“What do you hope to get from Cincinnati?” several people have asked about our intent to see a specialist for our 8 year old daughter, Cee.
I’m not sure how to respond. A drug trial? Earlier options for hip replacement? In truth, I’m not sure I’m interested in either option. The risks are high for both. “Informed consent” is a terrifying reality I never want to confront. Maybe the best answer would be “If I knew what was out there, it wouldn’t be worth going.”
What am I hoping for?
I guess there’s a possibility that we’ve missed something. Overlooked an option. A fresh pair of eyes might be just the ticket.
I have confidence in our pediatric rheumatologist. He can spout off yards of statistics and studies. He’s been in business for decades and treats both pediatric and adult patients.
So when Dr. Rheumatologist told us he would like to hear Cincinnati’s take on Cee’s situation…I was filled with despair.
He is competent. He is trustworthy. And he is out of ideas.
The weight of that is crushing.
Crushed. Like an empty can of soda, I am unable to bear the weight of everything.
And I hate this state. I hate that I can’t wrap my head around playing or reading to the kids like I usually do. I hate that I am sarcastic when I should be sweet. I hate that I cannot really connect with the beautiful family I’ve been given.
You can’t pour from an empty cup.
I’ve seen that quote several places, and it seems to fit the state in which David and I find ourselves. Our empty-can selves can neither stand up under the pressure nor fill up the little cups of our children.
That could be the end of the story. Crushed. Done. Mangled versions of ourselves that are unable to function. Hardly worth the 5-cent bottle deposit. But it isn’t the end.
I finally gave in and saw “Miracles from Heaven.” (The link is to the trailer on Youtube, which gives a pretty good overview.) I was nervous about seeing the irritating theme prevalent in many “Christian” movies, so I avoided it. In case you’ve never dabbled in that genre, here’s a summary: Life is hard. Character finds Jesus. Life becomes easy. These movies bring to life the whole concept of the health and wealth gospel.
Let me tell you, that’s not how it goes in real life.
Jesus’ closest friends? You know, the apostles? All but John met with grisly, untimely deaths. So— guess it’s not all “love Jesus and get all the free candy you want.” It’s more like “love Jesus and get the c-r-a-p kicked out of you.” How’s that for a sales pitch?
I digress. “Miracles from Heaven” tells the story of a child with a life-threatening diagnosis perfectly.
The overly-confident doctors who mis-diagnose and brush off parental instincts. The fear. The doubt. The financial pressure. The way a family tries desperately to maintain some degree of normalcy. The questions. The uncertainty.
The most relate-able part : NO ONE HAS ANY ANSWERS! When the mom in the movie talks to her pastor, he doesn’t have a zingy answer worthy of embroidering on a pillow. His response: He has faced troubles both with faith and without faith, and somehow it’s easier with faith.
I could have stood up and clapped, because the movie got that part right!!! Bearing the trials of life is easier with faith. It’s exactly the reminder I needed.
The real family on whom the movie is based got their miracle. Their little girl is free from appointments, needles, and medications. Ours is not. Our little girl faces a future shrouded in uncertainty and pain.
We are not praying for a miracle. That is not our hope.
After an experience at Mass a few weeks ago, I am fairly confident that a miracle is not in our future. But a recent homily gave me some perspective on why that might be.
Every life throughout all time is like a thread, and our stories are woven together to create a beautiful tapestry that transcends time and space. Each thread is completely unique. Every area of light or darkness is critical to the final piece.
Miracles are not simply rewards for people who have jumped through the right hoops, they are bits of gold on our threads that somehow elevate the piece of the tapestry being formed.
I do not think we are being punished. I do not think that God enjoys seeing anyone suffer or is even apathetic towards suffering. This dark shadow we’re going through is a way to draw attention to the light somewhere else in the tapestry.
Our hope is ultimately a trust in the Maker of the tapestry.
We are scared. We are tired. And when those feelings become overwhelming, it’s time to take a step back.
We see the bigger picture at Mass. Prayer and scripture are great sources of strength, but for us the Mass is the ultimate source of immense comfort. And so when I am feeling crushed by the weight of our cross, I turn to the Church. This both changes nothing– our situation is the same— and changes everything– our situation seems much more bearable.
I can’t get through this on my own. It will crush me. But through the sacraments and people acting as the hands and feet of Jesus for my family, I can avoid complete despair.
I have no idea how this fits into the big picture. But I have hope. Not for a miracle, but hope that our suffering is a different kind of beauty in the tapestry.