No Glasses and Non-Stop Lucy

Oh it's been the usual flurry of activity around here.


First Scrabble game with my daughter. I have dreamed about this day.

Did I tell you we got a composter?

We got a composter. I am a crazy composter now. Did you know you can compost match sticks? Human hair? String? Well now you do. It feeds the crazy animal in me that hates wasting anything. I swear in my former life I must have been a child of the depression (right now Erin is reading this and thinking about the fact that I have been known to save and freeze a single strawberry--for smoothies).

The big kids and I enjoyed a rare outing of just the three of us last week, as we concluded spring break (which must be the biggest misnomer in the history of ever). We explored a new playground and can I just say that taking two big kids to the park is my new version of a spa day? So relaxing (comparatively speaking).

I also got a sitter this week so I could take Leo to the opthomologist (no glasses needed--I'm a little surprised but relieved). Leo, on the other hand was bummed, and so disappointed he actually followed the doctor into his office asking, "Where are my glasses?" (Peter Parker wears glasses, you know). In spite of the crushing news that he did not need his vision corrected, Leo was his usual amazing self at the doctor (not even fussing when his eyes were dilated). When I returned home one baby was napping peacefully (cough, cough, Harry).

One, was not.

Why nap when you can eat Mommy's takeout lunch treat (thank you, Chipotle gift card). And she didn't even know she liked guacamole.

Lucy. Oh, Lucy. At some point you will read this and please know that I say this with all the love in my heart that when I put my head on my pillow at night, it's the not the waves I hear crashing (like after a day spent at the ocean)--it's the sound of your voice. The screeching, the squealing, the whining, and of course, yes, the laughter. It's you, with your unabashed loquaciousness, your 110 miles an hour way of being, it's your has-to-do-things-your-way-OR ELSE. It is your Force of Nature self, (yes, in all of its cliche glory, it fits you to a Capital T.)

But of course there is the flip side.

I was SHOCKED that she sat for a full dental cleaning last week.

She can also be incredibly agreeable and helpful. She looooves to help. "You got it!" is her response to almost every chore type of request (she loves to retrieve the broom from the mudroom, for example, or clear her dishes from the table). Recently I asked Ellie to get me the iPad from upstairs and a few minutes later, down padded Lucy, "Here you go Mommy!" she said, her face, beaming with pride. There was Ellie, a few feet away looking sheepish: "Well, she's very responsible!" she offered.

The hours between 6pm-6:30pm continue to be the most trying (dinner is over, babies are winding down by winding up, or so it seems).

Good thing I employ one of the best toddler yoga teachers around.

Bedtime does of course eventually come. Listening to Harry and Lucy chat in their cribs, as Lucy asks Harry "How old are you going to be on your birthday, Harry?" (We've been practicing this question with them for the upcoming big day). He replies, "Fwee!" And then she counts, "One, three, seben, nine, eleven, TWENTY!" 

And just like that, all the screeching and whining falls away. 

 

31 for 21: Here's the Thing

Warning: It's not all about Down syndrome around here. In fact, it's hardly about Down syndrome at all. (If anyone had told me, eight years ago, that I would someday write that as a caption for a photograph of two of my four children (Wait, WHAT?) I would not have ever believed them). This just goes to show you: You truly never know what will happen in your life.

I know you are all waiting in rapt suspense to see whether or not I will participate in  this year's "31 for 21" (blogging every day for the month of October in honor Down syndrome Awareness).

I'm torn. Part of me likes it as an exercise in writing (and sticking to something for an entire month is kind of fun). Selfishly, it's nice for me to have one good chunk of writing to look back on, since I don't post here nearly as much as I like to. But then there is the little matter of what to write? I know everyone says "you don't have to write about Down syndrome" but I do feel added pressure to somehow tie in the old extra chromosome, at least in some posts. I've written so much about Down syndrome that there is some level of performance anxiety involved now. Mostly, I don't want to repeat myself and bore you all to tears (any more than I already do-ha!).

And here's a funny thing: I started this blog in 2008 when my oldest son Leo was four, thinking I'd write mostly about Down syndrome, and that's indeed mostly what I wrote about. I started it as a way to process this Big Thing that had happened in my life and also with the hope that I would find a larger Down syndrome community beyond the one I'd found locally (which was fine, wonderful even, but for some things, more is more). I found that wonderful community, in spades.

I feel like I have beaten the Down syndrome horse. I wrote about our struggles with Leo's sleep and his behavior, about the hand wringing surrounding his school placement, about his eyes and ears and his adenoids and his teeth. I wrote about the grief surrounding his diagnosis and the eventual acceptance.

And then Leo graduated from preschool. Then kindergarten. Suddenly the language delayed little boy would Not Stop Talking.

And then his baby sister grew into a little girl.

And then two more little people came along, and then we were six. Then twin babies became toddlers. Life got even busier and more ridiculous (mostly in a good way).

And Leo still (obviously) has Down syndrome, but I think with every year that goes by, the Down syndrome has receded into something that just is. It's no longer at the forefront. All the questions are gradually being answered. Will he walk and talk? Of course.  Will he read and write? Oh yes. Will he stop running off in public places? Yes, thank goodness. Will his speech improve? Gradually, yes. Of course, knock on wood, we've been very fortunate have none of the major health problems that can be associated with Down syndrome. We've had the privilege of relative normalcy. At least, it's what's normal for us.

All of this to say, I think that mundane, not all Down syndrome, all the time can also be a contribution in this whole "31 for 21." Because to this day I remember the feeling of waking up in the mornings that followed Leo's birth, rolling over and looking at the light coming through the window of our little garden apartment in Park Slope Brooklyn, thinking: "My baby has Down syndrome. My baby has Down syndrome. And that's all I will ever think about again."

Because of course that's the farthest thing from the truth.

But in the early days, when Down syndrome loomed as The Worst Thing That Ever Happened To Me? I would have given anything to stumble onto a blog that talked about "American Horror Story" (I've decided I'm absolutely too scared to watch season two), the best Thai food in Portland, Oregon, the paper dolls I scored on eBay and Oh My Goodness You Won't Believe The Cute Thing The Babies Did Today. And did I mention my oldest son has Down syndrome? And that it's honestly (most days) no big deal?


If that's the kind of blog you're looking for? Then you've come to the right place.


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The Eyes Have It

I finally took Leo to his long overdue eye exam yesterday. You may recall he had surgery nearly three years ago for intermittent strabismus which in English means, “lazy eye.” This is apparently quite common in children with Down syndrome and it’s also easily correctable. Leo’s wasn’t terrible, but it was definitely noticeable and if gone untreated it would have gotten worse and started to affect his vision.

When we first started to notice the strabismus (or as we affectionately called it, “freaky eye,”) around age three, I had fears of patches or glasses which is a road that many friends “in the club” have gone down. As much as I didn’t jump at the chance to put my kid into surgery (on his eyes, no less, just the thought gives me chills) I admit being relieved by our no-nonsense doctor’s approach. A patch won’t work for Leo, he declared. He needed surgery. I was still nervous. Again, we’re talking about eyes here. I remember talking to my pediatrician about it and when I told him who our doctor was, I learned that he was pretty much the doctor for kids with Down syndrome and eye problems in our area. He sees 1,500 patients with Down syndrome alone (in addition to his “regular” population).

Back to the appointment. Leo’s eyes couldn’t look any better, said the doctor. His vision is quite good—20/30. His eyes are perfectly straight. The surgery took. We don’t have to go back for nearly two years.

He also shows no signs of cataracts which are apparently common with Down syndrome (this I did not know).

All in all, Leo did well with the exam. He was definitely afraid of the exam chair with the intimidating surrounding equipment. He did just fine though, once I sat in the chair and he took his place on my lap. And he was enthralled by all the cool gadgets they use to look at little semi-cooperative eyes (wands with spinning lights and literal bells and whistles-one was even Woody--be still Leo’s heart). I told the doctor that Leo could read and that he could certainly attempt to do the exam with the letters (you know, those classic “Es” they use in vision tests). He seemed surprised but agreed. He ended up using pictures (a house, a horse, a cup, all of which got progressively smaller) instead, but it was still Leo’s first official exam in which he was asked to identify something and he correctly did so.

Probably no shock to report that he hated getting the drops to dilate his eyes. Does anyone like those?

It’s such a relief to get those annual specialists’ appointments out of the way for another year. It feels like a huge accomplishment (partly because the wait in that office seems to be nearly a half a day although we sped through pretty quickly this time). Next up, the ENT. That one’s not going to be pretty. Leo hates that doctor. There are always tears and the need for plenty of strong arming and reinforcements. It can take three people to hold down a ticked off Leo as the otolaryngologist checks out the ears and sinuses.

And I can’t even drink.

On Check-Ups and Gratitude

I took Leo to the eye doctor yesterday morning for his annual check-up. He had surgery for strabismus last April so this was also the one-year follow-up. The doctor was thrilled with how he’s adjusted to the surgery (apparently either your brain “takes” to the surgery or it doesn’t and there is the chance that his type of procedure may require repeating). But he looks good and doesn’t need to go back for eighteen months so there’s another one to cross off the list. The doctor who did the pre-exam (not our surgeon doctor) seemed to immediately adore Leo. She exclaimed “Oh he’s doing very well, it’s very mild isn’t it? The Down’s?”

I know this was meant as a compliment and that’s fine, it just always shocks me when medical professionals speak this way. “The Down’s”? I mean, who says that?

Also, there’s nothing like sitting in a waiting room to gain a little perspective and gratitude. In my “Why Me” moments of exasperation with some of Leo’s behavior, I need to remember how in the grand scheme, I truly believe Down syndrome is the special needs grand prize lottery. There were some kids in the waiting room who were just…hard. I know if they were my kid I would love them and I’m sure people look at Leo and us sometimes and think “how do they do it?” But Leo is so present. He connects with people and he hugs them (maybe too much but seriously? If that's the worst thing you can say about a person...) and he communicates. Sure he’s stubborn and willful but I’ve also never met anyone who likes to please people more (when he wants to). Not all kids are like this (I know, duh, but still).

I made eye contact with some of the parents of the kids I’m talking about. I smiled at them, they smiled back, some looking exhausted, some looking resigned, some seemed embarrassed. Defeated? I guess I’m projecting. Mostly we all just looked tired, I think.

At one point the dad of one of the kids who I would describe as “challenging” took his daughter to get something to eat, I think I heard him say. She looked to be maybe ten (though it’s hard to say). She spoke in one word statements and repeated a lot of things. She moved very quickly around the room, sat next to people and got inappropriately close a few times (I wasn’t uncomfortable but sensed others were).

When the dad left with the daughter, the mom stayed in the waiting room. I watched as her husband and child left. The door closed, her shoulders went down, the pink covered Blackberry came out. She sighed. In no way am I comparing her situation with mine but I know that feeling. I think all parents do, maybe some more than others. Relief. Peace.

In other appointment related news, Leo was very cooperative, for the most part (I’ll leave out the small struggle with the eye drops which wasn’t as bad as it has been in the past). I can see why his teacher says that Leo “likes to please.” It’s nice to see him relate to other people. I can see him changing, growing up a little, not such a baby—well, not at all a baby, of course. The doctor gave him several different toys to play with, all had buttons and switches. She was watching to see how his eyes focused and moved.

We were a little early to the appointment (the doctor has two offices and we went to one I’d never been to so I left extra time, god bless GPS, have you ever tried to find anything in New Jersey?). Anyway, it was nice because we had about half an hour so I took Leo to the hospital cafeteria where we shared a bagel and juice. Of course he hugged three doctors between the bagel stand and the cash register, but hey. He has a thing for white coated women, I guess. Unless of course they’re trying to administer eye drops.

Thank Goodness That's Over

Leo's eye surgery is done. Can't say I would like to go through that again (and I wasn't even the one who had surgery!). We had to be at the hospital at 7am and since the daycare doesn't open until 7 that meant Ellie got to come adding a whole other layer of fun (actually she was quite well behaved and she got lots of compliments and attention in the family waiting room). Praise to the person who decided there should be mini tvs in the room before surgery as Leo got his full dose of Elmo. And MIL was in town so it was nice to have a third set of hands.

Leo was (understandably) very uncomfortable upon waking up from the anesthesia. I didn't expect him to be so out of sorts. I kind of go into auto-pilot mode in situations like this. I just held him and tried to keep him from hurting himself. He was bothered by all the wires and tubes. After both sets of ear tubes Leo was pretty mellow but I guess eye surgery is in a different category of misery. He was writhing around and pretty hysterical. And is there anything more sad than a tiny hand with an IV in it? It makes me so grateful that Leo has (knock on wood) been relatively healthy. My heart goes out to the parents who have to spend so much time in hospitals with their sick children. We were there for five hours and that was plenty.

Yesterday afternoon Leo was zooming around the house like nothing had happened. If he didn't have some rather frightening (though apparently normal) pools of blood on the sides of both eyes, you wouldn't even know he'd had surgery. This morning we went on a nice walk to the park with the dog and then came home to be told by the doctor that he shouldn't play outside. Oops. You try keeping a 3 1/2 year old inside the house on a beautiful day!

Thanks ER

What a crazy couple of days it’s been. Monday night when I picked Leo up from daycare he seemed ok. But when he let me buckle him into his carseat without protest and proceeded to ride silently all the way home, I had a feeling he wasn’t well. Then he wouldn’t eat dinner, which is always a red flag since Leo is definitely an eater (what can I say, he comes by that honestly). But he wouldn’t even come to the table. He was hysterical when I turned off Dora and then proceeded to wail and cry as I tried to feed Ellie her tofu and avocado and sweet potatoes. Then his wailing started to freak her out and she began to cry. Then her crying agitated Leo. Then Ellie flat our refused to eat at all and I found myself annoyed with Leo which isn’t really fair. Then I felt spread way too thin and that I was being a sucky mom to both my kids, to Leo who was sick and needed me and to Ellie, who at nine months needs a lot of attention, especially when eating and trying new foods. Basically it was a mess. Leo had a bit of a fever so I toyed with the idea of giving him a bath to cool him off but he was just so out of sorts that I decided the only thing to do was to give him Tylenol and put him to bed. Out of his misery. Luckily he went down easily. He’d been on a field trip that day and missed a nap, so that may have been part of it. I was really worried I’d have to keep him home sick the next day and with the work I am missing for his upcoming eye surgery it was really stressing me out. I let him sleep in the next morning and took his temperature first thing when he awoke. No fever, and he was off to school.

Tuesday is his eye surgery to correct intermittent strabismus (basically it’s a lazy eye). It’s been a whole thing to get the surgery scheduled (blood tests, a pediatrician visit to clear him). And of course, he failed the clearance this morning. Sigh. A suspected sinus infection. Or something is gumming up the works and making his nose a real mess. And honestly, he doesn’t seem like he feels well although there was no wailing last night and plenty of eating. The good news is that both tubes are still in place so there’s one surgery we can cross off the list. The ped had me concerned because he hadn’t been able to locate the right tube.

So now we are putting him on an antibiotic and waiting a few days and going back to the ped for a check on Saturday. Hopefully he will be given the clear. I am trying to be optimistic about it but at the same time want him to be healthy for the surgery. I asked the doctor if they would have to intubate him and realized the only reason I know what that means is from watching ER. That made me smile and I thought about telling the doctor that but I figured he wouldn’t care. Pictured above: All hail Children’s Tylenol. Nectar of the gods.