Let me preface today’s post by saying that it might be too dark, too filled with questions, too real for you today. Most days I keep my focus on wonder, on the light, on hope. But, let’s be real, life isn’t always that bright. Yes, I still believe that God has a plan. Yes, I still believe that good wins over evil. And, yes, I know that because of Christ, there is hope. But … I also know that sometimes our perspective of where we are is shadowy and requires a mournful lament of our helpless state.
So … stop reading now if (in the words of Jack Nicholson in A Few Good Men) “you can’t handle the truth”.
It happened again, like it has happened dozens of times in the past few years. One of our daughters had spent numerous hours in the ER, looking for answers, for relief from pain, for the assurance that it was just another flare and not a bowel obstruction or kidney stones or ulcers (just to name a few possibilities … avoiding the less appropriate for public discussion).
Again, it was just a flare … nothing serious.
Again, all they could do was offer IV fluids, pain relief (in the form of acetaminophen or opioids).
Again, they headed home, still in pain.
I didn’t hear about this, latest episode, until she was headed home ’cause … what can mom do anyway? why cause her to worry? Sometimes I hear about it before they go to the ER, looking for another to help them decide if it’s worth it to sit, in pain, in uncomfortable ER chairs, for hours (though they have discovered that vomiting in the waiting room is most efficient way to fast track themselves through the process of triage).
For one it took almost two years and the other four years before diagnosed with Crohn’s Disease. But the pain began (for both) years before pursuit of origin of pain and eventual diagnosis (one of their diagnosis was delayed because the specialist didn’t look in the most common area affected by the disease, delaying her diagnosis by over a year).
SO many doctors, specialists, tests, procedures and even surgery to get to a diagnosis!
Crohn’s Disease is an auto-immune condition (their immune systems fight their own cells as though they were invading cells) where inflammation affects the intestines, causing ulcers to form, thickening of the intestines and scar tissue. This is the Coles/Cliffs notes description. Suffice it to say that it is (quite literally) a painful, stomach-churning, shitty disease.
It is said that about 1/5 people with Crohn’s disease have a family member with it … our family has 2/5.
Our girls have experienced the relief of human biologic medicines that have given both measured relief … temporarily. Steroids are another (short-term) option, but … sigh … anyone who knows steroids knows that sometimes the medicine is almost worse than the disease.
Both are now currently waiting for the next help … the next (short-term) miracle.
Speaking of miracles …
I believe in them. I believe in the miracle worker Himself. The one who formed these souls, so precious to this momma’s heart. Each of their existence alone are miracles. They were prayed for, prayed over, dedicated to God, from before either took their first breath (and one of them took her good ol’ time to take that first breath).
The other night, I reached my breaking point. After hearing about this latest episode, from my girl, sobbing in pain … again (after she left the hospital). I uttered words that I just never imagined coming from my lips …
I just don’t see any hope in this.
I am not one who feels they deserve better than others. Nor do I think that life is without pain, or struggle or difficulty. But … this is hard, really hard … not for me, but for them. Their struggle is one that touches every other part of their life … from work, to relationships, to physical stamina, to travel, to mental health, to future dreams.
A few days later, I am still struggling to find hope in this shitty mess.
This is me, being really real today … lamenting, like the Psalmist (13:1) who cried out “how long, O Lord …”
And I do believe that hope will resurface, somewhere, sometime, “in the shadows of disappointment and darkness” (Nouwen).
“Hope is not dependent on peace in the land, justice in the world, and success in the business. Hope is willing to leave unanswered questions unanswered and unknown futures unknown. Hope makes you see God’s guiding hand not only in the gentle and pleasant moments but also in the shadows of disappointment and darkness. No one can truly say with certainty where he or she will be ten or twenty years from now. You do not know if you will be free or in captivity, if you will be honored or despised, if you will have many friends or few, if you will be liked or rejected. But when you hold lightly these dreams and fears, you can be open to receive every day as a new day and to live your life as a unique expression of God’s love for humankind. There is an old expression that says, “As long as there is life there is hope.” As Christians we also say, “As long as there is hope there is life.”
Henri J.M. Nouwen, Turn My Mourning into Dancing: Finding Hope in Hard Times
itsawonderfilledlife 