Thursday, June 04, 2009


"You sure have your hands full"
"You are a saint"
"It takes a very special person..."
"I'm glad there's people like you, I couldn't do it"
"You must have a great deal of patience"

If you have a child with special needs- especially if you have more than one- you probably get these statements from well-meaning strangers pretty much every time you turn around. You go to the grocery store, park, doctor's office, restaurant, mall, or school and you hear them over and over again.

"You sure have your hands full" A smile... "Yes, but in a good way"
"You are a saint" A smile... "No, but I serve a wonderful God."
"It takes a very special person..." A smile... "God can use all kinds!"
"I'm glad there's people like you, I couldn't do it" A smile... "You'll never know unless you try!"
"You must have a great deal of patience" A smile... no reply to that one. PATIENCE? REALLY?

As I drove an hour this afternoon to get to the ophthalmologist's office I was replaying the morning in my mind. Emma and Micah were in the car with me and my mom had come to watch Brianna and Kristopher so that they didn't have to join the parade at the doctor's office. I was considering the fact that Emma busted her lip this morning, just as I was getting the kids' lunches on the table.

She had one of Brianna's "loveys" in her mouth-- AGAIN-- and was in the playroom when Kristopher made me aware of the fact. The other 3 kids made their way to the table knowing that food was coming but Emma usually has to be sought after unless she's in the room and sees that there's food. I went out to her, told her to take it out of her mouth, told her firmly that she's not allowed to chew on those (or anything else for that matter...) and walked back out of the room to put the other kids in their seats, letting her 'discipline' sink in a moment before being 'rewarded' by being picked up and by food- her favorite thing in the world.

As I walked into the kitchen she started to cry. Her pitiful "life's got me wrong" cry that says she knows she's in trouble and doesn't like it. I ignored her for a minute as I finished what I was doing then walked the 4 steps to where I could see her. I looked at her and said "that's enough, you're ok" and she stopped crying, smiled her little crooked smile, and I went out to get her, tear streaked cheeks and all. Then I noticed it. The busted lip.

My patience was through-- I'd used it up in telling her 20x to take the loveys out of her mouth. I'd used it up further listening to her scream for being disciplined. And then I realized how much of my days I spend asking for forgiveness for being impatient... for not empathizing... for not doing what should have been done... And I hadn't responded appropriately to her- noting that she had been hurt and was wanting to be consoled.

I glanced back at Emma, sitting in the middle seat of the van within my view, happily playing with her shoes and looking out the window as we drove. And I once again recognized that I don't have that "great deal of patience" that everyone says that I must have.

Fast forward an hour and a half and I was getting back in the car after a LONG visit at the doctor's office. Both kids were seeing the eye doctor and after his initial look at their eyes, the doctor put numbing drops and then dilating drops in their eyes. Emma, who generally screams when touched my anyone she sees as being remotely doctor-like, did pretty well. She wasn't happy, but she didn't break down. Micah, however, screamed. And screamed. And screamed. The doctor said to me at the time of the drops that "kids with Downs sometimes have more disorientation from these drops so be aware that they may be uncomfortable from that."

And as I got back in the car and pulled out of my parking spot with 2 new scripts for stronger lenses and a still-screaming 2 year old, the later words of the opthalmologist rang through my head... "remember I told you kids with Down syndrome tend to react more to these drops? Well, a rare side effect is a temporary psychosis, and I believe that is more likely what your son is experiencing."

"He'll fall asleep in the car, he'll fall asleep, any minute, he's going to go to sleep." But he didn't. Not in 45 minutes of the hour drive anyway. Not for the 10 minutes we stopped to drop something off (side note: Thank you Teresa for being willing to come outside in the rain, and thanks for the sleepers and t-shirt too! We are blessed to have great friends and I hope you enjoy the book!). He fell asleep 15 minutes from home and even still he whined and cried in and out of his sleepy daze for that 15 minutes.

When I say Micah cried or screamed, I don't mean a calm nice sweet 2 yr old cry. (Is there one of those??) I mean an "I want to climb out of my skin, I'm so irritable and cannot figure out what I need or want and I'm going to scream until I have no voice left" kind of scream. It was awful. For him. For me.

And as I drove I thought- Wow, even when Emma broke down upon reentering the exam room, she was easily consoled without having to be taken from her wheelchair after just 5 or 10 minutes (a rare thing- she's usually full-out tantrum and takes 20 minutes to calm after a doctor has touched her). And I pictured someone looking in to that room... though the door was closed so they couldn't see in... and seeing Micah on my hip thrashing and screaming and just completely out of sorts, and Emma next to me in her wheelchair crying her eyes out at the cruelty of the world for making her go back into this room. (Which, by the way, has concrete floors and a high concrete ceiling-- great for aesthetics, as well as sound amplification.) And I pictured this onlooker thinking that this is what it's like to have children with special needs. You sure have your hands full. You are a saint. It takes a very special person... I'm glad there's people like you, I couldn't do it. You must have a great deal of patience.

And I realized in a new way today that patience is not something that you have. It's something that you ask for. Over, and over, and over, and over again. Just like forgiveness... for having lost that patience.

We're home now, Micah went to bed and was ok when we woke him up a little over 2 hours later and he ate his dinner and is now playing. So much for bed time tonight... I'm just glad he's back to himself.


  1. This is a great post M. Very well written and an excellent observation. Thanks for sharing it with all of us!

  2. I too enjoyed this post. Sounds like you got a LOT done after your morning productivity!

  3. Great post!! I have many days similar to yours.... and oh so thankful for a Forgiving God!!

  4. Meredith, your post brought baCK memories. The first time we took our son with DS to the opthalmologist, he completely freaked out when they dilated his pupils. The dr. couldn't even examine him. We had to take home the drops and practice for two weeks, then go back. Then he was fine. I think maybe he freaked out because he thought he was going blind, when the drops blurred his vision. I'd say it could have been psychosis, but his reaction got a little easier each time we practiced. We also reassured him that though it would be hard to see, it would get better.

    And it has.

  5. I've heard kids with DS can react to the eye drops. When we took my brother (w/ DS) to the eye doc, he didn't even have to dilate his eyes to get the prescription filled. He just used the little light thing and got the right prescription. I wasn't about to let him use the eye drops incase Osiyyah would react to them.

    Glad Micah is doing better now!


  6. I always laugh when people say "You must have a lot of patience". NOPE. But God does!
    Though I do remember my mom always saying "Don't pray for patience because the only way for God to show He's answered that prayer is to test your patience." LOL
    Of course, she also knew/knows that patience is not my forte!

    Glad you got through the eye doctor visit though. Poor Micah! I've never heard of kids doing that. Bless his heart!

  7. Excellent post!

    Do you also get "I don't know how you cope, I couldn't do it?"

    The patience one is the hardest for me. If friends are with me now when someone comes up and tells me that, they will jump right in and shout "no she isn't!" loudly enough to embarrass all of us!

    As another friend of mine says - don't put me on a pedestal I'm afraid of heights and it hurts more when I fall.