Day #215 – Real Days

Then…there are days that are just real.

Tucker had a friend stay overnight…they stayed up late and rose early (but still had at least 7 hours of sleep).  I knew it would most likely be a rough afternoon.

This morning Estelle said to me, “Mom, I’ve been reading your blog.” I asked her which entries she had read and what she thought.

To which she replied,

“Well, I read the one a couple days ago about how you know you have to do things for me.  About how you feel sad because I don’t always get to do things.”

I told her that everything I wrote was true.  I choked up…was blinking fast and hard.  She put her head on my shoulder and through my forming tears I said, “It’s all true.  Every bit of it and it weighs so very heavy on my heart.”

To which she replied,

“I love my life.  Sure, I wish I got to do more fun things.  But I know I’m so loved and you are always showing me and telling me how much you care about me.  You need to not worry about it.  You didn’t want Tucker to have autism.  I’m sure you wish he didn’t have it, but he does – and that’s just the way it is.”

Open the flood gates.

Then, the afternoon came.  Tucker’s friend went home and I had the distinct realization that he was going to need a nap.  I was trying, really hard, to let him come to that conclusion.  Then it began – everything brought him to tears, the bright red eyebrows, the ‘I’m not tired,’ the confusion – it’s when the spectrum is the most obvious.  It’s when I’m taken to a different time.

I finally told him he had to take a nap before he could do anything else.  He stomped down to his room.  I waited 15 minutes to let him cool off.  When I went to check on him he asked the question, “Doesn’t anyone else have to take a nap?  They slept the same amount as me.”

I laid next to him and for the first time (about this subject), told him the truth.  No one else was taking a nap.  I would like too – but it wasn’t in the plan for me.  He began tossing and turning – it reminded me of when he was a little boy and I would have to lay on him.  So – I reverted.  I tucked the blankets in tight and I half-way laid on him.  He was asleep in four minutes.

Then, he slept for four hours.

One of the reasons this blog is late is because we have been volunteering at our church all day long.  So, around 7:30 I decided to come home and check on him. He was awake and when he saw me he wrapped me in his arms.  I told him I thought he grew during his nap.  He was also hungry…so we decided to go back into town so he could eat at church. Then…this conversation happened…

‘Mom, why did I have to take a nap and no one else did?’
‘Do you feel better?’ (that’s me trying to avert the answer)
“Yes, but that’s not the point?’ (plan failed)  “Why?”
“Well Tucker – your brain just needs more rest.”
“It’s not fair that I have this.”
“I know it’s not.”
“I sometimes hate it.”
“Me too. Tucker, I’m sorry that days like today happen.  I understand why it’s frustrating. Actually, I don’t.  I’m sorry I said that.  I don’t understand.  I’m not like you – but I want you to know that I recognize it feels unfair.”
“It is unfair.  I wish my brain would just work right all of the time.”

Silence…finally I said…

“Tucker, your brain just needs more rest.  It needs to have some ‘shut down’ time so it’s easier for you to make sense of the world.  It’s okay.  You know when I get tired I will cry at just about anything.”

He laughed…and  agreed…and grabbed my hand.

“I love you, mom.  I love you a lot.”
“I love you, Tucker.  I love you a lot.”

Then, we rode the rest of the way in silence. Just holding on to each other…because sometimes, there are just no words.

photo (24)

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11 thoughts on “Day #215 – Real Days

  1. Dear 366 days of autism
    I found your page 2 days ago i like it so much. Is there someway i can read from the beginning of the posts.i hope u understand what i mean. I am not techi and couldn’t figure out the internet well. I do not know either why i’d like to do that, you know read it like a book…
    All i know is that it’s been 4 mos since my grandson was assessed and was told he had symptoms of autism. The doctor’s recommendation was for him to undergo a social skill competence program.he has gone to 8th sessions of OT already but i just have this feeling we are doing it all wrong…

    Like

  2. Pingback: Day #294 – I Don’t Know | 366 Days of Autism

  3. Pingback: Day #327 – Indexing | 366 Days of Autism

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