Both beautiful and heartbreaking — Part 2

This is part 2 to the story of Eloise’s baby brother K entering our lives. You can read Making his entrance — Part 1 here.

Over the last few years, I’ve noticed many posts in local facebook mom groups asking some form of the question “What kinds of local playgroups or activities do you recommend I go/do with my xx month old?” I’ve often read these questions and felt confused — how in the world do people have time to think about these things? And then do them?

The concept has felt so foreign that my mind has struggled to understand it. I asumed maybe we were just boring humans, or that our brains worked differently. But now, at not even 2 weeks with Baby K, it makes so much more sense.

It’s because there’s a huge difference between surviving and thriving. And, Baby K’s arrival has accidentally highlighted the fact that, up until now, our constant daily state with Eloise has been that of survival. Thriving has never been a part of the picture.

Comparing Eloise and Baby K’s starts

I didn’t see the moment Eloise was born. I wasn’t the first to cuddle her. To stroke her brow. To hear her cry. To feed her. To dress her. To take her first photo. Neither was Brian.

For Baby K, we were the first for all of this and more. We held him first. Cried over him first. Fed him first. Cuddled him first. Clothed him first. Took his photo first. We got those moments — and they were as magical as we’d imagined they’d be with Eloise.

But the differences don’t end there.

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With Eloise, after a 5 day induction process by myself, she was born via emergency c-section. From there, she and I stayed in the hospital during the COVID pandemic without Brian for another 10 long days that felt like absolute hell.

This time, Baby K and I were in the same hospital for 4 days, 2.5 of which Brian was able to also be with us. And, for the most part, that time was precious and slow and sweet. (We stayed a little longer than initially planned because a few of his blood tests were borderline and he needed a little extra monitoring.)

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Once Eloise and I finally arrived home, though, the troubles didn’t end.

• By a few days of her birth — already in the hospital— she was becoming increasingly more fussy after feedings.
• By week 1, I was already in extreme pain from chapped nipples that came from exclusive pumping around the clock that wasn’t really working — which also was taking me 10 hours per day. (It took me around one month, many consultants, 5 different pumps, and hours of research to discover I had something called elastic nipples which meant I needed different tools in order to pump well. And by that time my supply had already permanently dipped because I couldn’t remove milk effectively.)
• By week 2, Eloise was crying for hours a day and already taking her entire awake time to eat, and still wasn’t getting enough. And I was getting less than 4 hours of sleep despite Brian and I taking Eloise in shifts.
• By week 3, I’d already cut out all the major common allergens from my diet and saw some difference with Eloise’s screaming.
• By week 6, we got her devastating diagnosis and our worlds fell apart.
• By week 7, the parade of continual doctors and therapist appointments had begun.
• By week 8, I was on an extreme total elimination diet that continued in various forms until Eloise was 11 months old in order to try to manage her pain.
• By week 10, Eloise was still eating her entire awake time and had stopped eating from anyone else and would only fall asleep if it was on me — for only 32 minutes at a time.
• By week 12, her sensory issues had appeared and she couldn’t handle any stroller, carrier, car ride or time outside the house without a complete meltdown that ended in hours of horrible screaming with thick saliva that threatened to close her airways.

The troubles continued far beyond that. Eloise cried from pain a lot. I cried from despair a lot. I blogged through my feelings on facebook, looking for emotional catharsis and practical support. Kind friends and strangers swept in every weekend to try to cross something off our long list of things to do to help alleviate our stress. We made it through that season by the grace of God and by those who supported us in our virtual Facebook community — comprised mostly of old classmates, family, friends, and coworkers.

Finally, by 9 months, much of Eloise’s struggles — specifically her extreme food intolerances and screaming from that pain — were starting to get better.

But then at 10 months her seizures started. That’s when and we discovered she was missing SCN1A, the gene associated with Dravet syndrome — the most devastating form of genetic epilepsy known to man.

Any one of those issues would cause extreme stress to any family, but we had them all — at the same time. Brian was miserable. I was miserable. Eloise was miserable.

Life was not full of joy. We were not doing well.

But this time?

Baby K’s first few weeks

Even these 14 days have been an entirely different world with Baby K. Suddenly, so much of the advice people gave us for Eloise on gas, on breastfeeding, on development, on soothing, on sleeping, on skin to skin, on baby carrying so I could get things done — now they just make sense. And many of them work.

With Eloise we tried suggestion after suggestion after suggestion after suggestion with each of her issues and, usually, nothing worked. At the time, I felt like a failure. Not only was my baby crying all the time, not only was my baby genetically abnormal, but I couldn’t seem to apply the most basic of remedies and it make a difference in her life.

Just in these last two weeks, though, with an entirely different baby in our lives, it’s suddenly clear that there was nothing I was doing wrong back then. We weren’t incompetent or bad parents. Eloise was just special. She was a square peg we were trying to fit through a round hole. Sometimes a remedy would help, but really the world and its solutions just weren’t designed with her in mind. And I see now we were trying our best — the failures were not our fault.

So far, Baby K has been breastfeeding like a champ. He was back at his birthweight in less than 3 days. Baby K can usually be soothed. Baby K’s gas troubles seem to already mostly have resolved. Baby K recognizes and responds to my voice and prefers me. Baby K is already developing and working towards milestones. I’m usually getting 6-7 hours of sleep per night, enough that I only need one cup of coffee and no naps. I mean, it’s early — if colic appears, it usually kicks in at week 3 — but so far. It’s a whole different world.

“Getting stuff done”

When Eloise would only eat from me or sleep on me for several months, many dear friends and family would suggest I put her in a carrier so I could get stuff done. No matter what I tried, though, it just didn’t work.

Now, though? I think it’s going to be possible with Baby K. There are long stretches of time already that he is awake and just wants to be near me but is doing nothing else. With Eloise, she was eating the entire time she was awake, so I couldn’t. Plus, I was pumping every 1.5-2 hours which also made it nigh impossible.

Last week, I had a little postpartum healing scare and decided to go to the emergency room to be safe and get it checked out. My initial instinct was to feel panic and ask Brian to come with us, because I didn’t think I could handle it all on my own. And, then, I remembered Baby K is not Eloise. I realized I could do it. Sure, I had to nurse him in the car to calm him before we left. But he slept in his stroller or ate calmly the entire 3 hours we were there. No stress.

With Eloise, though? It would have been impossible for me to handle her on my own for that long. With pumping multiple times and washing pump parts and feeding her taking both of my hands and full lap and her refusal to be in a stroller or carrier and usually screaming the entire time we were out, it would have been close to impossible to do it on my own. The planning it took for even a short outing, and the stress and anxiety that came with it was enormous.

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The day Baby K and I came home from the hospital, I just hopped in the car and took him with me for some quick grocery shopping. It was then, in the parking lot as I nursed him, it really hit me how incredibly hard — and different— our journey with Eloise was and — realistically — may always be.

I cried.

I cried from gratitude that this journey, so far, is so different.

I cried from grief that Eloise’s start was so hard for her.

I cried from sorrow that our time with her was about, and still often is, about merely surviving from one moment to the next.

I cried from overwhelm that it may always be hard raising Eloise — that being a caretaker may be a far better descriptor for our roles in her life than that of a parent.

Eloise is a joy. And. She is hard.

Just last week, one night, Brian and I switched kids for the first time since I got home from the hospital.

I fed Eloise and I was almost surprised with how much focus and mental energy it took in comparison. Especially because she was having a tough day — which seems to be most days these last months. She arched her back. She screamed. She broke out in giggles. She broke down in sobs. She ate and then stopped. She grabbed her water bottle and poured liquid all over her and the floor. I gave her a spoon of food and she took it and the food landed everywhere but her mouth. I turned my back for a few moments and she knocked things off the table onto the floor. I tried to go check on Baby K in the next room and she started screaming.

And that’s just one normal, everyday activity. Which sometimes goes great. And, sometimes, is a complete disaster that brings you within the limits of your mental energy. The same troubles apply to going potty, playing with her, trying to practice any of the multiple therapies she goes to every week.

Life with Eloise now is definitely better than it was her first year but, still, is often really exhausting, especially if we’re sleep deprived — which we usually are. (However, this most recent sleep medication, Clonidine, has been working miracles most nights.)

Thriving vs surviving

Baby K’s arrival has accidentally highlighted the fact that living with Eloise has nearly always been one of surviving. With Baby K, we have room to see a path where we can play and help him grow and even thrive. There’s space. There’s time to think. There’s time to breathe. There’s time to dream. It’s such a surreal experience to have a kid where he’s awake and there is no agenda I need to complete — he eats enough and his development is on track and he isn’t screaming, which means I can just enjoy him. Or play with him. Or talk to him. Which means now I see what those parents were asking about on the forums — when your kid is awake and has nothing to do, what do you do with them?

It makes my heart extra sad to realize we’ve never really had that space with Eloise. There’s always some goal of survival — get her to eat enough. Get her to sleep enough. Get her to practice physiotherapy enough. Get her to explore textures and objects for occupational therapy. Nothing is about dreaming what she could become some day. Everything, in some form or fashion, is an attempt to keep her from falling too far behind.

Last week, I reflected on this as I sat in front of her on her little potty, ready to restrain her in a flash if she tried to throw herself off like she’s been doing recently. As I sat there, staring at her beautiful face, I pulled her close, kissed her forehead and had a good cry.

Life with her has been beautiful. And, I realize more than ever, it’s also been very very very difficult.

We chose the hard way

I must mention, however, that we chose the hard way in some aspects of her first year. For example, I could have thrown in the towel on trying to breastfeed or pump early on. We could have also chosen to get her a feeding tube from the start to make life simpler for our family. Those two choices alone made our lives many, many times harder. But we also knew that we would’ve regretted not choosing the hard road, because these choices were our best shot at seeing if early decisions could make a difference for her. (I’m already guessing the breastmilk may have delayed her seizure onset by many months and very well could have already saved her life several times over.)

I’d heard from other parents whose first kid was disabled that the babies that came after were so much easier. And. That the experience of raising a “typical” child brought with it so much grief.

I’m in the thick of that at the moment. And now I’m wondering if, to varying degrees, I may always be struggling through those weeds.

I guess I’ll have to wait and see.

This journey so far has been both beautiful and heartbreaking. But I’m not sure I could have really enjoyed and savored this time if not for Eloise preparing the way. Because she really did, in so many ways.

Next part? How Eloise prepared the way.

All our love,

Mallory, Brian, Eloise, and Baby K