Happy Birthday Benjamin

img_1880

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

january-23

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