“We just want to rule a few things out…”
This is what Liam’s GI said as he ushered us out after another follow-up and no weight gained, explaining we would be getting a call about some more testing they wanted to do. No big deal, he said. It won’t hurt a bit, he said.
Liam’s prematurity has come back to say hello in a big way this year. I feel that I have spent more time filling out paperwork, explaining his symptoms and sitting in medical waiting rooms this year than every other year of his life combined.
“We are so lucky,” I often tell people, “He is SO healthy.” And it is true. He is so very healthy for a little boy who has been through so much… but, in spite of how healthy he is, we find ourselves awaiting surgery for teeth that did not form properly, attending monthly follow-ups over poor weight gain and digestive issues, asking for another referral to another therapist that can help him with his sensitivities that have once again spiraled out of control. And having to hold him down over and over and over again while he screams in terror as they stick needles in his arm and test him yet again… for yet another possible cause of the skin-stretched-over-bone look about him.
His kidneys are perfect. His liver and thyroid are perfect. He does not have food allergies. He does not have thyroid problems. He does not have metabolic disorders. Each check off the list represented by vials of blood strewn across a table and crocodile tears on the face of my sweet boy. “Do they have to take blood?” he asks me, shrinking, any time we enter a medical building.
But this time, there would be no blood. An easy test, the doctor said, they are just collecting sweat. No big deal.
We got there on time. A miracle. The children’s hospital is so colorful. There are playrooms on every floor, a huge train set at the bottom of the stairs. It was all so exciting that Liam ran ahead of me, thrilled, completely oblivious to the babies being rolled by in wagons, hooked to IVs, the little boys with their mouths covered by masks, dark circles under their eyes and not a hair on their heads. He noticed the wheelchairs though. “MAMA!” he yelled, “That guy is in a wheelchair! I wish I had one too. And look at his cool shoes. He is SO COOL. I want to be just like him! Can I have a wheelchair?” he yelled, standing two feet from the child in question. I smiled at him, said I thought the boy was pretty cool too.
All Liam could see was the bright colors and nifty gadgets. He wanted to be a part of this world. And I kept thinking to myself as we made our way to the 10th floor, “God, thank you that I am not a part of this world. Please let me never have to be a part of this world.”
We made it to the clinic and checked in, settled down in the waiting room with our toys and snacks. (I am getting quite talented at this particular waiting game.) Our name was finally called and I congratulated myself on making it through the hard part in one piece. We walked past a sign declaring what the clinic treated: asthma, cystic fibrosis and lung disorders.
I was not alarmed. Liam was diagnosed with asthma last week. I was not sure what that had to do with his failure to grow but I have grown accustomed to the obscure connections different systems have with each other and it made sense that his GI would want to do some additional testing following his new diagnosis.
The nurse was sweet. She put a movie on for Liam, explained the procedure thoroughly. He was anxious and asked to sit in my lap. He doesn’t trust doctors anymore. I held him and she connected the machine. He laughed when she turned it on, later said he felt so silly for being scared. Five minutes later, the first part of the test was done. We would just have to wait 30 minutes now, while some gauze collected sweat from his arms. We could walk around the hospital while we waited and Liam was thrilled. This was going to be an easy one.
As we walked out, I asked as an afterthought, “What all does this test for anyway?”
Cystic Fibrosis, she said.
My heart dropped.
For all the tests Liam had had done, all the times I have explained that the doctors are trying to help him and held him when he cried and promised ice cream and stickers… this is the very first time they were testing him for something that could not be cured with the right diet or a new medication. This is the first time he was being tested for something he would have to live with for the rest of his life, a life that could very well be much shorter than I ever imagined. This was the first time we were not simply brushing elbows with the world of special needs… but auditioning to be a part of it.
“God, please never let me be a part of this world.” I had just prayed an hour earlier- an abstract sort of prayer thrown at the ceiling.
All I knew of Cystic Fibrosis was gleaned from a documentary I watched when Liam was a tiny bean, sleeping all day in my arms and leaving hours of unoccupied time I filled with morbid documentaries and Law and Order: SVU. The subject of the documentary died when he was 11 years old.
Most of me knew that this was absurd. Liam barely fits the criteria to even be tested. He isn’t growing well and he has had a couple of asthma attacks. Nothing else fits.
But there is always that sneaky voice in the back of your head:
You have been complaining about how often he is getting sick lately…
All those unexplained fevers….
He takes forever to kick colds, coughs for weeks…
They have not figured out why he can’t gain weight….
I hate that stupid voice.
I talked to a friend, my husband, my mama. I wanted them to tell me this was ridiculous and they did. They told me to put it out of my mind and I did my best to listen. Liam and Ryan went out for a papa/son date that night and Dexter and I spent the evening cuddling and reading and splashing in the tub. It is ridiculous… I told myself any time the doubts crept in.
The next morning, the doctor called. The test came back normal.
It wasn’t even a full day.
And it was terrifying.
I was relieved and happy. But almost instantly… I wondered, as I think many of us do: what if the answer had been different? What would I have done? Could I handle that?
I think, of course, the answer is yes. Yes, I could handle it. What exactly is the alternative? …to fall apart? …to walk away and never look back?
No. When your child’s life takes a detour you never expected, as a parent, there is really only one choice. You walk through it with them. In the ways that you can, you walk through it for them.
You hold their tiny hands. You smile when you want to cry.
You read books and join support groups and ask lots and lots of questions.
You set up computers next to tiny ICU beds, learn the quickest route to the hospital. You wear masks and scrub underneath your fingernails. You fumble while changing tiny diapers through the holes of an isolette. You tuck appointment cards into your wallet. You spend hours on the phone with insurance companies.
And so very much more that I do not know and cannot understand because I have only brushed elbows with this world and thankfully failed this audition.
So, yes, I could have handled it…but would I have been my best self? And would a terminal diagnosis change the way I parent my child? Or perhaps a more realistic question is exactly HOW would a terminal diagnosis change the way I parent my child?And if I would most definitely change… why? What am I doing now that I would do differently if I knew that my child’s time on this earth was limited- that his life was no longer guaranteed?
Because really…is that not the truth anyway?
I was not even promised a day with this child; not even one single day. I have had a brand-new heart beating inside of me suddenly stop. I was only given a few weeks with that tiny one; a handful of moments, painful and joy-filled. And I have looked at the face of this child, this very child that I held in my lap as they tested for this disease, while he was being kept alive by machines and medication…not knowing if I would ever see the face again. The young are the most vulnerable of any species, and as mothers, we are faced with this vulnerability, always. These are my experiences with it.
But then I did see this face again… and again and again and again. And somewhere along the way, you forget. You forget that you are not promised a single day with your child because there seem to be so very many days… and some of them are so ugly.
You forget to be your best self. Or you just don’t want to anymore. You are tired of being grateful. Tired of looking on the bright side. You just want things to be easy. You just want things to be normal… and you are sick to death of feeling bullied into be grateful for these ugly days simply because they could have been so much uglier.
“We are so lucky…” I say, “he is SO healthy.” But sometimes what I want to say is that IT IS NOT FAIR. It is not fair that I will never, ever know who my child could have been if he had not been born early… and living with him is hard. No, it is not as hard as it could have been, but it is as hard as anything I have EVER done. And there are days that I do not even like him! And this life, created by an unexpected pregnancy and a premature baby, brings out a side of myself and of Ryan that I do not like either! And there are days when I just don’t know how to do it anymore and I want to run away. And all of those ugly feelings, of course, add a nice, healthy dose of pure guilt on top of everything else.
So, you know what? I think the answer is no.
I do not think I would be my best self. I am not sure that anyone is… at first.
But I think I would have learned. Because I am- I am learning. I was not even promised a day with this boy- not even a single day… and I have been given so very many. Ugly days and beautiful days. Hard days and days full of joy. Sick days on the couch with buckets and towels. Lazy days on the couch with popcorn and movies. Days at the beach and exploring new cities. Sunny Days. Rainy days. Four perfect birth days. Days that we screamed at each other, days that we laughed so hard we cried, days that we just cried.
Days that we waited for test results to come back.
Days when they came back negative.
I am not promised even one more day with this boy. So, today? This last day? We are going swimming and then to get pizza. It is going to be fun and it is going to be hard. And I am going to be grateful for this beautiful, ugly day…
Because… I am learning.