It’s my birthday today. Not a milestone one, just a regular marking of time passage.

Life has been rough. I have been struggling with persistent illness for so many weeks. I have also been feeling heavy about the state of the world as of late.

But.

My heart is so full today. I was blessed with my second grandbaby two days ago – I never knew if I’d get to be a “Lolly” and now both of Eric’s girls are mothers. I am so incredibly humbled and blessed to get a front row seat to watch them come into that role with such grace and fierce, true love. Their instincts are spot on, and I am so proud of both of them.

My circle is tightening, of my own accord, and I have been so thankful to spend today with those closest to me. I miss Kiran (dad weekend), but we will celebrate together Sunday night – and I’ve learned to embrace the caregiving breaks to be a whole person.

I don’t know that it will all be okay, but there are certainly huge portions of my life that are more than okay. Did I say my heart is full?

Overflowing. I am the luckiest in many ways.

I just finished the second week of my first full-time placement for my graduate program. It is the first time in Kiran’s nine years of life that I have been out of the house all day every day during the week. Needless to say, it has been an adjustment for our family (HUGE shout-out to Eric, who is now the main transportation to/from school every day except Wednesday – and shout-out to Nana, who has bravely taken on the school parking lot on Wednesdays)

I am so thankful that the schedule is such that I really only miss out on the last half hour at home in the mornings, and I am almost always home right as or right after Kiran gets home from school. It is easing us all into this new normal.

It has been a really interesting experience, throughout my graduate program, part-time placements, and now this full-time placement, experiencing the dichotomy of emotions that come with embracing another part of my personhood. On the one hand, I am really enjoying learning and diving in on sessions. I don’t mind not being the sole person handling all of Kiran’s care. On the other hand, I have some guilt around all of that, too. And I miss (almost) always being the one.

I am SO incredibly thankful I was able to be home as much as I was for the first nine years of Kiran’s life. Even two years ago, it would have been really difficult to swing being out of the house full-time. I am thankful for all the mountains and valleys, twists and turns life has taken our family on, because it has allowed us to be in a place for all this to even be feasible.

And I am so glad that I have chosen a career – and intend to pursue a position within that career – that will allow me to still be the primary caregiver for Kiran and be the one who is home with him during time off from school, including summers.

It is such an interesting experience, coming into myself in ways that make me feel more fully ME, even though it means everything about how our family works will be different. When it all comes down to it, my favorite title will always be Mom, but it is nice adding more titles and being more.

I had no idea I would feel this way.

Today was imperfect. Eric had to finalize Christmas cheesecakes so was gone for (arguably) the busiest hour plus of the morning.

Christmas Eve service at our church brought its own challenges and reminded us that we have to fight for Kiran’s space in this world in every setting. Even when we think we shouldn’t have to.

But. Eric’s girls and their SOs and our sweet grandbaby were all with us tonight. We had a great dinner and honest conversation.

Eric and I just watched Die Hard. I had never seen it (and honestly- eh). But then I put on a stocking hat and we got in the hot tub.

And it doesn’t really feel like Christmas this year. But I think we are getting some things right anyway.

Merry Christmas

I love that Kiran always keeps us on our toes. His heart test results when we were here six months ago made us all think we’d be scheduling an intervention at this appointment.

But – his heart function has remained stable!

Everything we are seeing is expected with his previous surgery and current heart anatomy/function. We are just monitoring because when it gets to a certain level of functioning, it will be time to take action.

For so many reasons, I am beyond thankful that time is not now.

When it rains, it pours.

It seems my body has been yelling at me to rest – and when that didn’t work, it has forced me to do so.

And to ask for help. Which is probably the one thing I am the worst at.

First, it was my foot. Talk about experiencing deep empathy for those who regularly have mobility challenges. When you feel you have a million things to do and you can’t just zoom around and get them done as usual, it’s highly frustrating.

The last few days, it’s been illness, because of course it has. This is the rhythm of my life – wrap up a stressful semester, start to let down and relax….and let in all the terrible germs.

In and around all of this, I have managed to wrap up my semester, PASS my oral comps (which shows I have learned some things throughout this grad school process), and have some fun with friends and family.

And, because life never slows down, Kiran has a big appointment day tomorrow in Iowa City. We get to leave at the butt crack of dawn, and daddy Eric is driving us this time. I am bracing myself but know I will never be prepared. Because it’s his heart – and he holds mine.

I am getting tired of all the academic writing I am doing today – working feverishly on competency written prompts in preparation of oral competencies – so I thought I’d come do some vent writing as a break.

The metro had its first snow that stuck overnight. Just a dusting, really, not any significant amount. Very pretty if you have the ability to just hide inside and not go anywhere.

If only.

School drop-off was a frustrating experience that brought many exasperated huffs to my breath and stinging tears to my eyes. Someone explain to me why a parent would choose to park in the middle of the parking lot aisle, blocking both accessible (handicapped – I am intentional with the language I use but want everyone to know what I’m talking about) spots? And then, despite NEVER wanting to be confrontational even in the slightest bit, after someone pulls up behind you, honks their horn, gestures they need to turn in, and points to their placard giving them the legal right to park in the spot you’re blocking…nothing happens. They just sit there.

I went around. Thankfully, going to the next aisle over, there was an accessible spot available (not always the case). But come on – don’t block these parking spots and pretend to be oblivious to what’s going on around you. If it was Eric dropping off, he would have gotten out and approached them. I am still working to develop that backbone.

I took pictures today of the snow situation in the accessible spots. Every year, the snow removal crew chooses to pile the snow up on one side of the van accessible parking spots, making the space smaller and rendering it essentially unusable for us now that our van has been modified. It wasn’t an issue today, but I don’t want it to be an issue in the future. Sometimes I come and there is only one accessible spot left, and if that is the case, I need the full space to be able to let down the side ramp and wheel Kiran out of the vehicle. Thankfully, the principal (who ADORES Kiran, which helps) took my email seriously and had a conversation with the custodial supervisor and assures me they will be sure to have these spaces fully cleared.

So two things right away – I’m on edge, right? This is enough mild confrontation and reluctant advocacy work for someone like me who is so uncomfortable with all of it –

I’m going to start ramming your children with Kiran’s wheelchair. When it is cold, I wheel Kiran into the school building to wait for his associate when all the other kids are allowed to go in (after the bell rings). I probably had one dozen kids come up behind/beside us and cut us off as we were trying to get in the door today. As if Kiran is invisible, which is impossible, because we are like a freaking train with all his stuff, his wheelchair, and his mounted eye gaze device that sits well in front of him. I was frustrated with the educator holding the door because I feel like she should have been the one to direct the students to not cut him off. I didn’t have it in me nor did I know the appropriate way to handle the situation. I won’t really start running into your kids, but I won’t lie and say there wasn’t a part of me today that wanted to.

These are the extra jobs I get as Kiran’s mom. Reluctant advocate, who must make people aware of our family’s accessibility needs and help ensure we are VISIBLE to others in the community. I’ll keep doing it – but anybody reading this, feel free to educate and advocate in your little slice of the world.

“Give thanks with a grateful heart”

Best I can do is to give thanks with an overwhelmed, aching heart.

I am pausing today, as best I can, from the responsibilities that have felt so monumental and insurmountable lately.

I was thinking this morning about the message I want to send my grad cohort in our active discord channel. We have a specific channel just for wellness, where we open up about difficulties and encourage one another. And I think what I want to say is this:

I know it feels like the competency we are all feverishly working on right now is the most important thing, THE piece from our grad school program that matters the most.

But it’s not.

While it IS important (and while I AM overwhelmed and anxious about it all), the most important thing I am taking from this program is this:

Look what I did. Look what WE did. We persevered through some of the most challenging, busy times of our lives, juggling so many balls. And when they fell, which they inevitably did, we had each other to pick them up and hand them back to us. I will take a lot away from this program, but my most important thing are the lifelong friends I made along the way.

Relationships. We learn a lot about developing rapport and building relationships with the people we work with in our field. You can’t help people unless you are in relationship with them. It’s the foundational thing.

In life, too. It’s what everything else is built upon. The most important piece of this existence.

The greatest of these is love.

Kiran did me a favor this morning by not waking up with a fever. He has still hung onto a gunky cough from his illness two weeks ago, and he woke up last night a couple hours after going to bed. Which is exactly what happened two weeks ago before he woke up with a fever the next day.

So I was bracing myself to lack balance once again during a busy and stressful time.

He has also been acting weird about putting weight on his right leg. But only periodically and only at home/for us (school hasn’t noticed, not even when he was working hard for PT and respite care providers haven’t noticed). I have taken him to the pediatrician so many times for this type of symptom, to have a partner in the detective work, but I am giving it more time this time.

Then, this morning, he was the most feisty he has EVER been while I was trying to brush his teeth. So now I need to investigate to see if there’s a loose tooth or a sore or if it’s that darn front tooth that won’t break through the gums bothering him.

When you have a non-speaking child with intellectual disability who is still working on vocabulary and communicating, you find yourself in the detective role a lot.

And it’s exhausting.

Fall is my favorite.

Walking the dog today, crunching through the colorful fallen leaves, I was reminded of the beauty of the season.

There is beauty in change. There is beauty in shaking off the parts of yourself that will not serve you in the season of life you’re in. There is beauty in regrowth.