If I were in the position to be talking to a lot of people right now the question may be posed to me, “You sound a little angry, Ang. Why are you so angry?” However we have been social distancing here to the best of our abilities so I have not spoken to a whole lot of people face to face other than 6′ or so apart on the streets of our town. I think most people are experiencing the emotion anger right now so I don’t think I would personally be called out on my anger. But there is one person that is calling me out and that is by someone whose name rhymes with Blang. It’s me … Ang.
I have been raging, fuming, crying in frustration over sightings and hearings of people continuing to congregate. Congregating despite knowledge being fed to us spoonful after spoonful – we are getting obese with effing information. We. know. we. know! And yet some do not either choose to believe, don’t think it can happen to them, or don’t understand how washing hands and staying a safe distance from people and touching objects that can carry a virus and continue to congregate in small or large groups.
There has been a lot of news and social media stories on boredom and schooling students at home and concerns over these topics. I am not raging over this. As a caregiver our take on this pandemic is that it hits so close to home we are putting a house plant in the corner of it.
When Hannah was three months old heart defects were detected. From there on her life (and ours) quickly went out of our basic control and into the arms of medical help. As she grew older in age her body struggled with continuous heart, lung, trachea issues and then scar tissue – a side affect from one of her heart surgeries. The trachea injury reeked havoc on her little body for years creating an un-human like sound as she breathed which got even more horrendous when the regular trachea infections came upon her. With all of this happening to her her basic immunity just seemed to be the pits and she was a little sitting duck-ish in terms of all the things she would catch (she once had cellulitis in her toe). When she would catch a cold, or bronchitis or pneumonia it was heart-breaking to see and traumatic for us each time it occurred. But this was her general life. Our schedule revolved around her health. Her sister’s life revolved around her health – though we did the best we could to keep going on as good as we could.
I would say generally the first eighteen or so years of her life her health was first and foremost in our attention toward her aside from her autism which was a whole other world.
The last five years we have enjoyed her stable health and only see mild affects of her first eighteen years. But the memories of her breathing, or not breathing, of seeing her suffer are not far in my mind.
There are so many parents like us for which this story will resonate with. When you are a caregiver of a sick child it changes you. Having your child survive becomes your only goal. This is only our story. There are so many families that have it worse and are continually caring for their child.
Hannah’s day program has been suspended. Her 40 hour/month respite – which for her was Special O with a visit to a friend’s to watch wrestling, coffee time with friends, yoga with a walk after and music night at a friends was suddenly taken away in a matter of days. She became full time at home girl with me as her caregiver. My job as her mom is to keep her safe and distanced as much as possible. Every day she asks me, “Mom and dad will take me” meaning she wants to go out. We are both “working at home”.
When the news and policies were changing in the beginning my first worry was boredom for me and how would I engage Hannah every day without any respite from workers or grandparents. But those worries soon ceased when we just began doing it and it was successful with a lot of work. It felt like we were a world away from the coronavirus and it really didn’t affect us – but of course we would comply.
Suddenly things changed when the virus was being community spread. It hit me that yes she and other people like her were extra susceptible. This has scared me so much. To go back to the time when her respiratory issues were so bad – I could not even fathom it. I authentically worried as well for people like her that the outcome would be grim.
Once I got a hold of those emotions and continued doing what Dr. Tam continuously said I felt rather at peace about her health. But then something new hit me. What if we as parents caught the coronavirus. What would happen to her? If she had been in a home with two people infected she would likely be getting it as well. Where would she go? Who would care for an young woman with autism fighting this deadly virus? There are no words to describe this but to say it authentically has sometimes felt like life or death. Families like ours have been absent in any emergency plan. I suppose it will be up to families like ours to continue squeak the wheel. While I still do not have an answer, I do know that Hannah has many loving friends, family and professionals in her life that she would be cared for if we were too sick. (In the night my best case scenario for this would be that us three just got it together and we could care for her while being sick).
While workshopping all of these emotions I have had the misfortune of reading comments on social media and am so disheartened by hearing some people’s selfish and hateful thoughts. Comments like, “Why are we shutting everything down basically for people who don’t contribute to the economy?” (I assume meaning the elderly).
After being angry for some time it hit me. Seeing people congregate and take this lightly feels like a direct hit for me. A punch in the gut. It is like they are saying “We care more about getting out and doing our thing than we care about people who are medically sensitive”. While of course no one is saying that – but that is the message as a caregiver that I receive. It is the herd mentality. This. only. works. if. we. all. who are able to. do. it. Not doing it is demanding that the team take it for you.
While boredom and fear of not using my brain for things other than “how can I keep Hannah engaged” are there it seems luxurious to think that not social distancing is even an option. In my world I know too many people that this would affect.
What’s next for me is listening (and probably crying) to Les Miserables and hearing the message again of how angry self righteousness never wins and grace always perseveres. (But I will have my phone on the 311 speed dial!) And I will keep speaking out.