disability

The Never Normal New Normal

“The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails.”

– William Arthur Ward

We’re excited for a time when we can all get through this and we can get back to normal.  For us, however, and for my family, we aren’t convinced that time will ever come.  You see, my daughter has Rett Syndrome – it’s a rare neurological disease that among other things severely impacts her breathing.  She was diagnosed more than six years ago and every year since has been learning about how to adapt. Now, in 2020, in addition to it all, there’s a pandemic we have to learn to adapt to as well.

Everything we know about Covid tells us if Maggie gets it, she could die, or at the least, struggle immensely.  So normal to us is going to be very different from most people’s normal.  We have to do everything in our power to prevent her from contracting the disease which is why normal to us may never actually be normal again, in part because we live in Los Angeles, a densely populated major city with cases of Covid yet to be under control.

We have seen first hand the aisles of grocery stores emptying of essential goods and the stress of that experience was mentally straining. Even more taxing has been the constant calculation of Magnolia’s seizure, breathing and anxiety medications. We have had to scurry around town finding places that had them in stock and had to consistently make sure we had enough and backup, in case, for whatever reason, production became complicated. Back up of her medications, however was difficult, in some cases to find and in others because the pharmacist can only make a 30 day supply at any given time. It’s hard to have back up of a medication that expires every 30 days.

As it has been for all families with small kids, days have been long. Magnolia gets up around 5:30 AM, she goes to bed around 7:30PM. Gray wakes up around 6:30/7 am, and goes to bed around 8:30/9 pm. Since both of them need full attention in order to attend and participate in school, each of us would have to take on the responsibility of teaching. In most two parent households, one parent could focus on schooling while the other could manage their work from home schedule, or if the kids are old enough, they can attend to the Zooms themselves. For us, we had to divide and conquer to be successful.

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Now that school is out, our focus has shifted to what happens next. Covid 19 has thrown us through a loop. The pandemic has drained both of us at times, emotionally, physically and mentally. There are so many extra things to think about when you have a kid with complex issues, some of them being issues that could put her life in danger if she caught Covid 19.

We haven’t been near other people in almost 100 days.  All of our food gets delivered to us, and washed before it comes into the house.  AJ has become our pool guy, our gardener, our daughter’s teacher, and our primary bread winner. I am a preschool teacher, physical therapist, occupational therapist, speech therapist (we rotate being Maggie’s therapists), dog trainer, short order cook and housekeeper. We have to take on those responsibilities because we cannot risk any of those people catching the virus and bringing it into our cone of protection – the perimeter of our yard. 

This past school year was the first year Magnolia was truly healthy enough to go back to school in a classroom. This was such a big decision. Last year, we felt it could be happening so we looked at various schools, school districts and possible moves, so she would be in the right place for her. It’s difficult to figure out and advocate for her, she is complex. She can’t use her hands, which limits her abilities, tremendously. She needs to have a full time aide, for caregiving, safety, communication and assistance with education. Not an easy task. She doesn’t use her Tobii eyegaze computer all of the time or with 100% accuracy, so she may seem to some unintelligent, which is far from the truth. She is smart and she needs an education system that understands her. We found that at Temple Beth Hillel. The TBH community welcomed her and us with open arms. Mags started school in October 2019 and she loved it. We decided we would have her go through their program, through 6th grade. For the first time in 7 years, she was in the right place, things were comfortable, she was thriving.

Grayden is in preschool at TBH. He needs extra attention at times, when life is harder at home with Mags. The teachers, staff and parents in his classroom were willingly stepping in to give him support. Which in turn, was support for us all. Not having him in his preschool program has been difficult since it was a respite for him, from Rett Syndrome. He was thriving.

AJ is finishing up his 4th movie which is also his directorial debut. After years of hard work, life was falling into place. He was thriving.

After 9 years focused mainly on kids, I was finally getting a chance to get back to my passion of writing and with both kids at school during the day, I was accomplishing more than I ever had. It felt like we were all thriving.

Then Covid happened. And now, questions about what’s next abound. Will we ever be comfortable letting Maggie go back to school?  If the people in her class aren’t 100% safe, and I don’t expect people in more typical situations to be as diligent we need to be, how can we send Maggie to a class that has some risk?  For that matter, can we send our four year old son back to school? Preschool kids are not known for their sanitation so it’s going to be hard for us to fully trust the herd on keeping him safe and by extension, our daughter safe. Not everyone is in this same situation, and that includes other families with kids with Rett. The truth is because of Maggie’s particular set of Rett symptoms, we’ve taken it upon ourselves to be extra diligent.

As a result, they are both home from school and most likely being homeschooled for the next year.  The reward of sending Gray to school, doesn’t outweigh the risk of putting Maggies’ life in danger. Magnolia might not be able to go back to school in a classroom for a couple of years. Her immune system just isn’t as strong as others. We’ve dealt with the consequences of her getting sick, unstoppable seizures and hospitalizations. The measures they implement to keep kids safe will be based on educated guesses, but Maggie can’t be a guinea pig. She is in a good place now, we want to keep her there. Gray might not be able to go to school next year because we can’t risk him bringing home infections to Mags. AJ might not be able to work on a set for awhile since most Film/TV sets would require too many people for it to be safe, or risk getting sick. That will greatly diminish his work prospects. In the past, he’s done plenty of consulting for startup video companies and digital strategy work, but he will have to rebuild, again. My writing, well, it just doesn’t support us.

We have short term safety concerns that are very real, but how will our short term decisions affect the long term development of our kids or the trajectory of our own lives?  Does it really matter if our 4th grader takes a gap year?  We certainly don’t think there’s much harm in our son missing a year of pre school, especially if we fill it up with experiences he’ll remember for a lifetime. If AJ has to resort to remote working, or find a new career that doesn’t require 50 people to be in a room together in order to make the work happen, how much of a financial hit will we take? 

And, what if there is no treatment or vaccine for two years?  We are all too familiar with the pace that science actually goes.  The stops, the starts.  The promises and the failures.  Yes, there are thousands of more scientists focused on this than there are on my daughter’s little rare disease, but there are no guarantees that treatments or vaccines will come soon. In 2007 they were able to prove Rett Syndrome was reversible in a laboratory.  Since then the science community has been aggressively trying to figure out how they could translate that research into humans.  It’s been 13 years.

While things may return to some semblance of what they were as people push aside the risks that won’t directly impact them, that can’t be our world.  Our world is just -going to have to get smaller.  We don’t know what tomorrow will bring or what normal looks like any more, but whatever normal is, it’s going to be different for us.  That’s ok, though – our family has had to learn about being different once before.