Choosing Love Over Death

We live with pain just over the horizon. It's there. It never goes away or even fades. It sometimes peeks through, over the hills, and washes over us unexpectedly. It can take our breath away. It can catch us when we round a bend or cross a path, without warning or mercy.

Perfect little tummy with the cutest little belly button now has a hole with a tube going through. We have had six feeding tubes in our family. What is routine is sometimes mistaken for ordinary. A tube protruding from his round toddler belly is not ordinary. Part of keeping him well being no bottles or Cheerios or bites from my plate at dinner is not ordinary. But it is routine, heartbreakingly so.

In some families, both parents, maybe even grandparents would be waiting anxiously in the surgery waiting area. I keep company with my phone, gazing at sweet pictures of these souls loaned to me. It is not ordinary. This worry is just part of us now. Waiting alone is not ordinary, but it is our routine, and some grow numb to the routine of it. We do not.

Sollie now has a device, clearly defined under the skin of his skull, a shunt, to drain extra fluid off of his brain. I waited for the surgeon to come out and tell me my beloved boy was ok, and that they made a cut in his skull and implanted this THING, and it's working. His head is shaved. He has a crescent shaped incision with enormous stitches to hold him together. None of it is actually ok, but it is our routine.

Feeding my children through tubes is routine

Comforting them through seizures is routine

Medication 28 times daily, from 2am until midnight is routine

Percussion vests and cough assist machines on my end tables instead of lamps are our routine.

The beeping of pulse oximeters, oxygen concentrators, feed pumps, and a ventilator is routine.

The hum of a suction machine fills my home almost constantly, and is very routine.

None of this is ordinary, but it is our routine.

It is our life, because we choose life over death.

Also routine, but anything other than ordinary, are these little warriors and the battles they brave every minute. They fill our home to the brim. They fight for every joy they experience. Sometimes that joy is simply the sound of the piano, sitting in the grass or being rocked to sleep. They are not tethered to the defeats defined by our world. They do not pronounce victory over a ball game won or a perfect test score. Their victories are made up of life living grit. They are victorious when they make it through an illness without hospitalization, they recognize their name, they make it in their stander for 5 more minutes than yesterday, they tolerate 5ml more on their feed bolus. These children wave their flag over what flags should be flown for; laughing, breathing, holding hands, reading stories, smiling, reaching, singing and loving.

Living joyfully with pain and death is a privilege few let themselves be honed by. To be quite honest, we did not set out on a virtuous path to choose it either. We just fell in love. First with each other, then with our Savior, then with these children.

In learning to love well, pain and death are inevitable. Pain inflicted by abuse is life smothering and must be stopped. However, pain walked through as part of living is life giving. It gives life just as it gives permission to take hold to the fact that pain will happen, and it is not ordinary, and it is not ok, but it is the routine of living and loving our way through it. Pain is recognized as part of being in a place that we need to be saved from, even if it is from ourselves.

By giving us this life where we know death and pain, we also know joy purely and faith as a constant. Knowing the difference between redemption through pain and life smothering pain is not difficult if you have experienced both. For those who have not experienced pain wrought by loving well, the reflex is to run from even the whisper of the possibility of pain, and to run "like a bat out of hell" from death.

It is a poverty to not know pain by loving well.

To us, it is the only way to live now. We can not ever go back to living and believing that death, pain, inconvenience, and difficulty are the lighthouses that signify this ship to steer clear. I have much to be delivered from, selfishness, pride, greed, and the list goes on. My ship of deliverance will never reach its destination if I look to the light of self preservation and fear.

These souls that have been entrusted to us deserve to be loved according to the immortality and miraculous nature of their value to God. The only way to do that is to keep this ship going forward. We must use the light that illuminates the worldy dangers of pain to instead lead us through that pain into safe harbor and then deliver us home. Isn't that what the point of all this is anyway? To lead each other home?