In case anyone was curious, rain is the bane of my existence.

Now that we got that drama out of the way…seriously, rain is annoying. If me and mine are at home and don’t have to leave said home, bring it on. I love a good thunderstorm when snuggled up dry and warm.

But school drop off or pick up? No thank you. I’ll pass. I quit. Rain is the worst with a wheelchair, and we’ve leveled up in difficulty with the addition of a super expensive communication device that shouldn’t get wet.

I’m slightly unprepared today, which just means I will get soaked as I use my rain coat to protect the boy and carry the carrying bag for said communication device.

This is really just a vent, as I’m sitting in my car in the school parking lot gearing up for this wet adventure.

I need to invest in some new inexpensive adult ponchos that I can just put over him, his backpack, and his wheelchair. And figure out a better solution for his device than just the bag it came in.

I cannot place a finger on a for-sure reason why I find myself in this season.

But here I am.

Feeling overly emotional about caregiving lately. Standing at school pickup having to blink back tears as kids run out yelling for their parents. Feeling overwhelmed very quickly with basic, daily caregiving tasks.

Pouring from a near-empty cup, even as I am being more and more intentional about finding ways I can keep it full.

Striking a better balance than I have in a long time, but growth comes with growing pains, I think.

Perhaps I could blame the identity work being done in my current grad school class. Reflecting is necessary but painful.

Or I could blame Kiran’s upcoming IEP meeting. As he gets older, these feel more important – and more difficult.

Or I could blame the never-ending barrage of adult experiences, like what should have been the installation of our new dishwasher today turning into a broken shut-off valve and wet mess.

Maybe.

Maybe, sometimes, I’m just going to be more emotional about the realities of life. I think that’s okay. I think I don’t have to always overthink or understand every nuance of the experience.

Sometimes, I’m just going to feel overwhelmed and sad. Sometimes, I’m just going to grieve heavily the life I imagined for myself.

And, even in the midst of it, I find peace and joy. I think that’s the piece that matters most.

Though days may pass where I can’t find the light, I know its return is imminent.

All I know, at the end of the day, is I do it for him.

Despite my own discomfort or inconvenience. Despite the rapid beating of my heart and my reluctance in necessary confrontation.

When all is said and done, I know my heart is where it should be. And I will keep leaning into the discomfort, the inconvenience, the fear, the challenge – all of it – if it means I can know that I did my best by him.

He is and will forever be my priority, and I will continue to move forward in life holding that truth.

Struggle bus seemed too benign. Too small. I’ve been on the struggle train lately, and I can’t pinpoint exactly why.

I think it has to do with having free time for a change.

I never feel like I am doing enough as Kiran’s mom. There is always so much more we should be working on, more activities I should be taking him to, more education I should be seeking for myself to be the best mom/caregiver/advocate.

Not to mention the more I try to seek out self-care/ therapeutic avenues, the louder all these “not enough” voices become.

I never feel like I’m doing the right thing. Whatever path I choose, wherever my focus lies on any given day, it feels wrong.

And the exhaustion takes its toll sometimes. Despite my best efforts to achieve balance, we are entering another difficult season. I am doing a lot of solo parenting. And I am so thrilled at how Eric’s company is growing and the opportunities he has been given are important for our family. But we already miss having him around as much.

I just hope Kiran – and everyone else who loves him – can see how much I love him. How even if what I can give is not what it should be – and it may never be enough – it is everything within my capacity and with every inch of my heart.

I just wish I had more to pour into him. I wish I knew better ways to fill myself up so I could.

I am trying over here.

I’m winging it over here.

Don’t get me wrong; I have the utmost confidence that I am a good mom and caregiver to Kiran. I have all the love in the world – I fight fiercely for him when necessary – I have grown and learned so much along the way.

But I have no idea what I’m doing.

I am constantly exposed to ideas I’ve never thought of and then suddenly have new things to ponder. Changes that need to be made.

Especially as he is getting older, I am thinking so much more about things like dignity and consent, bodily autonomy and respect. These are things I have been thinking about for years now, but I am having to start thinking through things in different ways. Especially as he is getting more involved in the community and has more people caring for him that, often, I don’t get to directly train. Or control.

And let’s face it: I like to control everything, whenever possible.

I know that no parent knows what they are doing, but holy. crap. It’s just always more – “and” – additional things when parenting a disabled child.

I know I’m the expert when it comes to Kiran care, but I am going to need some experts to come alongside me in these transitions to come.

They say it takes a village.

I don’t know who gave them the authority to say such things so nonchalantly. As if it isn’t difficult to find, cultivate, and be a village with those around you.

Capacities are limited. Everyone has difficulties in their lives. It takes great vulnerability to ask for help. Rejection cuts deeper when you open yourself up to the possibility of more.

But it does take a village.

That village ebbs and flows. The people who choose to walk alongside you may change as every season of your life unfolds. Some may surprise you immensely, and you are humbled. And so incredibly grateful.

Pour into your village. Give of yourself even when you aren’t sure you’ll get anything back.

Remember that everyone’s load is heavy, and we are all just doing the best we can.

I am not ready for you to be this heavy.

I wish I could carry you forever.

I am not ready for more equipment. Insurance covered a hydraulic hoyer lift for you, and we received it a few months ago. We got a brief tutorial on how to use it. It has been sitting in the corner of your bedroom, unused, ever since. Part of the reason is we have to re-think and re-arrange the set-up of your bedroom before there is space for it to be stored in an accessible, ready-to-use spot. The bigger part of it is I am not ready. I don’t like the idea of it. I don’t want to need it.

The van. oof. This van modification. I have never had more anxiety over something you have needed since open heart surgery in 2016. I am struggling with trusting the process, I am struggling believing that it will all work out, I am struggling with the ridiculous expense. I hate asking for help. I am beyond uncomfortable with the gofundme and the news story. It all makes me want to pull the covers over my head and come out when I no longer feel so vulnerable and exposed. If ever you wondered if I’d really do anything for you, I hope this evidence is sufficient.

I don’t want to wish to rewind your life, because I am so thankful you are here and thriving at almost nine years old. But a part of me wants to go back to when you were small, when the day-to-day was just a little easier.

But was it? I struggled back then with things that are easy and commonplace now. I think I just need to accept that I will always struggle with change and the unknown and limbo, and our life will always have an added level of difficulty to it.

And an added level of joy.

Because that’s it, isn’t it? It’s the yin and yang of the life we live.

I’m overwhelmed and emotional.

Imagine that.

Exhausted? She’s a permanent resident.

I sometimes gaslight myself and wonder why in the world I am always feeling these things. And then I realize:

It’s the vacation bible school “student success plan” I have to fill out, to ensure Kiran’s needs can be met and they will have a one-on-one volunteer to help him successfully experience what most parents can just roll up and push their kids out of their vehicle to experience.

It’s the assignment I thought I would be able to knock out this morning during the 3 hours of respite care … that I quickly realized was a four-parter, and I only got through one part successfully before I couldn’t push my brain any further.

It’s the waiting at the pharmacy for the pharmacist to verify the dosage of amoxicillin because it appears to be too high, but actually we just have to give one dose before visiting the dentist every six months. And then waiting for her to mix it, because it has to go through the g-tube. I seriously had to hold back tears standing at the pharmacy counter, waiting – and why? I don’t know – I don’t get to choose when the emotions crash into me.

It’s the constant mental effort I have to put into grad school classes, paired with the constant physical, mental, and emotional effort I put into caregiving. It’s all the extras that add up, that feel unfair, that make me sometimes want to shout and scream and stomp my feet.

ENOUGH! – sometimes, too much –

It’s the big, looming changes before me that I have to work toward and wrap my head around and navigate…and change for me is always an exhausting and terrifying presence.

It’s the bravery and vulnerability it takes just to move in this world as a human.

It has been a very long day, and I am exhausted and processing.

Kiran is such an awesome patient. I am always so proud of him and amazed at his peacefulness and bravery. I know this has been his life, and he knows nothing different, but he really is an amazing kid.

The news I will share – the biggest news of the day – is the boy’s heart. First, the good: It is not yet time for an intervention. Now, the bad: It likely will be within the next year.

The pressures we are watching through his valve have increased. Nine months ago, they were around 48, and today, they were 58. Mid-60s indicates time for intervention, so he seems to be quickly moving there. However, his right ventricle still appears normal size, so it’s not working too hard pumping the blood through. Thats the other piece of what we are watching.

Dr R wants to see him back in 6 months (9 months ago, he was good with a year; I felt more comfortable with a sooner check-in), so I know we are more closely monitoring heart function.

It is still most likely that the intervention needed will be ballooning (and potential stent placement) done in the cath lab. This should buy us more time before his next open heart surgery is necessary.

I am thankful we didn’t have to schedule a cath procedure today, but I was not expecting that large of a pressure increase.

The time is approaching, but it’s not now.