As we were sitting in the living room we heard a horrible noise come from my daughter’s bedroom. It was something between a cough and loud heaving as though to vomit, combined with a choking sound. I rushed in and found her to be seemingly choking and attempting to cough or vomit something up. Except because of her lack of control over her body and muscles, she is unable to do this independently. Paul and I tried to both sit her 87 pound body up while her limbs still retracted and fought against us as they do in typical life because of her movement disorder. Once he was able to lift the top half of her body into more of a sitting position, I held her head as it bobbled without control to hold herself up, because it was taking every ounce of her strength to strain into this cough/choke/vomit reflex. Her eyes were watering and there was a crackling sound coming from her throat. After managing to produce a small amount of spit up over heaving for several minutes, her seemingly lifeless body relaxed after using so much energy and effort to clear this episode. We both lifted her gently into her wheelchair to give her a chance to sit up for a while and gain some composure back. I grabbed the pulse oximeter to check her blood oxygen. 86. That was the number she was reading. For those not super familiar with medial jargon, this meant she was not getting enough oxygen in her bloodstream, and can be a more critical number if it stays there for too long. Eventually the number crept up to a safer number over the next half an hour, but still never quite reaching her baseline. She was cool to the touch and somewhat clammy. My heart raced and I felt a flood of anxiety, fear, and grief wash over me as I fought back tears. While this is not an everyday occurrence, it also was not something new. Her temperature was running a bit low, and after we eventually felt comfortable getting her back in bed, I couldn’t shake the trauma and fear that came up from a place deep in my soul. Instinctively, I packed a few essentials in case I needed to take her to the ER in the middle of the night, and laid awake for a while praying for Jesus to keep her safe.
It is more than a disconcerting feeling to fear for your child’s life while they lay warm in the comfort of their own bed at home. That is where they are supposed to be the safest. Where your mind can be at ease, knowing they are safe within the walls of your family home. And yet with my medically complex daughter, I feel no safer when she is in her own bed than I do when we use a crosswalk on a busy intersection. In fact, in some ways that feels safer. When your child is completely dependent for all needs, in addition to multiple medical diagnoses, there are many things that could go wrong or affect them in traumatic ways beyond your control. For example, we did everything right putting her to bed that night: we started her feeding tube correctly, got her leg braces on correctly, inclined the head of her bed, and changed her clothes and diaper. And yet, she still was in imminent danger. Nothing we could have done would have prevented this episode, and yet had we not been within hearing distance she could have likely died choking to death on her own secretions and vomit simply because she lacks the ability to move her body independently. The thing is, this was just another Tuesday night. Things like this don’t happen every night, but they do happen without warning and on a semi regular basis….
Just the other day in the midst of swirling news reports of virus statistics especially affecting the elderly, I decided we should write to a few of our neighbors on our street in that age range to let them know we would love to help them run errands or grab groceries if they needed us to. It was at least a way I felt we could love them and help calm their fears a bit, and help them feel not alone. But when I reflected on this idea, I realized that I haven’t really thought of reaching out to our older neighbors like this until a pandemic hit. I was thinking how the fact that we are all basically quarantined to our own homes had made me increasingly aware of those nearby, whom I typically do not think often of on a regular basis. It isn’t that they wouldn’t appreciate help any other time, or that they are suddenly miraculously any younger outside this pandemic. But it somehow highlighted their existence to me, and increased my awareness. It made me sad that I haven’t reached out more before now, and while I have every excuse you could imagine, it doesn’t mean I have never had the chance to reach out and love them in some tangible or relational way.
Lately, extra concern for our special needs population had me somewhat perplexed. As a mom of a medically complex, immunocompromised child who is severely disabled, I am actually not really on much more alert that I am on a regular basis. My cortisol is already producing as though I’m in a crisis – on that Tuesday yes, but any other Sunday through Saturday as well. I’ve heard some say that the stress level of caring for a child like ours is comparable to that of a combat soldier. Two very different experiences? Yes. But not much different in the amount of stress and physical toll that each environment takes on the person. I just don’t think many people realize the everyday stress, mental and emotional strain, and the capacity in which we function on a daily basis JUST to keep our daughter alive. And yet I felt perplexed I think because any other day of the year pre-Coronavirus, our society isn’t super concerned with the complexities and toll that it takes on us as caretakers, and as a family to care for a child with such medical complexities and severe disabilities. I think it has highlighted the fact that the weak and more fragile in our society are often overlooked or an unintended afterthought. Just as in my own recent awareness of how our elderly neighbors have been suddenly highlighted in my mind.
Food for thought:
Our eyes will focus wherever we choose to look. We cannot look at our weaker population (elderly, disabled, immunocompromised) while we are looking at ourselves. Just as if we are solely focused on looking at another person, we may find an imbalance with our own needs. But we can choose to stand beside them and use our eyes together to create a vision and passion for giving them more of a voice in this world, and allowing them to be seen and valued rather than overlooked. To move towards them in a posture of understanding and empathy and finding ways to love them well and giving them an equal voice and platform in our society.
And so like my older neighbors who I have not particularly thought much about until now, I think somehow this pandemic is waking people up to noticing those who are more at risk. Suddenly there is this awareness and concerned thoughts flowing through people’s consciousness. And I think there are quite a few of us in this population asking: “Where have you been?” Our elders are wondering: “Why now are you suddenly so concerned with my wellbeing?” Families like ours are perplexed why suddenly we are in the limelight of others worrying and all at once regarding us as fragile and in need of care. When this is and has been pretty much our life circumstances for many years…..
Please hear me: I am guilty, you are guilty, most of us are guilty. I am in no way trying to blanket accusations or assumptions. I just think we all need to rise up in this time of unknowns and see the cracks in our humanity. We need to use this time of forced isolation to pause and reflect, and think of those who may feel isolated on a typical basis. And I think that is what I am beginning to see happening. With us all being forced to be still, suddenly the more fragile in our society seem more obvious. It wasn’t that we didn’t exist before the pandemic. It has merely given more awareness to our existence. This is an opportunity to allow the busyness and typical distractions of our society fall away, and take a hard look at what there is to work with when everything is stripped away. Because I feel at the core of every human being there is at least a fraction of a desire to have compassion and care and think of others. We were created in the image of God. Jesus has compassion and cares deeply for every single person. But unfortunately our society has become increasingly inward focused and driven by the mindset of ‘every man for himself.’
When we were at Walt Disney World last year for Rylie’s Make a Wish trip, there was a moment etched in my brain that will forever exist as one of those deeply monumentally sad moments in our lives. It was the night that we were all walking out of Magic Kingdom, deemed by most as ‘the happiest place on earth,’ while our 12 year old son Hudson was sobbing. I asked him what was wrong and he replied, “I just feel like NOBODY cares about MYYYYY SISTEEEEEERRRRR!!!” It broke him that SO many people overlooked his sister in her wheelchair, and were even willing to push to stand in front of her without any regard for her being able to see the show we tried to watch. We struggled to maneuver through a crowd of people who were less than quick to step out of the way of her wheelchair, often stopping to just stare with gaping mouths. It was every man for himself. And while it is a familiar scene in any theme park I have ever been to, it never ceases to make me sick to my stomach and wonder why we decided to put ourselves through the experience one. More. time. And yet even in our everyday experiences in life, I’m not sure they all fall so far from that of a theme park where everyone is so concerned for themselves. How else do you explain all of the ridiculous toilet paper hoarding during a viral pandemic? A popular toilet paper company is describing it in the news as “uncharted.” An “uncharted” toilet paper crisis?! Are they buying 2,700 rolls of toilet paper so that they can share with their neighbors? I doubt it. Because in these moments, our society as a whole is focused on themselves, not others. Although I still struggle to understand why the hoarding of toilet paper specifically is somehow helpful during a viral pandemic…… but I digress…..
I’ve been recently reading a book entitled Suffer Strong. In it, they discuss physical wheelchairs, but also the idea that everyone has their own ‘invisible wheelchair’ of sorts:
“None of us have unlimited access to whatever we want or whatever we planned for our lives to look like. We are constrained by our marriages or our singleness, by our children or our childlessness, by our obligations or our debts, by obstacles real or imagined. No one enters life or leaves it without feeling bound by something. Some of us have physical wheelchairs, but we all have invisible wheelchairs inside us. None of us can do life all by ourselves. We need God, and we need each other.” -Suffer Strong pg 23
“We all need each other.” Personal priorities often dictate the majority of our decisions as a society. We are an entitled group of people, concerned mostly with ourselves and what will affect only ourselves. Mark 12 gives us a very direct and clear instruction when it comes to figuring out which of the commandments Jesus considered most important. And while many Christians quote and refer to it often, I can’t help but observe that it doesn’t seem like we actually live it out often. Verses 30-31 read, “And you shall love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength. The second is this: ‘You shall love your neighbor as yourself.’ There is no other commandment greater than this.” Period. Notice there are no, “except whens,” or “only ifs.’ There is a period. Like, boom. Mic drop. And if it were appropriate to add current day examples to scripture, the newest version might say, “Like hoarding toilet paper. Buying ALL the toilet paper is not loving your neighbor. If you are primarily concerned with the absurd volume of toilet paper that is existing in your own home, this is an example of not loving your neighbor. Buying normal amounts of toilet paper and offering to pick up some toilet paper for your friend- that is loving your neighbor.” Thinking of their needs and situations as well. And it may even mean sacrificing your very last roll of toilet paper in extreme circumstances. But that would be an example of loving your neighbor ‘as yourself.’ And while we may laugh at this scenario, it really could be a very simplistic example of how to love your neighbor. (albeit weird)
You guys! We have a unique opportunity where most of us are being forced into somewhat of a sabbath and basically canceling of normal life. It is difficult? Yes. Annoying? Yes. Are you going to need extra toilet paper? I really don’t think so… Is it constraining? YES. which is why I believe it is a unique opportunity to take advantage of the space and quiet and stillness, and look deep into our hearts and souls and find out what parts could use some work. The parts that can get so often ignored or excused because we just don’t have time or energy. The really uncomfortable ones that we never want to go near because it is just that – uncomfortable. We have a chance to allow this to directly impact humanity in how we take care of each other without fear, and serve one another selflessly. We can practice now, so that when the pandemic does calm, and we all slowly adapt back to our typical scheduled lives, that we do so with more of an awareness of the needs and sheer existence of those around us. That as we consider our own needs, perhaps we are also considering the needs of those around us. Perhaps this is a gift of giving us ample time to reflect and re-prioritize the things in our lives that perhaps aren’t that important after all. (ie. extra toilet paper, etc) I’m not suggesting that you recklessly abandon the guidelines our government has given us. But I am suggesting that you creatively find a way to love people anyway and without fear. I am suggesting that you consider others as you find your way through this quarantine not in a sense of fearing that people could be infected, but in your awareness that we are all experiencing this together. This is affecting our entire nation. And much of the world. And I think it could serve as a great awakening if more were willing to shift their mindsets outside of ourselves a little more, and look to how others are being impacted. And in doing so, we can begin to shift our mindsets as a whole, post-pandemic, in growing our awareness and compassion for others, and finding creative ways to love and serve them well.
I want to encourage you: Keep texting. Keep calling. Keep checking in on your elders and those who are more immunocompromised. But also don’t be afraid to act and serve and love them in tangible ways. And when this is all said and done, when the last medical mask is incinerated and the last person released from the hospital who was infected – when seemingly normal life seems to come back around, and we can all freely eat in public places, check out library books again, and for the love – we can stop trying to feebly school our children in our homes, then I hope we keep that momentum and incorporate all of that compassion and empathy and tangibly love each other well. I also hope we gain a new appreciation for stillness and quiet, and how powerful those things can be in our growth as people, and in meditating more on the more important things.
In an age of constant distraction, Mr Rogers maybe said it best, “Our society is much more interested in information than wonder, in noise rather than silence…And I feel that we need a lot more wonder and a lot more silence in our lives.”
I wonder how a little more forced silence in our lives could greatly impact our personal growth? If we allow it…
And speaking of wonder, Wonder Woman once asked,
“If the prospect of living in a world where trying to respect the basic rights of those around you and valuing each other simply because we exist are such daunting, impossible tasks……. then what sort of world are we left with? And what sort of world do you want to live in?”
Let’s suffer strong. Thrive under constraint. Increase our wonder in forced silence. Let’s choose to see and love everyone always. And let’s ask ourselves:
“What sort of world do we want to live in?”…..
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