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.



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