Jeux Sans Frontieres

My phone was still bleary-eyed and stumbling when it was asked to take this photo. My kitchen isn’t actually this blurry. But I’m afraid I really am that hunched over. Heavy thoughts can do that to a person. I once saw a woman with a hunchback at the post office when I was four years old. My mom said that drinking milk would help to prevent that. I drank a lot of milk, but if I don’t get all my thoughts out, I will become a hunchback. Sorry.

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A Normal Day, from the level of a two-year-old

Four weeks ago, I spent 18 hours away from the hospital so that I could give my kids a “normal day.” I even checked out of the hospital one day sooner than required because it was that important to me. When the OB told me they were keeping me another day–thinking she was doing me a favor–I burst into tears and said, “But I haven’t been home with my kids for two weeks, and this is the last week of school!”

Bedtime was normal. They were crazy, and I tried to not lose my temper. Breakfast was normal. I gave them cereal they liked, and after we poured the milk, they stopped liking it. Bus time was normal. My 8-year-old barely made it in time, but her shoes matched and her backpack weighed 47 pounds, as usual. Then a friend picked up my toddler for the day. And another friend picked up my son for the morning.

Just like that, my normal day was over.

A normal day.

Just a normal day, a normal day.

 It is a jewel.

In time of war, in peril of death, people have dug their hands and faces into the earth and remembered this.

In time of sickness and pain, people have buried their faces in pillows and wept for this.

In time of loneliness and separation, people have stretched themselves taut and waited for this.

In times of hunger, homelessness, and want, people have raised their bony hands to the skies and stayed alive for this.

 Normal day, let me be aware of the Treasure you are.

Let me not pass you by in quest of some rare and perfect tomorrow.

Let me hold you while I may, for it will not always be so.

One day, I may dig my nails in the earth, or bury my face in the pillow,

Or stretch myself taut, or raise my hands to the sky,

And want more than all the world

Your return.

(Corrected version and attribution to Mary Jean Irion, 1970)

My normal day has taken on a new bent these past few weeks. I live in three hour increments. First, I change my baby’s diaper and take his temperature. Then I breastfeed him. After those acrobatics, I try to feed him a bottle with fortified breast milk to help him get enough calories. When he gets too sleepy to eat, his nurse gives him the rest of his bottle through a feeding tube. That process takes 1 to 1 1/2 hours.

I then pump to empty out all my milk, which I pour into a storage bag for use with the fortifier. I hand wash and sterilize the pump parts. By the time I have finished, I have 1 to 1 1/2 hours to eat, shower, take a walk, read, or take a nap before the process starts over again. I skip most of the process at night and let the nurse do it so that I can get some sleep in 1-2 hour bursts.

I do this for 2-3 days, and then I go home for 1-2 days while my husband takes his turn. He hasn’t had much success with breastfeeding.

It all sounds pretty routine, and except for the sleep interruption, it is pretty manageable.

Most of what I do is so scripted, I could set the clock by my daily activities. So how do I cope with the tedium?

One way I keep things interesting is to play little games. I remember a patient’s mom when I was a PICU nurse who had a game she played. If the paper towel dispenser spit out a double layer of paper towels when she washed hands upon arrival, she saw it as a sign that it was going to be a good day. Her infant son had been lingering between life and death for months with a major heart defect. She felt she could no longer influence his course in the healing process. She needed some interaction with her world that said, “You are not invisible here.” The paper towel dispenser spoke to her when it seemed the heavens and earth had grown silent.

I have begun to understand that desperation to know my contribution matters.

My situation is quite rosy in comparison. But I still need my odd little world to speak to me, to tell me that I am uniquely qualified to be the vital cog in this baby’s NICU machine. Otherwise, I could pump milk, drop it off, and live my “normal day” while the nurses do the rest of the work.

One of my unique qualifications as the mom here is my sense of humor. It gives me a way of seeing the world that brings laughter and joy when I am threatened by monotony. Motherhood demands a huge helping of humor, so if I don’t replenish often, I get caught in the lie that motherhood is monotonous and therefore, of little value.

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Having a toddler help with chores reduces monotony, but it can also increase blood pressure.

Playing games can replenish my humor levels.

In order to help eradicate a case of thrush in my baby and me, I have to steam my pump parts every time I use them, or about every three hours. Two of the ten pieces are tiny white discs that would easily float down the drain if I let them. I have discovered that one of these discs loves to play hide and seek with me.

As if it isn’t already difficult enough to find a white dime-sized disc on a white washcloth, this little guy likes to stick to the steamy surface of another part, or it rolls away and hides. Or it just finds a little crevice in the steaming bag where it can hunker down until I call, “Olly olly oxen free!” I’ve probably reached a new low in even admitting to this game, but it does keep the task interesting.

As a side note, if you’ve ever seen “The Princess Bride,” you might notice that the machine used to suck away Wesley’s life is nothing more than a glorified breast pump. I think I just lost one year of my life.

Not every game I play with myself improves my situation, however. Any game that stays inside my head and begins with, “If only…” or “A better mom would…” is bound to make matters worse.

The problem with this kind of self-defeating game is that it stays hidden where the light of truth can’t expose it. As the title implies (it’s French for “games without frontiers, or limits”), there is no end to the damage a lie–or even a misperception–can do when it is allowed to grow unchecked and to then bounce around like a pinball in our minds.

I have found that I am helpless when it comes time to discuss my baby’s plan of care with the team. I keep believing this lie that a better mom would have gotten her baby home by now. When they ask if I have any questions, knowing that I can’t say, “Yeah, I do. When the freak does my baby get to come home?” I just shake my head “no” and smile. I’m afraid sometimes that if I start talking and my thoughts come out, they might not want to send him home with me.

I keep at this game by telling myself, “If only I had pumped every three hours as I should have, I never would have gotten thrush, mastitis, a waning milk supply, and a baby who today shows no interest in breastfeeding.”

Fortunately for me and my baby, I almost always have nurses who get me to open up about these thoughts so that they can confront them with some truth. It doesn’t mean the thoughts are extinguished forever–like an infection, I have to keep treating it while removing what feeds it so that these destructive thoughts don’t take hold again.

The title of this post comes from lyrics to a Peter Gabriel song called “Games Without Frontiers”. Interestingly, the French “jeux sans frontieres” are some of the most mis-heard lyrics in all of modern rock (according to me). I had initially heard, “She’s so popular,” and when reading about this song, I learned that a lot of other people thought the same thing. Studying the song proves that misunderstandings, lies, gossip, name-calling, and all the other silly games we play are just as destructive as war.

If we are to overcome our penchant for self-destruction, we first need to confront the lies we tell ourselves. If we feel trapped personally or by the history that brought us to where we are, I have found that it is best to learn the truth, for “the truth shall make you free” (John 8:32). The pain of confronting truth is nothing like the destructive power of hiding from it.

Allowing lies to take hold in our minds, in our dialogues, in our perception of the world, will rob us of the treasure we have ever before us: a normal day. Right now my normal day can feel too heavy, but if I am to merge the normal day at home with the normal day at the hospital, I may need to bury my face in my pillow and weep or stretch myself taut or raise my hands to the sky. When I live by truth, when I treasure the seeming monotony of my day, then I know that a normal day with my family will return.

3 thoughts on “Jeux Sans Frontieres

  1. As always your thoughts make me laugh, cry and ponder. I totally get the “paper towel” game. The song lyrics title is clever once again. Thank you for finding the Normal Day poem. Hope to give you some “normal” days soon!

    Liked by 1 person

    • I read about your normal vs. ideal day on instagram. I would love a normal day with you. Our most recent day together was a bit too momentous.

      I think it’s funny that we both have “word games” we play: you have your anagrams and I have my song lyrics. Our minds really do need something to do. Then you capture the world in your photos and paintings, while I see connections between daily life and “deep” thoughts for little blig posts. We both have our mediums for letting others in on what we see and hear and feel.

      We should start a restaurant. You provide the food, and I’ll provide perspective. Instead of fortune cookies, patrons get an anagram of their name. When I get tired of playing piano, I’ll find songs on YouTube by using loose associations with the patrons’ name. We’ll call it Food by Any Other Name. (That’s a terrible name…)

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  2. One day this will all be but a memory and you’ll look back with wonder! Wonder that you got through such difficult times and could move forward BUT in the meantime, keep doing what you’re doing, keep writing and keep remembering all the Amazing medical blessings associated with living in this century! I hope you get home 🏡 soon!!

    Like

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