I miss when you were little 
When I could hold you in my arms
When your limbs moved more freely
When it was easier to take you out into the world

I miss the way you loved to eat
And how you were always able to spit out the peas in any meal
I miss the days when your flesh was unmarked by surgeries 

There are days I think I’m too habituated to this life
I convince myself that none of this ever hurt
Yet shockingly, I just had to stop writing to get a tissue

The sound of today’s tears hitting my shoes
Puts me right back to the day I sat in the doctor’s office
Drip
Drip
Drip
Onto his leather chair
And heard for the first time
You would never walk, talk, or use your hands

This morning I walked into your room
You were so still
I did what I have done for the past 24 years
I held my breath
Moved closer
Scrutinized the color of your face
Strained to hear your breath
Watched for movement
And exhaled when your continued life was evident

While I am more at peace with this life
And the perfect way you’ve lived in it
It is still too easy
To fret
About your place in the world
If Daddy and I aren’t here

You have always been my beauty boy
That has not changed
Looking into your eyes
Hearing your laugh
Has always made up for what the world lacks

When I scroll the pictures of your life
They reflect joy

Thank you for your joy

For it allows me
To live each day without weighing what is good and what is bad
It keeps me from fantasizing about some alternative life
Where you have a home, a job, a wife, and kids of your own
Where Daddy and I can retire and travel and lament about an empty nest

From time to time 
I still allow myself to grieve
For my younger self
Who languished in make believe scenarios 
Then I relish in being an experienced mom
Who knows there’s no sense encouraging those disillusions
And allowing them to taint our lives

You are you
You are more than enough
There has never been a day in the last 24 years that you were not enough

I can only hope that you know
The only gift I have ever strived to give you
Is to match the love you have given me

Happy birthday Benjabeauty

A few years ago, Sebastian told us he wanted to run in college and study education. Honestly, we hadn’t planned on college. We thought Sebastian would attend the 18-21 program at his high school. He did for one year, but then wanted to move on. We thought it would be a big jump to go directly into a matriculated college program, so we look for alternatives that would satisfy his academic and athletic goals. Using the Think College website, we looked at inclusive college programs in Division III schools. However, most schools wouldn’t consider having Sebastian on an NCAA team because the inclusive programs are non-degree programs and the NCAA requires student athletes to work towards a degree.

While I understood and respected the NCAA’s rules, I also knew they create waivers for students for a variety of reasons. I felt it was time to acknowledge that over 300 colleges in the US have students who live on campus, audit a full course load, and are welcomed to participate in every club and organization offered to all students….except for NCAA sports. That was an inequity I wasn’t willing to accept. The only way to eradicate an inequity is to find someone who is willing to listen and who is in the position to affect a positive change. Fortunately, we were able to partner with Gwynedd Mercy University in order to secure a four year NCAA waiver for Sebastian and all future Integrated Studies Students.

Today, Sebastian and I are featured in the The Philadelphia Inquirer. Many thanks to Gwynedd Mercy University and the NCAA for working with us, and reporter Susan Snyder for helping us get the word out. Now any DIII student in an inclusive college program will be eligible to compete as stipulated by the NCAA in their “Previously Approved Waivers Checklist.”

When I asked Sebastian how he felt about his role in making it easier for other students to compete for their schools he said, “I’m glad that I’m helping to change the community.”

Indeed. In my mind, there’s no better person to do it.

Sebastian,

Somehow 20 years has slipped through my grasp. Why is it I don’t recall anyone telling me that parenthood is a series of letting go?

The other day, I found a pair of your first walking shoes. I can remember holding your hands in an effort to help you balance. A grasp became a fingertip hold and then I let go when I thought you were ready and eager to step away from our connection.

In no time, you were running.

This has been a special year. Your dream of attending and running in college has come true. I know it wasn’t easy to leave home. It was hard for me too, so I welcomed those nightly phone calls. Now, I welcome the absence of them. I never doubted that you would find your balance and let me go.

This week, someone asked me what my vision was for you when you’re finished with college. First I said, “It’s an unwritten rule that parents shouldn’t think too far into the future.” Then I tried to explain that I don’t have a vision for your future. Even if I did, it would be far more inconsequential than the vision you have for yourself. Your future has absolutely nothing to do with my desires. Your future is not about me. My job as a parent has been to follow your lead, encourage your interests, and support you in whatever way I possibly can. That you have your own vision is a success story above anything I could have originally conjured up 18 plus years ago when you were first diagnosed with an autism spectrum disorder.

While it is true that I have spent your entire lifetime advocating for you in an effort to pry open the doors that were so easily closed, you have taken on every opportunity with hard work, joy and gratitude.

Keep building your visions. You’re doing a fantastic job and I am so incredibly proud of you.

I am so lucky to have a son who still hugs me tight in public and says I love you no matter who’s in earshot. I will always treasure that connection and because you have such great emotional intelligence, I know you will as well. It is a connection that space and time and even the act of letting go cannot break.

I love you and wish you the happiest of birthdays.

Mom

I just read an article where the actor Peter Krause said, “The isolation that everybody’s experiencing is unprecedented, certainly in our lifetime.” Most people would read this and shake their heads in agreement. Not me.

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If you talk to any special education lawyer or advocate, they will tell you that The Individuals with Disabilities Education Act is designed to prepare a student to graduate and move on to further education, independent living, or employment. Most families with children who have disabilities look at graduation as the time their child falls off the educational cliff.

Once a student graduates, the educational entitlements afforded by IDEA end. A student like Benjamin goes from an intensive therapeutic setting into the world of adult services with a fraction of what they’ve lived with and thrived on for their entire lives. Continue reading →

 

Benjamin was five months old
When his first therapist
Crossed our threshold

When your child has a disability
Strangers are given unusual access

If you’re lucky
These strangers become
Partners
If you’re even luckier
They become
Friends

Before Benjamin

I was taught
That when a child
Is diagnosed
Parents grieve over the loss
Of some preconceived
Version of their child

I was satisfied by this explanation

After Benjamin

This idea never felt
Quite right to me

It’s too simple Continue reading →

When this month began, my work calendar was loaded with special education conferences. As worries of the Coronavirus intensified, each organization cancelled their large gatherings and my calendar cleared. No work means no pay. I know many people in this situation. It’s stressful but as I deleted each event, money wasn’t the first thing on my mind.

This isn’t the first time I’ve lost jobs, money, or my freedom to illness. Every time Benjamin gets sick, my life goes on hold and I’m reminded that everything I thought was important-isn’t.

Benjamin’s health and life are more important than work or debt.

I am worried, but worry is not a new state of being for me. Any respiratory infection could kill Benjamin.

Although the heightened media presence of the Coronavirus has me more concerned and has placed me in a higher state of preparation, there is one thing I can not listen to anymore.

I will echo what others have been saying, but so many still haven’t taken to heart.

Continue reading →

My writing mind has been quiet for a long time. There are a good number of reasons why I have not placed myself in front of the computer every day. Part of me is hyper-focused on being in this moment. In five short months, Benjamin will graduate and he will fully transition into the world of adult disability services. I almost don’t want to attend his graduation. There’s no way I’m going to hold it together that day.

I have no idea what will come next. We’re signed up with an adult support coordination agency and I plan to lean on them heavily to steer us in the direction of continued daily, quality services.

So I will allow my mind to be quite about all the changes I’m not ready for because I don’t know how to explain it all to Benjamin. Explain that he won’t spend his days with Ms. Janet and all the lovely, young ladies in his classes who’ve fought for his attention for so many years. I don’t want to imagine him missing all the phenomenal therapists who’ve watched over him so carefully when I’m not there.

Benjamin, I am grateful that you have been so loved.

When I opened your door this morning, you were sleeping so peacefully. I put away the stuffed animal friends that surrounded you, took out your clothes, positioned your wheelchair, and set out your morning medications. You didn’t budge. I leaned in close to get a better look at your skin color and to listen and watch for your breathing.

I woke you with a whisper, “Happy Birthday Beauty Boy.”

I’ve had 21 years to love you, knowing another day was never guaranteed. Your daddy always said, “Ben’s not going anywhere.” I believe, deep in my heart, that you will be with us for a long time. But I know every parent in my lissencephaly support group wants to believe that. I’ve seen too many of them proven wrong. Their mourning is palpable.

Grandma asked me last night, “Where has the time gone?”

These past 21 years have flown, but they have been hard fought.

You are worth every ounce of fight I have ever exerted.

Actually, that’s not quite right.

You are worth so much more.

I love you.

I’ve always loved you.

Any grief I’ve had isn’t a reflection of who you are.

It’s always been based on my fear of how the world would perceive and treat you.

A fear of knowing I can’t make this world accessible enough.

But I will die trying to keep your corner of the world safe and filled with people who are willing to do the same.

Happy 21st birthday my Beauty Boy.

Thank you for being you.

 

 

 

 

The night before Sebastian’s birthday he said, “This is the last day of 16.” He was taking the time to be in the moment. He was saying goodbye and doing a fine job of making me stop to be in the moment with him – to appreciate his sentimentality, sensitivity, and gratitude for this life and this milestone.

To celebrate his 17th birthday, 25 of Sebastian’s cross country teammates came over for dinner. While Sebastian celebrated a new year, I stood in awe of his accomplishments. He recently received a driving permit. He also set a new personal record in cross country-a full minute and a half faster than last year. He’s convinced me to help him look at college programs with cross country teams. He invited his team over to celebrate his birthday, and they showed up!

It’s not that I’m surprised by this.

I appreciate it.

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When Benjamin was younger, Halloween was a very big deal. John has created many intricate wheelchair costumes. Honey, Target’s new line of wheelchair friendly costumes has nothing on you!

Benjamin’s costumes are a ton of work. They take hours and hours of shopping, planning, problem solving, and creating. As someone who has zero art talent, I am always floored by John’s creations.

It’s been a few years since John’s had the time to make an original costume, but this year Benjamin’s teacher asked us to help make his last Halloween in school special. So John spent a good 30 plus hours in the basement putting it all together.

Benjamin absolutely loves it. I know John agrees that Benjamin’s joy is worth all the effort.

Benjamin is worth every effort. I’m certain that everyone reading this will agree, but the truth is we still encounter people who don’t think the way we do.

Continue reading →