Last Days of Disco

I registered the "babies" for kindergarten a few weeks ago.

I don't call them "babies" anymore of course, but that's what they will always be, technically.

The enormity of impending kindergarten is not lost on me.

It's been a looooong two years. It's been wonderful and maddening and exhausting and frustrating and ridiculous and hilarious and stressful and a gift.



When I lost my job just over two years ago, my life changed overnight. Never in a million years did I imagine myself as a "stay at home" mom (and I don't consider that I ever have been since I was fortunate enough to fairly effortlessly segue into steady, part-time freelance work at home). But there is no question that in the last two years I have been "home" much more than I ever was with any of my children. And I don't think I've made any secret of the fact that it hasn't been easy. Of course it hasn't been.



I feel like it's all been leading up to this--the "this" being kindergarten, aka, a full day to complete my work (imagine!) and all the other endless tasks that go along with a house of six that includes four young children. Right now, I bookend the bulk of my work in about three hours in the morning (the amount of time I have once I get all the various children to all of their various places before it's time to pick the twins up from school) and at night after they all go to bed. There's a babysitter in there when work gets particularly overwhelming. I also answer work emails and phone calls and address inquiries throughout the day. And yes, I am basically a crazy person because of this.

I despise being rushed. I abhor doing things "halfway." I detest leaving dishes in the sink and crumbs on the counter and Lego bricks on the carpet in front of the coffee table (OUCH) and laundry unfolded in a basket, but this is what I have learned to live with in the last few years. I pick my battles, I look the other way and I have learned the hell out of prioritizing, compartmentalizing and yes, time management.

I HATE losing my temper and running out of patience but I am human and I have done just this, more times than I am proud of. Because, helloooo, stress.



The days have been long, for sure. Going into this whole "working from home" gig, I knew this was IT. Once they start school? You lose a tiny bit of them that you just never get back. I know this because of Leo and Ellie. These last two years I've done my best to pack the twins' days while also getting my work done. Before they started school in those dark, snowy months right after my full-time job ended, we made the rounds at library story times and used afternoon grocery trips as a way to stay busy get out of the house. Then in September of 2014 both twins were in school five mornings a week, and I got a taste of what life COULD be like when I had the time and space that I had once known. It was a tease of the future, of a life with "big kids."



Once we were no longer slaves to the afternoon nap (at age three, when Lucy put an end to THAT nonsense (groan), the twins started the requisite afternoon classes--gymnastics and swimming at the local community center, two days a week. And sometimes (OK, often), trying to slide dry clothes onto wiggly, still-damp bodies that won't stand still long enough to get properly dried off is about the LAST thing I feel like doing, but I tell myself, SELF? This is it. This is what you do. Because there will never be 1pm swimming classes again, ever. And sometimes we even stop for ice cream on the way home, because that's what you do too.



And now, officially registered for kindergarten and on the precipice of full-day school for ALL four (three at the SAME school? What the what?), it just feels...big.



We sold this bad boy a few weeks ago. Of course we hadn't used it in a while but still...I haven't been without a stroller in my house for...eleven years. It's the end of an era, to be sure.

I've said this before and I'll say it again, as hard as things can feel sometimes, I do my very best not to wish time away. Some mornings when I'm getting breakfast on the table (three different drinks for four kids) and packing lunches and snacks into backpacks and someone is playing a keyboard and another person turns on "Knuffle Bunny" on the CD player at full volume, the very hairs on the back of my neck stand up because it is SO EFFING LOUD and it feels like the walls of the house are going to close in on me.

But then Leo's bus pulls up and he gets on and is off to middle school. And then the rest of us load into the van and sing "Cheerleader" on the way to Lucy's school. And then we get home and Harry's bus is waiting for him. And then it's just Ellie and me. And then she's skipping down the hill to the blacktop where the third, fourth and fifth graders line up.



And then, it's just me. And it's quiet. And sometimes it just feels altogether unfamiliar.

Girls' Weekend

"Mommy, do I get to go to the Camporee?"

"LUCY! Stop at the top of the hill!" I shrieked, barely pausing to listen to Ellie's question.  "What?"

It was dusk on a Friday afternoon in mid-January, the end of another long week. Like we do every other Friday, Leo, Harry, Lucy and I load into the van to drive the three minutes to Ellie's school to pick her up from her Girl Scout meeting which concludes just before dinner time.

Lucy barely paused at the top of said hill, then took off through the dark parking lot (Awesome!), meanwhile Harry was at the bottom of the hill, kicking at some grass and taking his own sweet time to join the rest of his siblings at the car. In other words, just a typical moment in my life.

I actually knew about the "Camporee." It was a weekend trip planned for the following weekend, two nights at a YMCA camp in northwestern New Jersey. All the Girl Scouts in Ellie's Girl Scout troupe were invited but each girl needed a parent chaperone. Ellie had asked about it for two years and I somehow put it off. Even though I feel strongly about doing things one-on-one with our kids whenever possible, a whole weekend away with one seemed complicated.

"I don't know, we'll see," I mumbled, between pleads with Harry to get into the car and Lucy to scoot into her carseat so I could buckle her in. Inwardly I was cursing the Girl Scouts for publicizing the trip, wishing it could be something that only parents knew about so that if we couldn't take our girls, they couldn't be disappointed. But silly me, third grade girls talk to each other. They're not little kids anymore.

Later when I brought it up with Erin to see what she thought (secretly hoping she'd poo poo it and Id be off the hook), she practically (lovingly) pushed me out the door. "GO," she implored me. "It will be good for you and it will be great for Ellie."

So go, we did.


Fairview Lake, Newton, New Jersey


Ellie was just SLIGHTLY excited about her top bunk (and her new purple sleeping bag).

We left home shortly after sunset and arrived in time for hot chocolate, cookies and swap making in the dining hall. Soon after we retired to our cabins (bunkbeds!) that we shared with two other moms and their daughters. I had one of the worst night's sleep of my life (and believe me, there's a lot of competition for that), between the street lamp that shined in my eyes all night and the plywood-plush mattress. But no matter-I was heartened by the fact that four year olds would not be rousing me before sunrise in the morning and I had no responsibilities for the next day, other than chaperoning Ellie to various Girl Scout activities. WIN.


Candle making was favorite (yes, the let the moms do it too). It was dip, dip, dip, dip. Super relaxing. Super zen. Totally what I needed.

They kept the girls perfectly busy. I say "perfectly" in that there was plenty of down time but also great activities for them. They spent a morning learning about letter boxing.


They survived the Frozen Swamp Tour.


Ellie and the biggest marshmallow of her life. True love.

Perhaps MY favorite part of the weekend was the dining hall. Can I tell you how sweet it was to walk into a room where all the food had been prepared by others and would be cleaned up by others? I didn't realize how much brain space is taken up by meals for the kids until I had a weekend off from cooking and cleaning up. If I'm not making meals or cleaning up after them I'm thinking about what I'm going to make and when I'm going to make it. Always watching the clock. And believe me, I am no gourmet--I'm not even talking about elaborate cooking here folks. I'm talking pasta. Baked chicken. Some cut up fruit. It was SO nice to sit back and let someone else take the reins for the weekend.

Saturday afternoon the girls rehearsed a little performance for the evening's talent show and the moms congregated in a room with couches and coffee and we just relaxed and talked. Bliss. I seriously could have just stared at a wall and been perfectly content. The adult conversation was just an added bonus.


That evening after dinner (followed by brownies, a sundae bar AND s'mores--see above for Biggest Marshmallow--the girls performed their song (there were Girl Scout troupes in attendance from all over the state). Yup, a lodge full of giggling, shrieking elementary and middle school girls. It was as loud (and adorable) as it looks.

In the morning, following brunch and prior to departure, the girls had a list of activities to choose from.


"What was your favorite part of Camporee?" One of the counselors asked Ellie on Saturday night. "It hasn't happened yet," Ellie answered quietly. She had her heart set on archery.


Rock climbing was also highly anticipated.

Before it was time to pack up the car, Ellie and I took some time to explore the camp one more time, just the two of us. I made a conscious effort to say "YES!" as much as I could all weekend. "Can I have another brownie? Can we go check out the creek? Can we make one more candle?" Yes! Sure! Why not?!  With four kids and four personalities and four different sets of needs it can be SO hard to please everyone all the time--not hard actually, impossible. I find myself constantly feeling like I'm not only being pulled in many directions and endlessly disappointing someone. I've come to accept this, but it sure is nice to be able to just say YES to a request without thinking about how it's going to affect another kid or if I'll need to get four of something and well, you get the picture. (Of course, saying yes ALL the time wouldn't be a good way to be but it's just fine for one weekend if you ask me).






Pretty excited about the name of the camp gift shop.



Finding hearts in the natural environment is a family favorite. The Camporee did not disappoint.




Camporee selfie!!


If you're wondering how the others fared in our absence, well they were more than fine (see above for a pic that Erin texted me over the weekend). I came home to seven loads of clean laundry (thanks Sweetie!) and fresh baked cookies. I think it's safe to say I could got the easier end of the stick with the One Kid Weekend.



Next year I will not change the subject when Ellie asks me about the Camporee. I'll mark it on the calendar, and we'll be there. I'm looking forward to it already.

31 for 21, Day 24: The News is Good

Welp. Clearly I've failed at ye olde "31 for 21" this year. It was a nice thought, but it was not to be. There was a time when I could blog every day and this is just NOT that time.

But I've enjoyed the abundance of Down syndrome articles friends have shared in the last few weeks (courtesy of Down syndrome Awareness Month). There's so much good information now. So much positivity and hope. So much that wasn't there on that insufferably hot, humid day more than eleven years ago in the delivery room, when a doctor I'd never met gruffly muttered, "Well, we think he has Down syndrome."

This week, some of that good information came in the form of a podcast. I've started listening to them again, after an unintentional hiatus. I used to enjoy them when I was commuting (a hot coffee, a seat by a steamy window, a voice whispering eloquent writing or dialogue into your ear? THE BEST). Now my commute is two minutes long, the time it takes for me to drive home from dropping Ellie at school, walk to the kitchen table and pull out my laptop. So I've had to get a little more creative about finding the time to listen.

But check this one out. Writer and comedian Bethany Van Delft says, of her realization about her early days of having a baby with Down syndrome:

"Once I stopped fearing...I realized all moms cry a lot. All moms doubt their ability to raise this child. All moms worry about the future. I used to wish I could go back in time and get that test after all, but now I wish I could could go back in time to allow myself to feel the joy that a new mother feels, because that's what I was."


I've started listening to podcasts while running (the only time in my life when things are "quiet"). I turn the volume WAY up so I can't hear my pathetic gasps for air. Recommend!

Then came this story, about a new program in which young people with Down syndrome write "Congratulation" letters to new parents of babies with Down syndrome. Now, "Congratulations!" is not a word I remember hearing much (ever?) at the hospital when Leo was born. Luckily, I think the world has changed a bit since then, but this campaign is still amazing and much-needed. An excerpt from my favorite letter:

"PS. This baby is going to be the best thing that ever happens to you."


Leo, 18 months. 

Yes.

31 for 21: Day 11, FAIL, Try Again

Apple picking and pumpkin patching with the crew yesterday. It was a spectacular, perfect fall day and every year this particular outing gets a little easier and a little more, dare I say, fun?

OY. I am not doing well at this 31 for 21 this year. I had such high hopes for myself.

Let's go for some bullets, shall we?


-Leo is still difficult to understand speech-wise. I won't lie when I say I would have thought by now, at age 11, things would be clearer. I'm guessing this where we are for him and that breaks my heart a little because he has SO much to say. I suppose I should be grateful for that at least, right? But he's likely always going to be tricky (for strangers and people who don't know him well--most of the time his family/friends/teachers do OK but even we are still perplexed and yes, frustrated). However. I love that his speech is getting more advanced and interesting and mature. This morning for example, he busts out with "Speaking of apple bread..." (We were discussing what we could make with all the apples we picked.) I mean, "speaking of...?" Just love it.

-This week was a doozy for Ellie. It feels like the bloom is falling off the rose on the new school year: Apparently third grade is a "big deal" (this is news to me as this is my first time going through third grade for a 100 percent gen ed kid). Multiplication, long division, more and more standardized testing. The list goes on and on. There has been a lot of talk of feeling "pressurized" (Ellie's words) and worry about the speed at which math is going. I checked in with her teacher and she's doing fine, so this is likely self-imposed stress (she's hard on herself and a bit of a perfectionist. Hmm. No CLUE where she gets that, cough cough). Every night after Ellie finishes her homework (math worksheets and language arts and spelling) she does her computer homework for 30 minutes. One evening this week I waxed nostalgic about how after homework Ellie used to draw. "I don't have time for that anymore," she announced, matter-of-factly. Geez, kid. Just stab me in the heart, why don't you?

-I met a woman yesterday at Leo's soccer yesterday who has a 20-year old daughter with Down syndrome (she's in the same special needs soccer program as Leo). It's bizarre to think about the fact that I actually don't know anyone with an adult child with Down syndrome. How did that happen?

As we chatted, we realized our children shared a few teachers, so that was a fun little trip down memory lane. There are a few younger children with Down syndrome in the soccer program too and as we watched their antics we shared a few funny stories of our trials with Impossible Young Children with Down ("When she was little, I never sat down!" this mom recalled). Yup, sounds familiar. I tried to take off my journalist hat and just act like a normal, friendly mom (in these situations where I am starved for information I tend to ask a lot of questions) but I was dying to know: What's high school like for her? Does she have friends? (Answer: Yes, tons. Or at least, everyone seems to know her. Huh. That sounds familiar. How much independence does she have? Does she go home after school by herself? The answer to the last one was no, she still has someone with her at home unless it's just for a few minutes. That one was a little tough for me to swallow.

Her daughter is in her last year of high school and her mom is now looking at programs for next year. In her words: "You're pretty much on your own." The future. I can't can't even go there. But I know the drill. I opened up Facebook this morning and there was one of those sob inducing "Memory" pictures from five years ago: Six year old Leo and three year old Ellie at the SAME apple farm we went to yesterday. Um. EXCUSE me? Five years?

Apple picking, October 2010.

And where were the twins? Oh yeah, not BORN yet (I was actually pregnant the day this picture was taken but didn't know it). And the future that mom spoke about yesterday? It will be here before we know it. But for now I'll go back to my cozy spot with my head resting firmly in the sand.

Falling For Fall

We all forgot how fun it is to play in the leaves.

Oh man. I love this weather. Every year I forget how glorious fall is. Chrystal clear blue skies, the crispy leaves tumbling down. Yesterday we got home early from Ellie's soccer game and headed to the backyard. Well, the boys did. Leaves and trucks. Really, what else do you need?

And yes, Harry wore his pajamas all day yesterday. Don't you do the same thing on Sundays?

Day 2: Tidbits

1. It was a cold, rainy Saturday here today. It feels like October came and a switch flipped. Hello, fall. Joaquin (hurricane, that is) spared us thank goodness. Three years out and we're still all a little twitchy, after enduring Super Storm Sandy. Because you just truly never know.

All set for Halloween, already!

2. One week into school and the kids (mostly Ellie) started asking me when we could start decorating for Halloween. I broke my own self-imposed "Not Until October 1" rule after much whining and caved last weekend. Of course they had to throw a "Halloween Party" complete with snacks (Ellie can be quite industrious when she wants to be--see how she fetched everyone beverages and filled the Halloween bowls with snacks?). And yes, they dragged out all the costumes. 'Tis the season.

One costume possibility: Pizza Spider Man. Combining two of Leo's most favorite things. Have I mentioned I will never tire of his fantastic sense of humor?

31 for 21: Hello, Old Friend

I hardly read other people's blogs anymore let alone attend to my own blog, but I just saw that my friend Cate is doing "31 for 21" (blogging for 31 days of October) and thought, hey! That might be fun. And, um, challenging? Seeing as how I'm lucky to blog once a month let alone every day for a month. The last time I did this I think I had babies and prior to that I did it for years and years (also with babies) and well, what can I say? I'm getting older and (more) nostalgic.

We also won't talk about the fact that it's October 2 so I've technically already missed a post. Ahem.

I have a lot of ideas about what to write about. The trick will be formulating them into some coherent posts. I don't think about Down syndrome too much these days. Eleven years into this gig, Leo is just LEO. Sure I attend IEP meetings every year and certainly communicate with his "team" at school and teachers more than I do with the other children. But that just feels normal to me. I think having other children has helped considerably, in that I don't pin everything (bad) on Down syndrome. For example, when Leo was a challenging preschooler who ran away from me at every turn and refused to go to sleep at night (Ah, the good old days when I had to hold his door closed while he wailed), I blamed his Down syndrome. Fast forward seven years to TWO "typical" preschoolers who delight in running from me in the parking lot and not going to sleep at night.

Little did I, an inexperienced parent know that he was actually just being, you know, a preschooler.

More alike than different, indeed.