Lucas Camilo

It’s time that we dedicate a bit of this blog to Ida.

Ida is amazing. And at three months shy of her third birthday, she is amazing in BIG, BOLD ways. Like her outfits. This peace jacket plus bright star pants is one favorite.  Today she wore to school a bright blue shirt with a rainbow on it, a hot pink tutu skirt she calls her “ruffles,” hot pink and purple floral print pants, mismatched socks plus some brown converse. She knows style.

We haven’t written nearly as much about Ida here as Lucas in large part because this blog has been mostly about our journey through disability and parenting, and Ida has turned into a pretty typical toddler. But these days, in our family – even when momentarily Lucas’s needs outshine hers – Ida gets a full half (or more) of our attention. She demands it and deserves it, and she deserves some documentation.

We have some hilarious conversations these days. She had to repeat herself a few times when she was explaining to me the other day that when she coughs or sneezes, she does it into “my Elmo.” She ended up pulling up her sleeve and demonstrating a very good fake cough into the crook of her elbow.  She asks us “how you feeling?” about fifty times a day. “How you feeling now, Mommy?” She asks so genuinely, it’s hard not to feel like she deeply cares. And then, two minutes later, when I tell her that I feel sad when I ask her not to dump her water in her soup, and then she goes ahead and pours the water on the soup and throws the whole thing on the floor, well… she doesn’t seem to care so much how I feel anymore.

Yesterday she told us she wanted to put on an “achoo.” She had found an old bag of Lucas’s temporary tattoos, and she insisted on putting them on her and us. She ended up with a couple of car “achoos,” and I now have a wheelchair heart on one arm and a pirate ship on the other.

Ida, like her brother, is sometimes a homebody. On a cold afternoon if I suggest going to the park, she immediately says no. She also HATES –with all caps and bold letters– wearing jackets, but we’ve mostly given up on that fight (although sometimes, if it’s her new bunny jacket and we act like we don’t care what she does, she’ll wear it.) But then, when she does agree to go out, it is often incredibly fun. Sometimes we just hold hands and walk around the block and talk about what we see. Sometimes she insists that I run ahead and hide (behind a tree along the sidewalk, where she can see me because I’m not two-dimensional.) And still she runs up looking for me and is delighted when she “finds” me. She’s also a big tree hugger, and when we get to the part of the walk near the park with the giant old oak trees, she picks a tree and declares “I hug a tree!” and then proceeds to do just that.

A couple weeks ago, we even convinced Lucas to go for an afternoon walk in the leaves with us. He was reticent, but once we were outside he got into the game. We’d roll up under a tree, and then Ida and Burke and I would throw leaves on him. He loved it, and demanded over and over “MORE LEAVES!” It was one of those late October lovely fall afternoons, with a little bit of blue sky and sunlight left after school because we hadn’t set the clocks back yet. It was fun to celebrate the full glory of fall with just a walk around the block as a family.

And, of course, it’s not all so idyllic. Ida’s intense love and hugs and check-ins can also turn aggressive quickly, especially when she’s tired, and especially when I’m the only adult with both Ida and Lucas. It pains me that there are moments where Lucas’s needs are so much more acute than hers, and it seems like she can feel it. Recently he was sick, and she wanted my attention. And by “wanted,” I mean she threw herself all over my body and screamed as I knelt by the couch and tried to suction Lucas.   When I tried to tell her to wait (first somewhat patiently, then with my most serious don’t-mess-with-me voice) she figured out how to turn off the suction machine mid-suction, and then started pulling on Lucas’s ventilator tubing. Some of things she does for attention are annoying and, without my interference, could be dangerous. And then some things, like pulling on Lucas’s vent, could be both dangerous and painful for him.

We’re still working on what to do in those moments. Burke and I have talked about safe and non-punishing ways of restraining her when it is for the sake of Lucas’s safety – if you have ideas, let us know. Our friend suggested giving her a screen (ie Daniel Tiger on Netflix), and I’m feeling like that is both brilliant (because it’s nicer than bungee tying her to a chair) but also a dangerously slippery slope toward rewarding her attacks on Lucas with TV. Anyway, I know this isn’t a unique problem to our family – setting boundaries with toddler – although we certainly have a unique flavor to the challenge.

One “solution” is that right now we’re trying to have two adults around in the evenings. Some nights we have nurses staying later to be there for Lucas, and we’ve found a couple of great neighborhood babysitters for the nights we don’t have nurses and Burke or I need to be out. And we’ve had friends step up in huge ways again recently. I feel so grateful for the help in the past few weeks from Susie, Yantra, and Lisa – thank you for being special adults for both our kids, and for making our days so, so, so much more manageable!  And I’m grateful to be in the Pacific NW near all our family who help pick Ida up from school, or come over early to help get kids out the door, and even help take care of kids for whole weekends so Burke and I can work… and even go out sometimes!

And the reality is that these current challenges are just Ida doing her job of growing up and experimenting and learning, including learning what happens when she does what we tell her not to do. And honestly, the hard times are still relatively few and far between. More often than not, our challenge is just keeping up with the abundant energy of silliness, pink frilliness, and deep caring for us and for Lucas.