Can this soapbox be taller?

Benjamin is 26 years old. He got his first wheelchair at 5. So we have been rolling this road for 21 years. Hmm. (The fact that his wheelchair journey is old enough to drink is making me giggle through my stress as I type.)

That first chair was an easy pick: We needed powered mobility that could ALSO fold up and go in my non-accessible mini-van. We were in residency, our financial situation was pretty much watching for the generic mac and cheese to go on sale for 4/$1 and throwing in a chicken nugget when the budget allowed. Anderson's Wheelchair was kind and understanding, and walked me through what was an extremely emotional season. I paid what I could each month (hear me loudly: insurance only covered a small amount and the rest was up to us!) and finally sent the last payment four plus years later just as we ordered his second chair!

Because he was growing, changing, having spine surgeries....he got two more after that during our time in Phoenix. The team there loved him, they loved Wade, and they treated us with the utmost respect and care. For us that meant scheduling promptly, listening to our needs, and yet, making sure we understood what was available (we didn't.). There were seat cushions and seat backs molded to his body, wheelchair trays custom made for each chair, and constant attention to positioning as Benjamin has quite the challenge to maintain posture that doesn't make his back hurt. 

We moved to Mississippi thinking we were set but that blasted posture became a bigger issue. He couldn't reach his computer to do his college work if his pelvis was constantly sliding down and out. So we sought the experts again. They had the best hearts, and admittedly, we don't do this enough to question anything, so we listened to them, ordered what they said and then I cajoled, urged, pleaded with Benjamin to have a good attitude about the vast differences he felt. It took him getting stuck in an elevator before I HEARD him, and realized we had completely changed the way his chair drives. His new chair was not a mid-wheel drive and in fact changed every single thing about how he maneuvered through space.

I felt terrible. I was all "it is just different, you will get used to it," "You just hate change, Benjamin, this is holding you in your seat so well!"

Sigh.

I didn't hear him. I didn't listen.

He became a representative for Quantum chairs not long after we moved to Delaware and an entire team surrounded him to guarantee the best seating, the best posture, the least pain and, to Benjamin's delight a mid-wheel drive! He has loved it and has begun to urge therapists, doctors, wheelchair designers, to NOT change the structure of a young person's means of mobility every time a new chair is required. He explains it is akin to getting a new set of legs and having to learn how they work. 

I hear him.

But today, four plus years later, he is having pressure spots from the back that worked so well early. He is having some pain from a cushion that no doubt needs replacing and his chair needs to adapt a bit. So we have opted to go through the seating clinic here and depend on the professionals who know how to make sure he has what he needs.

We met with them in early August and they tweaked this chair as much as possible knowing it would take months to get a new one in. We were grateful. 

Benjamin answered all the questions asked of him for two hours about what he likes about this chair. And we got the ball rolling for a new one.

And then a huge insurance snafu stopped the process. (That is an entirely different blog post....suffice it to say we had to jump through a million hoops and still the powers that be weren't communicating with each other and failed to follow up. ugh) One night over dinner we discussed the insurance issue, and the young occupational therapist in the family said, "Wait! He is getting a new chair? Did you ask for...."

And Claire began to list things that would, as Wade said, potentially be "life-changing" for Benjamin. Things we had no idea existed.

Benjamin teaching at AACPDM

I asked her to get involved. I looped her in on the communication with the seating specialist. And finally after a month of phone calls and emails and phone calls, the insurance snafu was settled and we could move forward, only to be told we would have to wait three months for an appointment to look at the suggested tools Claire thinks would so help Benjamin.

Three months. It has already been two since our first meeting. And more than that since I asked for help for the pressure spots.

I received an email today that the appointment has been moved up a couple weeks. So now it is just 2 and a half months from now. It will be months after that before the chair arrives. So probably close to a year of discomfort for Benjamin before we have a solution.

I say all of this because, well because I frankly need to vent, but also because we must do better. Do you know what a pressure sore can mean for someone with Cerebral Palsy? At the worst: death. But before that it can rob them of weeks, months even, of their life as they have to lie on their side/stomach/back out of their wheelchair while it heals. Jobs are affected. Relationships changed. Joy lost.

So let me climb up higher on my soapbox as we demand changes from a healthcare system that is overworked, an insurance system that has no understanding, and a system that is frankly letting our most vulnerable down every day.

Thanks for coming to my rant. 

The road was rocky but the view is worth it!

The memories on my social media feeds remind me of summers past. Not that I could forget. 

The feed of photos from the triplets' teen years could explain why my stomach knots up when I think about our time in Arizona. One surgery after another. 

One hard recovery after another. One summer spent squeezing in fun around all the therapies, the casts, the incisions that needed to heal.

(I would be remiss if I didn't point out that my memory feed also points to amazing friends who stood with us, prayed with us, sent movies and meals to us -- from near and far! We are ever grateful!)

Last week I drove Mason to Newark, New Jersey to catch his flight to Athens, Greece. I was a bit teary-eyed and had to explain that it was not because he was leaving (I mean hello. Of course some of the tears were because he was leaving, I like my people here, within arms' reach! ;) ), but rather because I was completely overwhelmed with gratitude that all those summers spent recovering, rehabbing, working to make his legs be the best they can be was for this. He did the work, endured the pain, and overcame the challenges so that today he could lead students as they dig in Ancient Corinth, Greece!!

Mason's view in Greece!

Benjamin is hanging close to home for now -- working with his advocacy group and welcoming them here as often as possible. He met with our state legislators last week and helped convince them to raise the state reimbursement rate for personal care attendants!! His willingness to put in the work and use his experiences, and his gift for speaking to improve care for all people with disabilities amazes me daily. 

With Senator Laura Sturgeon

Delaware Legislative Hall

I wouldn't exactly want to re-live those summers although I miss having my little crew all under one roof. But on this side of the healing, I am so grateful -- for the medical teams, the prayer warriors, the hand-holders and the amazing young men who endured it all!

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.

Cerebral Palsy Month: Ask Questions

The little girl was standing with her mother when the elevator doors opened. She looked at Mason with his crutches and her eyes grew round with wonder. "But, wha?" "I mean what?" "Wha...."

I am not sure if her mother was tightening her grip and that is why she couldn't form the sentence entirely. Seconds passed as Mason and I made our way with our luggage off of the elevator as she stammered and tried to form what she desperately wanted to ask:

"But what is wrong with him? Why does he use THOSE??" she finally got her questions out as she pointed to Mason's crutches (if you have been around here a minute, you know I named those power sticks the minute he started using them at 3) and her mother fairly jerked her onto the elevator.

The doors were beginning to close as Mason was explaining how they help him walk. We chuckled at her wonder as we made our way out of the hotel. I told Mason I wish parents wouldn't try and stop children from asking questions and asked him how he felt. Not surprisingly, his answer was amazing:

"I think that suppressing innocent questions is what begets ableism. If we welcomed questions, rather than making them taboo, disability wouldn't be as frightening."

"I think that suppressing innocent questions is what begets ableism. If we welcomed questions, rather than making them taboo, disability wouldn't be as frightening." -- Mason Shrader

It is Cerebral Palsy Awareness Month. I can't help but want to scream that we are willing to answer every single question you have. We are thrilled when your littles want to know all the things about the power sticks AND the power wheelchair. Let them ask!!

And the hotel we were leaving -- just one of the stops as Mason and his power sticks prepare to accept one of the FOUR offers he has received for his PhD program. He applied to four. He has been accepted to all four.

And that dear ones, is what Cerebral Palsy looks like!

Cerebral Palsy Awareness. Our hope.

*Today is Cerebral Palsy Awareness Day in the US. I am pulling out one of my first awareness posts in hopes that you will enjoy the stroll down memory lane with me and of course it is always my hope that by hearing our story, you'll be more aware of the stories around you!*

I do not gamble. Ok, so I have never gambled -- unless you count the penny poker the senior boys taught us on the church bus driving to North Carolina one summer -- but if I were inclined to gamble, I certainly wouldn't any longer! Numbers seem to work in an opposite-from-the-rest-of-the-world-way for me.

For example, the odds of having triplets are one in 700 or something crazy like that. No wonder every one was shocked when an early ultrasound showed three babies!

And though the odds of premature babies developing Cerebral Palsy (CP) is high -- nearly half of children with CP were born prematurely -- there are usually signs in their Neonatal Intensive Care (NICU) stay that warn of that. We had none of those.

My Benjamin came home from the hospital more than a month before his due date. He was a strapping 4 pounds -- huge compared to the 2 lb. 15 oz baby he had been weeks before -- and was doing so beautifully. We had no indication that within months we would be concerned about developmental milestones and worried he might have CP.

Sweet Mason was more troublesome in the NICU. But he had barely weighed two pounds at birth so no one was really surprised. His every breath and every added ounce was a miracle. Any yet, scans of his brain showed no signs that developmental delays might be a part of his future.

It was our darling Claire who scared us the most in the NICU. She showed signs of seizure activity and so the doctors kept her extremely sedated. I wanted to see her little eyes so desperately, but she was content to sleep and get her beauty rest. When we brought her home, we were certain she was the special needs child of the three. When the neurologist cleared her at her first follow-up visit of any seizures or even the need to follow her -- we rejoiced.

We thought clearing that hurdle meant we had three healthy babies and we could begin the fun stuff! The odds were with us, right?

I had a girlfriend who had a baby boy born on the triplets' due date. I loved getting together with Jill for months. We discussed everything from baby food to diapers to....well, you know, all the stuff new moms discuss. But then the kids reached the point where her cute little fellow was sitting up and none of my three were. Play dates became hard. I felt a stabbing pain every time we were together. (Oh, how I wish I could say this has gotten easier...but almost 17 years into this ride, listening to Moms list their son's accomplishments can still feel like a dagger.)

I questioned our pediatrician and she gave me every assurance that premature babies take longer to reach milestones. She was not concerned in the least.

But when they reached nine months and Claire was sitting, crawling and making the milestones my books said she should be making....and Mason was trying, oh how he tried. He would watch his sister and then work with all his might to emulate her behavior. But my Benjamin was content to sit with his Mommy and give me all kinds of delight. He was talking already. He could recognize the Mickey Mouse Clubhouse song in two notes and he was an absolute joy. But he didn't move. He didn't roll. He didn't try to crawl. And he could not sit.

Our pediatrician ordered physical and occupational therapy to begin for the boys. But she still assured me that all was well. They just needed a boost, she said.

I quit reading the books. I really didn't need to know where they "should" be. I quit meeting with my friend. It was too hard to see her son move and groove.

My best friend became the boys' occupational therapist. When Susan held up a strand of beads and told Benjamin to reach for it, I would ask why in the world he needed to do that. Susan would calmly explain that we needed him to reach across midline -- developmentally she explained, this is a huge step. Benjamin could not. Through tears, I would ask Susan what it meant for his future if he never reached across midline, she would cry with me as she explained and then she would go back to working, pushing, and teaching my boys to do what their brains were not wired to do naturally.

On the day before the triplets turned one, Wade and I took the boys to see a developmental pediatrician. It was the worst appointment of my life. We were this doctor's first appointment of the day. He was more than an hour late. (Traffic he said.) Benjamin had a temperature of 102 degrees. He was lethargic in my arms and yet, we felt the appointment was too important to miss.

"Of course these boys have Cerebral Palsy. What did you think I would tell you today?" he informed us within minutes of meeting our little family.

With tears running down my face, I explained about Benjamin's strabismus (his eyes crossed) and how he was scheduled for surgery later that week. I explained that his physical therapist thought once his vision was corrected he would reach across midline and begin making developmental progress. I am certain my tone was desperate, hopeful, trying to make him give us something to cling to.

"Ma'am, I have seen blind babies with more head control than your son. Eye surgery will make no difference."

We never visited that doctor's office again. Though months later we would run into him on our way to therapy. He didn't recognize the boys -- because although he was right about the Cerebral Palsy diagnosis he was wrong about Benjamin's head control. He didn't account for the sick, sick baby in my arms that day who simply didn't feel like holding his head up. So when he saw my boys sitting up, entertaining all who walked by them, he was shocked.  Of course.

My phone began ringing off the hook as the news of the diagnosis spread to family and friends around the country. And it was in those calls of encouragement that I realized we would make it.

I found my assurance as I offered assurance to all that called: Our boys had not changed one bit from who they were the day before the diagnosis. They were the same adorable little boys they had been before we had a label and they would continue to be the same. Our job as parents, grandparents and loved ones did not change with a diagnosis. Oh, there would be more obstacles to overcome and more fears, more tears and some heartache but our JOB did not change: We were to cheer them to their fullest potential; we were to knock down barriers and find ways to help them succeed.

The same job I have as Claire's Mom and Cate's Mom. No change.

We have chosen to add to those responsibilities: My husband works tirelessly to help families like our's. As a pediatric orthopedic surgeon, it is his job to help children with Cerebral Palsy reach their potential. Further, he does hours and hours of research to expand his knowledge as well as the knowledge of those who care for the more than 17 million people with CP around the world.

My boys advocate for special needs awareness, they speak to education majors each semester to inform, educate and ensure that they are better equipped to teach any students with special needs in their classrooms. My Claire doesn't have Cerebral Palsy, but yet she also advocates for special needs children through her blog, her work with the special needs ministry at our church and with her desire to become an occupational therapist. And our Cate....well, at three she almost socked a boy for calling her brother weird. She has mellowed in her methods, but at 8 years old, she is one of their biggest fans!

We are a blessed family -- and though there are certainly challenges the blessings far outweigh the trials. Far far outweigh.

So, though counting cards, or dice, or any manner of gambling is not my thing, you can always find me right here -- counting my blessings all day long!

*********

Benjamin, Mason, and Claire have accomplished much in the years since I shared this post. Benjamin is the director of Arise Delaware -- a self-advocacy network; Mason is working on his second master's degree in BioArchaeology; and Claire is finishing up Occupational Therapy School! Baby sister, Cate, is a sophomore in high school! I still don't gamble...but I would bet on these four changing the world all day long!!

Following your Child's North Star.

Benjamin and I decided to celebrate his fast approaching 20th anniversary of powered mobility by talking about how hard that decision -- to let him try a wheelchair -- was for me and how we might make it easier for the next mom...we'd love for you to join us!

World CP Day.

I was still on the Labor and Delivery floor desperately trying not to deliver three babies the first time I heard the words Cerebral Palsy used in relation to my children.  A female medical student was talking loudly outside my room as the medical team made rounds. She said she would never have taken medicine to stop labor if she had been me, she didn't want kids with cerebral palsy. I will never know if my amazing attending physician heard her or not, but I do know he banned those students from my rom for the remainder of my 10 week stay under the auspice of protecting the privacy of my husband (who was at the time a med student) and I. But by then the damage had been done. Her words pierced my thoughts, interrupted my sleep and weighed heavy on my heart.

While I was not sure exactly what such a diagnosis entailed, I knew that life with cerebral palsy was a better option than death.  I longed for the safe arrival of these three amazing babies who I already loved with all that I was...I really just wanted my babies to live, to breath, to rock in my arms. 

When you are flat on your back in a hospital bed for weeks on end because doctors are petrified if you so much as move a foot off the bed you will go into labor...

When every doctor has explained and explained again to ensure you and your husband are absolutely clear that your babies are too tiny to survive if they are delivered "now"...

 When you are so scared that you throw all the parenting books into the trashcan...

I really really just wanted my babies to live, to breath, to rock in my arms.

Holding them, rocking them, even the waking up round the clock with them was sweeter than I ever imagined. But when the time came for them to start moving -- rolling, sitting, crawling -- and we were forced to acknowledge that though they surpassed my wildest expectations, our boys were in fact not meeting milestones at the level their sister was. Though our pediatrician encouraged us that their development was probably just delayed due to their prematurity, she ordered physical therapy to help push them along.

Just days before their first birthday, we were given the official diagnosis of Cerebral Palsy. The next few years would stretch me further than I ever imagined and though the three faces that greeted me each morning were the lights of my life, there was also a struggle to read into each milestone -- or absence of milestones -- to what the future might look like for these amazing boys.

Because here is the hard truth -- a diagnosis of Cerebral Palsy has very little meaning. It doesn't say your child will need a wheelchair; or be blind; or deaf; or need a feeding tube. The diagnosis doesn't say if they will talk, walk or be able to feed themselves. The doctors can speculate based on brain scans and developmental history but really, the proof is in the child himself, and on one knows until they know.

And let me assure you, the not knowing, oh my stomach tenses up just reliving that season as I type, because the not knowing is the worst part. Once we know, then we can plan, educate ourselves and determine the best course of helping our children reach their full potential. But the not knowing. The not knowing was jut treacherous.

Talking, walking and feeding themselves - it always seems to be where the doctor starts. Benjamin was talking early, so we felt confident that area of his brain was not affected. Mason's speech was more delayed but we remained hopeful that he would catch up in that area -- and he did.

Walking was the next big thing. Mason was only 18 months old when he began using the little silver and red walker. He was incredibly driven to move and that attitude served him well. He progressed to the crutches -- we call them power sticks -- just in time to prepare to meet Mickey Mouse at 3 and a half.

Benjamin was not as motivated to move. He was content to sit in Mommy's lap and love and be loved. He could talk to anyone and everyone and he did and that was enough. When at 3 he began using the walker, it was only the thought of Mickey Mouse that motivated him to move his feet. And even then, the physical labor was so intensive and tiresome that we knew it was not practical for long distances.

Eating was not much different - Mason was extremely motivate and therefore figured out ways to get the food to his mouth. Benjamin had no interest. If even tried to teach him to feed himself in therapy, he fought us because he wasn't hungry. If I tried to teach him at mealtime, he just didn't eat, and he could not afford not to eat. It was a horrible Catch 22.

My trio are 24 today. I can type and even speak about those early years without crying -- for the most part.

My precocious talker, Benjamin, uses his voice to advocate for not just the disabled but for all marginalized populations. He educates, he writes, he uses his voice. He still doesn't walk, but rather rolls through life in a power wheelchair. He still doesn't get real excited about food-- unless shrimp or tacos are involved.

And the one who was a delayed talker -- well this week he guest lectured from Texas to Georgia about disability in classic mythology! He teaches classes at Texas Tech and is working on a second Masters degree there, this one in Bio Archaeology. He wants to continue studying disability in ancient cultures. He still uses his power sticks to walk. And as far as feeding himself -- Mason has an amazing palate. We all let him order first when we go to restaurants and then follow his lead!

Today is World Cerebral Palsy Day.

Did you know approximately 18 million people worldwide have CP. That is 36 million parents who at some point have micro-analyzed those babies talking, walking, and feeding. That is 18 million homes that probably need some level of adaptation. That is a lot of power sticks, walkers and special feeding utensils.

But y'all,  according to WHO, at least 10 million children desperately need a wheelchair but do not have access to one. We traveled to Mexico on mission when the triplets were pre-teens. The young waitress at the restaurant our team pulled into upon crossing the border could not take her eyes off of Benjamin. I assumed she had not seen someone with a disability before.  Honestly, I found myself a bit annoyed that she was staring. Until she came up to me, placed her hand on my arm and asked if he had CP. As I nodded yes, I saw the tears rolling down her face. Between my limited broken Spanish, and her better English, we sat and talked for a bit as she told me about her son who also had CP. He was a couple years younger than my trio but never leaves their home. He lays in the bed all day every day, she explained, because he does not have a wheelchair.

Today is World Cerebral Palsy Day and I am wearing green to bring awareness to not just what CP is but ways we can make the world easier to navigate, easier to triumph, and easier to serve for young people like mine.

 I am wearing green because the more we know about CP the less stigmatized it becomes. The more you know the more accessibly you can make your home, your business. The more you know the more open you can be to relationships with people with CP. The more you know the more we can work to insure young people with CP around the world can get the mobility devices they need, can get the education they require, and can make the world better and brighter with their brilliance.

I am wearing green because that medical student outside my hospital room almost 25 years was ignorant and I don't want to leave anyone in my path ignorant.

I am wearing green because I am so grateful for the amazing men I get to call sons and the absolute gift they are to me --- and the world.

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! 

CP Awareness: What It Means to Be the Mama

Yesterday the boys and I were interviewed by a new friend -- Emmanuel Jenkins -- for his podcast for Cerebral Palsy awareness. A family man juggling the needs of his home while preparing for the interview, Emmanuel is smart, engaging, driven. He also happens to have CP. 

As I listened to my sons answer Emmanuel's questions, I was as always proud of them. But more than that, I was struck by their story. Yes, yes, I know their answers by heart -- Mason has always said my mouth moves as they tell their stories because I anticipate where they are going with them. But yesterday, I enjoyed hearing them speak to the way they have chosen to put their CP to work rather than working to overcome their CP.

Mason talking about disability in ancient cultures and the way he is building his future around studying this past, is fascinating. And Benjamin discussing political advocacy and ensuring we move forward in the care of a population that is often not on the front of people's minds.

Trying to get in the frame for our interview!

Today is CP Awareness Day -- officially. And so over coffee this morning, I have been thinking about our family in general, the boys in particular. I have been thinking about all that Benjamin and Mason said yesterday. I have been thinking about the effect of CP on Claire and Cate, and the away it shaped the scope of Wade's entire medical practice and career.

And I have been thinking about the ways CP has changed me. Because this is after all, my story.  My amazing wonderful incredibly world-changing triplets are telling their own story these days. They are captivating to listen to and while I will spend my life standing by to assist, they are fighting their own battles and knocking down their own road blocks. I am beaming with pride.

So I can not speak to what it feels like to have CP. But, my boys have no memory of how it felt when the doctor diagnosed them. I however, remember every detail, down to the way the room smelled. My boys don't remember those early days of physical therapy. I however, remember. I remember wanting desperately for the therapists to believe in them. I wanted the therapists to love them. I remember building relationship after relationship with once complete strangers because entrusting my little bitty babies to them, meant bringing them in to our family and loving them. 

Benjamin and Mason were living their lives. They -- and their sister Claire -- were adorable and sweet and loving and so so funny. And for me, I wanted the world to see all of that. Not their CP. And so I took photos and told their stories and made videos to send the grandparents. And then told their stories again.

And as they grew, I helped them explore their passions. Because I knew they had talents and dreams and passions that were not limited by their CP. Benjamin and I took music class and theater class. We played drums together and even figured out how to "act like a pizza" within the limits of his little body. And we played and had fun and celebrated childhood!

As hard as Mason worked to move at physical therapy, he worked equally hard at gymnastics, Tai Kwon Do and archery. We explored and tried new ways for him to soar. And when one didn't feed his passions, we tried another. Because his need to compete was not bound to his cerebral palsy.

And so, as I sit here this morning, I am tempted to label this post as the evolution of a mother. And for certain, I have been changed by the CP diagnosis. I have been changed by Benjamin, Mason, Claire and of course little Red (Cate).

But the actual truth is that as vividly as I remember the smell of the room the day the doctor told us the boys have CP, I also remember the thing that kept hammering in my head: YOUR JOB HAS NOT CHANGED.

I did not need to evolve to be the mother of Benjamin, Mason, Claire, and Cate. I did not need to evolve to parent two children with cerebral palsy. Being Benjamin and Mason's mom required me to do exactly what I had known I had to do the minute I realized I was expecting: my job is to help them reach their full potential. My job is to expose them to options and opportunities. My job is to cheer them to their personal best. My job is to remove as many obstacles as I can to make the opportunities available. And while CP presented -- and continues to present -- unique road blocks, the ultimate job is not unique to mothers of children with CP.

I believe in my boys. I believe in my girls. I will always and forever be their number one fan. And I will always fight to be on the front row of their cheering sections.

And if, these amazing grown men -- or women -- need me, I can still grab a battering ram and am more than willing to knock down some walls.