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.

 

Day 60

I have been doing a good job navigating this current virus situation without taking up Kiran’s medical team’s time. This has been somewhat intentional on my part.

I don’t need them to weigh in, necessarily, at this stage of the journey.

Let’s face it: I am GOOD at the restrict and protect stage.

I am less good when it comes time to think about adding risk back in. So today, after my processing yesterday and some guidance from a friend, I decided it was time to start some conversations.

I tend to turn to the same two people – Kiran’s pediatrician here in town and his cardiologist in Iowa City. Both are thoughtful, even-keel professionals who have always acknowledged and respected my place on Kiran’s care team.

Here’s what really threw me for a loop and made me think it was time to reach out: Kiran’s preschool teacher, who is so good at caring about Kiran and keeping his medical needs at the forefront of her mind, mentioned to me that all it would take is a note from his doctor to get homebound services started in the fall if necessary.

My knee jerk reaction was to panic. And then as I calmed down, I started feeling like that would not be a necessary step for Kiran. IF school reopens in brick and mortar in the fall, it will likely be a risk worth taking to have Kiran back in the classroom with his peers.

Both his cardiologist and pediatrician agreed with that, at this point. From a medical risk perspective, they would fully support sending Kiran back to school if that is what we decided was best for our family.

Of course, one of them said “If schools open up in the fall” and one of them said “Schools are going to close down again. I don’t see how they couldn’t. So I think that decision will ultimately be made for you.” ….

Also, from both of them, validation was received for the plan Arif and I already agreed to – they both feel it is wise to wait until mid-June (or even end of June) before we start doing anything different with Kiran. We stay the course so we can watch viral activity now that things are opening back up. And we got validation for the plan I proposed as far as how we would approach re-entry – namely, appointments first (medical, therapy, dental) and letting close people back into our lives in a non-virtual manner (Eric). We would still avoid taking Kiran to stores or doing any unnecessary activities (including spending time with people who would bring in a lot of risk) as we continue to stay informed. A lot of wait and watch. Watch and wait.

I feel less crazy. I am not sure how many times it will take before I realize I can – and should – trust my well-thought-out instincts when it comes to Kiran’s well-being. Although I’m not particularly happy it will be another 30 days – and even then, only if viral activity is finally decreasing – before we get to spend time with Eric.

This sucks. And honestly, I have questioned at times if I was being too restrictive – too protective. Turns out, I was just being smart. I was just doing what was in Kiran’s best interest, to keep him healthy and safe … as much as that is in my power. And that’s what I will continue to do.

Here’s to another thirty days ………

Bubble vs. Abundant Life

I am currently living with great fear.

As a mother, my instinct, even when Kiran was still growing inside of me, was to protect him. Due to his medical conditions at birth, I had to go to greater extents than most to make sure he stayed safe and healthy. He was born late October – peak flu season – and sent home with me as a newborn with a critical, unrepaired heart defect.

Despite my best efforts, he caught a cold – the common cold – at around two and a half months old. It required a week-long hospital stay, because he needed oxygen to make it through.

I know I can’t protect him from this virus indefinitely. I know, at some point, we have to re-enter society. It has never been my intention to keep Kiran inside a bubble – He and I have always chosen to get out in the world and live a full life, despite the obstacles.

Risk is a part of life. I get that.

I still feel, for my family, it’s too soon.

And I do worry that it will become harder to exercise my “freedom” to stay home. Now that Iowa is opening back up, I worry that some of the services businesses have provided that have allowed us to stay safely at home will no longer be offered.

I worry I will be required to make decisions before I am ready. And honestly, I have no idea how to even make these decisions.

I am keeping myself as informed as I can. None of this is political for me. This is about protecting my family, period.

This time has not been without sacrifices. I agree that this is not a sustainable way to live, long-term. At some point, I’d like to see my boyfriend again. But the time is not now. Not for us. So we will keep doing what we are doing. For now.

And we will take our own “phased-in approach” as we feel more comfortable doing so. Though I feel I will never be comfortable. My fear response right now is absolutely to keep Kiran in a bubble forever. To keep him safe.

I wanted that the last days of my pregnancy. He was safe inside me; he was getting what he needed. I couldn’t guarantee his safety outside the womb. But he had to have a life. And he will have to have a more full life than what we’ve been living these past 59 days.

It’s not time yet. Once it is, I’m going to struggle. But I’ll do it anyway.

It’s a long road ahead, but we journey together. This journey is not as straightforward as everyone seems to want to make it. There is no right answer right now. These decisions are HARD. I am paralyzed by them.

Today, I’m just gonna hang on tight. The time will be here soon enough when I have to let go.

 

No Regrets

Today marks 51 days since I have seen or spent time with my boyfriend in person. It seems quite a few people don’t understand exactly why we have made this decision. Or they offer helpful advice on ways we can safely spend time together – believe me, we have considered every single one.

The truth: It sucks. The truth: It’s an important, intentional decision. The truth: I have lived inside my brain for 36 years, and I know how it works.

My dad is an essential worker, so he still has to go to work. He is already a risk factor for our household. Because he is already out in the world, he is also our designated grocery getter; Mom is working from home and I am schooling/caregiving from home, so we haven’t been anywhere these 51 days.

Eric is also an essential worker, so he would bring extra risk where there is already risk. And, as callous as this may sound, it is unnecessary risk. I can’t mitigate the risk my father brings into the home, because Kiran and I are lucky to have had this home as our safe place these last three years. But I can choose to not add MORE risk by physically distancing myself and my son from Eric (and anyone else – it’s not like I’ve seen anyone these past 51 days).

It has proven to be a good decision. I won’t share more about that.

What I will say, about how my brain works, is this: In order to live with myself, I have to *know* that I have done everything in my power to keep my son safe and healthy. If he does contract this virus – and heaven forbid, the worst occurs – the only way I would be able to live with that is if I know I did everything I could to protect him. It’s the same reason we traveled all the way to California for his open heart surgery, to the most experienced surgeon, the one who created the surgery Kiran needed. If Kiran didn’t make it through open heart surgery there, I would have known, without a doubt, I did right by him, by taking him to the best. If Kiran doesn’t make it in this life, I have to know that it’s not because I was selfish and just had to see my boyfriend during a pandemic.

It’s not forever.

But for now, we make the hard, safe decision. And as the information shows us it is safe to do so, we will make a different decision. And Kiran and I will hug Eric for a really really really long time.

 

Well, Crap

This seems to be my first sentiment of the morning, every morning, as I wake to another day that looks similar to the day before and the day before that and the day before that and the….

We are all in the same boat, though the storm is likely hitting us differently.

But this is actually a blog update about poop.  I know, you’re welcome.

Since Kiran was diagnosed with constipation and put on a Miralax clean-out, some things have happened.  First, I think we have finally landed on the maintenance dose of Miralax he will need daily for the next few months, to get his body to a place where he doesn’t need the help anymore.  Both his pediatrician and GI doctor had good discussions with me about what this does to help put his body in a position to expel waste without needing the Miralax, and we have a solid plan in place to get him off the Miralax as well.

Second, I have been in touch with the dietitian we see at Kiran’s feeding clinic about the new blend recipes I’ve been working on to incorporate more iron into his diet via food (instead of adding a supplement, which may exacerbate the constipation issue).  She praised my recipes, offered a few more iron-rich food ideas, and couldn’t really answer the one question I had about decreasing volume in the couple of my recipes.  It was good to be validated and know I am on the right track in providing Kiran’s nutritional needs – I certainly spend enough time on researching, planning, and blending!

Third, both doctors I spoke to regarding the last step of Kiran’s digestion encouraged me to regularly (once or twice a day) have him sit on the potty.  Now, this is not a new thing.  Especially when he had instances of struggling to go or having not gone for a day or two, I would incorporate sitting on the potty as an extra help so he could go.  It was so infrequent and didn’t feel like a priority to add to our already busy daily schedule, so I recently gifted his old potty seat.

After getting this recommendation and attempting a potty-sit experience with me fully supporting him so he didn’t fall in, I realized neither of us would be comfortable – at all – in that scenario.  I found a really nice potty seat on Amazon that has a little back rest and handles on the side.  Today marks day 3 of us using it, along with his bathroom stool to prop his feet on, and he seems very comfortable.  In order to maximize comfort with it – and also the time we currently have at home – I have had him sit on the potty three times a day: after breakfast, after lunch (when he receives his Miralax dose), and before bed.

If you’re still reading, you actually got to the good part.

For the first time ever, Kiran went in the potty today after lunch!!!!!

He has never gone (1 or 2) in the potty, despite having had pretty good exposure to sitting on it.  And I almost didn’t put him on, because he had already soiled his diaper before we wrapped lunch up and got down to the bathroom.

I think it surprised him as much as it surprised me, but he didn’t seem scared or worried about the experience.  He did decide he was all done sitting on the potty shortly afterwards, however.  He let me know by leaning forward so far, I had to catch him as he fell into me.

I am excited about this, but probably not for the reasons many of you are thinking.  I am sure the first thought (because I know it would’ve been mine) is “Yay, now you can get him potty-trained!”

The truth is – as much as it has been hard to admit it and I feel a need to justify it – that is not a goal I have for Kiran right now.

I wasn’t ever able to fully put into words, so I am going to steal (summarize) words a friend told me yesterday, that her child’s doctor had shared with her: If he is unable to communicate to me that he needs to use the potty, but I am able to incorporate potty time into our day and keep him clean/dry, who have I really trained: him or me?

And quite frankly, right now, I don’t have the capacity to be trained.  This is not a priority I can – in good conscience – add to our already full days.  What matters to me with this is that it may help his body effectively expel waste more comfortably.  I can commit to once or twice a day (Because let’s be honest, 3 times a day may not be realistic after this period has passed and we are back to our regularly scheduled life), but I don’t think I want to be constantly sitting him on the potty in an attempt to get out of diapers.

Do I hope he gets to a place cognitively/developmentally where he is ready to be potty-trained?  Yes.  Do I think he is there right now?  I don’t.  And that is what it is, and I have accepted it long ago.  I have accepted diapers might be lifelong for him.

Today’s celebration had nothing to do with getting out of diapers or starting the process of potty-training Kiran.  Today’s celebration had to do with pain-free, effective poop!!!!! – with the added bonus that it was all much easier to clean up because he happened to be on the potty when he went!

I don’t care who you are, that’s good shit! (I had to. Forgive the language.)

Today, I am angry.  I am scared.  I read an article this morning about how hospitals in the U.S. in the hardest hit areas are already overloaded.  In New York, no room in the morgue, so bodies are being held in refrigerated trucks.

Are you taking this seriously yet?

I can no longer breathe through that fear and tell myself it won’t happen here.  In our country.  In my state.  Because it’s happening in our country, and my state, in my opinion, isn’t taking it seriously enough.  And personal responsibility is largely lacking in our society as it is.

I told you I was angry today.

My biggest fear, I will share again.  It will hit our area hard, and our hospitals will be beyond capacity.  Life and death decisions – who to save, who to not save – will have to be made by medical standards.  One glance at Kiran’s medical history, I fear that if my son catches this or anything else and needs respiratory support, I will get a “sorry” ….

And I will have to bring my son home to die.

Even I thought that was an irrational fear when I first shared it – what – a week ago?  I keep watching the irrational become more and more probable, and I am angry.