Five years ago today, my son, my precious firstborn, made me a mom, and life has been so rich and full ever since. The pictures pretty much tell the story of how we’ve celebrated his actual birthday. Still to come: his favorite dinner of homemade mac and cheese.
They really do love each other.
This photo cracks. me. up.
Licking the frosting off the chocolate cupcake he picked out at Ivey Cake.
So, it’s only been… how many weeks since my last post? Let’s just call that a blogging dry spell, shall we?
And now we’re moving on to talk about the fact that my eldest child is turning five on Wednesday. He’s spelling words – sounding them out, by himself! – and real, honest-to-goodness, five-days-a-week school is just a few short months away. I’m not entirely sure how any of this has happened, but it’s here, and I’m doing my best to keep up.
We celebrated with family today, and it was fantastic. Corin chose Peter Pan as the theme for his party. We kept things relatively low-key, but we did dress in costume, which was way fun.
I had to work to ignore the irony of planning a birthday party based on the boy who wouldn’t grow up. I tease Corin sometimes about trying to keep him little. “What if I put really heavy books on your head?” “What if I stopped feeding you all those healthy vegetables?” And he laughs and says, “No, I’ll just keep growing.” I feel keenly the shortness of these days. They are slipping through my fingers, and all I can do is snap photographs and say a prayer that I can hang on to the memories. These days are often hard and not at all glamorous, but they are precious to me.
Today, though, I have been reminded of what an incredible experience it is to watch a child grow and learn. It’s happening before my eyes. He’s taller, his face is leaner, he’s obsessed with superheroes and sword battles, he can spell “table” with minimal help. This year, I watched him anticipate and appreciate his birthday party in new ways. It is bittersweet, but there is joy in it.
For better or worse, our Peter Pan will grow up. It’s happening right now. (They Might Be Giants, anyone? “You’re older than you’ve ever been, and now you’re even older. And now you’re even older. And now you’re even older…”) I get my brief window to try to teach him things, to shape his character, to point him to the God who made Him and gives him a future. I’ll take it, and call it the privilege it is.
It’s taken me nearly two months, but here I am, with proof of the mythical winter backpacking trip with both kids. I knew you wouldn’t believe me without pictures. If these look a little weird, it’s because they were taken on prototype smart glasses currently in development by my husband. I wasn’t about to pack in my DSLR camera, but, you know, the proof.
Saturday morning at Cedars of Lebanon
Not our RV
Packing up to hit the trail at Virgin Falls
Against all odds, it was a very successful trip. We bought warm layers for the kids and a new sleeping bag for Corin at REI, but the real key, I believe, is to start with very low expectations. I went into the weekend assuming I would not sleep for two nights, everyone would be freezing cold, the kids would wail, and it would hopefully all be part of the adventure. Imagine my surprise when all four of us slept well and warmly both nights. Turns out cramming two adults and two children into a two-man tent is a good way to keep everyone toasty. We car camped (our term for pulling into a camping spot rather than hiking in) at Cedars of Lebanon State Park the first night and then drove the next morning to the Virgin Falls trailhead in the Virgin Falls Pocket Wilderness. We hiked about 1 1/2 miles in to an awesome campsite beside a small waterfall (not the actual Virgin Falls), one of the prettiest backpacking spots I’ve experienced. Thanks to dear friends and fellow adventurers David and Kelli for suggesting the location. (The waist belt buckle on my trusty Mountainsmith pack broke on the hike in, but with a little help jury rigging with knots, it wasn’t too bad.) Corin was a champ on the trail with his little Lightning McQueen backpack and one of daddy’s hiking poles, and as long as we kept moving, Lina was content with her spot in the carrier on daddy’s back.
Temperatures the first night got down to the upper 20s, and the second night it was right around freezing. That night, Corin stepped in the creek in pursuit of a run-away hiking pole and got soaking wet to his knees, which necessitated a strip-down. He ate his dinner cuddled up in his sleeping bag inside the tent while his brand new long underwear and SmartWool socks, along with his pants and shoes, dried by the fire. Unfortunately, we at some point stoked the fire without moving his clothes and realized shortly thereafter that we had incinerated a rather pricey collection of winter clothing. The hiking boots thankfully survived unscathed.
I suppose to some people, this would have equaled a disastrous trip. David and Kelli worried about us, but remember, we started with very low expectations. The kids were sleeping warmly in the tent, we were freezing but enjoying good conversation around the fire, and we were outdoors, under the stars, with a waterfall roaring its soundtrack.
Jon had to leave town on a business trip the next day, meaning we had to break camp and hustle back out very early the next morning. The promise of a rare McDonald’s breakfast moved Corin down the trail at an impressive pace, and we made the trailhead in great time. We stopped at a truck stop for Jon to shower (yes, really) and made it to the airport right on schedule. I ferried two very tired and grubby kids home and scrubbed us all clean. We spent the rest of the day lazing about in a perfect post-adventure lethargy.
I’ve said before that the secret to having adventures with your kids is to just do it. Yes, it’s going to be exhausting and complicated, and yes, it might be easier to stay home. Sometimes, it’s okay to make that call. (Notice we don’t take these trips very often.) But sometimes, we marshall our strength and opt for the messy adventure. I want my kids to remember backpacking weekends. I want them to know what it feels like to wake up in the outdoors. I want them to know what the woods smell like in winter, and how food tastes after you’ve hiked long enough to earn it. I don’t have any research to back this up, but I’m betting families who backpack together fare better than average.
So, there you have it: our first backpacking trip as a family of four. It won’t be our last.
Our girl is walking. In the span of just a few short days, she has made tremendous progress. She went from taking a few steps here and there to taking around 20 steps to strolling across rooms and beyond. She turns corners, bends to pick up toys, dances, and generally navigates with confidence. She still stumbles sometimes, and she crawls when she’s in a hurry, but she’s getting more comfortable all the time. The physical therapist was impressed with her form and advised us to stop using the orthotic braces and try just a pair of supportive shoes. (She does still need some ankle support to keep her feet from turning in.) We discovered tonight that we have the perfect pair on hand – beautiful, never-worn Primigi boots handed down to us by a friend. Just in the few hours she wore them, she made huge progress. It looks like we’ve left the braces behind for good.
So, at just shy of 28 months, it has happened. In her usual fashion, she waited to walk until she was sure she could do it well. It’s tricky to catch her on camera, so pardon the dark video.
I guess I officially have to stop calling her a baby now. Toddlerhood has arrived, and she’s not looking back.
We’re in a doctor’s office waiting area, surrounded by other parents and children. It’s been an exhausting morning getting out the door and to the appointment on time, but we’re here, and it’s a moment of rest sitting in the chair together before we’re called back to an exam room. I give her a drink of water. I talk to her, about anything; I make faces, and she imitates, wrinkles her nose. We sing “The Itsy, Bitsy Spider,” and she makes the motions. Then she leans in, wraps her arms around my neck and squeezes. Everything has faded, and there is just us, the two of us, in a tiny moment of perfection.
Lunch is over, the littlest is down for her nap, and now we’re ready for stories before his quiet time. He chooses two books, or maybe we negotiate and we each choose one from the overflowing shelves. We settle onto the couch under a blanket, and I read: about a snowy day, or about a woman who makes her mark with lupines or a father who takes his daughter owling in the night. He soaks in every word and studies every picture, as he always does. The house is silent except for this story. I pull him close and he snuggles his head against my chest. Someday soon, he’ll want to read these stories himself, and he won’t need me. Someday, he might not want to snuggle under the blanket and rest his head on me. Someday, but not today.
The laundry is piling up, as it always is, and stacks of folded clothes have to be put away. I carry a full basket up the stairs. I hear the racket from half-way up, and I walk to the room. He’s bouncing a ball as she tries to catch it, and they’re both racing around on all fours. He’s laughing hysterically, and she stops and reaches out to pat his leg. The shared affection is obvious. The moment of harmony is likely to be brief, but the love is there, and growing all the time. He leans in and gives her a kiss, and she laughs again.
A friend recently remarked that the parents she knows are all very articulate about the things that make parenthood hard but have trouble expressing why it’s so great. She’s right. There’s a lot out there these days about the things that are stressful and crazy and downright miserable about parenting (and there are plenty). I like that we can talk about and laugh at those things and find some solace in knowing we’re not alone in them. Those things are usually pretty tangible. It’s a lot harder to explain to someone without kids why it’s still all worth it. You end up sounding trite or vague or ridiculously sappy. Maybe it sounds like you’re bragging about your kids. It’s nearly impossible to convey the strength of the feelings that go bone-deep.
All I can do is share moments like these, when time stops, the world fades, and I think, “This. This is why I keep going.” These are the times that remind me that right now, right here, I’m living the halcyon days.
The kids had their Mother’s Day Out Christmas program on Friday. Corin sang with his class, we had brunch, and Santa made his appearance. It was a fun time, and Corin was especially thrilled that his Mimi made the long trip up just for the morning in order to be there.
I have some bragging to do about a winter backpacking trip we took with the kids last weekend, but I have to get Jon to send me the few pictures we managed to take to provide photographic proof of our derring-do. Stay posted.
Today was a perfect illustration of how parenting a child with special needs can be a bit of a whiplash experience.
We’ll start with the low.
I mentioned that Thanksgiving induced a hair pulling relapse for Lina. Last Tuesday – her first day back to Mother’s Day Out after the holiday – her teacher greeted me at pick-up with a report of a day spent terrorizing her classmates. Today, I was met at pick-up by the program director. Yeah. Never a good sign.
She was very sweet, but the tone was serious. They plan to bring the special education teacher into the room to observe and hopefully make some suggestions on strategies. (She is normally a teacher in Corin’s room.) I talked to the director about what we’re doing at home, and she admitted that today had been better than last week but didn’t hold back from a series of dangling sentences: “If it doesn’t improve, we may not be able to… Not that we’re even close to that yet, so I don’t want you to think… But I need to let you know that if it doesn’t improve, she won’t be able to…” I understood the warning very well.
Believe me, I get why this is a problem. It’s a sensory issue without a quick fix. My girl has a death grip, and it is horrifying to see her attempting to yank hair out of the heads of small, helpless children who invariably manage to look simultaneously confused and pain-struck. It’s a problem at home, too, and we are working hard on it. We’re regaining ground, and I think we’ll get back to a much better place. I don’t expect it to result in Lina actually getting kicked out of Mother’s Day Out, but you can imagine how the entire exchange made me feel.
The good news is the day didn’t end there. Tuesdays, we head straight from Mother’s Day Out to speech therapy at Vanderbilt.
And man, did Lina kick some speech therapy butt today. Her attention to task was phenomenal, she was consistently responding appropriately with words or signs to questions and prompts, her vocabulary had expanded, and her whole manner of communicating was well ahead of where she was just a week ago. Her therapist was floored. I wasn’t too surprised; after all, as I was getting her ready for nap time yesterday, she told me, without prompting, everything she’d just eaten (her version of “cheese,” “raisins,” and “crackers”).
And so it goes. There are highs and lows, sometimes right on top of each other. The thing I’m learning about having a kid with Down syndrome is the struggles are not so different from parenting any kid. It’s just that Lina’s timetable is slower, and her challenges are magnified. But her triumphs are magnified, too. It’s like trying to explain to a person without kids why having them is so hard but also so amazing. Parenting a kid with Down syndrome is really hard. It’s also really amazing. And just like in that conversation about having kids, the take-away is unequivocal: it’s absolutely worth it.
Christmas is finally in full swing around here. The tree is up, the decorating is (almost) done, and I’m finally in the spirit. (I was beginning to think we’d just have to celebrate in February, because it felt like it should still be October.)
For most of our married life and all of our children’s lives, we’ve had a fake “slim profile” tree, which was the only thing to fit in our tiny living room. This first Christmas in the new house marks the long-awaited return to a real tree. I had idealistic plans for a rooted tree that could be planted outside after the holiday, but our trip to a local nursery yesterday doused that dream in reality. Turns out, we had completely underestimated the size of the root ball for a 6-foot tree. As Jon emphatically pointed out – to my disappointed protests – there was no way we could lift that tree, much less carry it up the stairs and into the living room. I couldn’t reconcile myself to the tiny tree we might be able to lift (with still considerable effort), so we headed to the section with the cut trees and chose the modest (and considerably more maneuverable) Fraser fir which now adorns our living room. I keep breathing deeply; I’d forgotten how lovely that smell is. I even like that it’s a smidge crooked. Our simple tree’s not-perfection is just right.
The “ordaments” (Corin’s rendition) are a mishmash we’ve collected over the years. Some are cheap plastic, some are beautiful, delicate glass (located at the top of the tree these days), and some are rough, hand-made crafts covered in kids’ fingerprints. A big part of the Christmas tree tradition for me has always been unwrapping the same ornaments every December, the protective paper yellowing and eventually having to be replaced, the memories stacking atop one another as the years roll by. It was that way all through my childhood, and it’s one of my favorite parts of the holiday. Decorating the tree is always helter-skelter with small kids, but those ornaments and the attached memories are precious to me.
We are trying to keep things simple this year. There has been very little shopping, save a special outing with my dad. Relatives have been warned: prepare for homemade! It keeps holiday expenses more manageable, but really, I think I prefer it this way. (I can’t speak for how the relatives feel.)
So, here we go. The Christmas whirlwind whirls, and we do what we can to slow it down, grasping fleeting moments to stop and savor.
I’ve discovered the key to taking photos of my son. “Corin, whatever you do, don’t get in this picture.”
Getting a huge kick out of trying to eat the rocks
I mean, people, look at the size of those root balls!
In illustration of the usual state of my sinuses, Corin insisted the delicate tea pot ornament was a neti pot.
Yes, Lina decorated the tree without a shirt. No, I don’t really know why.
A new favorite from last year: father-son hiking boots
“The Night Before Christmas”
Lina has taken a couple independent steps several times over the last few days. I feel like she keeps teetering on the brink of really taking off. Her physical therapist sent us home with a walker this week so she can keep practicing and improving her strength and confidence. She’s a pro at standing independently, but the therapist thinks it’s just a matter of that extra bit of strength and confidence to balance on one foot as she steps forward. She has a great foundation of good technique and all that bilateral crawling is actually fantastic for brain development.
Lina is in an interesting in-between stage right now. She’s not really a baby, but because she isn’t walking yet, it doesn’t seem quite right to call her a toddler. Her receptive language in particular is improving, and there are small gains with her expressive, though her therapist thinks that is taking a back seat as she focuses on gross motor. (Just one more reason we’d really like to get that girl walking!) Her play is changing significantly, which her therapists credit to her time with typical peers at Mother’s Day Out. She engages in more focused and pretend play with toys, rather than just exploring them and then throwing them aside (although she still does that some, too). She might pretend to feed me and herself with her baby’s bottle, or spend more time actually driving a car around on the floor, or maybe put people in the proper spots inside the bus. She might be able to focus long enough to put shapes in the proper spots in a shape sorter. We still haven’t gotten much traction with puzzles, and attention span can still be a challenge at story time, though she usually will sit through her favorite books at least once.
We’ve also been experiencing a big recurrence of hair pulling. She’d been doing much better until Thanksgiving, when the house was full of unfamiliar people and constant noise, and my poor little 22-month-old nephew was right at her level with his tempting locks (regrettably now much thinner than they were). The overstimulation set Lina back a long way on this one, and her Mother’s Day Out teacher reported that she terrorized everyone in reach on her first day back post-holiday. Here our tender scalps were just recovering… Back to the slow, steady “redirect and reinforce” approach.
Her sense of humor keeps growing, as does her desire to imitate. She can express herself loudly, especially when she’s frustrated. She loves to use song motions to communicate. For example, she points to her face for happy, as in, “If you’re happy and you know it, then your face will surely show it.” We also get a lot of the round and round motion for the wheels on the bus, and the occasional itsy, bitsy spider thrown in for fun.
I’m not going to lie: her slower pace of progress can be very frustrating. My arms can testify to the challenges of lugging around a two-year-old (albeit a small one). Inside our little family, we celebrate each step, each sign of progress, each little milestone and feel gratitude and pride in her achievements. It gets harder when we’re in public and strangers ask her age; I brace myself before responding, knowing they are expecting a child much younger. It gets harder when she’s side-by-side with her peers and obviously not at their level. It gets harder in the little kids’ class at church, where managing her short attention span, toy throwing and hair pulling demands every ounce of energy I have.
I was thinking about this the other day as we were driving home from an outing, and I felt an almost overwhelming urge to rush her home, hold her close and never leave the house again. I suppose every parent experiences the urge to shield their children from the harsh realities of the world, but I find that to be magnified with Lina. I know it’s an urge I will have to fight her whole life, as I encourage her to take those baby steps to each new milestone, out into a world that will not always greet her with the love and understanding she finds at home. It pierces my heart to know someone might even be thinking something unkind about her. I can hardly stand to contemplate the jeers and misunderstanding she may encounter as she grows and ventures out from the nest.
But just like with Corin and with every parent and child, it’s my job to equip her for that big, wide world. I know full well that sheltering Lina at home would do a tremendous disservice, to her and to the world she will enrich. She needs my full-voiced support urging her forward, giving her the confidence for each of those steps forward. Our family will always be a safe haven, but it has to be a launching pad, not a hideout. The trick is to find ways to work now to make the world the place I want it to be for her. I suppose that’s why I keep writing and posting pictures here.
For now, when parents ask if she’s walking, I smile and say, “She’s working very hard on it.” When other kids her age race by her, I am thankful she has them to imitate. When she won’t stay on the blanket at story time, I sit with her, knowing she learns through constant practice. As I exercise patience and cheer Lina’s baby steps now, I know each one is a tiny step toward the future we dream of for her.
Really, there’s not much narration necessary here. It was a beautiful Thanksgiving with family, hosted for the first time at our home. The meal was a true group effort, with everyone contributing to a fantastic menu. It was so good to spend time with family we see too rarely. Our hearts were as full as our bellies, which is saying something. Friday was a site-seeing outing downtown and a fantastic lunch at The Pharmacy in East Nashville. These times are over too soon, and we have to hold out for the next holiday we can gather and enjoy each other again.
And once again, I am indebted to my brother, Ryan, for taking quite a few of these photos.
A Dash of the Unexpected 