I realize it’s been about 6 years since I’ve written anything here; I’ve had writer’s block, but we’ve also been busy. The twins are SEVEN and in FIRST grade now! My “toddler” is now TEN, so we’ll just call him “L.” They spent most of 2020 and all of 2021 doing school at home, thanks to the pandemic. Once they were all vaccinated, they were able to return to school in-person, and they are all so much happier now. A and L have made friends and are usually pretty excited to go to school together.

In February, B had bilateral femoral osteotomies and right hip bone graft — basically her tight muscle tone had pulled her hips out of their sockets and were not growing properly. The orthopedic surgeon cut the heads of the femurs and put in “scaffolding” to help the bones grow with the proper angle. The surgery worked well and changed her shape — she has hips now! Recovery was very slow, though. She spent 7 nights in the PICU trying to get her pain and muscle spasms under control. The first night post-surgery was horrific; she screamed for about 6 hours while multiple doctors, nurses, and nurse practitioners tried every pain medicine possible to calm her down. She then slept for about 36 hours, with a few moments of whining in pain every 4 -6 hours until she could get more medicine. The rest of the week, she got slightly better every day, but the nights were still so hard. It seemed like they could not figure out the right combination of medications to alleviate her pain enough for her to sleep. This lack of sleep continued for the next 6 weeks. She, and accordingly, we, did not sleep well 90% of the time during her recovery. Some nights she’d vomit at random. Toward the end of her recovery, she ended up with pressure sores on both heels from rubbing them on the foam pillow that kept her legs separated and secured for healing (she didn’t have casts, which is good, but the pillow was not as great as it sounded).

This morning, B had an awards ceremony at school; I watched on Zoom. She’s in an ESE class and loves her friends and teachers. She won an award for being a good friend, and her teacher said that she lights up the room every time she walks (rolls) into it. I am so proud of her, because I know she works hard. And she DOES light up every room. People call her “Smiley,” and everyone who knows her loves her. But I burst into tears watching these awards. Other kids received awards for learning sight words or excelling in math, and I don’t know if those are things she can do. She uses an eye gaze system to communicate, but she’s still learning it. I know that she knows some things, but does she look at the word “door” and understand what it means? Can she add 2+2? She works so hard, and everyone loves her because she’s adorable, but what about when she gets older and isn’t a cute little girl anymore? What will she be able to do? How will her life look?

It’s hard not to fall down the rabbit hole of what-ifs, but it happens sometimes. That’s kind of the life of a parent of a disabled child. We have to be strong and positive, but that façade can only be kept up for so long. When you’ve been told multiple times that your child may die in a number of ways (epilepsy, aspiration pneumonia, kidney failure, etc), you learn to put those painful thoughts in a box in your brain and try not to open it, tiptoeing around it on a daily basis. But please know that we’re always scared. We’re always wondering what might happen next, what will the future look like? I know that things could always be worse, but envisioning your child’s future when they will likely be dependent on you for life is really daunting. I’m constantly wondering how the future will look, what she will know, what surgeries she’ll need, how will we care for her as she gets bigger? Will she be able to wait until adulthood to need a kidney transplant? If she does, will her twin sister agree to donate her kidney? If she doesn’t, what will we do? What if she dies before I do? What if I die before she does? Which is worse? My wish is that she and I will die at the same time so she never has to live without me, and I never have to grieve her. If that sounds dark, it probably is. Now that I’ve dipped into darkness, I have to get back into the light to put that smile on my face when I pick her up from school and watch her smile and say “yeah yeah” as she’s wheeled down the hall toward me.

That’s what I’m currently listening to…my husband snoring with Orphan Black in the background.

Our babies are 17 months old!  Holy cow!  Little A is walking, running, wandering, all over the place.  Our toddler is really a big boy now…he loves Coldplay more than any kid has ever loved Coldplay.  He says that Chris Martin is at our house, eating dinner with us, etc.  He talks constantly and enjoys getting in his sisters’ faces and screeching.

Baby B is still in her loop of therapies and doctors’ appointments.  She saw the GI doctor, who, between exclaiming, “oh, she’s such a flirt!” and “she’s flirting with me!” (ew) mentioned the possibility of a GI tube for feeding.  He said that many parents do this because it’s more convenient for them to tube-feed a child who’s having feeding issues.  She’s trying to eat more and she’s getting better at it…sometimes.  We’re definitely not going to consider that unless she’s losing weight and not thriving.  We’re also going to see another GI doctor who isn’t so creepy.

She also went from “she’ll definitely need a new kidney in 3-5 years” two months ago to “I think she should be able to make it until age 10 without dialysis or transplant.”  So basically, it changes constantly.

Her recent brain MRI results show the large areas of damage, mostly on the left side and in the center of her brain.  Seeing those images is so scary.  She really does amazing things, much more than it appears she might from the images.  She has a lot of grey matter intact, so that is positive.

Other than that, we’re SSDD here.  Other people dream about going on vacation, but I dream about returning to legal work.  We still can’t figure out how to make that happen while B has so many appointments and therapies, but maybe at some point soon.  Our son is going to pre-k in the fall, so that’ll really change the daily routine here.  I look forward to seeing him interact more with other kids his age and learn how to follow rules a little better.  He’s so headstrong and argumentative; it’s exhausting.  That’ll be the hardest part for him, I think.  He already can read quite a bit, and he knows so much…he just has to figure out how to listen a little better.  But hey, we probably all need to learn that lesson, too.

I guess I needed to take a break from writing the blog for a while.  Once I got out the traumatic story of how my girls got here, I felt so much relief.

Now…my girls are great.  We have a routine, and life isn’t always bleak.  Baby A is walking, saying lots of words very sweetly, like “bawwwwwwllll” (ball) and “yesh” (yes), and exploring everything she can.  Baby B is grabbing toys, smiling sweetly, and saying “Hiiiiiiiii,” “ba-ba,” “Dada,” “bru-ba” (brother) and (if I’m lucky or if she’s really upset) “Mama.”

Big brother is officially four and a half.  He loooooooooves Coldplay.  I mean LOVES.  He wants to listen to Coldplay (all the albums, thanks to Amazon Prime streaming) all the time, watch Coldplay videos on YouTube or through Vevo, dress like Chris Martin, talk about Chris Martin, and pretend that Chris Martin is visiting our house and they are putting on a concert together.  It’s toooooootally normal.

I’ve also been able to connect with another TTTS momma who has gorgeous girls who are similar to my beautiful babies.  It was so nice to meet someone who KNOWS.  I immediately felt like someone understood what I was going through, and it made me feel a little better.  It was weird, but I felt like seeing my new friend with her girls just proved that we can get through this.  Everyone has their own struggles.  We’re so blessed to have our sweet babies here at all; they are truly miracles.  It took seeing another mom getting through to realize that I could, too.  I’d never look at her and think that she should be sad about the cards she’s been dealt, so why would I look at myself the same way?  Sure, things suck sometimes, but hey — I’m mom, and I have to do everything I can to make my babies’ lives better.  Whether it’s buying a Coldplay poster, reading books, or advocating for a corner chair, it’s up to ME to do it.  I don’t feel as sad that I’m not working as a lawyer anymore (except when I look at our bank accounts :P), because I know I need to be doing exactly what I am doing right now.  Yes, there will be days that I’ll feel down, but they are fewer than before.  Little B is OK.  She amazes every therapist and medical provider she sees.  Her huge smile makes other people smile, too.  Sometimes, that’s all I need to get through…that and a serenade from my Coldplay-loving son and a sweet “I la yooou” and kiss from Baby A.

Our precious girls are eleven months old now!  Little B seems a bit happier overall, and she’s starting to gain more use of her hands.  She can grab things and play with some toys.  We’re still working on feeding, as she has trouble swallowing unless she’s fully supported.  We’re trying to get a feeding chair for her to make it easier for her to eat.  Last week, we went to Shriner’s Hospital in Tampa for an evaluation.  We were really impressed with how kid-friendly it is, and everyone was so kind to us and sweet to the babies.  The nurse practitioner ordered x-rays and said that little B’s spine and pelvis look good so far.  They will continue to monitor her to make sure that she’s not getting out of alignment.  In the meantime, they prescribed a foot brace so her feet won’t stay pointed.  Apparently, that is one of the issues that kids with cerebral palsy have, so we want her to be able to stand and (hopefully) walk normally.

She also went to the ophthalmologist on Monday.  My husband’s parents live close to the Palm Beach Gardens office of Bascom Palmer, so they met up with us to help wrangle the other kids while I went into the office with B.  The doctor (rightfully) let me have it a bit about not patching her eye like we should.  Apparently, because her brain is relying so much on her right eye, if we don’t patch and force her to use her left eye, she could go blind in that eye.  He had a hard time seeing her optic nerve to know if it’s paralyzed or has damage that would mean that patching wouldn’t work, so she’ll be undergoing an examination under anesthesia in a couple of months.  If he decides the time is right, he may take that time to tighten the muscle in one or both eyes so they are straightened.  However, he told me that she may have to patch until she’s ten.  TEN YEARS of age.  This little smiley baby hates the patch and shuts down when she has to wear it, but I have to really get better at patching her eye so she’ll be able to see out of both eyes.

It’s so hard to remember to DO all the things that she needs…and that the other kids need.  We’re doing slightly more than surviving, but do I brush my toddler’s teeth twice a day?  No.  (Although he went to the dentist today for the first time and had no cavities!)  I’ve never brushed the girls’ teeth.  Oops.  I’m lucky if the kids get two baths a week.  If we eat a home-cooked dinner, it’s a huge accomplishment.  Our house is a mess…always.  At some point, maybe it’ll get easier?  Maybe I’ll get better at taking care of myself, our house, and our kids.  I’m always behind on everything.  I’ve actually thought about making myself a sort of “chore chart” that I can check off everything that needs to be done and try to get it all done each day.  It makes me sad to think about the fact that I NEED this.  How can it be so difficult to remember to give a baby medicine every night (although we usually get that one)?  Answer: very difficult when you have other kids to think about.   But I’m working on it.  Realizing there’s a problem is half the battle, right?

It’s been a while since I’ve written, but the days melt together, and then you realize that a month has passed.

I got out of the house today, dressed in my business casual, to drive an hour for a pro bono case I am working on.  It wasn’t anything special, just an observation, but I felt a little more like me again.  I think showering, wearing makeup, and just leaving the house alone makes a huge difference.  I miss my kids when I’m gone, but I really do think it’s time to try to do some work, even just part time.  I need that part of me.  It might make me a bad mom, and yes, I know that they’re only little once — but I’m happier when I can get away for a little bit.  I can be a better, more appreciative mom when I’m doing something else with my brain.  Now to just figure out how that will work out.

Babies have had croup.  They are feeling better, I think.  Baby B was super-needy this week, but she’s now allowing us to set her down.  Baby A is all over the place, bouncing and crawling as much as she can.  They are both gorgeous.

Big brother is now 4; I meant to write a post for his birthday, but I forgot.  He’s so sweet.  He held Baby B’s arm in her seat when she was crying in the car.  I can’t believe how big he is.  He’s so smart and helpful, too.  I look at him every day and remind myself how lucky I am.  I’m so lucky to have all of my sweet little ones.  Guess I should get to bed and get to snuggling!