During our stay in the NICU we would try to be there when the team rounded on Ben. The nurse would give report and the doctors would all discuss the plans and the respiratory therapists had notes about how he was doing on the ventilator. We, of course, were always full of questions about how Ben was doing, what the next step was, how were things going forward so we could get this boy home to us as soon as he was ready.
We would be daily reminded by them that in the NICU it’s always baby steps – tiny, tiny baby steps. Two steps forward, one (or two!) steps back. They didn’t want us to focus on his homecoming, they wanted us to focus on the fact that he had taken 10ccs in his feeding tube or that his chest x-ray looked incrementally better or that his culture had finally come back clear. There’s not a lot of planning in the NICU – it’s mostly about day to day survival. In a place where miracles are being desperately prayed for and there are too many days filled with tears and complications, it’s literally life or death. You can’t plan a lot in the NICU.
But I’m a planner – it’s how I cope, creating contingency plans and learning about our options and researching. It’s how I can feel some control over the areas I can influence, helping me better let go of the things I cannot change. I’m a mom – these are my babies. I plan.
Plus, I have six babies – planning is key to making it through the chaos.
I’m sure there were times that our medical team was bracing themselves during rounds, wondering how many questions I would be throwing at them that day and how unrealistic my hopes were. Sometimes they would take notes so they could go research and get back to me with answers. Mostly they just gently reminded me that we didn’t have a lot of answers and we were all just waiting and seeing. Some days they would tell me that it was truly incredible that Ben was doing so well, and other days they would sit us down for an explanation of the complications. Always they would make sure I knew that Ben’s presence with us still was a miracle and we didn’t know what was going to happen next.
But because I’m opinionated, I would tell them what OUR plan was – our hoped for timeline, what we wanted to see happen, how we anticipated things going on this journey so we could get all of our kids together under one roof. (Having one baby living at the hospital and two little ones almost an hour away was torture for this momma.) I needed my family together, and I wanted to know what we were going to do to make that happen ASAP.
At first the care team seemed rather skeptical, and unsure of what to make of this crazy mom who seemed very much in denial about how serious the situation was. They sent the social worker into us to assess if we knew the gravity of his condition, what we face when a baby comes 4 months too early. (We did understand somewhat – but that didn’t make us hope any less.) Then over time they seemed less skeptical when I made requests, because to their surprise some of these little things started happening. Oxygen settings weaned down, weight gained, tiny changes that amounted to ENORMOUS miracles. And I gained more confidence in voicing my thoughts, in trusting the whisperings that came when I was searching for answers and praying for direction. I know that parents can receive guidance and inspiration when it comes to their kids – and I had that verified in a thousand ways during our hospital stays. There were days when the team literally laughed at my announcements (not mocking – just amused and shocked and we were all friends at this point so it was okay – I was laughing, too.) When I told them I was going to hold him while he was on the vent and under 2 pounds – that’s a great story! Or when I said we were going to start nursing, when I let them know what day I planned to bring my son home. Because against all the odds and despite all evidence to the contrary – things were happening. Things that didn’t normally happen, through it all this gigantic spirit in this tiny body was making his opinion known.
One day when I was sharing our agenda for the week we were all laughing at my absurd prophesies – I think I had told them that Ben was going to wean off the vent and be on CPAP by the end of the month, which we knew wasn’t very realistic. But one of his team members said even though we were all laughing, she believed me – because she said Ben had his own agenda and his own plans, and I was simply speaking aloud my son’s plan. We all observed that he had his own way of doing things, and he was going to keep surprising us. Against the odds, miracles seemed to follow Ben.
Ben’s wish list had some seriously unrealistic items – including the northern lights. People travel thousands of miles across the world, spending thousands of dollars and staying for days (weeks!) to try and catch the northern lights and still sometimes miss them. Despite the forecasts, there’s no predicting exactly when the lights may show up. Just being invited to Alaska itself was HUGE, and amazing and we told Ben that we would go but may not see the lights at all. The town was praying for the lights to show up for Ben, but we needed clear skies and the right conditions and I didn’t want to get his hopes up. I was so nervous as we went to bed that first night – praying for even a little bit of the lights to show, praying if they did show that Ben would be able to see them, praying that everyone making this happen would know how grateful we were!
Then the knock on the door – THE LIGHTS ARE OUT!! And throwing snowsuits on little ones and laughing through my tears and racing out the door and THERE ARE THE LIGHTS!! And Ben could SEE THEM!! He stood, mesmerized. We hiked up the hill and cuddled together and stared in awe as the sky danced before our eyes and the stars shone and Ben saw the northern lights.
Later during our stay I was talking with one of the visiting reporters and I said I didn’t want it to sound like I’m taking this for granted, because I understand this was truly shocking that everything aligned so perfectly and we were able to witness this. I know that. But at the same time – I’m not surprised. Because this is Ben – it’s Ben, and this is the boy that has been defying expectations since before he was born. Miracles follow this child, and we continue to be amazed and thankful beyond all words.