Home Wrecker

I’m supposed to be doing other things. Not earth shattering things, just normal stuff like laundry and dishes right now. Instead, I just put Sollie back to bed. I am now sitting here typing and listening. I am waiting to see if the seizures he is sleeping through will calm down or wake him up…again. I can’t clang around the house right now because he startles very easily when he’s having clusters of seizure activity and any little noise could wake him up. He has excellent hearing. Of course. There really isn’t anything to change about his seizure meds because next week he is scheduled by neurosurgery for a surgical shunt placement. The fluid in his brain has rising pressure, so a shunt must be placed in order to drain the extra fluid into his abdomen. His optic nerve has hemorrhaged so this all must be done very soon in order to save his life and his sight. There are still toys on the floor. There is laundry on the dining room table. Crayons remain on the kitchen counter.

Solomon is my own beloved home wrecker.

I can remember when I always vacuumed out my van on Friday. I always stripped sheets and got the crock pot filled on time. The heart of the matter is that Sollie was supposed to live six months, TOPS. He is now 27 months old. He was diagnosed incorrectly before he was born. We were told he had anencephaly, which means he had little to no brain tissue, just a brain stem. Children with this diagnosis typically live about 6 months or so. We got the call to fly to Florida three days before he was born. I called hospice. This child would not die alone. We would walk him home, holding him, to meet Jesus.

We are still walking.

You see, when Sollie was born, the neonatologist called me just as we had landed in Orlando. He informed me that Sollie had a good bit of brain, just enough to make his life span very complicated with an unknown duration. The majority of his brain filled the other side of his skull, so they could not see it during the ultrasound. He has schizencepahly, not anencephaly. He has a very severe kind of his brain malformation, and it changed the entire situation. We went from the expectation of hospice to the knowing of an extremely complicated and rare diagnosis. I literally googled Schizencephaly as my dad picked us up at the airport on the way to the NICU..

Even though we (foolishly) thought we were prepared, Sollie tipped the boat. He screamed for hours on end. When my other little ones were detoxing, we knew it would end. That horrible poison would eventually work its way out of their tiny bodies and they would settle down. Sollie, however, would not be growing a brain anytime soon.

He has gotten so very much better. Little by little, we have chipped away at making him comfy, even happy in the midst of a devastating diagnosis. As I rocked him tonight I was just so grateful that he is here, breathing, heart beating, sighing, looking at me. I know that he will not always be here.

We already had a houseful when Sollie was born. We had two kids in wheelchairs with tracheostomys. We had gtubes. We had seizures and meds and complications. What we did not have, yet, was death. When Isaac died, my entire perception of reality shifted. I fell from living according to a lie, to clinging to everything I now knew to be….

TRUE.

My life before all of these kids, with all of these diagnosis and equipment was empty and exhausting. I thought things like sticking to my schedule and checking things off were extremely important. These things matter, but they are not important. There is a big difference. We can not live willy-nilly, with a dirty house and no schedule. The difference is that my security, my grounding force is not found on my calendar, or in my pristine counters.

Sometimes I have to repeat this to myself pretty often, like a mantra. This train of thought is engrained deeply into me. It is a natural default to depend on things that I can control, or think I am controlling, for my security. With my personality, coupled with the circumstances of my own childhood, however, this way of thinking became a suffocating illness of my own. Control was my religion.

Then, I was awakened to the suffering of children through circumstances that could only be orchestrated by Jesus himself. My heart was ripped out of my chest by the sight and knowing of children, suffering and dying, alone. When we as a society decide to relieve a person from suffering through their unnatural death, we are really dying to the possibility of a life lived dependent on the daily showing of Christ. WE are robbed of knowing true bravery, pure faith and blazing love in exchange for the false religion of control.

In reality, we control nothing. We cannot control the wind, the rain, or even the beating of our own hearts. The only thing I can control is my will. Our most gracious and loving God gave us the freedom of our will. My will chooses the love of a God who entrusted to Doug and I the most precious thing in his sight, the souls of the most vulnerable. It is an honor that I fail daily to live up to. My children bring to light that it is impossible to live this life without Him.

My children are not wanted by a culture that despises what they are the face of; loving without expectation, living dependently, and walking without the fear of death to cripple us. They remind us that their needs far overwhelm the natural reserves of any one person. We must depend on Him, living in each other, to give these vulnerable souls the care that they deserve.

So I live in a house full of home wreckers. They came in, got between me and my selfishness, broke my heart, and left my old life to die. As a result, I now know the truth. I live by the truth. I repeat the truth to myself everyday. I do not have to write it on a post-it or in my planner to remind me. I do not have to create a lovely stencil on my wall or on a canvas to keep me to it. It is branded deep in my soul, it was burned there the instant that I let my old life die, the very same instant that I felt Isaacs life slip from this world into the arms of my Christ.

Today is all we have.

Hold on to the good of yesterday.

Pray for peace in what tomorrow brings.

Smell Sollies hair, drink him in, memorize the curve of his nose. Kiss him every time you can. Linger at his bedside watching the beautiful rhythm of his breathing. Read another book with Aaron. Notice his curly eyelashes. Make sure Malachi is not laying on any wrinkles. Run my fingers through the tiny ringlets that cover his head. Pray with my teenager, marvel at the varied shades of blonde. Talk with my youngest girl about school and her love of peanut butter. Sit with Liz as she tells me her worries, reassure her that her trach and feeding tube scars are signs of an epic battle, that she won. Snuggle the youngest and be grateful that he is here today with us, filling our home.

If your home is just what you think you want. If you go to bed on time and are very comfortable in the way you live, then I would invite you to consider that your comfort is a lull into the numbing lie of control. If you are comfortable in such a twisted and cruel world, maybe you need your own version of a home wrecker too. I love mine. I would die for them, and in some ways, I have. Along with that death though comes the miracle that I get to glimpse heaven every day. I know the love of Christ in a real way every day. So many lost people climb mountains, hike up cliffs and swim oceans looking for God. All I have to do is kiss my Solomon, rock the baby, and wake up in the morning to do it all over again.