I don’t get to choose when it happens. Poor Eric came home this morning from running errands to Kiran and me snuggling in the chair, tears streaming down my face.

I can’t even answer the question “what’s wrong?”

Because it’s nothing. And everything.

We have had massive changes in our lives this past year. Not only have I started working full-time for the first time in Kiran’s life, but Kiran has also been living with us full-time since mid-October.

Since Kiran was two years old, I have had 48 hours every-other-weekend to be someone more than mom. I have had that built-in caregiving break. I have been able to meet up with friends without having to schedule care, clean the house without feeling guilty that he’s bored, run errands without the extra 82 steps required when he is along for the ride. I have been able to get out of town with Eric or with friends and just relax.

It has been a massive adjustment. It is becoming our new normal, but I am still figuring out how to make sure I am okay mentally, emotionally, and physically.

I was reminded today that this is a marathon and not a sprint. I have to not only continue to find the joy in even the hardest caregiving moments, but also acknowledge the hard that it all is. Breaks are needed, and we have to get more creative in how we make sure we *both* get them. Eric has taken on a lot more caregiving this year, too.

And the burnout is real.

Today, I spiraled because I’m scared. And overwhelmed. This is the first time I have ever been a mama to a disabled ten-year-old. And there are always the new, hard things we have to figure out. And I was feeling like I don’t know how I’m going to do this forever.

There is good news here. I know how I’m going to do this today. And it’s gonna be a good one. And the rest, we will figure out as it comes.

We always do.

It’s my birthday week. It’s a thing in our family – kinda. It’s just a week where we try to make each day just a little special, different. We don’t worry (as much) about spending the money to order a meal in or have a fancy coffee. It’s just celebratory and fun.

Tonight, despite having our regular Wednesday date night respite care scheduled, I hadn’t made any specific plans. Until I stopped to take my 10 minute lunch break just before noon. Then, suddenly, I remembered Clyde’s Fine Diner has oysters and half off bottles of wine on Wednesday nights. Eric has been craving oysters for awhile – and hey, I love oysters too. I started getting really excited for the evening!

As best laid plans do, not even an hour later I heard from our provider (I am not mad or disappointed or anything about this, by the way) that she is sick today. Really unwell. She needs to rest and take care of herself and mend, of course. Plus, we don’t want that garbage in our house (Kiran and I are both exposed to it on the daily at our schools; we don’t need extra).

Still, there is disappointment. So we find ourselves in a typical evening routine. As I’m showering Kiran, trying to not feel the drudgery of the task, I remember the acoustics in his bathroom are perfect for a one-woman concert. And no one appreciates my singing like Kiran. He even joins in sometimes.

So, we make it fun. We make it special. Eric especially stepped up, as he is currently in the kitchen making me some fancy swordfish dish and opening a bottle of red for us to sip on with it.

It’s really not so disappointing, having an extra night at home with my family. Yes, I am doing laundry. Yes, we had to handle the daily caregiving tasks (my mom washed the syringes before she left and Eric blended/filled them for tomorrow, thank goodness!). Oh well. It’s cozy, the couch is comfy, the boy is already happily in bed and likely sleeping.

It is well with my soul.

On our way home from Iowa City after a morning cardiology appointment for Kiran.

First of all, no wonder he’s feeling heavier these days! He’s 70 pounds! This is great news, as it’s right at the average for his age. This means we are on the right track with his diet/calories, and he’s growing as he should be.

Heart is stable with no significant changes from six months ago. The plan remains the same – Kiran will go to the cath lab in June. Decisions will be made on the spot when that happens but likely some ballooning, perhaps placing a stent, maybe even a stent with a valve. He will need to stay overnight in the hospital since he will be intubated for the cath procedure.

Kiran hasn’t been in the cath lab since he was two years old. We have been so incredibly lucky! Dr R is hopeful that the interventions they decide on in June will give us another five years or so which will lessen the amount of significant interventions needed in his life.

Kiran was a star patient as usual, with the echo and EKG technicians both commenting on how easy he made their jobs.

All in all, though not the way I would have chosen to spend my morning (6 months ago Holly made bad decisions), it went exactly as I had hoped.

And man, I am one lucky mama. He really does make the job easy.

I remember her, bursting into tears, unable to remember the French term the doctor had just used to describe the condition of her unborn baby’s heart.

I remember her, painstakingly measuring portions of food and taking multiple walks a day, because gestational diabetes was something she could control. A way to keep the baby safe.

I remember her, on those daily walks, preparing her mind and heart for a devastating loss because it was the only way she knew to prepare for what could be in store.

I remember her, feeling overwhelmed and alone in the early days, filling out piles of paperwork, calling countless doctors, navigating insurance and medical bills, learning new terminology, wondering all the while if her baby boy’s heart was the only concern.

I remember her.

She was exhausted in a way that’s hard to describe, a way that hasn’t completely dissipated, even now. She was determined to do right by her boy every step of the way, even when those steps felt like giant mountains blocking her path. She was resilient, armed with love, coffee, and late night google sessions.

I remember her, the day she had to let go, put her boy’s life in the hands of a surgeon, unsure if it would be the last time she’d ever see him.

I didn’t know, that first year of Kiran’s life, if we would make it to his first birthday. I didn’t dare dream we would ever make it to today. I just got to tuck in my nine year old boy for the last time. Tomorrow morning, he will wake up, and he will be in double digits.

I am bursting with joy and more emotional than I realized I would be.

Because I remember her. I am her. It’s been a rough journey but one I would never stray from. I can’t believe I’m about to have a ten year old, and I can’t believe how incredibly blessed I am to have him here with me.

I say it all the time, and I mean it: He’s the best human I know. He’s my favorite. I envy his unabashed joy and peace and go-with-the-flow attitude. I’m grateful that who he is makes my job as his mom so wonderful.

“I could never count all the ways that you change me, baby. Every day the sky is a deeper shade of blue when I’m with you.” (JJ Heller, When I’m With You)

I think it all just really hit me when putting Kiran to bed tonight. I sit here now, minutes later, tears in my eyes, reflecting with a smile, thinking ahead with a whole lotta uncertainty.

I am SO incredibly lucky and blessed that I got to be the main caregiver, a stay-at-home mom (and yes – student for many years too) for almost ten years. I only got to do this because I was willing to sacrifice things, like an actual bedroom the three years we lived with my parents. And because I had people who decided they love my son and me enough to support us while I pursued and finished my grad degree.

I am lucky. And I am so thankful.

I continue to be lucky that those same people are willing to step up now and take on some of the daily caregiving duties, like school drop off and pick up. Since my job has a rather hefty commute, I won’t be able to take that on anymore. (And while it makes me a tiny bit sad, I will NOT miss the school parking lot!)

I don’t know what my life is going to look like, being a working mama. I know that it will challenge me in ways I have considered and ways I have yet to consider. Striking a balance will be hard. Letting go of caregiving duties will be hard. I have had practice, and that will help, but this is the real deal.

I’m excited – and ready – to have something that is mine and separate from being Kiran’s mom and caregiver. I know I have written about that before, and it remains true. It also remains true that he will continue to be my priority, and I just don’t know how that will look all the time.

I suppose that’s okay, and I will find my footing. I am really happy I will get to come alongside other families and support them in their communication. Coming up with family- and child-centered ideas and strategies fulfills me in a way that’s hard to explain. I want to be a clinician who really sees these kids and really sees their families. I think that’s one of the benefits of the perspective I bring to this table.

A part of me is certainly sad, tonight. It’s the end of an era and the beginning of something new.

I really am so lucky to have this life.

I’m not sure I was ready for this. So much is already shifting in our world, with me starting work in just a few short weeks that will go by in the blink of an eye.

But man, this kid? He’s growing up. And while so much of our lives is atypical and different, and my motherhood is just – more – there are some things that are the same.

Like – I had to buy Kiran deodorant this week. Not something that was even on my radar, until it had to be. Ugh. He’s getting so big, and it was time. Thankfully, like so many things in his life, he has been completely unfazed by this change.

He is choosing more alone time. While he has always sometimes chosen to have alone time when given the choice between that and hanging out with me, he is choosing it more often now. Very typical. A little heartbreaking.

But today – today, Kiran was baptized. This has been a long time coming. When he was an infant, he was baptized in his father’s religion because it was required for him to even attend religious gatherings within that religion. I have wanted to get him baptized in my faith – Christianity – for awhile. Barriers existed that I won’t get into because it isn’t a relevant part of what today held.

Today, friends and family gathered with us, attended a church service with us, and witnessed his baptism. We all celebrated afterwards with lunch at our house. It was meaningful and beautiful, and I couldn’t have asked for a better day. Kiran did fantastic – it was a “scoop and pour” baptism, and he flinched a bit with the first bit of water but engaged in the rest of the ceremony like a champ. I am so thankful it was on the end of his week at Vacation Bible School, because he was surrounded by the music, the love, the community of our church all week.

It was so important and so, so good. It amazes me, sometimes, to see him coming more and more into his own independent self, because it’s always existing in juxtaposition with his care needs. It’s a new phase of parenthood and a learning curve for sure. I’m here for it, and I am so thankful we have so many people along for the ride loving on and supporting him – and us.

I will be honest: I do not yet know how the bill that was passed yesterday will impact my family. What I do know is this: Medicaid is more important than many people realize. Cutting Medicaid not only impacts families like mine, who include disabled and medically complex children, it will also impact families with few resources, medical professionals who rely on Medicaid payments to keep their practices afloat….the far-reaching implications of this will in no way be positive.

I will give one example of how Medicaid provides help/support but in no way gives families like mine a total free pass handout. And I would argue the supports should be greater, because the expenses are still great even with the help it provides.

When Kiran was born and still in the hospital being monitored for his heart, I filled out a huge form to have him put on the Health and Disability Medicaid Waiver Waitlist.

He turned two years old before a spot on that waiver became available.

The waiver provides things like respite care, where we can train people on Kiran’s cares, allowing us to have a break from the 24/7 caregiving his condition requires. It also provides a certain amount of money every year for necessary vehicle and home modifications required to safely care for him at home.

Many of you reading this already know the story of the vehicle modification we completed for Kiran last year. I was transparent about the financials involved in this undertaking. The total cost of the vehicle modification was essentially the cost of the vehicle itself: $40,000.

Do you want to know how much Medicaid covered for this project? About $7,000. Leaving $33,000 for our family to figure out how to come up with.

And since then? Because our vehicle doubled in value, our monthly auto insurance cost also doubled. There is no financial help for that; it is just one of many additional expenses families like ours have to cover. We don’t have a choice.

Through no fault of ours, Kiran just happened to be born special. With a very rare genetic condition that makes him who he is, and who he is just requires more: More care, more attention, more therapies, more medical specialists, more equipment for daily life activities.

He’s expensive. We have been so thankful for the Medicaid waiver and having Medicaid as a secondary insurance for him (Yes, we have primary insurance, too!). I’m not sure how that will be affected for families like ours with this bill, but I do know this: If we lose Medicaid, we are unlikely to be able to stay afloat financially for long. Even with family/friend/community support, even with being financially prepared with decent savings. Just getting the equipment Kiran needs to eat every month would cost $300.

So.

If you are reading this and you don’t believe healthcare is a fundamental human right. If you are reading this and you don’t believe that my son is fully human and, without question, should have access to the best medical intervention, therapeutic intervention, and equipment needed to maximize his quality of life.

You can stay. Please keep getting educated here, if that helps. But forgive me if I choose to no longer put effort or surround myself with people like you.

Right now, I need to be around the people who value my child’s life, health, happiness. And believe we shouldn’t have to go bankrupt to cultivate the best life for him.

Kiran had his regular cardiologist appointment today. For me, it was probably the most beneficial outcome I could ask for, save just a completely stable heart which I knew was unlikely.

He did amazing, as usual, with his echo and EKG. We got to meet the daughter of a former echo tech who we absolutely adored, and the apple didn’t fall far from the tree. During his echo, Kiran got to sit up for parts of it, take a good look at the screen showing his heart, and even “help” by holding her hand. Her calm demeanor and patience with him made the whole experience better.

Dr R let us know that Kiran’s pressures are slowly rising. The last few appts have been in the 40’s and now they are jumping to the 50’s. Also, his last cath was apparently in 2017 (time flies), so it’s not a bad idea to get in there and see what they can do to better the situation.

Long story short: Kiran’s test results are indicative but not urgent or emergent that it is time for the cath lab in the next year. Dr R is hopeful they can do some ballooning and/or stenting to buy us time to get through his teen growth spurt before needing a valve replacement. This could potentially mean only one more open heart surgery, if we can hold off needing it until he’s essentially in his adult form.

After multiple questions about the strength of the cath team currently, the doctor’s comfort level with timeline decision, recovery, risk, and restrictions following stent placement ….

We tentatively decided to wait until next June to go to the cath lab. We will be checking back in with cardiology in six months, so if anything drastic changes, that timeline will also.

But having this time to plan and process will be important for our family, especially as I am jumping into a new career and Kiran is wanting to live his best life this summer.

Since his heart can’t just be forever fixed, I’ll take non-urgent news and time to process and plan to move forward.

I wish I could understand the stories you tell yourself.

The narratives you must write, so far detached from the reality in which we are living.

I will never hold regret for loving you once. It was genuine on my end. I know, now, that it never was on yours.

But you gave me the greatest gift, so I can never regret.

The best part is this:

You have no power here anymore.

I am no longer under your control.