Beauty and the Beast
There is an incredible dichotomy that arises when you have a child who outlives their prognosis of a shortened life expectancy. The initial outliving is all Beauty. The first time you hear a doctor say during a routine clinic visit, “I have to tell you, I did not think we would all be sitting here in this room today, and that your child would be doing as well as he is.” Levi was 22 months when I first heard these words. To my surprise it was our palliative doctor who up until that point had given us no indication of their personal/professional thoughts on Levi's life expectancy. It was just understood by all that his life would be shorter.
In the years that followed there were more ups and downs in Levi's health, which was expected. Each time he caught a cold it almost always became pneumonia. For a kid without a complete swallow and an already fragile respiratory system, pneumonia is always life threatening. The winter after he turned three, was the worst to date. Four rounds of pneumonia and seven lung infections, we all rode the edge of life and death daily. We even hit that place, after the second hospitalization, where we along with his medical teams determined that it was safer for Levi to be cared for at home than in the hospital. As it turned out that was after the first round of pneumonia, there were three more that followed. I am confident that none of his doctors expected he would make it through that winter. No one said as much, however we all prepared (again) for the possibility.
This same winter was the one where the dichotomy of Beauty and the Beast introduced itself in my life. The Beauty was that Levi was giving each round of pneumonia a serious fight and we were able to care for him at home, thanks to the incredible support of our palliative care team. The Beast was that there was no where to go if things got worse, no where. We were home, his final destination.
***********
We do our routine clinic visits in the spring, summer and fall months because Levi can't be out and in the winter as the cold weather is too hard on his fragile respiratory system. This summer, as we met with his doctors, I again heard those initial words from back when Levi was 22 months. This time around it was more than one doctor who was expressing their surprise at how Levi is daily marching his way toward his fifth birthday.
There was again great Beauty in hearing these words from such seasoned doctors, people who have seen it all and then some. One even went as far as to call Levi's life the “Shu Experiment” -- how much love, thoughtfulness, and careful attention can be given to a child, who for all medical reasons should not be with us today, and yet still is? -- How much can a person be gifted with a life of love and joy whose prognosis continues to remain uncertain?
I can't help but honestly say my heart beams to hear such words. Not out of pride, but out of gratitude, for Peter and I know it is only by the hand of the Lord that Levi remains with us this side of heaven. Each day beyond the first is grace. It is only by the Lord's mercy that we have teams of people, like these doctors, who surround Levi with their own love and thoughtfulness. There is great Beauty to have the opportunity to be able to share our life with Levi for so long with so many people. For Levi himself to surprise us and teach us all in what is possible.
There is also a Beast aspect to this Beauty. In Levi living as long as he has, today nearing his fifth birthday, the magnitude of his severe brain damage is very real. As are the challenges that arise over time from a brain like his. Changes in his levels of pain and muscular spasticity: the evolution of each and the interplay between the two. The impact this is having on his risk of hip displasia in both hips and scoliosis in his spine. Which then leads to major conversations about more medications, invasive surgeries, and if there are any “alternative” therapies that could help him avoid the former. Changes in his current caregivers ability to care for him as he gets longer and stronger. Changes in the amount of equipment we need to have in our home to support his developmental needs. Changes in how we communicate with Levi in order to foster his budding expressive communication. Changes, changes, changes!
There are no easy answers as to how to support Levi through the changes he is currently facing. In fact, he is so far “off the map” of what anyone thought would / could be possible. We are all in uncharted territory. We can discuss the possibilities of what can be done, however we have discovered that just because we can does not mean that we should. It doesn't mean that what is possible is also in Levi's best interest and fits within his comfort-focused care plan.
All of these unknowns have Peter and I leaning heavily upon the guidance of the Holy Spirit and our faith that the Lord will lead us through every season. For every season there is a reason...
We trust, as we have from the beginning, that none of this is a surprise to the Lord, for he sees all things in advance and makes provision. It is the process that can be the most difficult part. The gaps between what is known today about Levi, the new changes that are emerging, the conversations we now have to have, and the waiting for the Lord's clear voice as we reach moments of decision making.
As parents, these are conversations we never thought we would have to have because Levi's life wasn't anticipated to be this long (tho he is only four years old). Decisions we never thought we would have to make, forks in the road we never thought we would have to face. Burdens we though we would never have to bear. All of which are the Beast aspect of the Beauty of Levi's unexpected longevity.
Thank you Levi for being patient with us as we navigate how best to love and care for you in ways that allow your spirit to flourish. You teach us daily that peace can be found in holding hands with the Beauty, the Beast, and our Lord.
