Month after MSTue, 15th Sep '20, 11:40 pm::

After I helped Juliet get into bed tonight, I asked if there was anything else she wanted. She replied "I just want to feel normal." I laughed "It's 2020 honey, there's no such thing as 'normal' anymore for anyone."

It's been a month since she was diagnosed with Multiple Sclerosis and her recovery has been slow but steady. She's seen multiple neurologists, taken additional MRIs, got her blood drawn on at least five different occasions, had multiple optical tests at ophthalmologist, gone to physical and occupational therapy twice every week, all while trudging along with a walker and wearing an N95 mask. Immunodeficiency is no joke.

She is scheduled for a Friday morning infusion of Ocrevus, a disease-modifying drug, pending insurance approval. Otherwise next week or so. She will remain on this drug for life but the great thing is, after the initial two doses, it's only twice a year infusion instead of multiple pills every day. In best-case scenario, she will regain almost all of her past strength and abilities over the next few months and not experience severe MS flareups again, at least not for decades. Hopefully by then, there will be even better treatments available.

While we're plodding through the medical quagmires, we're doing our best to not let any of this effect the kids. Naveen is doing well with virtual school, thanks to his wonderful kindergarten teacher, Ms. Lintz. Leela is 10 months already and has been crawling all over the house this week. She is starting to pull herself up to stand and though she has the strength, she's still learning how to balance herself. Watching Leela smile every time Naveen walks into the room makes us appreciate how lucky we are, regardless of how we feel on a day to day basis.

To help ease some of our childcare and housekeeping stress, I've been looking for assistance for the past month. Juliet's bestie Rebecca has been an absolute angel, dropping everything to come assist us the moment we need anything. Our neighbor Brian has taken Juliet to PT/OT when I haven't been able to. Juliet's cousin KD drove over earlier this month from Orlando and stayed with us for a week and she is coming back again for a couple of more weeks. Many of our friends and families from out-of-state have vehemently offered to stay with us and help out but unfortunately due to higher risk of infection inherent to any long-distance travel, I've had to refuse their assistance. Even my parents wish to fly back to Florida but I cannot let them take that risk. So in addition to childcare help from Rebecca and KD, I've signed up with a daily housekeeping service, at least for the next month or two. They wear a mask, clean the busy areas of the house, and help a bit with dishes and laundry as needed. Additionally, I have found a new babysitter who also has experience dealing with medical issues. She will start full-time in October.

This past month has been exhausting for both Juliet and me and I don't think I've ever needed more help in my life. And yet, despite me needing help, literally everyone we know offering to help, and us being open to accepting the help, it still took a whole month of sleep-deprivation to sort it all out. I am optimistic that by October, I will have a much better routine and get plenty of rest nightly. But it's crazy how much worse this whole process was made due to the pandemic.

In the absence of COVID, my parents would have flown in immediately to take over childcare. It would also be easier for them since Naveen would have gone to school and Leela would be in daycare on weekdays. I would have focused my attention 100% on to Juliet's medical care. She still would have worn a mask everywhere due to being immunocompromised but the risk to her health would be much lower. And if my parents needed a break, we could've called any of the babysitters we've worked with in the past. Instead, we're needlessly going through everything I've written in the paragraphs above. While many young and otherwise healthy people can afford to take the risk of contracting Coronavirus, we cannot. I cannot bear to take Juliet to the ER again. I'd say I'm doing a pretty decent job holding everything together right now in spite of everything, but I simply cannot bear to take Juliet to the ER again. I just can't.

So until there is an effective vaccine, we're going to have to keep isolating, keep wearing masks in public, keep Naveen enrolled in virtual-school, keep Leela out of daycare, and keep counting our blessings.

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