Life after Tony
Life after Tony is odd. We've been dropped back into the season that came before we ever knew I was pregnant. Same home, same freedom to technically do whatever we want whenever we want. Sometimes that feels lighter, sometimes it's very overwhelming. It's hard to switch your mindset when you planned on your world being mostly focused on keeping your son alive and happy for the foreseeable future.
We've caught up on sleep and tried to combine the 3 "homes" worth of things we had to have living in 3 different places the past 9 months. It's still a work in progress. Donated my milk, which was painful and beautiful to think about those little ones that need it desperately receiving it. Spent lots of time with family and friends.
We did get to see some hospital staff, which was nice. It's a very difficult thing to not even get a chance to say goodbye. A lot of them showed up to work that week and found out in very rough ways. God is so good at redeeming relationships when you have to let Him. Some people we've talked to and grieved with were people that we were very angry with at one point in time, but we somehow forgave them and have become close. It was refreshing to hear from the staff that were there in the very beginning that they are frustrated and working to change things that we knew were so wrong even back then but didn't have the voice to say it yet. Just last week they finally made the change to put warmers in the antepartum rooms that I delivered in. I guess originally the NICU was told that no one could possibly deliver in those rooms, that they would be taken to the delivery rooms that are equipped to handle a micropreemie immediately after birth. You can't do that when you don't recognize that someone is in labor for over 4 hours. Once again, Tony's name and story is still floating around that place, making it better for babies and families to come. We didn't even know how or have a chance to complain about that circumstance, so I'm glad that we have friends that recognized the need for change and advocated for us. There is still SO much that needs refined in major and minor ways, our prayer is that I can be placed where I need to be to help. Whether it's volunteering or working there, I want to use our experience to be there for those families and staff that are still in the trenches in the most productive way that I can.
We knew we didn't want a traditional funeral, but our original plan was to have some kind of service. That proved to be much more difficult than we thought when we looked at how many people might want to come. It became clear that logistically it wasn't going to work well and would be more stressful than anything. Instead we have visited with or plan on visiting with people in a more organic fashion in time. We love talking about Tony, it keeps his spirit around for us and everyone else. If we don't already have plans to meet in person with anyone reading these updates, feel free to reach out if you would like to.
I'm attaching a little booklet I made (if you click on the pages the images will enlarge so that you can read what's on the pages) and the links to an album of our favorite videos, an album of our favorite pictures, and the Ronald Mcdonald link just because I finally figured out how to make it clickable!
I also wanted to share something that has been helpful for me to think about. I read a book by Tim Keller called Every Good Endeavor a couple of years ago. The book's main focus is reframing how we look at our goals, mainly careers. He talks a lot about how in a fallen world it's always going to be impossible to achieve what we truly want to achieve. It's going to be extremely frustrating, filled with interruptions, never feeling completely finished even in the most perfect conditions. We have to accept that and allow the Lord to do as much as He can through us in this imperfect world while we're here anyway. In the beginning of the book Keller references a short story written by J.R.R Tolkien called, "Leaf by Niggle." When Tolkien was in the process of writing The Lord of the Rings he was struggling to perfect it or even finish it because he had so many details and grand ideas for it. His biggest fear was putting so much time and effort into it and never finishing it before he died. He was stuck, so he submitted Leaf by Niggle to the newspaper one morning, which ended up helping him to finish his larger project. In short, Niggle was a lonely little painter who had a vision for his greatest painting.
"There was one picture in particular which bothered him. It
had begun with a leaf caught in the wind, and it became a tree; and the tree
grew, sending out innumerable branches, and thrusting out the most fantastic roots.
Strange birds came and settled on the twigs and had to be attended to. Then all
round the Tree, and behind it, through the gaps in the leaves and boughs, a
country began to open out; and there were glimpses of a forest marching over
the land, and of mountains tipped with snow. Niggle lost interest in his other
pictures; or else he took them and tacked them on to the edges of his great
picture. Soon the canvas became so large that he had to get a ladder; and he
ran up and down it, putting in a touch here, and rubbing out a patch there.
When people came to call, he seemed polite enough, though he fiddled a little
with the pencils on his desk. He listened to what they said, but underneath he
was thinking all the time about his big canvas, in the tall shed that had been
built for it out in his garden (on a plot where once he had grown potatoes)."
Niggle never got to finish his painting, the "Driver" came to take him away before he could. He only ever got one tiny leaf and a splash of mountains behind it finished. But there is hope in his little story. When he reached what seemed to be his destination this is what he found:
"Niggle pushed open the gate, jumped on the bicycle, and went bowling downhill in the spring sunshine. Before long he found that the path on which he had started had disappeared, and the bicycle was rolling along over a marvelous turf. It was green and close; and yet he could see every blade distinctly. He seemed to remember having seen or dreamed of that sweep of grass somewhere or other. The curves of the land were familiar somehow. Yes: the ground was becoming level, as it should, and now, of course, it was beginning to rise again. A great green shadow came between him and the sun. Niggle looked up, and fell off his bicycle. Before him stood the Tree, his Tree, finished. If you could say that of a Tree that was alive, its leaves opening, its branches growing and bending in the wind that Niggle had so often felt or guessed, and had so often failed to catch. He gazed at the Tree, and slowly he lifted his arms and opened them wide. "It's a gift!" he said. He was referring to his art, and also to the result; but-he was using the word quite literally. He went on looking at the Tree. All the leaves he had ever laboured at were there, as he had imagined them rather than as he had made them; and there were others that had only budded in his mind, and many that might have budded, if only he had had time. Nothing was written on them, they were just exquisite leaves, yet they were dated as clear as a calendar."
Tony is our leaf. Seemingly unfinished, his potential in this world unbearably stunted. In the midst of all the worry of how his lungs could make him suffer, we saw him crawling, running, learning sign language, then English and Spanish. We were working on all of that already. Fredy saw him singing and playing instruments. Loving soccer. Splashing in the creek. Lighting up every room. In the far, but blurry, distance I saw him using his unfortunate beginnings to change lives on whatever path he took. Fredy wanted to see him become a pulmonologist. The truth is, God has an existence in store for him that is even greater than what we painted in our minds. We don't know how it all works yet, but I know that someday it will all make sense and we will see our Tree, in all the detail we never got to finish, even more perfect than we could have imagined.
I'll attach the link to Leaf by Niggle here in case anyone is interested in reading it in full, it can be applied to so many circumstances.
Thank you all again for going on this journey with us and for everything that we've received in the mail and the donations made to the Ronald McDonald House. It truly means so much 🤍
Comments
Post a Comment