I am by nature, a hopeful person.
I believe God gave me a gift of hope so I could keep faith in the midst of difficulties. I aspire to hope. I believe that — no matter what the circumstances — God will “work all things out for good.” (cf.Romans 8:28)
But I am not necessarily an optimist.
The dictionary defines optimism as “hopefulness and confidence about the future or the successful outcome of something.”
I fit the first part of the definition if heaven is the ultimate outcome. But the latter part of the definition of optimism mostly refers to believing things work out or succeed in the near future. Life has taught me that’s not always the case.
I tend to examine difficult scenarios to find greater meaning and purpose. I sometimes imagine the worst so I can plan and hope for the best. An optimistic person sees things succeeding and doesn’t give much thought to negative outcomes-transformed or not.
In the early days of my daughter’s diagnosis of a brain tumor at three months of age, there was not much optimism — but we still had hope.
The conversations around us were about the worst-case scenarios of a large tumor compressing Jo’s brainstem. We were told it needed to be removed, but the brain surgery would likely kill her.
My husband rode in silence in an elevator with two young doctors describing my daughter’s dire case as they discussed the infant that likely wouldn’t make it through the pending brain surgery. That was 25 years ago — before they posted signs reminding professionals not to “discuss patient information” in the elevator.
Optimism didn’t surround us in those early days. But hope carried us and infused our souls, giving us a perspective that transcended our circumstances so we could see beyond the dire predictions and trust the Lord would work all things out for the good.
The Concise Catholic Dictionary defines hope as a “theological virtue, a supernatural gift bestowed by God through which one trusts God will grant eternal life.” It says that “hope is composed of desire and expectation together with a recognition of the difficulty to be overcome in achieving eternal life.”
It was hope — desire and expectation — that beckoned me to pray and randomly open my Bible to a scripture that has been the foundation through the ups and downs of this journey of caring for a child with a rare disease.
I asked the Lord for the wisdom to understand His plan in these dire circumstances and for the grace to trust Him no matter what the outcome.
I randomly opened my Bible to 2 Corinthians Chapter 4, “Present Weakness and Resurrection Life.”
The entire chapter of scripture has become a roadmap and navigational tool to guide me through many difficult circumstances in the past 25 years.
“We are hard-pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.” (2 Corinthians 4:8-10)
There is so much wisdom in that one chapter of the Bible that I know it will take me my lifetime to unpack. It gives me hope.
For the last six months or so, my daughter has been struggling with more bleeding in the brain, a result of the progression of CCM3 — the rare neurological disease Jo was born with.
The rate of hemorrhage has been steadily increasing and has caused more of a neurological and functional decline. So thanks in part to the years of research and support offered through the Angioma Alliance, Jo’s doctors and I have been discussing experimental treatment options. The discussions involve weighing the risks and benefits of treating or not treating with these experimental drugs.
And one of the hardest things about deciding to treat Jo with one of these drugs is: “How do we measure success?” Most of the studies are new and don’t have a lot of research on humans with CCM3.
Our “hope” for this individualized trial is that the drug reduces the rate and extent of hemorrhages in her brain over the next few months/year without further complications in Jo’s functional health. But the medication lowers her heart rate and her blood pressure, which can make it harder for her to function day-to-day.
The risk-benefit ratio is not easily measured, even with regular brain MRIs. I’ve spent the last few weeks weighing and measuring things in my mind, wondering how we measure outcomes as I read about data presented in the research. As we start this new drug therapy, we are also measuring and recording Jo’s blood pressure and heart rate a few times a day.
We spent last weekend in the epilepsy unit measuring brain waves and blood pressures. While I am happy to report the anti-seizure meds are working, the results also showed Jo’s brain waves are slowing down because of the injuries caused by frequent hemorrhages and the lesions in her brain. It was a good news/bad news scenario.
The experiences of these past few weeks lead me to this philosophical and faith conundrum; hope is hard to measure.
This question plays in the back of my mind:
How does one measure hope?
A seemingly hopeless situation is permeated with hope and evidenced in the laughter and smiles on my daughter’s face. I captured Jo’s laughter in a photo from the hospital last weekend. Hooked up to monitors and frequently in pain, Jo took delight when I gave her a Valentine present: a special teddy bear adorned with farm animal prints and a scarf that said. “Jo’s Farm.”
A simple gift inspired Jo to hope beyond the walls of the hospital room to dream about sunny days on her backyard farm. Jo’s laughter inspired more hope.
When Jo laughs, her whole little body shakes with laughter and she gives me hope. But how do I measure this hope made visible in Jo’s laughter and the smiles on her face?
Hope is tangible and real, experienced on both a physical and spiritual level. But how can we measure something that extends beyond the realms of this world?
The difference between optimism and hope is that optimism is limited to our ability to see positive outcomes in earthly circumstances. Hope extends beyond the realms of this world into eternity.
The Apostle Paul described hope as “an anchor, firm and secure- which reaches beyond the veil” of this life and into eternity (cf. Hebrews 6:19). In this description — and I concur from experience — hope is a tangible reality that changes one’s perspective on difficult situations and outcomes. In doing so, hope can impact outcomes by raising our expectations for better days ahead in this world and beyond.
I was discussing Jo’s case with one of her health providers recently. This person isn’t really committed to any faith, though he believes in the existence of God. He said to me, “When you look at Jo’s brain MRI and then you look at Jo, there is no other explanation for her life except God. Jo is a miracle.”
Conversations like these give me hope that even through the difficulties of life, my daughter inspires people to believe in miracles. She gives us hope that we can see and touch and feel. Yet, this hope really can’t be measured.
In that roadmap scripture I received 25 years ago, there is a plan as to how to continue on in hope despite any difficult situation.
“..We do not lose heart. We fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” (2 Cor 4:16,18)
None of us is guaranteed an easy life. But we can always have hope.
This hope we carry is immeasurable and eternal, capable of carrying us through life’s many difficulties and leading us to God.
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