Autonomy

I have been thinking a lot more about bodily autonomy lately. As I have seen Kiran grow in leaps and bounds with his understanding – and even some body movement – I think it’s an important thing to be intentional about.

It has to be hard depending on others to provide mobility.

I was already really good about asking him for kisses and hugs. He doesn’t like to – or perhaps hasn’t quite figured it out yet – give kisses with his lips. But when I say “kiss, kiss” or “Can Mama have a kiss?”, he will bring his cheek to me for me to kiss it. “Big hug, big hug” is almost always something he’s happy to provide, and he is such a good hugger! But on the occasion he doesn’t wrap his arms around me, I let him have that choice. It’s important, maybe even MORE important for someone who can’t communicate to advocate for himself yet, that I strive to teach him this: His body is his.

What I have added in more recently, during diaper changes (when on the floor), I now ask him to lay back. “Can you lay down so Mama can change your diaper?” It takes him some time to process this request, but he has learned the meaning because months ago, we started a new bedtime routine. As soon as I lay him in bed, he gets up on his side and looks over his side railing. I wait patiently with his blanket and say “Let me know when you’re ready to be tucked in.” (This evolved from “Lay down so mama can tuck you in. You have to lay down.” etc) Some nights it takes a LOOOOOT of patience, but he always eventually complies. And I like that it gives him some control. So – back to diapers – this isn’t really a super negotiable thing – when it’s time to change him, it’s time. But I give him the option of voluntarily laying back, and I give him time to process the request and decide. This has been just in the last week or so, honestly (I am slow to think of these things sometimes, and I also have to consider where he’s at with his understanding and ability to control/move his body), but he is already getting it and complying most of the time. When he doesn’t, I just say “Mama has to lay you back so we can change your diaper” so he knows what’s about to happen with his body.

And I realize I need to be better about this all the time. I have always been in emotionally charged situations – at the doctor “This is what is going to happen” for instance – but I am less good about making it a part of daily life. So it’s a new and important goal of mine: Communicate MORE about what I am going to do with his body: where we are going, if I’m lifting him up or helping him walk, etc.

As hard as this has all been, this time home has been so good. For both of us.

Every Direction

There is a lot happening. I’m sure you’ve noticed the global and national and local (pandemic, Black Lives Matter movement, political divides, etc), but of course, there is always the personal as well.

And lately, it’s just been a lot.

I have been angry this last week. I try so hard to use my voice/text to educate and advocate and love, but I know when I am angry, that can get lost sometimes. I am trying to get myself back to a place of calm.

It is all just wearing on me, because, for my family, I am not seeing an end in sight. Not just the pandemic…the huge divide in this country…the personal life stuff that I just can’t seem to figure out how to solution effectively.

I’m. So. Tired.

Kiran continues to hang in there. He had a big week. He was able to hug Eric one time – the first time in over 90 days – before we went back to being physically distant due to catering jobs coming up that add risk. Nightly FaceTime before bed helps, but it isn’t the same, as so many who are still remaining apart from family know.

He had his first appointment since March – He and I went to the dentist on Wednesday. I had so much anxiety and dread going into this appointment for many reasons. The dentist isn’t fun for him in the best of times, only one parent was allowed to accompany him, and I have also not been out since this quarantine business started. It went so well, though. Shout out to his amazing dental office (reach out if anyone wants a recommendation for pediatric dentist office) for going above and beyond to accommodate us – and that was without me asking for any additional accommodations! They had so many protective plans in place in general, I felt safe keeping the appointment. And then they made me feel even more safe by immediately directing us to our own empty waiting room and waiting to take us back until the dental area was completely empty as well. Kiran and I were able to navigate how we need to approach the cleaning for future visits, and, though we were both hot and sweaty by the end of the appointment, Kiran got through it with all good news! He even (mostly) cooperated with his mask wearing when appropriate!

I thought maybe we would start doing some of his Childserve therapies in person in July, but now, watching the numbers go up and up and up, I’m not so sure that’s the right decision. He is so easygoing about whatever it is we are doing – although I can tell he misses the social aspects of life as-it-once-was – so I am definitely struggling in this way more than he is. Also, having to be hands-on therapist through video chat instruction – and being watched by his actual therapists all the way through – not the most fun thing ever.

I am seeing so much growth in him, actually, in most areas. (I would say feeding is the exception there, but we are also focused on some muscle exercises right now so I wouldn’t necessarily see the same kind of quantifiable progress.) I have been amazed and so very proud of him.

I guess that’s our update. Kiran is a rockstar. He has stayed healthy so far during these scary times, as has our entire household. He is taking things in stride and accepting our new-normal with far more ease than I am. I thought perhaps it would get better as the time went on … I’d find and settle into a rhythm and have more acceptance … but really, with each passing week, it’s harder and harder.

And always worth it.

 

Life

Today is a day Facebook memories always reminds me to celebrate life. Literally, simply the act of being alive.

Seven years ago today, I was almost hit by a bus in Denver. I still don’t like to think about that scene for very long because I legitimately almost have a panic attack.

Five years ago today, Kiran’s dad and I were sitting with a maternal fetal specialist who was explaining Kiran’s heart diagnosis to us. Although he strongly encouraged us against it, it was his duty as a medical professional to give us abortion as an option. It wasn’t even a thought – simply a NO.

Life. In many ways, it has been hard to find the joy in living this year. 2020 has not been kind. But I have held true to what matters – faith, hope, love – but the greatest, of course, is love.

Tonight, I will be celebrating life by spending the first real time with Eric in over three months. Kiran will be spending a long Father’s Day weekend with his dad, although he has also been spending physically distanced time with Eric.

I am nervous. Again, restrict and protect is my language. But adding in calculated risk, when I know how careful Eric is being, is going to be important for our family. Eric works a catering event next weekend (He will be wearing a mask and physically distanced) that will prompt us to take 5-7 days apart once again, to ensure he doesn’t develop symptoms. So protection is still at the forefront of our minds when it comes to Kiran.

I never thought so much of life would be about assessing risk, but I suppose it always is…it just isn’t usually so much in the spotlight. I could choose to never go to Denver again or to never be near a bus…I could have chosen to end Kiran’s life before it even began because I was afraid of losing him…but some risks bring about incalculable joy (more the latter than the former – I’m good, Denver, leave me be).

 

I want an A+

It all weighs so heavily on me.

Just give me the grading rubric. I’ll meet the expectations and earn the A, like I always do. I just need parameters and instruction, guidelines to follow, and I know I will do what is right.

But real life doesn’t work that way. You’re thrown into a reality you never imagined for yourself, and you are grateful – my goodness, are you ever grateful – but it’s all so hard.

No clear path exists. And you are forced to make choices, hoping they are the best choices for your son. But none of it makes sense, and you are always grasping at straws, guessing at what the right choice might be.

And then – then – life throws you into a global pandemic, and suddenly, nobody has any answers.

So you read everything you can get your hands on, and you have conversations with every medical professional you know.

Three long months pass.

And you know: You can’t keep going like this. It feels just like it felt in that last month before I gave birth. Every part of me screams to protect at all costs, and yet this still, small voice says: “He has to live.”

It doesn’t mean I won’t protect. So much of what I do is to protect. That part is easy. The part that is hard is accepting risk so he can LIVE.

But that is where we are. And it is draining my resources, mentally, emotionally. The decisions are not clear-cut, there is no answer key.

All I can do is strive to find the right balance. Protect his precious life and allow him to live his best life.

It’s a long road ahead but we journey together. Always. No matter what.