Friday, February 3, 2012


We were in the school cafeteria the other evening, munching on pizza and veggies while talking with other parents of kids with special needs. I was impressed with the school for arranging the event. They even had paraprofessionals there to help the kiddos with dinner and crafts so the parents could talk.

Ethan doesn't see some of these kids as often anymore. He doesn't spend as much time with the special ed. teacher either, which is probably why he announced "I want to eat pizza with Mrs. Vincenti too!" as soon as we walked in. Mrs. V. is, of course, his current pre-K teacher.

After we ate, Dianne, the special ed. teacher, and I were talking while Dan chatted with one of the other dads. She started up with something she'd alluded to a few months ago.

"I don't know," she said, shaking her head and smiling. "I don't know what we're going to do about Ethan. I may have to cut him loose soon."

What does that mean? I wanted to ask her.

"This is off the record," she said, "but have you ever considered putting him into a preschool next year several days a week with typical kids and just seeing what happens?"

I honestly did not know what to say to that. Why is she saying this? I wondered, my heart pounding in a good kind of way.

"Look at him go," she said, watching Ethan and another boy. "Look at him play. It's just amazing."

Ethan and the other boy had invented a fun game the involved dropping a half-deflated beach ball and laughing hysterically at the sound it made when it hit the floor. I could have watched and listened all night.

Then she was off talking with other parents, and I was left to think. I wondered how my mind could be swirling with so many emotions at once --

Joy that she would think Ethan capable of even more than he is doing right now, when he's already come so far.

Confusion about just what she was saying. What does it mean to "turn him loose?" Doesn't he still need services, like speech and OT? How could he go anywhere else and lose those services?

with myself, for so often seeing his deficits, for focusing on his lack of real play and trouble with social interactions, when others are marveling at his strengths.

, that nagging feeling once again because who are we that Ethan should come so far when other kids far older than him still struggle so much?

And hope. I can't forget hope. With the teacher's words I felt it swirl around me, the possibility of all the things I'd thought we might have to cross off the list...that list you don't know you have in your head about what your child might do or be, until someone tells you your child has a disability.

I thought about a scene in a book I've read many times, one of the Chronicles of Narnia, The Magician's Nephew. Throughout the story a young boy, Digory, wants nothing more than to find something to make his deathly sick mother well. And finally as the story draws to a close the great lion, Aslan, gives him an apple off a tree from another world, an apple he thinks or feels or hopes can save his mother if he can just feed it to her. And once he slices it up and she eats and falls into a deep, peaceful sleep:

For the rest of the day, whenever he looked at the things about him, and saw how ordinary and unmagical they were, he hardly dared to hope, but when he remembered the face of Aslan he did hope.

Sometimes I think, what do I want more than anything? For Ethan to be completely "cured?" For his sake I suppose yes, but I must remember:

Does Ethan being "healed" have anything to do with our love for him? Or his value here on this earth?
Does Ethan being healed or not being healed have anything to do with God's love for him?

There is always, always, always a reason to hope. I just need to remember what (or more importantly why I'm hoping). It's not just about what Ethan can do or can't do, or what the school says, or whether he someday accomplishes what we might call "The American Dream."

My hope can't be in these things. My hope has to be anchored in Him. It's okay to float sometimes. I just have to know what I'm tethered to. And so right now I am soaring just a little bit. And then walking on to whatever this road has for us next.

“Most people, if they had really learned to look into their own hearts, would know that they do want, and want acutely, something that cannot be had in this world. There are all sorts of things in this world that offer to give it to you, but they never quite keep their promise.

“At present we are on the outside… the wrong side of the door. We discern the freshness and purity of morning, but they do not make us fresh and pure. We cannot mingle with the pleasures we see. But all the pages of the New Testament are rustling with the rumor that it will not always be so. Someday, God willing, we shall get “in”… We will put on glory… that greater glory of which Nature is only the first sketch. - C.S. Lewis


Floortime Lite Mama said...

this is really really lovely to read
how wonderful that Ethan is doing well
don't feel guilty ( and I am a mother with an older child who has many issues but is still perfect in my eyes ) - enjoy it !!

rhemashope said...

this verse showed up several times for me today:
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." Romans 15:13