When There Are No Words

So I had a post pre-emptively written to put up for the holidays, I just needed to drop in a few pictures from our celebration and hit “publish.”

But as it turns out, that’s not going to happen this year.

Something’s been changing for Rowenna over the last few months and we’re not 100% sure what’s going on. Until the end of the summer, she was our go anywhere, try anything girl. We could wake up in the morning and leave for a impromptu day trip within the hour, Rowenna happily strapped into her car seat and up for an adventure. Overnights at grandma’s and grandpa’s house were a little bit of a struggle, but we always wrote it off as sleeping in a different bed or being a bit over-excited still from the fun of the day. And while those nights were not always restful, the days that followed were fine, and she just rolled with the punches.

But lately, even the smallest things are causing her stress. We’ve been using a somewhat piecemeal system for dealing with her ever-more-frequent meltdowns, having never developed a clear strategy for them since she’s never really done it before without clear provocation. We wrote some off as stress, some as a precursor to illness, some as her being a little annoyed at a mommy who has been sleeping and throwing up a lot. I’ve been tracking what happens around the time of a meltdown and I have yet to find a pattern. There’s no consistency in location, food, volume of her environment, or time of day. At least none that I can see yet.

It home recently, though, just how badly Rowenna needs us to figure out how to  consistently help her.

For the first time in my life, I did not celebrate Christmas with my parents and brother. Rowenna had been having a stress reaction that slowly escalated over the 36 hours we spent with my family prior to Christmas. She went on some sort of hunger strike (a bad sign in a child who eats even buttered toast with gusto), she stopped sleeping, and she gnawed her fingernails and cuticles to a nub. We tried all the usual things that soothe her in times like this, but instead of calming her even a little bit, she just continued to wind up and up and up.

After even a relatively peaceful Christmas morning continued to stress her, we ran out of things to try, packed up, and drove home.

When we got home, she took a nap, woke up, and was fine. Started eating and drinking. Playing. Basically acted like the whole thing never happened. Hubby was incredibly ill a day or so later, so we thought maybe she just felt a little off, and moved on.

We already had a short road trip planned for New Years – a visit to my sister and brother in law, a place Rowenna has been several times before – so since she had perked back up and was acting totally normally, we decided to go. We intentionally chose a route that would allow her time to stretch her legs and to eat at restaurants she is familiar with and enjoys. She was fine until we got there, and then bam. Hunger strike. Wild mood swings. We did not do anything out of the ordinary while we were there (trip consisted mostly of visiting in their apartment, walks outside, and a trip to the park with just one unexpected, but short, event) and we did not do anything we had never done on a visit to their city. But still, she was stressed and we simply couldn’t figure out what to do. The second we put her in our car to drive home (no other passengers and surrounded by our luggage) she was smiles ear to ear and fussed for just 15 minutes of our nearly 13 hour drive back. She knew we were going home.

And here’s where I admit to something that I probably shouldn’t say out loud, lest I lose my Down Syndrome Mom card: today, right now, I would give anything – anything – for my child to be able to express something to me when she is so upset.

If she could say or sign “loud” to tell us the sound is too much, or “hurt” or “ow” to tell us her tummy feels strange, or whatever it is she needs to express when she gets so upset…if only she could right now. But she is not able to use words or signs yet to communicate this kind of information, so we try our best to read her signs and offer the things that comfort her.

I worry so much about her. I worry about what it means that she’s getting so stressed by things she’s done her entire life. I worry that we won’t be able to solve this mystery and she will continue to meltdown without us being able to prevent it, or at least soften the blow. For now, road trips are completely off the table.

And with this little spark on her way, I worry I won’t be able to find the right words to help her understand why her big sister sometimes needs to step back. Why we sometimes need to leave Christmas early. I worry about finding the balance between their unique sets of needs.

I’ve heard and read many times that when a family has a child with a disability, it’s a good goal to make everyone a spoke on a wheel, working together, and with equal attention to needs, rather than place the diagnosis as the hub and have family life revolve entirely around it. This makes sense to me and it’s definitely a goal we have as a family.

But now I’m seriously questioning my ability to do that, and making a good and happy life for both of my girls.

I know some of what we are seeing with Rowenna is simply just “I’m three” behavior, but without her being able to say, it’s hard to parse out what is “three” and what is “I hurt” or “I’m scared.”

With Little Sister on the way, we don’t have any trips or overnights planned for the next six months or so. We are hopeful we can help Rowenna over the next few months and help her to stay comfortable and feel safe when we are staying outside our own home. Fingers crossed.

And while she did melt down quite a bit on our most recent trip, she did have a fun afternoon at a park learning how to shoot off a rocket with her daddy.