Brotherly Love

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Benjamin’s been fighting a cold for the past three weeks. Last night he was crying, loudly. Sebastian closed his door so he could complete his homework. For years, Sebastian would fall apart when Benjamin cried. He would yell at me, “Go take care of him.” He keep saying the noise was too much for him to handle. Three years ago, when Benjamin had his hip surgery, I bought Sebastian a pair of Peltor ear muffs. I always do my best to make Benjamin happy, but I’m not a miracle worker. I knew there would be a lot of crying after hip surgery. And there was. I will never forget Sebastian sitting in the car, out in the garage, wearing his ear muffs. Continue reading

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Happy Birthday Benjamin

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As soon as I opened Benjamin’s door this morning, I could hear him breathing. I can’t believe this day has come. I thought he was snoring, but his eyes were open. I kissed his cheek a few times and wished him a Happy 18th Birthday. He looked at me and smiled, but his eyes looked unusual. “Are you OK, Ben? Sorry you’re congested. Do you have a headache like me?” Wait, are you looking up towards your stuffed animals or are you going to have a seizure? How is possible that his eyes look tighter, not quite able to see. “Are you with me Ben?”

I put on his favorite morning TV show, Here Come the Teletubbies, and kissed his cheek again. “Stay with me Ben. Want me to lie down next to you?” He gave me another halfhearted smile. Checking his eyes every few minutes, I wondered if the morning would go as planned, or if John and I would need to administer Benjamin’s emergency rectal Valium.

As the minutes passed, I thought about the guardianship papers I mailed to the lawyer. It makes no sense that this process had to wait until now, leaving us in limbo, but that’s the way it is in New Jersey.

If Benjamin had an epileptic crisis right now and we ended up in the hospital, would the doctors have enough common sense to listen to me, even though Benjamin is an adult? I am his mother but not his legal guardian. Surely, they would take one look at him and allow me to be his voice, right? Then, I thought of the time I was in the emergency room and the nurses wouldn’t allow John to stay with me. I thought of the perplexing things doctors have said to me over the last 18 years:

“The brain is like a cake. It might look good on the outside, but how does it taste? You don’t know until you cut it open and taste it.”

“When Benjamin is older and you show him an apple, will he be able to tell you it’s an apple? I don’t know. Benjamin is Benjamin. Just love him.”

“We could put him on Depakote, but it might kill him.”

“Are you and your husband…related?”

“Does Benjamin live at home…with you?

I thought about where I was 18 years ago. Benjamin was born shortly after midnight on January 23, 1999 and he was perfect.

Five months, a CAT scan, an MRI, blood work, and two EEG’s later he was diagnosed with lissencephaly, and spastic quad cerebral palsy. Three months after that, he was diagnosed with Infantile Spasms, a devastating and hard to manage form of epilepsy. As John and I watched the first and second medication trials fail to control hundreds of seizures a day, we wondered if, on Benjamin’s first birthday, we’d gather around a cake, or a grave.

After a nervous start, today went as planned. John and I stopped by Benjamin’s school to celebrate with his classmates. A staff member stopped us in the hall and said, “Happy Birthday. It’s a milestone for you too.”

Yes, it is.

Happy Birthday Benjamin. Thank you for your love, smiles, and laughter. Thank you for your will to live.

Thank you for teaching us what perfect really is.

Dear Benjamin

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Dear Benjamin,

Today Daddy and I will pick you up early from school and take you to a neurology appointment. We need the doctor to sign some legal papers. I can’t believe that in just 18 days you will turn 18 years old. I’m not sure yet how we will celebrate a birthday that had never been guaranteed. Do you know how amazing you are?

You were about five months old when the doctor confirmed you had lissencephaly. We read that the average life expectancy for a child with this brain malformation was two years. When you were 18 months old, we traveled to Chicago to see another doctor who said you had a 50% chance of living to 10 years old. Those numbers scared me. To this day, I hold my breath when I open your door in the morning and I am grateful when I hear you breathing. There are few things better in this world than the smile you give me every day before you’ve even opened your eyes. Continue reading

Halloween

We love Halloween. Benjamin has been known to sport some pretty fabulous costumes.

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This year we kept it simple because when I asked Benjamin if he wanted to be Harry Potter, he was all smiles and laughter and because John didn’t have a minute to spare to do his Halloween magic.

Where I live, families gather at a local park and trick or treat on a parade route. My house happens to be one of the first stops. I am not exaggerating when I say a tsunami of children flood the streets. It is the most awesome Halloween experience, although it turns the whole giving of candy routine into an Olympic sport. Benjamin and I stood in the driveway with massive amounts of goodies waiting for the parade to begin.

As each wave of princesses, goblins, zombies, superheroes, and inflated dinosaurs approached, Benjamin laughed and vocalized, “Ahhhhh.” Parents talked to him about his costume and we had a good laugh with one family who showed up with Voldermort. Continue reading

We’re All Different

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I was going to share some good news with you the other day, but I was consumed with the debate between All Lives Matter and Black Lives Matter after the deaths of Philando Castile, and Alton Sterling. It’s times like this I’m a little relieved that my boys are mostly oblivious to anything outside their little world. But I have a responsibility to teach them how to interact, communicate, and treat others with respect.

It’s not easy to talk about race, especially with children who need everything spelled out in the simplest form.

I’m off the hook with Benjamin. He does not have the capacity to hate, or discriminate against others. I’ve seen him wake up from a 10 1/2 hour surgery and smile at the doctor. Simple as he is, he is not without opinions. He complains in his own way about TV shows and the food I serve him. He was also known, as a baby, to throw up as soon as his physical therapist touched him. He truly loved her (smiled when we were just socializing)….just not what she stood for. So, he’s always been way ahead of the game.

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A First Step

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Last night I went to a poetry reading. The recent massacre in Orlando served as a prompt for one of the author’s (Edwin Romond) poems. Although I don’t remember his exact words, I can’t release the message.

“There’s no value in teaching reading and arithmetic if it doesn’t serve to also teach humanity.”

Before the poetry reading I found this article in The Washington Post by Suzanne Nelson, Books to help teach kids to be inclusive and compassionate. The author begins with a story about a regretful experience she had when she was 12. She is haunted by the fact that she wasn’t brave or compassionate enough to attend a birthday party for a special needs student she had been paired with at school for peer tutoring. The author knows she wasn’t supported by the adults at school well enough to effectively communicate and bond with her hearing impaired peer, but she still blames herself. On the day of the party she went to the peer’s home, dropped off a gift and apologized for her inability to stay. The peer’s mother revealed, “No one is coming to the party.”

I’m a huge fan of using books to teach real life lessons and Ms. Nelson also realizes that it’s only the first step. As she says, “Contact and communication must¬†extend beyond classrooms to foster understanding and genuine, long-lasting connections and friendships.”

As the mother of a 13-year-old boy on the autistic spectrum I am spending more and more time thinking about this. Sebastian has finally acquired enough social skills and motivation to reach out to peers beyond the confines of his self-contained classmates. In school the students are truly kind and Sebastian has felt the welcoming arms of inclusion in his non-academic classes and in after school sports teams. He’s collected teammate’s phone numbers and has, to some extent, been successful at arranging the occasional weekend movie gathering. He even got invited to a birthday party this year. I know Sebastian’s teachers and therapists have been instrumental in supporting him and the other students to make these connections. For that I will always be grateful.

While this all sounds wonderful, the challenges are still real because every middle school child is trying to figure out who they are, and where they belong. As parents we both guide and have to allow our children to be independent. We can’t force relationships. Sebastian has a lot to learn about the differences between an acquaintance and a friend. I can’t help but feel how wide the gap is between him and all the well-meaning children whose numbers sit in Sebastian’s contacts- because his phone never rings and he’s beginning to worry about not having friends.

I’m just trying to figure out how to help Sebastian stay motivated, and how to foster inclusion, compassion, and humanity.¬† So that diversity does not create fear, hatred, and massacre.

This is my first step. What will yours be?

 

 

photo credit: the great solar flare of peace : rainbow warrior flag, harvey milk plaza, san francisco (2014) via photopin (license)

A Controversial Treatment

 

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Hardware in Benjamin’s leg to repair a fracture. Also, shows his dislocating hip prior to surgery.

 

Over the weekend, I read an article in the NY Times titled Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth? I remember the story of “Ashley X” in 2006 whose parents chose to stunt her growth through surgery (think hysterectomy, breast nodule removal) and hormone therapy. This intervention is as controversial now as it was then. Comments range from (I’ll paraphrase) God bless the families faced with such hardships to Therapies that mutilate children and strip the rights and voices of the differently abled are 100% unacceptable. It’s a heated debate and parents are in the hot seat.

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