“He’s depressed,” I answered. “Last night, he realized all the things he’ll miss while he’s in the hospital.”
Seeing the realization dawn over Conor’s face last night during my visit was difficult for us both. I could tell by the questions he was asking that he figured out he was stuck in the hospital for a good long while.
“On Saturday, Conor will…” he asked, with his eyebrows lifted inquiringly. I shook my head. Sorry, no boat ride with Pa this weekend.
His eyes grew wider. “On July 4th, Conor will watch fireworks…” He pointed at his chest as his voice trailed off. You’ll get to see fireworks, I told him. Just not at Nanny’s house.
His hospital is downtown, so he’ll see the City’s fireworks from his window.
Then the tears filled up his eyes. “What will Conor do on July 30th?” he cried.
Sorry bud, no beach vacation this year. No train ride to see Grandma and Grandpa, no sand, sun and surf. No visit to see the cousins, who have so many toys that their house is more fun than Disneyland. No shopping at his favorite store, The Black Dog. (I swear, he has at least 10 t-shirts from this place.)
“You’ll be in the hospital for a long time, sweetie, until we can help you not have temper tantrums anymore,” I said. Christ, this is hard.
He cried harder, wiping at his eyes. “Want Conor to have medicine to not have temper tantrums,” he begged. He’s so sad.
Don’t have a tantrum, don’t have a tantrum, don’t have a tantrum, I chanted in my mind. Although, quite frankly, if not here, when? They actually want to see what he does so that they can come up with a plan to fix it.
And that’s what I have to remain focused on. Not the fun events that he’s missing, but what we’ll all gain at the end. A plan to fix it. Please, please, please let there be a plan that will fix it.
Remain focused. Be strong, I tell myself.
Still, I feel horrible. This brings a new meaning to the cliché, tough love.
“On December 24th, Conor will go to…,” he begins.
“Conor,” I replied firmly, “I’m not talking about Christmas until December 1.” OMG, Christmas, he could still be in this place on Christmas.
Deep breaths, deep breaths, focus on the goal. Focus, focus.
Conor's recently discovered R.E.M., so I thought this song was appropriate.
I'm sorry, Conor. I'm so sorry.
I'm sorry, Conor. I'm so sorry.
WOW. Perhaps I am one of the only people that can sort-of understand what you are going through. Ryan was hospitalized - but only for 3 weeks. I cried everyday x 3 weeks, and then again 2 weeks later when he had to go back. I can't imagine what I would've done if Ryan had to stay x 6 months. Alisa - I am here for you in every way. Please do not hesitate to reach out to me.
You know, I also think about Rupert Isaacson, the father of the "Horse Boy." I met him last fall at my son's hippotherapy center. His story was very empowering.
Instead of fighting the autism experience, he embraced it. He quit his job and moved to another county and did whatever he thought right to help his son - no matter how hard.
It not only helped his son, but it helped him reclaim the dreams he once let go of and thought was lost forever.
He is a writer - just like you.
Val, thank you so much for your comments. You can't imagine how much your support means to me.
I feel like we have lived, breathed, and sacrificed ourselves to the autism every day since he was diagnosed. And I am just so tired. So tired. I am tired of bowing to the altar of autism.
I'm going to look up Rupert Isaacson, to see what his experience has been.
Thanks for posting. We are on the waitlist for the NBU, and anticipating this very conversation is what I dread the most. Thank you for your honesty. I hope Conor is making good progress and that his stay goes swiftly.
Thanks, Cindy. Good luck while you wait for an opening at the NBU.
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