I am not good with surprises. I like routines. I understand and thrive in habits. Even my children understand this desire for things to be well-planned as one child gave me an extra week past his due date to prepare and the other two children managed to come while I was still at the hospital after a sonogram. Not to mention they decided to come the day after their brother’s birthday and the day before our wedding anniversary. They just… get me.
I think, like perhaps many of us do, that I can plan for everything that is going to happen. I have, of course, thought through scenario A – G, and I have a backup plan for all of them. The problem arises, however, when situation H occurs, and I did not even know that was a possibility. That’s when all the “plans” I had go right out the window. Situation H occurred for me after we had just come home from the hospital with the twins. As I was getting dressed from probably the first shower I was able to take post c-section, my husband came in and said “You are not going to like this…” Oh man how a statement like that can crush a person. Especially a person who had just taken a major sigh of relief moments earlier that my boys had made it to 36.5 weeks with no NICU time and we were all home safe and sound.
It turns out, the pediatrician’s office had just called saying that both boys had tested positive for something on their newborn screen. My first question was “Their what?” Quickly I was reminded of that little heel prick given to them on day #1. The one that transfers five drops of blood onto a grid. The one where the nurse said that every disorder being tested for was EXTREMELY rare. “Oh, that one,” I remarked. That one I had barely noticed being done because, with our oldest, we had never heard about it again. Of ALL the things I could think of to worry about with twins, that was not one of them. I was completely unprepared.
The next few days were an influx of confusing information and tests and genuine concern about the little guys. We rushed to our pediatrician’s office that afternoon, a new pediatrician we had just met a couple days ago for their 2-3 days weight check. And, like most pediatricians, he was not all that well informed about rare disorders. He was also not certain a false positive was likely because both identical boys had tested positive for the disorder. He told us it was VL-CAD – a metabolic disorder where the boys would only be able to process the food they had just eaten. They lacked the enzyme to dip into their fat stores after that immediate food was used up. So, if they got hungry, and they had this disease, they could crash like a diabetic in insulin shock or die. We were advised to feed them every 3 hours without fail until it could be determined for sure if they really had this disease.
The next week, we took them for blood and urine tests at Children’s Hospital. It is not pleasant to watch a newborn have to get blood taken out of their arm, much less pricked from their heel. Then, we made an appointment with the doctors at the Metabolic clinic at Children’s to see what happened next. As all of this was going on, I was still under the impression that it was likely they had some form of this disorder because no one was telling us anything different. The first day I knew I accidentally slept 1 hour over the 3 hour mark to feed them, and I immediately freaked out that I had just done something incredibly awful to my little boys.
When we went to Children’s, we first met with a geneticist who explained all the ins and outs of this mysterious disease. She told us that if they got the stomach flu or stopped eating for any reason while we were still trying to determine if they had it, they would have to be rushed to the ER and started on an IV. She handed us letters that were like a fast pass from Six Flags for first in line at the ER. After she was done giving me all the details of this scary but manageable (if we kept them fed) disease, the doctor came in to talk to us.
One thing I learned about Children’s Hospital that I will never forget is that the doctors and geneticists and nurses there give you incredible time and attention. They explain things in detail, they wait patiently for you to ask your questions, and they are willing to answer more questions on the phone if necessary. Another thing I learned is that I really don’t want to have to spend any significant time there with them if I can help it.
So, the doctor spent a lot of time with us talking over the disorder again like the geneticist just had, but he said something comforting that she had not. He said “I don’t think your boys have this disease.” He said that if they did, it was probably a really minor form of it. Their tests looked good, they looked good. However, he reminded us that we had to live as if they did have it until we knew for sure. This was all within the first couple weeks of their lives.
I was sitting in their two month appointment when I received the call. After two months of breastfeeding them every 3 hours like clockwork. After two months of paperwork to finally be denied genetic testing. After learning that only a biopsy would be covered and watching a doctor permanently scar their arms at six weeks old. After waiting more weeks after the biopsy for their skin to be grown in a lab and evaluated. After praying and praying they stayed well just for a little longer until we knew for sure. After a rollercoaster ride of being SO certain they didn’t have it to questioning that certainty and back again… I received the call that said their tests were normal. “You can tear up those fast-passes to the ER and never call us again.” Don’t worry, I thought, I won’t.
[[I will note that a grandfather I knew told me a few months later that his grandson was diagnosed with this disease from the heel prick, and they never got the call I did. Newborn screens are incredibly necessary. I still believe that even after learning how common false positives can be]]
You can not plan for everything. And I realize that more and more each year. The next time I was sitting in Children’s, it was in a different wing several years later. We had just learned of my oldest son’s hearing loss, and this time there was no call that it was not a valid diagnosis. This time, however, many things were different. The first being that this was not a life-threatening disease. The second being that I had learned to trust in the Lord a little more and lean into the unexpected.
The following is my favorite prayer from Thomas Merton that I often pray in these unexpected times:
“My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. Nor do I really know myself, and the fact that I think that I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road though I may know nothing about it. Therefore will I trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.”https://www.goodreads.com/author/quotes/1711.Thomas_Merton
― Thomas Merton, Thoughts in Solitude