My graduate clinical supervisor today told me (and I’m paraphrasing here) I am very much a mom to a complex kid. She said the way that I said Kiran is doing well and really, it’s “just” the daily care with him …

Just. No active parent/caregiver should ever minimize their daily responsibilities that way. And she reminded me of that.

She reminded me I probably don’t even think about or realize all of the tasks I do as a mom to Kiran. She reminded me of how far I’ve come on my graduate school journey, and she said a big reason why they chose me for this program is they see my grit and my passion because I am Kiran’s mom.

So. I didn’t quit grad school today. That’s a win.

That delicate balance I wrote about recently shattered in the face of an illness that had me in bed for days. I don’t do ill well, and I didn’t grieve the loss of my big birthday weekend well, and I spiraled a bit.

So. I reached out and made an appt with the online mental health counseling services my grad school provides. And I reached out to my supervisor and said “I’m struggling.”

And today, she reminded me there are options. She assured me there are backups if I can’t find a local adult placement. She assured me I could extend the program, if needed, thru summer or fall of 2025.

It’s not all or nothing – buck up or walk away.

And just hearing those options – and most importantly, feeling SEEN by her, as a mom who has a lot on her plate that many don’t see – made me feel better about it all.

And a wise, wise member of my cohort (so many also had words of encouragement for me a few days ago, when I was really struggling to find the light in my darkness) today told me she’s been asking herself this question lately: “What if I cared about school a little less and about myself a little more?”

Yes. What if.

At this point in our family’s life, the balance beam we walk is very narrow. One illness, one job cancellation, one unexpected bill, one sleepless night – the balance is no longer sustainable.

We fall right off that beam.

It’s not the end of the world. It just means we have to live off-balance for awhile. I have made balance a much bigger priority this year, out of necessity for my own mental health.

But it’s important, too, to not place balance on too big a pedestal. I have to be okay with a few day/weeks/months where the balance is a bit off, out of necessity.

This, too, shall pass.

I have to tell myself this, over and over. Because things don’t seem sustainable right now. And they aren’t, long-term. But this is short-term. It’s not forever.

Just keep swimming … right?

I have never been one who likes change. Even as a person who is constantly trying to better herself and grow in multiple areas, I hate it when things in life – that are NOT under my control – change.

Today is Kiran’s last day with his beloved associate at school, who has been with him for two years. She has been a constant presence in his life at school since halfway through his kindergarten year. I trust her so much, I hired her on as a respite care provider for Kiran as well. She is moving on to bigger and better things – she, too, has been in graduate school these past few years – and I am so thrilled for her.

But I am heartbroken for me. For Kiran.

I am reminding myself, as I met the sweet (YOUNG) woman this morning who will be taking over as his associate (and – for what it’s worth – he has a different associate T/Th, so this is his associate M/W/F – so there is some constancy), that I was also devastated when Kiran’s first kindergarten associate moved on. And he ended up with this amazing one that I am now devastated to lose. So chances are, this new one will be amazing in her own ways, and when she inevitably moves on, I will be heartbroken all over again.

There are a lot of relationships that change in Kiran’s life, because we have a lot of people comprising his team. Some, I am glad to see go – or I even have made the decision to move to someone different. But many, I am so sorry to say goodbye to.

This will be a hard one.

Balance.

I am not going to lie; I had to look back at my New Year’s post for 2023 to even remember the word I chose. Luckily for me, vulnerability is something I seem to get better at all the time, so I am going to call it a win. A growth. Yay for me.

2022 was authenticity. Both of those go hand-in-hand, really, which is what I wrote about last year. But something I have already been working on these past few months is going to be my focus for the coming year.

Balance.

It is going to embed itself into several areas of my life. The most important one – the one I have already been focused on – has to do with actually finding time to take care of myself in the midst of all of my responsibilities. I am wanting it to grow into areas like exercise and nutrition – the ways I find it hardest to take care of myself, after a regular shower schedule (do you KNOW how much work taking a shower can be, when you’re overwhelmed and stressed and perpetually have a to-do list three miles long!?!).

I also want it, eventually, to grow into relationships. Balance. Putting in the effort with those who are putting in the effort with me. I’ll be honest – I know I haven’t been great at relationships lately, in all forms. But I love my people, and I want relationships to grow and be more – real – and evident in my life. It is hard when I feel like every day, I am empty and have nothing more to give. But I think by finding a better balance – a better footing – I will have more. It is, perhaps, my greatest hope for the coming year: To be able to give more energy and take in more love from those around me.

Cheers to the new year.

There has been an undercurrent of grief in my life lately. Though I have had over eight years to practice, I haven’t quite figured out how to reconcile the complicated emotions that come with being Kiran’s mom.

I find myself envious of Eric’s ability to choose his role in Kiran’s life. I am sure it is because of my need for control in my own life. I didn’t get to choose this life – this version of motherhood.

The truth is (and this is one that is so hard for me to admit): I never would have chosen it.

The other truth: I would never want to change it.

I have had so much practice with various forms of grief in my life. People have even come to me as if I should have some sort of answer about how to navigate grief or how to help loved ones new in the grieving process. As if I’m an expert, somehow.

How can I hold SO much love in my heart for this little boy and be so thankful that I get to be his mom, while still deeply grieving the child(ren) I imagined I would have? While feeling that ache for the type of motherhood I longed for my entire life?

I don’t know. But all of it lives deep in my heart, and it has been seeping out during this season.

I’m supposed to be listening to the words of the song, but I am too distracted making sure he doesn’t feel left out because he’s sitting in his wheelchair while the rest of us stand. I try to focus my mind on the pastor’s message while keeping an eye on his communication device’s screen to ensure he doesn’t yell out today’s date at top volume in the middle of the Christmas Eve service.

I am painfully aware, in every moment, how much space we are taking up, in a crowded sanctuary. We managed to get a wheelchair space, but there are chairs set up right behind, and with his communication device and the push handle of his wheelchair, he’s long. His communication device is right behind the head of the man sitting in front of him, and his handle is definitely in the woman’s space behind him.

I try to quiet the never-ending commentary my anxiety gifts me by reminding my brain that he is allowed to take up space in this world. And I need to stop apologizing all the time for it.

I was awkward and clumsy, helping him back into his chair after the songs (Daddy Eric wanted him in our laps for a family photo and for some of the singing at the beginning of service). It took too many minutes for my heart rate to slow and my brain to stop perseverating over it.

I am allowed to take up space in the world, too.

You know how there is no manual out there for parenting?

I have no idea what I’m doing at least half the time. That’s probably a conservative estimate. And even though I doubt people are watching/judging as much as my anxiety imagines they are, we also absolutely do stick out in public.

Well, maybe. It’s amazing how many people seem to not see us as we are trying to navigate through a crowd.

I wanted so badly for it to be a peaceful Christmas Eve service, and instead, I was a stressed out, frustrated, tired mama throughout. Unsure of how to navigate it all, worried what others might think or feel about the space we were taking up, and overwhelmed by the crowded church.

I am thankful that I caught the part in the pastor’s message where he reminded us that we are welcome – and safe – in this church and with God – just as we are.

It’s a quiet morning. Kiran is celebrating with his dad this year, Eric is getting some much needed sleep after getting up at 5 am to get the turkeys in, Pickle got his good food, and Tux has a new toy. The Macy’s Thanksgiving Day parade is on, and the coffee is strong.

I am stepping away and pretending I’m not a grad student until Monday, and it’s a much needed deep breath.

I miss writing about my life, but honestly, I haven’t had the energy. Or time. Or motivation. It’s been a challenging and overwhelming season.

I have been taking steps to really take care of my mental health – and honestly, that is taxing too. It’s hard work, shooting for balance.

Kiran has been doing so well. No illness so far this school year!! I know we are getting into the worst of the cold/flu season, but I am thankful we got this far. His health overall has been stable and we are currently enjoying a time of simply routine appointments with all his specialists. I know this ebbs and flows, so I am always thankful for these times.

He had his last speech session at Childserve last week, before starting a pre-planned step away from outside therapies for the rest of the school year. This will be the first time, since he was a year old, that we will NOT be going to Childserve twice a week. It is a long overdue break for us all. We will check in and re-evaluate and make a longterm therapy plan sometime this spring, but I am firmly not starting any outside therapy until summer at the earliest.

I guess you could say I am thankful for the steps our family is taking toward balance.

Am I a good mom?

I think, if I’m being brutally, vulnerably honest, I ask myself that question every single day. Some days, multiple times.

Yesterday was such a good day. Kiran had his miracle league baseball game with great buddies, and both sets of grandparents were there to cheer him on.

We had a birthday party of a dear friend to attend, and Kiran was so happy and had a great time.

And then – for the second time in almost 8 years – I accidentally yanked his g-tube out while feeding him his snack. And instantly, all the “good momming” I had done for the past – I don’t know – YEARS – went out the window.

Ugh.

There is no manual for parenting. For anyone. And there is especially no manual for a unique kid like Kiran. I definitely parent with confidence – and advocate with even more – but it’s all feigned.

I have no idea what I’m doing most of the time.

And sure – I could take credit for his happiness – but really, that’s him. He is a happy, easygoing dude. I have nothing to do with it, and I’m SO thankful for it.

I’ll question forever. And it will keep me striving to be the best mom I can possibly be for this amazing kid.

It’s all I can do.

As someone who has always tried to make herself small – blend into the wall – I still find it uncomfortable to take up space. I find myself apologizing for Kiran taking up space.

He takes up more, now, with his wheelchair mount that holds his communication device. I was just envisioning what it would be like to take him to the grocery store, just he and I – how long a train we would now make, with the communication device out in front, me pushing his chair, pulling a grocery cart behind me.

Why not just leave his communication device at home? It’s so much to cart from place to place.

I know.

But I wouldn’t want someone to take my voice away simply because they find it inconvenient. And now, Kiran finally has his voice, and I am going to do my best to be sure he has it in every situation, to whatever extent possible.

I have so many thoughts and feelings swirling around today, Kiran’s first day of second grade. There has been so much change this summer, and it’s a lot to get used to. His new wheelchair and now mounted communication device make him suddenly unable to be inconspicuous – not that he ever really was before. He stands out, he is noticeably different from his peers, and he takes up space in this world.

And it is so much easier for me to fight for his right to take up space than for my own. I’m working on that. But I know for damn sure, this world needs to make space for my boy. I’ll be clearing the path.