for a while and I won't lie, we hired some that in hindsight we can see clearly desperation had colored our discernment skills! But ultimately, the team we assembled were some of the most amazing young adults I have ever met. They were going to college full-time and working around Benjamin's schedule to also be his PCAs.

Isabella traveled with us -- giving up some of her off-time to help Benjamin volunteer and reach his dreams. Christian planned taco nights weekly during his shift -- a shift he maintained even after he graduated and got a full-time job! Kaitlyn conscientiously did Benjamin's typing -- never acting impatient with his creative process and helping him accomplish all his goals! Dillon was his friend before he was his PCA, so Benjamin enjoyed having him assist on campus. Jadee took time to help Cate with softball pitches -- over and above her position with Benjamin. Terez had been his classroom "secretary" before becoming his PCA and between she and Mary, I knew I could call on them to run to his dorm on campus with any emergency! Nakembe walked with us as we figured out the dorm process for the first time -- his quiet confidence giving us the confidence to move forward. And Luther never failed to walk in convincing Benjamin and us that there was no where he would rather be. Honestly, this team. There aren't enough words to praise them.

Benjamin and his amazing team -- who all showed up to support
 him during the senior reading of his script.

Today, post-college graduation and move to Delaware, Benjamin's PCAs are provided through an agency. Well-trained women who already know the ropes of the job. We have an amazing weekday morning attendant, and although she is new, a great afternoon attendant. But our evenings haven't worked too well, and only recently have we had a weekend attendant.

But what we are finding is that even with trained-professionals there can still be a steep learning curve. I vacillate on whether or not I am assuming too much knowledge, or patronizing by trying to teach skills they have known for years. Finding the balance is hard.  And so as the weekend provided another new attendant, I have been pondering what things are my must-knows....and missing our amazing AZ and MS peeps...

So far my list is fairly short though infinitely important:

1. Keep Benjamin safe. Really -- this is your #1 job. Do not act like you know how to work the lift if you don't. Bravado is not called for. If you don't know how to safely care for him -- ask me. Do not try to fake it.

2. Respect Benjamin. Do not speak to him as if he is a child. He is not. He is bright and articulate and no offense, but he can probably write circles around you, show him that respect. Talk to him. You will learn he is a brilliant conversationalist.

3. Do not laugh at him -- or me. Ok. I get that maybe this is a nervous thing but man it is awkward. You need to either stop it or get in front of it and explain it because when he asks for help and you laugh, he is not inclined to ever ask again.

4. Those amazing young adults who have worked for B for years can tell you that I am a crazy woman about presentation...when Benjamin rolls into a room, all eyes turn to him. He better look his best!! Fix his shirt so that it is neatly tucked in, collar correct, sleeves buttoned. Do not put the seat belt around him with shirt shoved down under it. Make it neat. Pull his pants' legs down so that they look like they would if he were standing. Do not strap his feet straps ON TOP of his pants. That looks terrible. Fix his hair. I am happy to teach you how to do it -- he has great hair. Don't give him a slicked down comb over. No food on his shirt. And for Pete's sake, no food on his face! Wipe down his chair, I don't want food there either. Goodness, use your eyes to see if he looks like you would like to look when going out in public.

Whoops. I think I might overwhelm with number 4. But honestly, I think those things are important and set a good attendant apart from a great one.

Benjamin's personal care attendants change the world -- not just for him, but for me. We are better, stronger, safer, with the right team in place. And though my number 4 is long, I know that number 1 is far more important. (I really do.) But that doesn't mean I won't be here harping about tucked in shirts.....

The "W" Word.

I stood on a stage yesterday before more than 2,000 people from 39 countries and pretty much admitted to them all that I am not the smartest mother on the block.

I completely confessed to some of my worst parenting.

I wish I could say I was exaggerating.

I wish I could say anything except the truth.

See, for years, I wouldn't allow the word wheelchair to be spoken in Benjamin's presence. I called it the W word, and insisted we speak in code if it became necessary to use the word at all -- something I frowned on in principal!

I can remember the day it started as clear as the day it happened:

Benjamin was trying a different gait trainer -- a walker with wheels and a hip belt that attached him to the walker. We were taking advantage of the nice temperatures in our Minnesota home before the snow came, and so he was walking outside. Lynn, our precious wonderful physical therapist, looked at me and said it might be time to talk about wheelchairs.

I bristled up before she finished the sentence.

"Don't say the W word in front of me. And DO NOT say it in front of him!"

I wasn't using my sweetest tone.

For me, a wheelchair meant limits. 

A wheelchair meant closing the door to walking.

And closing the door to walking meant different. We would be different.

I was petrified of the W word. It made me physically hurt.

The W word was an absolute statement that we were disabled. And the disability was not going anywhere. 

I had not one single clue on how to progress past that fear.

Two guesses who did:

Benjamin's physical therapist at the Mayo Clinic (yes, we had a ton of PT plus a ton of OT every single day, every single week.) was working to get him from the stroller to his walker. She urged and coerced, and prodded. And finally he was out of the stroller and into his walker. Only, he was facing backwards.

Kim: "So what are you going to do now?"

Benjamin didn't even take a breath before telling her: "Well, I guess I'll do the hokey-pokey and turn myself around!"

My son was bright, smart, articulate, and so funny. And I was forcing him to enter every single room too exhausted to shine.

I knew it was time to talk about wheelchairs.

When we went to try one out, my sweet boy – always intuitive – looked up at me and said, “But Mommy, I walk. I don’t need that.”

I wanted to scoop him up and run out of there but before I could he noticed the joystick and a smile lit his face like I had never seen before. He wanted to try one!

The moment he realized he could move around his own space AND talk at the same time, he smiled even bigger than he had when he saw the joystick.

See, I was completely blocked by my own paradigms. I was wrapped up in how a wheelchair made ME feel. I was worried -- in a way only a Southern mama can be -- about how things would LOOK to the rest of the world.

I was a terrible mother.

Because for Benjamin:  A wheelchair was a key to freedom. A wheelchair meant he could roll into a room and still have plenty of energy to entertain all around him.

A wheelchair meant he could keep up with his friends.

A wheelchair meant he had the stamina for the school day.

He could graduate high school. He could travel the world. He could make friends, have fun, LIVE life!

So often, we enter the journey of parenthood with all manner of ideas and paradigms for how it will look. And dear mercy, even if our children are NOT born three months early and DO NOT have Cerebral Palsy, the road is very rarely what we expected. 

A wheelchair was not a failure on Benjamin's part. 

A wheelchair was not a last resort.

A wheelchair is a tool that helps Benjamin in an area where his body has a deficit. It doesn't define him anymore than the glasses I wear for my body's deficit define me.

Far more important than the fact that he rolls through life -- the fact that he writes in a creative voice that looks effortless. The fact that he speaks off the cuff with insight, wisdom, and an empathy for all around him. The fact that he is a fiercely loyal friend. And a caring, loving son.

It is time to spread the word -- walking is not the end all, be all. It isn't.

Meeting Micah from "Speechless".

Finding your path to being a kind, loving, contributing member of society -- oh that is far more important than whether you walk, crawl, or roll through life.

I wish my young-mama self had known that. 

Words with weight.

She was part of the conferring ob/gyn residents gathered outside my hospital room on the labor and delivery floor where I would spend weeks praying to get to a safe delivery date for my trio. I imagine that she had no idea how loud she was speaking or how clearly her voice carried. I wonder if she ever gave her words a second thought.

"Why are we working to stop her labor? I wouldn't want cerebral palsic kids. She should really just deliver and let them die."

I was 23 weeks pregnant. I had been on bed rest for a month already. In the hospital for three of those -- without even wiggling a toe out of the bed. I had had multiple ultrasounds and every single time the personalities of these three little bitties was clear. Benjamin (Baby A) was the ring leader and very busy using the other two as his punching bag (To be fair, they were literally on top of him). Mason (Baby B) was a bit private and quite the prankster. Some days he hid behind his sister so that finding him was a huge challenge. And Claire (Baby C) liked to move and groove, wiggle and see how far away from those pesky brothers she could get (Trust me, there wasn't much personal space -- she would get up and as far under my rib cage as possible!).

Young ob/gyn resident didn't know them. I knew them. I was also just arrogant enough in my faith that I thought Cerebral Palsy was not something we would deal with. I mean, I was praying these babies to a healthy delivery date. (But that is a whole different blog post.)

Baby A, B, and C will turn 22 years old this year. Obviously, I haven't forgotten the words that carried into my room on that L&D floor in Chicago.

I can hear her audibly today.

I could hear her audibly 21 years ago when the doctor diagnosed two of my three with Cerebral Palsy.

And yet, if you have met me, you know that even though her words echo, I don't give them worth. Benjamin, Mason, and Claire bring more to this world than even I ever imagined. I chose life for them. I would choose life again. And again. And again. And even knowing that the boys would in fact have CP, I would still lie in that hospital bed for 10 or more weeks and do everything every doctor told me to do to get all three of them to a healthy delivery date. I choose life.

But the thing is, even though the words don't have worth, they do have weight. And I have carried them. They feel heavier some days than others.

They felt heavy the day the mother of the family sitting in the booth next to us took one look at us, grimaced towards us and then said to her family "Oh bless their hearts." It wasn't a blessing.

They felt super heavy when I wanted my trio to sing in the preschool church choir and was told as long as I stayed and helped they could be a part.

I wasn't sure I could bear under the weight the Sunday that we showed up at a new church and the usher pointed to Benjamin (an 8-year-old Benjamin) and said "You should have gotten here earlier with that."

But they feel the heaviest when people complain about having to add accessible parking spaces, or ramps. They feel heaviest when people block loading zones, and when we arrive at church and can't find a ramp.

Here is what I need to say: Yelling about the importance of choosing life is just that -- yelling -- if we don't also figure out how to minister to families like mine. If we are going to be indignant about laws that allow for the termination of pregnancies when differences are found (and don't misunderstand, I am upset about those laws), then we must also be indignant when our church doesn't have a Special Needs Ministry. 

We must also be indignant when the family rolls into our church and can't find a place for the wheelchair to park and the family to sit together.

We must also be indignant when anyone insinuates in any way that people of faith do not have children with medical needs.

We can't ignore families with challenges. We can't make them our projects either. We have to stand with them -- point them to the ramps, then pull a chair up beside them.

The triplets were 12 when they attended jr. high camp with our church. They spent time watching their friends do rock-climbing, Frisbee-throwing, tossing the football during free-time. We were getting close to the end of the week, when a couple of the men approached me (Of course, I was chaperoning one of the girl cabins so that I could dress Benjamin every morning, etc.). The men had been watching the boys and wanted to do something special for them to make up for the fact that so many of the activities had been inaccessible. They wanted to give them a ride down the zip-line. The zip-line, though, was at the top of a big rock wall. 

It didn't seem possible to me. Those men had a plan. They harnessed the boys in and then used a pulley system to pull them to the top of the rock wall. They heaved, and tugged and pulled them up so that they could fly down the zip-line. It was exhilarating.

And on that day -- on that day, I didn't feel the weight of those horrible words at all. Rather, those men could whisper and I would strain to hear anything they said. Their words have meaning, weight and worth because they didn't just share a meme on social media -- they literally worked to support us and our differences. They ministered to us well.

It is time to roll up our shirt sleeves and start tugging people to the top of the rock wall. It is past time.

Oh, and I should tell you: On April 18, 1997 when it was clear we were going to have to deliver the triplets, those ob/gyn residents were clamoring to be in the operating room -- triplets are not an every day thing, after all. My attending physician let me choose who got to be part of the delivery. Two guesses who had to wait in the hall....

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?

Eight Times Harder.

I posted a rant on Facebook today. 

And as my supportive network has rallied around me by clicking the like button, the love button and the sad button....they have left comments urging me to start my own consulting firm to help other families like our's. And I am left wondering exactly what that looks like, exactly what I would say. And if I am over-reacting about this whole process -- the process of arranging for Benjamin to live on campus for his senior year -- by saying I am having to work eight times harder than parents of non-special needs children.

And if there is anything I am certain about, it is that I am absolutely 100 percent correct in saying we work at least 8 times harder and we should NOT have to. 

I understand that because my son uses a power wheelchair to roll through life, we DO require some special considerations. We require access to buildings, for example. We require access to rooms -- bedrooms, bathrooms, etc. So while I would really (really really) love a world where we just built accessibly, that isn't a reality. The men's single dorm on Benjamin's campus when he started his freshman year had a ledge to the community bathroom that required you to step up and over. That was ok, though, Benjamin (nor I) were quite ready to try independent living.

Over the course of that year, however, the university built an apartment-style dorm that DOES have accessibility. And we began to dream and hope and wonder what it would look like if Benjamin lived on campus. 

Last spring, Benjamin and I finally felt like we were ready to at least begin the conversation with the university.

I am not going to lie, I wanted the meeting to go something like this:

"We have been hoping you would want to live on campus, Benjamin! We have the apartment ready. Tell us what else we can do to make this happen."

Obviously, if I am writing this post, the meeting didn't go that way. 

Benjamin has done the work to be successful in college. He loves that campus. He loves his fellow students and the professors. He has taken large loads every single semester and he has been successful. He has been successful not because it is easy but because he is willing to work harder hours, longer hours, and through all the obstacles.

He has been successful because he accepts that he has to work at least eight times harder than his friends. At least.

And so even though I don't think it is right. And even though I know it can be done better and with more ease than is currently happening. I will continue to push forward. I will follow Benjamin's lead. I will work eight times harder. More if necessary.

Rest assured -- I'll keep you posted about the housing and the consulting firm! ;)

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