Getting (some of) Eloise back

Once upon a time, we were new parents and freshly grieving Eloise’s diagnosis. I’d found groups with kids like Eloise and seen all kinds of videos and photos of older kids with overlapping genetic deletions and it felt like my worst nightmare had just happened.

I remember collapsing in the shower one afternoon, picturing a future with Eloise in a wheelchair seemingly oblivious to the world. I remember sobbing over and over again, “I am so sorry. I am so sorry baby girl. I cannot fix this.”

I look back at that mom with such tenderness. It was hard. In so many ways, it still. But the mom that I was, though grieving, was also strong and determined.

I vowed then that I’d do everything in my power to give Eloise the best chance at a full life.

I read to her constantly. I went on an extreme elimination diet to help her reflux. I tried to speak to her some in Estonian. I sang to her. I spent seemingly all waking hours feeding her or doing her physiotherapy (PT) exercises. I went to countless doctors appointments and therapies. I told her bedtime stories. I networked with other families. I pumped for 6 hours each day for 16 months with no more than 3.5 hours of uninterrupted sleep and hated every moment (but desperately hoped breastmilk might help something).

I fought and fought and cried and cried and hoped with all my American optimism that if I worked hard enough, then maybe Eloise’s path would be better than I feared.

Fast forward 5 years.

Puzzling out Eloise’s gross motor changes

Eloise still isn’t walking, but she has been doing DMI (dynamic movement intervention) intensives since January 2025. It’s a type of therapy meant for kids with profound gross motor disabilities who need far more than traditional physiotherapies offer. We are lucky enough that a pair of some of the best DMI practitioners in the world fly from Spain to Estonia several times a year to help a group of our kids. And, during the last intensive in November, it really seemed like it was only a matter of time until Eloise would be able to walk.

Now, Eloise just finished her 4th DMI intensive a few weeks ago.

Disappointingly though, at this February intensive, Eloise didn’t seem to progress much since the last one. I could say possibly there was some progress since November, but nothing really clear. We all noticed.

Not only did Eloise not show as much improvement between intensives, but I realized I had also noticed several other things quietly changing in the last few months with Eloise. And, before the intensive, I had no idea why.

• Eloise gradually losing interest in almost all toys except her chewing one.
• Eloise rarely reaching out for things or people anymore.
• Eloise no longer “escaping” from her potty by Eloise-crawling away when we turned our backs.
• Eloise increasingly staying in one spot on the floor instead of constantly moving around.
• Becoming harder and harder to get Eloise into pants.
• Eloise crying almost every time I put her arms into her coat.
• And, of course, physiotherapy more often than not is full of her crying. A lot.
• (Not to mention Eloise’s feet are sometimes blue and sometimes red and sometimes hot and sometimes cold. And her ankles that keep turning more and more inward. But those are things that have been happening for over a year rather than just the past few months.)

Liza Barrios, the trainer from Kinetic Therapy ES who does the intensives said something this time that really hit me.

“If you watch, you can see that Eloise wants to fold inwards. Which is why we have to work on getting her to extend more. If we get her gross motor skills to progress, much of her other development will also progress.”

As I thought more and more about that statement, pieces began fitting together in my mind. Suddenly, I had a new hypothesis that made sense of the changes I’d noticed with Eloise over the past few months.

And it meant we had quietly failed Eloise without even realizing it.

Eloise isn’t a regular kid

Our 2.5 year old is a constant chatterbox. He is a moving party. His highs are high and his lows are low and there is no way you are getting much quiet time around him. Try to hide in the bedroom or bathroom and he will search the house until he finds you and then will proceed to ask you 40 questions in rapid succession all of which he already knows the answers to. To call him a spirited, social creature is an understatement.

Our 6 month old started army crawling before he was even 5 months old. He’s happy until he’s not and then nothing will stop his crying other than holding him in your arms and walking around until you’re so tired you want to collapse.

Put them together and turn your back for a moment and inexplicably they seem to be wrestling like kittens, happily and gleefully pulling one another’s hair and shoving until one of them gets hurt. It’s crazy.

Which means, if one of the boys is unhappy, they will scream with a shriek so sudden and so loud that it melts any calm I had that moment. So watching one or both of them is often a constant exercise in vigilance and calming your nervous system.

But Eloise?

For over a year now, if you see her during the day she is usually calm, quiet, and seemingly satisfied. You put her on the floor, give her a toy to chew on, then walk away. For the last few months, if you come back to her 30 minutes later, she will usually be sitting in the same spot, contentedly (and usually silently) chewing on that same toy.

With Brian and I run ragged by the younger boys, it has been far too easy for Eloise to blend into the background because she isn’t actively demanding anything of us. Sure, if we come near to her she will snuggle in close. Or if we tickle her she may laugh. Or if we put her in a swing she will screech with delight. But she isn’t like the boys. She won’t scream until you pick her up or follow you into the bathroom or demand to go outside in the snow with no coat and gloves or complain if you don’t feed her noodles with pink sprinkles right NOW.

Which is the problem.

She isn’t outwardly demanding, but Eloise has just as many — or more — needs than the boys. And it’s up to us as her parents to ensure her needs are met.

Which is why, looking back at the list of what changed with Eloise over the past months, I can now say with some certainty that we didn’t realize that her needs were going silently unmet. And that breaks my heart.

Breaking down her gross motor

Parents of kids who are medically complex as well as profound neurological difficulties are, by and large, exhausted. The amount of mental math and preparation and scheduling and therapies and contingency plans and special equipment and backup plans you have to juggle are enormous. (It’s no wonder that a lot of research has shown that parents of medically complex or disabled kids have a much higher rate of depression and burnout.)

Hoping to save our sanity, over the years Brian and I have tried to perform triage on our “to do” list. Is this really necessary? How much better will this make her life? What is the cost to our life and is there any way to make it easier on all of us?

We’ve tried our best to figure out, based on the information we had, what was an Eloise necessity and what was a “nice to have.” Then we’ve worked hard to ensure Eloise is alive, as pain free as we can make her, relatively healthy, and consistently getting what she needs and often getting what is”nice to have” for her.

For us, in the gross motor development realm, we thought she needed to have at least 4 physiotherapy sessions per week by professionals to develop. And the rest were “nice to haves” (like stander, home exercises, walking practice and stretching in that order). But the reality was that if there were days or seasons where we were overwhelmed by parenting our other kids or illness or a combination of all of it, then we gave ourselves permission to skip some of the “nice to haves” for a few days.

While our logic made sense, we made some miscalculations.

To say it bluntly, if we want a shot at

• avoiding some very painful physical issues down the road,
• getting her to walk independently,
• Eloise participating more actively in the world around her

then we can now almost definitively say that while 4 home physiotherapy sessions per week and an occasional exercise or standing session with mom or dad during the week sound like a lot — they not enough.

We were wrong

You see, in retrospect I can now see that many of the things we thought of as useful additions to Eloise’s scheduled physiotherapy sessions with professionals — consistent time on her stander, home program exercises from her DMI intensives, moving her body, small practice sessions walking around the room — may actually be as important for Eloise’s wellbeing as her anti-seizure medication. Yet they were the first things we cut when life’s stresses became overwhelming.

Because these past few months we cut these things far more than we intended. And I believe it cost Eloise far more than we anticipated.

Why the “nice to haves” were actually needs

Years ago I reasoned that 3 gym sessions per week for me would be like maintenance, but if I did 4-5, I would start seeing results. So I thought that 4 physiotherapy sessions a week for Eloise would be enough to at least keep her at the same skill levels or advance some.

Because for most of us, life offers plenty of daily incentives to stand and sit and move and walk and stretch, so we don’t think about that part much. And, indeed, 4-5 physical exercise sessions every week would make most of us stronger.

But the problem is that Eloise is not like most of us.

Eloise doesn’t move in a wide range of positions unless the adults around her make her do it. So while 4 physiotherapy sessions are undoubtedly helpful, they are not enough. We can now see, as Liza the trainer said, that Eloise physically has begun to turn even more inward, and, likely as a result, Eloise herself has also turned more inward.

Without enough movement, which we have to instigate, then those things she used to do so much — moving around on the floor, reaching for toys and people, helping us dress her by straightening her arms and legs when we put them into sleeves and pants, joyfully participating in physiotherapy at least sometimes — get harder and harder. It’s because her muscles prefer more and more to be folded into her body. And as she folds together, those muscles get shorter and shorter, making reaching, moving, extending, walking more painful. In some ways, it is similar to aging — if you stop moving as much, then those joints and muscles start getting more and more difficult to move.

A blameless postmortem

As the reality of what has been happening has set in, I’ve vacillated between anger and fear and grief. Anger that I didn’t anticipate what happened. Fear that it may be too late to change things. Grief that we failed Eloise.

While it’s important to feel those feelings — and believe me, I have felt those feelings — far more important is the question of what are we going to do going forward to change things.

In the startup world, a useful concept we learned is called “a blameless postmortem”. It’s where you take an honest look back at what happened to get you to where you ended up. And, instead of blaming anyone, you come up with a plan on how to ensure the same poor result doesn’t happen again. And then you implement the plan.

Thankfully, we can do a blameless postmortem here, because we know what happened.

What happened?

Since the last intensive in November, a bunch of things happened that meant Eloise got a lot less of her movement “nice to haves”.

• After the intensive, the DMI set equipment was scattered in several locations so it took weeks of coordinating to get the equipment we needed to do a lot of her home exercises
• Eloise started kindergarten (preschool) and I chose to focus on acclimating and learning the rhythm first before bringing her stander there — which meant there were weeks where she wasn’t having standing sessions during the week.
• Eloise’s caregiver had two unexpected bouts of serious illness which meant we had no help for 5+ weeks in total. In part because we thought her caregiver might return any day, and in part because Brian and I felt quite stretched between multiple illnesses, an intense work season for Brian, and watching the boys — we did not prioritize Eloise’s daily time in the stander nor home exercises nearly as much as she gets when she has a fulltime caretiver
• Eloise had ear surgery and doctors recommended no twisting or turning or tough exercises for 2 weeks

When I look at that list, those “short breaks” we took due to unexpected circumstances ended up adding up to — shockingly — roughly 11 weeks with no stander and 10 weeks with very few daily exercises. And it had a very noticeable affect on Eloise.

We didn’t mean to, but we failed her.

Was she still fed? Yes. Did she still get sleep? Yes. Was she clothed and did she get therapies and time in her swing and even sometimes snuggles when we could sneak them in? Yes yes yes and yes.

But she needed more.

Our structure, our backup plans, our resources, our energy, our network — they weren’t enough in this season. Eloise needed more than passive care. She needed active movement. We didn’t realize.

But now we know. Eloise deserves more.

Is the damage irreversible?

This is the question my heart has kept asking. Can we get her movement back? Can we get her interest in life beyond her tiny little square back? Can we get her walking momentum back? Can we get some of the Eloise that we lost back?

The optimist in me wants to say yes — if we have access to help consistently. If we and all the adults around her are willing to push Eloise to do the hard stuff. If we are vigilant to build in movement rhythms for Eloise that we do not sacrifice even when everything falls apart. Then maybe we can regain some of that lost ground and, if we are lucky, even advance some.

But life has a way of throwing monkey wrenches into your plans, like they did between the last two intensives in ways that none of us anticipated.

Why I feel hopeful

Weirdly, this morning, I felt full of hope as I watched Brian do some short stretches and exercises with Eloise as she cried and cried.

https://youtube.com/shorts/cLL4tBjs450?si=QP5m0YwlalMnJ85d

Why would I feel hope watching Eloise cry? Because before the intensive I didn’t know why she cried when I put her arms in her sleeves. I didn’t know why she had stopped moving around on the floor. I didn’t know why she stopped escaping the potty. I didn’t know why she wasn’t reaching for toys or us as much.

But now? We have a pretty strong hypothesis of what happened.

Little extra movement outside normal physiotherapies = An Eloise who turns inward more and more

What gives me hope is that maybe the opposite is also true.

Lots more extra movement outside normal physiotherapies = An Eloise who starts to turn outward more and more, towards life and movement

Brian and I spent a lot of time discussing the changes we’d seen over the past months and then researching and brainstorming the best ways to counter Eloise turning inward.

We got creative to make sure Eloise has enough equipment both at school and at home. Brian and I are both doing exercises and stretches with Eloise in the morning and at night. (We have also implemented a policy that some exercise is better than perfect exercise.) We are trying to figure out our options if we find ourselves without help for extended periods of time again. We have a new schedule that we and Eloise’s caregiver will implement every day to make sure Eloise consistently gets standing time and even more excercises and movement than she’s ever had before on a daily basis.

I’m sure there will be a lot of crying as we stretch Eloise literally and figureatively. But the Mallory 5 years ago was a mom willing to do the work to make sure Eloise had the best shot at a full life. The Mallory and Brian are those same parents today. And we are lucky enough to have found therapists and caregivers and babysitters who are also willing to do the work (and help Eloise do the work) to push through the tough stuff. With enough effort, I think we can do it.

So today I feel hope. Maybe this can be reversed. Maybe lost ground can be regained.

I think, I hope, I know we are not too late.

The important thing is now we know so we can do better. And we are so incredibly lucky that we caught things so early and may just be able to make a difference here.

Let’s see what the next few months bring.

With all our love and hope (and some of our exhaustion),

Mallory, Brian, Eloise, K, and Baby G