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.Continue reading
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
If you’re even luckier
I was taught
That when a child
Parents grieve over the loss
Of some preconceived
Version of their child
I was satisfied by this explanation
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.
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.
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.
Today we celebrate Benjamin. Somehow 20 years have slipped by. I swear his birthday has hit me harder than my own post 5 – 0 birthdays.
Since he was diagnosed at four and a half months old, we’ve lived every day conscious of, and in awe of his strength and fragility. We know his life expectancy is uncertain. We also know Benjamin is happy, has a strong will to survive, and that we have very little control over the matter.
So we celebrate Benjamin. Every. Day. By sharing the books and music and TV shows he loves. By looking into his eyes and sharing his laughter. Today we will also celebrate with lots of cake and presents. Next month we’ll celebrate again with family. I’ve decided there’s no reason not to celebrate at every possible opportunity.
Over the past few months, I’ve watched an unsettling number of parents in our lissencephaly world bury their children. Their strength and grief are incredible to witness. So for them, I celebrate Benjamin because he’s with me.
Enjoy some pictures of Benjamin’s life.
Happy 20th birthday my beautiful, beautiful boy. Mama loves you!
Many of you know that I’ve been working on a memoir for years. Today, I’m honored to have an essay up on The Rumpus that speaks to the heart and soul of the memoir. Please take a look at Death, Doorways, and Dance and feel free to share.
You were born four weeks early
On your uncle’s birthday
We hadn’t even picked a name for you
I wasn’t ready
I was so ready to hold you
Grandma came to the hospital
To watch you enter the world
The picture of the two of you together
Still makes me happy
Life seemed simple
When I stared at your perfect face
The name Sebastian
Begged to be chosen
Such a big name
For a tiny boy
The nurse said
Sebastian sounds like the name of someone bound to do important things
On the first day of your life
As with every day prior to your arrival
My biggest wish for you
Because your three year old brother already had so many medical complications
I didn’t have specific dreams for you
Benjamin taught me
How little I could control
On and off as you grew
Small things worried me
You didn’t always react when I called you
Perhaps I chose the wrong name
When the doctor diagnosed you with autism
I feared for your future
I wished I had wished for more than good health
So I started wishing
For you to speak
You did all those things
Not when or how I wanted
But you did
Today you are 16 years old
You wished for three dvd’s
To see a movie with a friend
And a trip to your favorite diner for a meal and a slice of apple pie
Pretty simple list
Yesterday I watched your teammates gather to sing happy birthday to you
Your smile assured me
That moment was more important to you
Than the presents
That moment was important to me too
Autism hasn’t and won’t
Keep you from finding your place in this world
The name Sebastian suits you very well
You have already done important things
I look forward to watching all you continue to do