Mind The Gap

Mind The Gap

The London rain. The smell of exhaust. The determined click of British heels on cobblestone. The flash of red from a double decker bus as it turns the corner just ahead of me. The brick architecture of the flats, tall, proper, at attention in a line down the endless winding streets. The lift and flow of the British accents all around me. The incredible helpfulness of complete strangers in the subway.

This is London to me. This and a million other little flashes of sound, and smell, and image. Our flat overlooks a little Fromagerie. This little shop has a life of its own. A rhythm. Every morning at 2am trucks pull into the small lane and unload boxes of fresh vegetables, fragrant onions and garlic hanging in strands, lettuce still dewy and crisp. At 7am the proprietor pushes open the heavy black oak doors and the smell of cheese and bread fill the roadway. Drifts up to the open window of our flat. Beckon us down. Wheels of freshly made cheese are stacked up on the window. Pungent and delicious. 

             

There is very little I love more then traveling to a new country. Experiencing the sights and sounds, the tastes and culture. Maybe it is because this isn't a sight seeing kind of trip, or maybe it is because all our hearts are filled with the reasons we are here, or maybe it is because they also speak English here, I hadn't expected to experience such a difference in culture. But there definitely is.

I have learned that just because we both speak English does not mean we understand each other. I have learned that I apparently have a strong enough accent that could cause good English folk to stare at me wide eyed as if I had just spoken Swahili. They look at my mouth as I talk as if to try to use my lips to decipher this foreign dialect called "American." I too seem to be straining to catch a familiar turn to the words. The bathroom is the toilet and the elevator is the lift. I only hope I am not butchering the Kings English too much. One doesn't want to be a "Bloody uncouth American" after all...

I have never really been intimidated by foreign public transportation. After all, mom and I navigated the subways in Rome, Italy, how hard could the London Underground be? They speak English here after all! Well I will admit that I has taken a bit longer for us here then in Italy despite the apparent English speak advantage. However we are now saying things like "Oh that wouldn't take us too long to get there, we could just hop on the underground at Baker Street, get off at Piccadilly Circus and take the 274 bus." You know, terribly native things like that.

The first time we rode the Tube (underground, subway, etc.) I almost laughed out loud when the British voice said very properly "Mind the Gap. Mind the Gap" as we stepped on and off. Very properly you understand. "The Gap" refers to the, at times, rather substantial space between the subway platform and the subway itself. Sometimes inches, others almost a foot of darkness stretches between where you are and where you are headed. And, because we are here, they would never say anything like "Hey, watch it!" or "Be careful" or "Watch your step people!" Mind the Gap. I LOVE it! So kind. Mind it. Look out for it. Pay attention to it. Don't fall into it.

So far the experience at Harley Street Clinic has been a good one. Brilliant minds have come together. Minds who invented pieces of equipment that navigate little ones brain matter. Minds that care and work toward progress every day. I sit here and it is 2330 at night on Friday March 3rd. Tomorrow night Julianna will check into the hospital for the CED catheter placement Sunday morning. it is a strange marriage of distraction and reality. Keeping busy with activities, and managing the medical needs and expectations.

Mom and I are so thankful to be here. It is worth every sacrifice. Every moment. Our goal, to make every moment easier for them. To live these moments of the unknown together, in prayer and solidarity. It is surreal being here. Walking up the street and seeing the Harley Clinic sign over the door. The hope of so many, the promise of nothing, the gift to some. The doors have opened, Father, we walk through the unknown holding onto Your ever-present hand.

Its hard not to wonder what life will be like after Sunday. Will it be different? How will she handle the surgery? Four catheters into her precious brain stem...Both miraculous and terrifying. 

A moment on a very personal topic that has been is close to my heart. I am realizing that the world is a kind, harsh, amazing, and sometimes judgmental place. It is so easy to sit on the sidelines and make judgments about others actions and decisions. I know I have done it too. Our minds tend to always frame  our interpretations of life into "What would I do if that were me?" Too often we respond to others reality with that in mind. I pray you are never in this reality. Unless you have had a child with terminal brain cancer...heard the words "Go home and make memories while you can," you cannot say what you would do. How u would spend your time. Whether you would "Fight" or "Enjoy the time left." 

Unless you have had the daunting responsibility of gathering together more money then your house is worth in a matter of weeks, just to give your child a chance, more time...you can't judge as to whether or not you would ask for money from others. Unless you have looked into their eyes, heard them talk of what they want to be when they grow up, all the while knowing they likely won't....unless you have heard them sob that they don't want to die, felt your heart break open in your chest, unless you have asked yourself "quality of life vs. quality of life...for your child...." You cannot weigh in on others choices. We each follow the path God leads us on. It may look different for each of us and that it OK. I will leave it at that...

I was struck with two thoughts yesterday as I heard those words "Mind the Gap." First of all, it feels like we are bouncing back and forth between parallel realities. Both real life, one where we are all together, walking down the street, experiencing a new city. Together. Julianna with her pigtails and new boots. Pink purse and ready smile. The glue in the middle of a family of diverse personalities. Normal. The other where we are walking up the steps of the Harley Street Clinic and using words like MRI, Surgery, Anesthesiologist and recovery time. Where we wait with baited breathe for the text that it went OK, that she has woken up from sedation and everything went OK. THE GAP. Between the way it has always been and the way it is now. Between the old normal and the new. Mind the Gap. It is a real gap. No sense pretending its not. But the devil would have us focus on the difference. Stare down into the dark space and experience the fear of falling in.

Mind the Gap. However I can testify that Jesus has and always will be there to lend us His hand as we traverse back and forth between these realities. He tells us:

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."

John 16:23

He told us there would be a GAP. Between the way He wanted for us and the trials and sorrow we live. He also told us that we should "take heart" He has won this battle. He has conquered this enemy.

The second thought around the phrase "Mind the Gap" is this. I have never been one who liked the unknown. Roller coasters with unexpected turns. Ya..no. (Except for the one Julianna and I rode on like 4 times in California! Ya, ONLY SHE could have convinced me to do that one! Love that girls daring spirit!) Usually I like the map in my hands, the plan in my head. I am not really amazingly spontaneous. I like an element of predictability to my life. In comes DIPG. A reality where nothing is predictable. Where the mind searches for patterns to treatments, complications and outcomes within the community and there is none. Random it feels. No way to know. Every child is different. 

I realize that we are standing on a subway platform. The distant sounds of the train resonant down the dark tunnel. The smell of the underground transit fills my nostrils. The push and hurry of the crowd all around me. The subway arrives, red doors open with a swoosh of air and an accented voice reaches down the tunnel, "Mind the gap. Mind the gap." I lift my feet and step toward the gap. It is wide, dark, foreboding. Why is it so wide? Why is the step into the subway so high? What lies down there in the darkness that would snatch me up should I fail to heed to warning?

I don't want to find out. I lean in and my foot finds solid, firm footing inside. The way out of the tunnel. Taking me from where I am to where I am going. The unknown. Yet is it? I may not know the route it will take but I do know its final destination. I may not know how long it will take to get there but I do know it will get there. This Gap between where we are and the next place, heaven. We may not know what is coming but we do have a Friend how died to close that gap. To give us assurance of the final destination. He laid his broken self down, so that we wouldn't fall into the darkness of fear. So we could, with confidence step into the future. On firm footing. He paid the price so that we won't fall into the GAP of brokenness. 

We must keep our eyes fixed on what is ahead. On the promise of the ultimate tomorrow. we must not look down into the darkness. if we do? It will draw us in. I know. I have been down there. I may again someday. Only human am I...But no matter where we go, He goes with us. No matter what we do, He holds us close.

We must focus on Jesus, the source and goal of our faith. He saw the joy ahead of him, so he endured death on the cross and ignored the disgrace it brought him. Then he received the highest position in heaven, the one next to the throne of God.

Hebrews 12:2

Sending Love from London. Thankful hearts for each of you. your prayers, kind words, generosity, compassion, solidarity, and love. Thankful for Team Julianna. The most amazing group of people who come together in support of the most amazing little girl. Whose heart is gentle, how loves her Jesus, who wants others to know Him too. Thank you every one...