Ordinary Days

Last night was a bit rough. Elijah was up every 30 minutes, sneezing and coughing. Eventually, at about 3 am I decided to bring him into bed with us. Normally, being in mom and dad's bed is too thrilling for Elijah. He'll look at the alarm clock, his monitor, or anything that emits light and laugh. Laughing isn't really conducive to sleeping. We learned long ago that sleeping with us just didn't work and we stopped bringing him in our room. A blessing, perhaps, to have our bed to ourselves. But last night was different. Elijah snuggled in laying on top of me (just like he used to when he was a baby), wiped his slime all over me, and went to sleep. He slept until the morning and we did too.

Whenever Elijah gets all snugly, I get nostalgic. I remember in these moments that this will all be over soon. Elijah will only be this little once. Someday soon he'll be too big to lay on top of me in our bed. He'll be too big for me to cradle in my arms. He'll be too big to pick up and rock. He's already getting too big.

Perhaps this is a lesson that has come slower to me than most parents because Elijah achieves milestones later than his neuro-typical peers. Sometimes it seems like we'll be stuck in a developmental stage forever. And then everything changes and I realize that soon he'll be a full-fledged boy, and teenager, and then adult. It'll be here sooner than I realize. I'd better soak it up, take it all in, and enjoy every single moment. Milestones or not, Elijah will get older. Things will change.

Elijah's babyness is pretty much gone. He's a toddler, a little boy - there really isn't much baby left in him. And I wish I'd have enjoyed the baby-Elijah more instead of worrying so much (something I hear a lot of other special needs parents say too). But what I can do is to enjoy him NOW - exactly as he is. I can enjoy each and every ordinary day we have. Because I'm sure my parents look at me, their youngest, and think "Where did the time go?" (Thanks for everything mom and dad!).

Ellen shared the following video on her blog and I wanted to share it here too. It's author Katrina Kenison reading from her book The Gift of an Ordinary Day (now I want to read it!). No, it's not about special needs and some of the things the author says won't be relatable to all parents. But I think the lesson is the same...to enjoy every single moment. Milestones or inchstones, childhood is gone before we know it. We'd better enjoy every moment.

If you're a parent you'd better grab your tissues, because I can pretty much guarantee that your eyes will leak.




I'm going to enjoy this ordinary therapy-free day at home with our snotty-nose boy. I hope you have an ordinary day too.

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Talking to Strangers

Elijah went to Target with me yesterday...
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Me: Elijah! Get your mouth off of the cart!
Cashier: Oh, is he teething?
Me: Um, yeah, I think he might be, but I haven't seen any new teeth yet (Thinking to myself - She doesn't need to know that he drools all the time and that he always puts his mouth on the cart, does she? Because I think he really might be teething)
Me: Yeah, he's a sweetheart (Um, totally off subject, but I guess I needed to share)
Cashier: How old is he?
Me: Twenty-one months
Cashier: Oh, he seems small for his age
Me: Yeah, he is, but he's tall and skinny
Cashier: (trying to get Elijah's attention) Hi!
Cashier: Oh, he threw up on himself a little right there
Me: Oh, yes he did (And I wipe up Elijah's shirt for what seems like the millionth time today)
A little later...
Cashier: Bye! (As I move Elijah's arm to have him wave)
And a little later:
Another employee: Is he sleeping?!
Me: No
Employee: Oh, I thought he was sleeping. That would've been so cute if he was sleeping in the cart like that.
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Going out in public can be difficult sometimes when you're a parent to a child with "special" needs. For one thing, you're going to see other kids your child's age who do things that your child cannot (yet) do and at times it cuts right through to your heart. It shoves any denial you may be harboring into your face and makes you confront it. "Look Lisa!" it says, "He's delayed! Look at what that five month old is doing! Look! Look! He can't do that!" Now, most of the time this is okay and you can smile at all the babies and their amazing development. But, on your bad days, an outing can make you want to crawl into a cave and cry.

The other thing you encounter is unsolicited comments, like the ones I wrote above. The ladies I talked to today were nothing but pleasant and I enjoyed talking to them, but their comments showed me that people are starting to notice that Elijah is different from his peers - and I realize it's only going to become more obvious as time passes.

I think if I had a nickel for every time someone asked me if Elijah was sleeping, I'd have about five dollars. (Ha!) Going to a store is really overstimulating to Elijah. The florescent lights, the influx of activity, and all the people make it difficult for him to focus or see anything. Imagine looking at a busy wallpaper and trying to focus on something complex in front of it - that's kind of what it's like for Elijah. He hangs his head, he avoids eye contact...and people assume that the little man is sleeping or tired.

People also assume that Elijah is younger than he is. He looks smaller because his head is small and he doesn't interact like most twenty-one-month-old children. They assume that he's younger and don't realize that he has special needs. It's when they start asking questions that they start to wonder.

No one gives you a instruction manual on this. Sometimes telling strangers that your child has cerebral palsy is really hard, because pain is in those words. This is something I don't think the general population understands - it sometimes hurts to admit that your child has a disabiltiy -even if you've come to terms with it and even if it's obvious to those around you. You want people to notice what is awesome about your child, not the things in which our society deems as "special." Often, strangers don't get to see Elijah's smile or hear his infectious laugh and they have no idea the battle he has fought in this life thus far.

I'm learning. At times, I hear myself talk to people with ease. I explain that our little guy has cerebral palsy and I can hardly believe that I'm really saying that. I want to be able to answer any questions about our little guy with honesty, positivity, and grace. I know it's going to take practice. But sometimes I want to be just another mom out with her son on an errand. Is that too much to ask?

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