Chapter 14: The Light in the Middle of the Tunnel

The Light at the End of the Tunnel.... it's a commonly used phrase because everyone who has been through a particularly challenging stretch in life knows the importance of looking forward to an end to the trial.  When we can see the end or the promise of a new beginning, we have greater strength and endurance to keep walking through the darkness towards that light.  Without a light, tunnels seem to stretch on indefinitely and the perseverance and hope to keep trekking can seem impossible.  I remember vividly Al and I lying in bed at night the first couple of weeks after the babies were born and him saying "2 months.  We can do it.  2 months and it will be their due date and they'll be home from the hospital and everything will be how it was supposed to be.  We can do this for 2 months."  It was like our little mantra those early days when preemies and the NICU felt so overwhelming.  We would just stare into that light and keep on.  And then within three days, the babies were suddenly diagnosed with a lifelong and life threatening kidney condition and were transferred downtown and Dr Doom and Gloom was saying 6 months to a year in the hospital and that is assuming they survived the long list of risks.  And we couldn't see the light anymore.  All we could see was a long dark tunnel full of twists and turns that we were afraid to navigate our way through.  We had no idea when they would come home and we felt like we did not know what to look forward to or how to stay hopeful.  Without a light, the tunnel felt defeating.

But one lesson I learned then and still cling to is that you won't always have the sight of a light at the END of the tunnel.  Sometimes there are just too many bends along the way to get a glimpse of it.  Some tunnels are so far reaching that there may not truly even be an end.  But, there will be lights along the way.  Instead of straining your eyes to see to the end, I have learned to look for a light in the middle.  The tunnel may not be over but it's a point where there is a break and a moment of light along the way.  And those lights during the tunnel will sustain you far more than just charging to the end ever would anyway.

The day after the meeting with Dr Doom and Gloom, I caught a glimpse of what would be my biggest light in the middle of our NICU tunnel.  Knowing how scared and overwhelmed I was, my best friend Hannah from Australia called me and told me she was coming out to visit me and stay with me for a couple of weeks.  She told me I could pick when and she would be there.  It was exactly what I needed to hear that day! I had lived in Australia for 10 years, lived with Hannah for several years during that time and since living in America only two years at that point, no one had come close to filling her shoes. Since I knew I would be going back to work and I knew this road was going to be long and I would need something in the future to look forward to, I picked early June.  Hannah booked her ticket that week and my calendar suddenly had this big light shining up June.

I had no idea when my babies would come home.  I had no idea what dialysis would be like.  I did not know when they would get transplanted or anything about the future.  I wasn't sure what to look forward to with them so I looked forward to Hannah's visit.  For months on hard days, I would count down weeks and then days until she was there.  When I did feel myself getting swallowed by the dimly lit tunnel, I looked to the light of her arrival to keep my spirits up.  And it worked.  I just cannot describe what a blessing that joyous anticipation was during those months.  I hadn't realized until Hannah booked her flight how much I needed my best friend and how much it would mean to me to have her there in my NICU world lighting it up with her sense of humor and empathy and ability to find joy in all circumstances.

June rolled around.  The babies were stable.  Taking one kidney out had not had a huge impact on their health (which we expected but had hoped none the less it would) so we knew we would be removing the other kidney and using their now healed dialysis catheter soon.  We were basically just waiting for their late June surgery date with all kinds of apprehension at starting that process.  School let out for summer so I was no longer torn between my two worlds and Hannah arrived that week.  I could barely contain my excitement seeing her there in baggage claim, my bright light finally being there in front of me.  And of course even though it was like 10pm and I told her we could go home and sleep she was like 'Nope I want to go to the NICU and see those babies now.  I don't care if they are sleeping, I just need to see them!' Sharing them with her and seeing her love them and hold them and delight in them brought me more joy than I could hope to explain.

The next two weeks were just pure joy.  We had found happiness in our hospital routine and our days had been sprinkled with laughter and contentment even despite the difficult circumstances but nothing compared to the joy of those two weeks.  Every morning we drove nice and early down to the hospital and Hannah and I would hold the babies and play with them while the doctors made their rounds.  Hannah took as much joy as me in picking outfits out for them each day and capturing their expressions on camera.  She would help me feed them and point out funny things going on with them or around us that would make me laugh and see this new world in a whole new light.  She herself is a doctor, a psychiatrist who was fresh out of medical school, so rather than finding the medical side of things daunting, she found it fascinating.  She would soak up details and I reveled in having someone anticipating lab results with the same enthusiasm I did.  She created nicknames for the doctors and nurses that to this day make me laugh when I think about them.  Instead of feeling like living in the hospital every day was depressing, she made me see all the humor and joy in it and I was now pretty sure our daily life had more comedic material than a Seinfeld episode.

Every day for lunch we would leave and go have a delicious lunch at the nearby shopping center. We would stroll the shops and she was fascinated by all the American clothing and sales.  It was the first time I had shopped in 6 months and it felt so refreshingly normal.  We would head back from our lunch break to then spend the afternoon back with the babies, taking turns feeding them, changing them and making them laugh.  Al or my parents would come up many afternoons and reveled in the new joy that Hannah was bringing to our old routines! She never rushed me to leave or go do sight seeing or fun activities.  If I wanted to stay at the hospital until late and rock them to sleep, she would stay with me.  If the babies were asleep early or super stable and I was up for leaving early, she was always up for a pit stop on the way home at a cupcake shop on her quest to find the best Texas cupcake.   Some nights we would go out for novelty dinners, some nights we would come home and Al would cook for us, some nights we would meet my parents or friends.  But every night we would stay up sitting in front of the television laughing about anything that came to mind like we had for the 2 years we had lived together in college.  And every night for those two weeks, I went to sleep happy.

I had my greedy moments where I felt sad that my dear friend was going to have to leave and go all the way back to Australia.  I wished desperately that she lived close by and that they wonderful days could be more frequent.  But, I did not want that sadness to taint the joy so as her leaving was approaching, I focused on just making the most of every day.  I will always remember her last morning and us sitting up at the NICU with Addie in her arms and her lamenting how much she would miss her.  Hannah's suitcases were packed and she was dressed for her flight and so of course Addie chose that moment to spit up all on her.  Being the good sport she was, Hannah just laughed and said that now she would be extra sad the whole flight when she kept getting whiffs of Addie's spit up on her and missing being with her.  I dropped Hannah off at the airport and sobbed and sobbed the whole way back to the hospital.  I would miss her dreadfully sitting in my NICU chair the coming days without her there making me laugh with her running commentary on NICU life.

Thankfully though, the light and joy that Hannah brought did not go away when she left.  She left me with greater joy, an ability to laugh at the world around me and a renewed spirit.  It would be 18 months before I would see Hannah again and I miss her every day I do not see her but my weeks when she is here are God's gift to me, his lights he plants during particularly dark moments in this road.  Hannah and I had no idea when we picked those weeks in June that within two weeks of her leaving, I would be facing the worst couple of weeks of my life with Addie's heart failure.  We picked dates out of convenient but I know God ordained those dates because I would need those two weeks of joy to survive the two weeks of heartache coming.  My two weeks in June were definitely not the light at the END of the tunnel but it was my light right in the middle of the tunnel. It was my refreshment and my break and it kept me sane and reminded me that no matter what you are going through, there will be laughter, friendship and joy along the way.