Lucky #13

On By skrosenfeld1 Comment

Dear Danny,

(It has been so long since I last wrote something on this screen, I had to reset my password.

So much has happened in the last 18 months. The way you go to school, the way we go to church, the way we live on this planet; its all so different. Though I am certain this blog will not be what you need to remember these current events, there is a lot I need to say. And I will – I promise. This story isn’t more important, but it is easier. )

I think that I was in 7th grade the first time a doctor told me that it would ultimately be challenging for me to have children. I heard the information the way that kids do, when “adult” feels like anywhere from an era to a lifetime from “now”, and I let it fall to the back of my brain. I was sitting in a very Grown Up office with a lot of art featuring Orchids on the wall, covered in a paper sheet. I honestly just wanted to be anywhere else.

I was in 9th grade when I went on a field trip and had to hand the birth control pills I took every day, to keep anemia at bay, to a chaperone. There is nothing subtle about that pink compact of pills, and it prompted more assumptions about my lifestyle than it did concern about my health.

It wasn’t just the bleeding; soon there were ovarian cysts and a diagnosis of Poly Cystic Ovarian Syndrome. College started off with food restrictions and exercise, fad diets and cleanses. Hormones on top of hormones. Sometimes it felt like it was working.

Several years later a doctor finally took me seriously about my pelvic pain, when I involuntarily burst into tears during an exam. My first surgery for endometriosis came quickly after that, and 6 months in a drug induced menopause followed.

And then, as you know, the process of child bearing was every bit as complicated as they had promised.

I look at myself now, hardened by 28 years and 12 pelvic procedures, and see no trace of the modest girl who wished the paper sheet covering the lower half of her body would just swallow her whole. Now I see nothing but data, a collection of circumstances, and a mountain of evidence that it is time for this ridiculous roller coaster I’ve been riding since puberty to come, if you will, to a complete stop.

Luke 8: 43-48

43 And a woman was there who had been subject to bleeding for twelve years, but no one could heal her. 44 She came up behind him and touched the edge of his cloak, and immediately her bleeding stopped.

45 “Who touched me?” Jesus asked.

When they all denied it, Peter said, “Master, the people are crowding and pressing against you.”

46 But Jesus said, “Someone touched me; I know that power has gone out from me.”

47 Then the woman, seeing that she could not go unnoticed, came trembling and fell at his feet. In the presence of all the people, she told why she had touched him and how she had been instantly healed. 48 Then he said to her, “Daughter, your faith has healed you. Go in peace.”

The thing that has always struck me about this miracle is that she had to reach for it herself. Her problem was not one that was obvious enough to broadcast a need for healing, no one begged on her behalf or carried her to Jesus. But she knew, and she believed; she lived in the cage of her pain and bleeding and the exile that it caused. She reached out in faith, and she was healed. She was freed.

All this to say: tomorrow I will be headed to the hospital for my 13th and hopefully last gynecological procedure – a hysterectomy. Hopefully a partial one, but I am leaving that in the capable hands of the woman who has seen me through an awful lot of this mess. I know what we are expecting the surgery to be, but I have confidence – I have faith – that we can handle any parting shot this organ wants to fire.

I am pretty excited about it, because I will no longer feel like I’m carrying around a ticking time bomb. I will no longer lose days if not weeks of my life to pain and exhaustion on a regular basis.

Danny, I think you are pretty excited about it because it means you get some bonus days off of school. And, if that is enough to make you smile tonight, that is just fine with me because why this is really exciting is difficult to explain.

I think, much like when I quit my job to stay home with you, *that* this happened will be more important than why. This will mean that more often we will go to that place. We will go on that walk. We will go for that swim. It means that I may once and for all recover from all of this and be a version of your Mom that you and Ezra have never known. And, though I know there will be recovery on the other side, I think that our entire family will benefit from the breaking of this chain.

I will always be grateful for you, Danny, and your brother. For all that it put me through my body managed to grow my two greatest treasures, and that is a privilege guaranteed to no one. I don’t take it for granted or regret any ounce of the effort it took to bring you both into our lives.

But now the best thing I can do is close this chapter so that, for as long as we are together, we can go as far as the Lord allows. I can see the hem of His robe, and I have faith I can be free.

Love,

Mommy

(P.S. – I’m going to need the Switch to binge on Animal Crossing when I get home. Consider yourself warned!)

Being James Madison

On By skrosenfeldLeave a comment

Dear Danny,

Today is the last day of school before your very late, very necessary and well-earned Spring Break.

Fortunately for all of us, you generally like going to school.  With the mayhem and chaos of the beginning of the year having calmed, and the darkness of 3rd grade having faded from open wounds into pale scars, you now wake up every morning ready to meet your day.  You try hard.  You come home happy nearly every afternoon.

Still, now that we are in the 4th quarter of your fourth grade year, you are very familiar with the tides of the school schedule and have been looking forward to this break in the action for a long time.

4th grade field trip to Harpers Ferry
By the end of last year your Dad and I knew something needed to change; there wasn’t a single member of our little family that wasn’t in some state of crisis.  As humans, we can be quick to understand that physical pain is a sign that our surrounding conditions need to change but much slower to realize that emotional discomfort is usually a similar communication.  We feel the pangs of our heart breaking and struggle to know if we should call it pain or growth.

Truly, what we were facing with you was pain.  More than discomfort; more than just a failure to thrive.  We were watching a complete deterioration of the foundation that had made you successful and happy up to that point.  We knew that what it would take to stop that erosion was nothing short of a complete rewrite of our life and family routines.

So we did that.

And we have been rewarded by the opportunity to see your successes in many areas this year.  We’ve seen goals mastered and challenges accepted and accommodations refined.  We’ve seen you call a new place Your Place and new people Your People.  We’ve seen you happy; we’ve seen you heal.

A few months ago, I remember seeing the words “4th Grade Wax Museum” on a school calendar.  “Huh…?”  I thought to myself, followed quickly by “No way.”

For most of your school career, we have invested almost exclusively in the math and language arts goals.  The “content” areas – the science or social studies SOLs – have always been a struggle.  And, because we know that finding a balance between your temperament and your academic achievement is a daily challenge, we have always understood that a certain amount of triage is necessary.

However, there is no avoiding Virginia studies in 4thgrade.

And though your amazing team at school has brought you further in this area than ever before, the requirements of this Wax Museum project seemed almost laughable to me.

  • Research an important Virginian
  • Write a 60 second speech about them
  • Memorize it.
  • Procure and wear an appropriate costume.
  • Present your speech multiple times as a “wax figure” in the gym, as student tour guides lead various groups through the exhibit.
I’ll be honest and say that not a single part of that felt like it was achievable.  I was prepared to write it off entirely and wait for an alternative assignment until one day a speech came home, complete with instructions to work with you on memorizing it.

“Danny, did you write this?”

“No, I typed it.  See?”

And just like that, it all felt achievable.

We worked on it.  We worked at home and you worked at school.  We worked in the morning at the bus stop and in the car and at church.  You have an incredible memory but your methods are your own and I had no idea how to tap into them.  No idea how to get you to a point where you would memorize something on command.  No idea where to get you a costume you would find acceptable or if you would even wear it.  No idea if you would go to the gym.  No idea if you would say your speech if a tour guide tapped you on the shoulder.

All I knew was that 7 months ago I had stood with you in the 4th grade hallway, with every administrator this new school had to offer, trying to convince you to stop sobbing and go back into your classroom to finish the day.  And here we were now, with James Madison.

So we worked on it, and we worked hard.

This is the part where you probably would expect me to say how amazingly it went.  How you stood in the gym and gave your speech and blew us all away.  How empowering it was to see you successful in a sea of your peers.

I was ready to write that story.  In my heart, I already had.

But what really happened was more like what I had feared when that calendar showed up in my email.

When I arrived at the school your name was not on the board as a presenter (probably because of the likely chance you would refuse to do it).  I walked through hallways filled with nervous and excited 4th grade Virginians and looked for your face, never finding it.  On my second pass through the halls I noticed you in a different classroom where the teacher cheerfully told me that all of the students in your class that weren’t in this performance of the wax museum were in her room.

So we talked, you and I.  We talked about the work and the costume and how proud everyone would be if you would just walk to the gym with your class and see how you felt.

Please buddy, just try.

Just say it once.

Maybe just the hat.

Just come with us and see.

And then we left you there in that classroom, happily chatting with the teacher, all of the effort of James Madison left in a bag in the resource room.

I have written before about how your relationship with disability resembles someone masterfully walking a tight rope; you place your feet expertly on the line between accommodation and independence, falling occasionally to one side or the other before finding your footing again as the brilliant, wild, neurodiverse creature that you are.

And the world is slowly catching up to you, baby.  How lucky we are to be with you in this time and place – in all of eternity – where the tides are turning and the gifts of minds like yours are finally being accepted, regardless of how they may be wrapped.

But damn.  Days like today can be hard.

Because the problem with the tight rope act is that it is easy, for us, to forget how delicate the balance really is.  It is so easy for me to get swept up in what looks like a win forming in the distance.  Easy to dismiss that you successfully completed 4 steps of an “impossible” 5 step process because I am disappointed that the last part – the moment for everyone to see you shine – didn’t go to plan.  Easy to miss that you are losing your footing on the rope, only to arrive and find you on a different side of the line than the kid I thought I put on the bus this morning.

Today was a big day at your school.  There were several performances in two locations and the building was absolutely packed with nervous excitement and joyful accomplishment. And if I’m being honest, I really didn’t want to be there.

Because the decision we make to keep you in the same programs and classes as your peers in the general education setting requires the hard work of…seeing you in the same setting as your general education peers.  And sometimes the lines of demarcation are so painfully obvious…the difference between what makes an outstanding student and an average student.  And the difference between you and, well, nearly everyone else.

Because your peers?  They are stars, Danny.  So bright and lovely.  They put in the work and they shine as reliably as the night sky.  And their parents rightly bask in their glow, charting the course of their lives by the specific hues and flickers they know and love so well.  And truly, our world needs the light of every single one of them.

But you my boy…you are an eclipse.  A force of nature and science so spectacular that your father and I and so many who love you are willing to spend months and years watching the sky, waiting for the magical moment.  And if we are in the right place, and we’ve done the calculations, and we’ve protected our hearts just enough, and the conditions are clear…we may not see you shine.

But we’ll see you change the sky.

Days like today can be hard, it’s true.

But as I feel my heart breaking now, I am inclined to call it growth.

And as long as we are growing, I know we are in the right place to see it when you blow us all away.

Courage. To change the things we can.

On By skrosenfeld2 Comments
Dear Danny,
 
 
You are fast approaching the end of your 3rd grade year.  It is hard to believe that a few days from now it will all be over; summer will be upon us and 4th grade will loom heavy in the distance.
 
I wish that this was going to be the story of another spectacular year – a fitting follow up to your best year ever – but 3rd grade was everything we expected it to be, honestly.  The reading was challenging, the content was unfamiliar and the pace was relentless.  The changes were a lot to manage; the expectations were a lot to maintain.
 
 
The funny thing about hope is that, as important and wonderful as it can be, it sometimes has a way of clouding over your reality.  Which is why your Dad and I, even knowing the steep challenges facing you from the start, were still somehow surprised to find you free-falling into the valley of a very dark year.
 
 
 
Years like this happen sometimes, Danny.  It is a fact of life.  And years like this demand the most difficult course of action.  They require you to look past the low hanging fruit of what you can easily change and examine the fixed foundations of your situation.
 
 
To find what you believe you cannot change…and change it.
 
 

It was nearly 3 years ago the last time we were faced with a year like this one.  We caught it a little earlier, attacked it aggressively, and you ended the year strong.  I quit my finance job that December to become a Special Education Teaching Assistant; a decision that reduced nearly every resource in the house to an almost unmanageable state but gave me more time.   Time to invest in you alone and time to invest in your relationship with your brother.  Time to fight about homework and meet teachers after school.

The time was expensive, but important.  The time alone would have been worth every penny but my experience in the classroom yielded some unexpected benefits:  I could not have known just how valuable it would be to stand on both sides of our county’s special education system.  The acronyms, the players, the tests, available accommodations; all of it makes sense to me now.  I have training and skills I could not have gathered left to my own devices behind the desk of my old office job.  These years in the school system taught me the language of your education and turned your father and I into fierce advocates and allies for you.

 
I traded my life as I knew it for time; I received that and more.  I don’t regret having done it.
 
I will never regret having done it.
 
 
It wasn’t just the content of 3rd grade that was challenging, but the concept. 
 
The materials are beyond you or, more accurately maybe, beyond your ability to demonstrate proficiency in them.  Nothing is unaffected by your gap in comprehension; there is no longer a preferred subject to hide in or test to feel confident in.  You have hit a wall with your reading and that wall is slowly expanding into the subjects you have always held as strengths; displacing your pride, caging you inside your frustration and making you a prisoner of your own behavior.
 
This year should have been about fostering independence academically, a springboard to the next level of education.
 
We spent the whole year running and never caught up.  We celebrated anything that resembled momentum like it was the goal itself.
 

Outside of school, however, has been as amazing of a year as we have ever seen. You have blossomed socially, in your way, and managed to develop and maintain a some very significant friendships.  We are seeing in you a willingness to examine yourself and your motivations as a result of these relationships and, for the first time in your life, you are starting to make decisions based on how your actions will make someone else feel.  You are beginning to seek ways to accommodate your own needs in a way that allows you to be a part of what your peers are interested in.
 
 
 
Your love is such a gift, Danny.  It is exceptionally precious because, while the emotion comes so easily for you, the action of love requires such labor.  It requires intentional and mindful consideration and planning.  There are people in our world who don’t face half of the challenges that you do – who could pull compassion and kindness from their tool kit at any time – who can’t manage to show their relationships the care that you work to show your entire world every day.
 
This is so very important, Danny.
 
Because I assure you that when we first heard the word “Autism” coming up in conversation and we began to worry about what all those scales and spectrums could mean, your future SOL scores or ability to memorize significant European explorers meant absolutely nothing to us.
 
We wanted to believe that you would find the words to tell us about the beautiful world you see.
We wanted to believe that you would make friends and wake up every morning excited for a new day.
We wanted to believe that you would understand the depth of the love all around you.
We wanted to believe that you would be happy.
 
 
 And today, amidst the set backs and the confusion of this exhausting year, we can believe all of those things.
 
 
When I left my finance job 3 years ago, I thought I would go to a classroom every day until I retired.  I wanted to be a part of the system that had saved our family; I wanted to give back to a special education program that found my child in the wilderness of his behaviors and drew me the map to reach him.  And…I’ve loved being in the classroom.  More than anything I’ve ever done.
 
My plan was to assist for as many years as it took to stabilize our family and get my licensure to become a Special Education teacher.
 
That was my plan.
 
But at the very root of that plan was a prayer – a prayer that if and when our circumstances required an adjustment I would have the eyes to see it.  That I would have the “wisdom to know the difference”, and not remain complacent simply because I couldn’t bear another change.
 
So after a year of considering every fork in the road, after months of conversations and contemplation, and after endless hours of “what if”s and “why not”s, your Daddy and I have decided that I will not return to school in the fall.
 
Ezra will stay enrolled where he attended preschool this year; a program that has brought him so far since his qualification for special education in January, the superlative his teachers awarded him was “most talkative”.
 
You will move to a school in the town where we live that just happens to be where many of your best friends in the world attend; a school right down the road from where your Daddy teaches, that starts you on the path to end up at his High School in an impossibly short amount of time.
 
I will invest in the education of my two incredible, unique children in a way I’ve never believed was possible.  I will volunteer, get involved, and use everything I’ve learned over the last 3 years to try and steer your education away from the storms that have threatened to tear you apart over the last year.
 
We will all sleep more, live slower and, hopefully, find that more often than not we are thriving in our days rather than simply surviving them.Because we have learned that the difference between something that we cannot change and something that we can isn’t always some tangible resource or imaginary benchmark. 

This time it isn’t even wisdom.  It’s courage.
 
https://www.instagram.com/p/BixS0X8DY5a/?taken-by=beccabreedpepper
Sketch by my sweet friend Becca.  You can find more of her work here.
 
May God grant us the courage we need to turn these years into a new foundation for our family.  May we never forget that, as overwhelming as it may feel, this is simply the next thing – not the last thing.  May we trust in the knowledge that our God has a plan, and that we have arrived at this moment only by walking through the doors that He has opened for us.
 
You have almost survived the year, my sweet boy.  You have been the brave one.

 
 

We’ll take it from here.

Love,

Mommy

How You’ll Know Him

On By skrosenfeld1 Comment
Dear Danny,

It was a bright, warm August day – much like this one – 6 years ago when we said goodbye to your Papa.

August 2, 2011.
You do not remember this day for what it was, if you remember it at all.  You were a month away from turning 2, a wild cacophony of sounds and behaviors, and were completely incapable of processing either his illness or his ultimate death.

Unlike most of what you don’t remember about your Papa, I am grateful that those last days are not held in your mind.  He was too young to be leaving us.  Your Daddy was too young to have to learn to live without his Father.  You were too young to know that it was Tuesday, let alone that it was the day our lives were changed forever by a phone call early in the morning on a hot summer day.

2010:  Dinner with your Grandpa during a snowstorm.
Your Papa was an absolute mountain of a man, both in physical presence and in spirit.  His heart was so generous that you could feel as though you had known him your entire life from one conversation.  He was so cool that you could know him your entire life and still be floored by a new story from his spectacular collection of experiences.  He was always, always working – so stubborn was his determination to provide and protect.

He would never allow the “now” to become the “forever”.  He was a man who took a tremendous risk to change his entire life for love of his children and never looked back.  A man who never saw a single obstacle as unmovable; who never saw a hill he wasn’t willing to climb.  Even to the very end.

He went down swinging, but cancer is not a fair fight.

2009:  You and you Grandpa at your Baptism
His burdens were large enough to cast a shadow, but his love was strong enough to keep everyone around him in the light.   In many ways, we still feel that light all around us.

And though I know you were not even 2 years old when that light burned out on Earth…I’ve always hoped that you could feel it, too.

2013:  you and your Dad at Riverbend Park.
One of your favorite things to tell people about your Daddy is that he is a teacher.  You love to visit his school and visit with his students.  And, now that you have your own awesome music teacher at school for perspective, you are more aware than ever about how your Dad spends his days.   You will always remember this about him, I am absolutely certain.

What you would not remember, though, is the winding and difficult path that your Dad took to this career.   His time in school was difficult and indecisive as he was derailed from his dream to become a music teacher.  He had been so sure of his calling when he started school that his decision to veer away from education left him with a profound sense of loss.  When he graduated with his music degree, he continued to work in office jobs that did not suit him because those jobs were how the bills got paid.  He would work all day at a desk and then escape to other jobs at night, accompanying and directing.   Right before you were born, he saw an opportunity to make more money (that we desperately needed) in a job he was certain to despise and he took it.  A year later when that awful job disappeared from under us, he became a Stay-At-Home-Dad overnight; a role that he was in no way prepared to step into.  We survived by his continuing to work – taking you with him to choir practices and camps and meetings.  He survived by going back to school – writing papers during nap time, attending online classes well into the evenings after you and I had gone to bed.

It was another bright summer day not long before your Grandpa died when we found out your Dad had landed a full time teaching job – his first dream, his calling, and what will become his life’s work.

And when I think about that story, and any number of the hundreds of stories that I could tell you about your Daddy, the unforgettable man that was your Grandpa doesn’t seem so far away.
2015:  You and “Papa Bear”, reading.
You see Danny, I spent a lot of time trying to keep Papa’s memory alive in your heart and mind.  I dismissed the Psychologist that told me that memories follow the development of language, and that kids don’t usually start to really hold long term memories until they have words to put them in perspective.  I ignored friends and family who gently reminded me that you were 23 months old when he died and, even without other challenges, that’s awfully young.  I got out the pictures every night, told you stories and played videos.  You slept with the bear made from one of Papa’s favorite shirts.

And 6 years later I can finally admit it.  I know you don’t remember him.

But, I have made my peace with that because of the man I know you will never forget.

2011: you and your Dad
Your Daddy is an absolute mountain of a man, forged from day one in generosity and strength by the mountain before him.   He is so loving that he can make any one of his students feel like the only one in the room; he is so strong that he can hold them all up at once to be the best they can be.  He is always, always working; so stubborn is his determination to provide and to protect.  He is never satisfied until he has given his best to everyone who needs it.

He has never allowed your “now” to be your “forever”, this man who took a leap of faith to change his life for love of his children – for love of you.

Your Daddy carries the best of your Papa with him in every moment of every day.

1978:  Your Dad and your Grandpa.
Maybe that is why now, 6 years later, even without Papa here by your side…I see him in you.

I see his mannerisms in the way you fold your hands in your lap when you are listening.  I see his fire in your eyes when you are frustrated that someone doesn’t understand you, or wants you to calm down before you have had a chance enough to be mad.  I see his passion in the way that you instantly connect to music and adapt to technology.  I hear his joy in your voice, in the way that you talk with so much excitement it is almost laughter.

I see his spirit in the methodical, literal way that you approach your relationship with the church and with your God.  In the way you make your way to the soundboard every Sunday, climbing up into the booth like Zacchaeus, trying to catch a glimpse of Jesus.

We miss him every day, Danny.  And when I catch these flashes of your Grandpa in you, I realize that it has never really mattered if you remember everything about him or nothing at all.
Our faith tells us that we can have hope.  Because you know Him, our holy and loving Father, I know that you will see your Papa again someday.
But Danny, because you know your Father, you will have known your Papa all along.