A Shower Chair Story

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No ordinary shower chair

More than a year ago, Benjamin’s therapists filed an insurance claim for a new shower chair. Our insurance denied the claim saying that a shower chair wasn’t medically necessary. Benjamin’s pediatrician set up a peer-to-peer review with a doctor from the insurance company hoping to overturn the decision without a formal appeal.

No such luck.

According to the doctor from the insurance company, “A shower chair is a comfort and convenience item.”

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Nightlights, Electric Shavers & Breaking The Law

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Leading up to Benjamin’s 18th birthday I was preoccupied with guardianship paperwork, prep for his social security application appointment, and trying to find just the right birthday gift.

Benjamin loves books, music, and Teletubbies DVD’s but I wanted to give him something special for his milestone birthday. I was stumped and tried hard to avoid making comparisons with typical 18-year-olds. I was grateful that Benjamin was going to see his 18th birthday and he’s the purest human being I’ve ever had the good fortune to know. But he will always be my greatest responsibility. My heartbreak. The reason I live fully and mourn fully, every single day. He will never be independent. Never go on to college. Fall in love. Grace me with grandchildren. Never give me the opportunity to pass on the traditions and lessons my mother taught me. This melancholy song has played on and off in my mind since Benjamin was an infant. I heard it every time I strolled him through a playground, at every family gathering as we watched our nieces and nephews mature, at reunions where our friends’ children played together, and especially at every major school transition meeting. I allowed this song to play and then I changed the record.

Pushing aside comparisons of teenagers who can drive, go out on dates, and hang out with friends in movie theaters or restaurants, I focused on what makes Benjamin happy. A few years ago, John and I bought a Cloud b ladybug nightlight that projects stars on the ceiling. Benjamin loved it so much it instantly became a part of his nighttime routine. If he wakes in the middle of the night, all we have to do is put on the nightlight and his Tubbies music and he usually falls back to sleep on his own. Thrilled to have found something both loved and useful, we later gave Benjamin a star projecting turtle. Currently, he prefers a starfish that casts an underwater illusion. With Benjamin’s love of nightlights in mind, for his 18th birthday, we bought him a glowing Moon In My Room toy. I was certain Benjamin would love it even if I didn’t consider it special enough. Spending $15 for a toy rated for children six years old and older left me singing the mommy blues.

John likes to point out Benjamin’s ever so thin but obvious mustache so we went on the hunt for an electric shaver which filled my need to get an age appropriate gift, and marked a typical right of passage. When John wrapped the two gifts I pushed their dissonance aside. I also buried  my feelings about our impending guardianship hearing, and the legal responsibility to register Benjamin with the Selective Service System.

At first, I dismissed the task because the website says, “Disabled men who live at home must register with Selective Service if they can reasonably leave their homes and move about independently.”

Benjamin can’t reasonable leave home and move about independently, but then it says, “These men with disabilities that would disqualify them from military service still must register with Selective Service. Selective Service does not presently have authority to classify men, so even men with obvious handicaps must register, and if needed, classifications would be determined later.”

The contradiction between these two statements irritated me because it falls outside the realm of common sense.

Some of my friends had registered their sons, and others waited for the government to send the reminder card in the mail. I visited the registration site more than once, but I just couldn’t hit the submit button. John and I are waiting to stand before a judge and have Benjamin legally deemed incapacitated. In guardianship hearings, a judge also determines if a person with disabilities can retain their right to drive, marry, and vote. Apparently, what a judge won’t do is deem the person ineligible for a draft.

Yesterday I woke early, made myself a cup of coffee and logged on to the Selective Service site and read:

The law says men must register with Selective Service within 30 days of their 18th birthday. That means men are required to register with Selective Service sometime during the 30 days before their 18th birthday, their 18th birthday, and the following 29 days after their 18th birthday – that is a 60-day registration period.

Men who do not register with Selective Service within the 60-day window are technically in violation of the law and should register as soon as possible.

Technically, Benjamin broke the law and it’s my fault. So I cleared my mind, filled out the form, and submitted.

It irritates me that some systems are set up without considering children like Benjamin. I justify this reality by telling myself that children like Benjamin make up a small fraction of the population. Why would the government put any effort into accounting for them? After all there hasn’t been a draft since 1973. So what does it matter? Why make a mountain out of a molehill?

But then I remember people with disabilities are the largest unrecognized minority group in the US.

In whatever capacity they can rise up to, Benjamin and Sebastian have to learn to advocate for themselves. As their mother, it is my job to model effective strategies and to teach them that no matter what the rest of the world thinks, their point of view is valid and they deserve to be heard.

I’m going to keep building mountains so when my sons are ready to stand up there with me everyone will be able to hear them.

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

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