Tuesday, July 2, 2019

Lightening Bugs and Moving Boxes.

Last night the lightening bugs were out in full force in my back yard swallowing me in memories of my childhood. Little me would chase them around in the hopes of putting them in a jar beside my bed so I could watch them as I fell asleep.

As I walked back into the house, smiling at my memories, I was struck by how fast this new place has become home. Oh, I am still unpacking boxes -- our painters are still working in the upstairs and so not only are boxes waiting to be sorted, I have had to undo the bulk of what I had already done. (If you read that with a tad bit of frustration, you read it perfectly! ;) ) But the downstairs is almost exactly like I want it and that is where we live. We have established our dinner routine -- everyone has their spot at the table. We have figured out our favorite cozy spots for watching TV as a family at night. And I have even started cooking in the kitchen and can do so almost exclusively without having to search for things!

Deep deep sigh.

Breakfast nook -- with a barn door my Grandaddy built.

It's amazing that the movers just pulled away from our curb four weeks ago today. (Except the truck that has all our outdoor furniture which is just sitting somewhere NOT making it to me....but that is a completely different story.)

Our keeping room!

In those last weeks before leaving our Mississippi home, I would wander through the house turning off lights and locking doors before heading to bed every night. Even though we have moved several times in our marriage, and even though I have had to make more than a couple houses feel like home, I worried during those evening walk-throughs that this time would be different. I was worried that leaving Mississippi might break me this time -- a bit less young than I was when I left her in 1991.

But here's the thing, and it is not just a cliche, home is what pulls us, draws us, comforts us. And home...well home is where my people are. Period.

I am in love with the blue on my dining room walls.

The last year living with Wade in one state and me in another was lonely and hard and just really awful. And yet, it probably prepared us to make the move because as hard as leaving friends, proximity to my Mama, and all the known was....everything is better when we are together.

Just to keep it real -- we have no bedroom furniture and...
I am using a moving box as a bedside table. Design at its best! :)

And so, even if I haven't found people to gather here yet -- I am breathing deeply and thanking God for an ability to acclimate, to flex, to hammer the nails and hang the pictures, to take whatever walls we have and make them our home.

Carol - The Blessings Counter

Monday, May 13, 2019

Not a burden. Never a burden.

I sat across the desk from the headmaster with my three almost-five-year olds beside me. We were visiting the Christian school in our town with the highest academic acclaim and frankly, where most of my friends sent their children. I was anxious to hear if he felt the school could accommodate my children.

"Mrs. Shrader, this is what we can do," he began. "We'll enroll your children on a three-month probationary period. If in three months it proves too hard on my teachers, we will have to ask you to find somewhere else for them to attend school."

I was not quite five years in to this Mama Bear role. My voice was perhaps softer than it would become over time. Perhaps. But I vividly remember clearing my throat and looking him dead in the eyes as I said, "Really? And you think starting kindergarten -- the beginning of their formal education -- on PROBATION is the best way to set them up for success? I can not even imagine the stress that would place on them and on us as a family. No thank you."

We left there bothered but not heart-broken. I had heard of a choice school in town that also had high academic acclaim. I made an appointment with the principal there.

I sat in her office and talked about my amazing children. For her part, she explained that school admittance was on a blind-lottery basis. But if one of their names was drawn, all three would be accepted. I liked those odds. But then she expressed concern about how hard her teachers would have to work to accommodate my boys. All these years later, I remember the feeling that my words were trapped in my throat behind all the emotions. She then told me how the school prided themselves on their racial diversity. I asked her how she ensured that if they had a blind lottery? She assured me she had ways of marking the applications.

And so I walked out knowing that even though the odds were in our favor -- we had THREE entries in the lottery after all -- my children would NOT be selected in her not-so-blind lottery. I was right.

And so I loaded the trio and we went to our local public school for a visit.  The sweet principal met them with a smile. She gave a delightful tour. She encouraged our hearts. And though kindergarten and first grade would not be without their challenges, we never felt we were burdening the teachers in any way.

At the Churchill Elementary School accessible playground -- a playground we worked to build so first grade could be as inclusive as possible.

Of course our education saga did not end in first grade. But as those three little former preschoolers walked across the stages of their respective college stages this past week, conversations about kindergarten were the ones rattling around in my head. It makes sense really that my mind celebrating the end of their formal education (Ok, not really, all three are looking at grad/professional schools), would go back to the beginning to the scary, unsure-of-tomorrow beginning where educators had so much power over how we faced their education.

I would like to call both the headmaster of the private school and the principal of the choice school today. I would like them to know that those little preschoolers whom they so worried would place an undue burden on their teachers graduated with honors this week. Lots and lots of honors. 

I would like to tell them that when Benjamin rolled across the stage with his diploma the faculty were the first to stand in what turned in to a standing ovation throughout the graduation hall. Those faculty did not stand because Benjamin had been a burden on their teaching. They stood because he worked hard in their classes, he engaged on a day to day basis, he encouraged his fellow students and set the bar high for their performance. I would like to tell that head master and that principal that they missed the opportunity to have this Magna Cum Laude graduate as an alum of their respective schools.

I would like to show them the photo of Mason receiving his hood for his thesis. I want them to read his undergraduate thesis on disability in the ancient world. I want them to know that this honors project won the Phi Beta Kappa award for best honors project at his school. I need them to know that they can not list this amazing Summa Cum Laude graduate and all of his accolades among their alumni.

And because they rejected her brothers, they also missed out on having Claire as an alum. My amazing wonderful Claire who also graduated Magna Cum Laude and who won awards for her writing, her Spanish, her leadership. They missed out on a student whose professors stood in line to hug her, to have their photo with her, because she loves big and encourages everyone in her path!!

Honestly, I didn't waste time feeling anger towards these uneducated educators as I sat waiting for my amazing graduates to process. Rather, I felt immense sadness that these people have places of power that might still today be leaving mothers like me -- families like us -- feeling frightened, inadequate, scared to hope for the future.

And then I felt determined -- even more determined than usual -- to keep writing, speaking, bellowing to mothers like me that our children are worth far more than the sum total of their motor skills. FAR FAR MORE WORTHY!! I am committed to helping educate the educators -- I will pour out my heart and our story over and over again to ensure that no other mama is ever told her five year olds can enter a school on probation, for goodness sake.

Did I mention that Benjamin, Mason, and Claire graduated from college this week? Benjamin graduated Magna Cum Laude with his BA in Dramatic Writing and a minor in Political Science. Mason graduated Summa Cum Laude with a BA in Sociology/Anthropology and Greek and Roman Studies and a minor in Archaeology. Claire graduated Magna Cum Laude with a BA in Spanish and a minor in English Writing. And all of that happened in FOUR YEARS!

I am so proud of these amazing kids. I am so proud.

Carol - The Blessings Counter

Sunday, May 5, 2019

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!!)!!!

Carol - The Blessings Counter