The gods must be angry — or not

by Rebecca on January 14, 2015

“Do you think Rex is extra… strong? Or extra… smart? Or something?” I tentatively asked my husband a few weeks ago. We’re pretty gaga over our kids, and tend to think they’re geniuses at everything they do. But I was really wondering if the strength and intelligence I see in our 6-month-old was the same as our previous children, or if I was seeing something more.

“Actually, I think so,” he ventured. “I don’t remember our girls doing these things at this age. But who knows?”

We put it to rest. A few days later, I was in the doctor’s office at our weekly weigh-in for our tiny boy. He didn’t gain an ounce. Again.

The doctor popped in. “Does he seem… a little… strong to you?” she asked. “Like, maybe, stronger than your other kids were at this age?” She tried to speak politely because the other kids were in the room.

“YES!” I shouted, relieved to hear her say what I had been thinking. “We were just talking about that.”

“If he weren’t so tiny, I would think he was a 9-month-old and not a 6-month-old,” she said, remarking on his cognitive abilities and physical strength.

I was relieved to hear this. Little Rex fights for every percentile on the growth chart I have come to hate. The highest he has been is the 8th percentile, but he’s been a lot lower — and has even had periods when he wasn’t even a dot on the chart. This is out of the ordinary for our family, our other two children having rested securely above the 70th percentile.

We’ve seen 9 doctors or specialists in four months, most more than once. He’s been hospitalized twice, with three teams of doctors discussing his inability to gain weight. We’re in a doctor’s office every week, and have even had weeks when we’re in a doctor’s office every day.

Nobody knows what’s wrong with him. We tweak things every other week or so, thinking we have found the magic formula for growth. It works! And then, it doesn’t.

There is a story in Greek mythology of Sisyphus, a king who was punished by being forced to roll a boulder up a hill, only to reach the top, watch the boulder roll back down, and then begin the long journey again — FOREVER.

I think I’m Sisyphus.

Every time we reach the top of the hill, the boulder rolls back down, and we have to start again.

I’ve learned the punishment of Sisyphus wasn’t so much in the physical struggle to get that boulder up the hill. No, the punishment was in the hope and progress he perpetually saw.

There are weeks when Rex gains weight like a champ, and I think we’re almost to the top of that hill. If we can just push a little harder, we’ll get to cross over! I feel such hope. What’s on the other side? I can’t wait to find out! My happiness at the bright future almost literally has me floating about my daily activities. Looking back to see how far I’ve pushed that boulder up the hill, I feel so happy at how far I’ve come. It’s enough to make me whistle while I work, if you will.

But unfortunately, there has never been a time when we’ve been allowed to cross over the hill. The boulder always falls back down with another weight loss or a hospitalization.

If you want to really destroy someone, give them hope and then snatch it away. Then do it again, and again, and again. And make it clear that there is no way out.

Sisyphus must have really pissed off Zeus.

Sometimes I think I must have really made my God angry. Why else does this torture never end? Surely I’ve had enough, haven’t I? Surely my boy is ready to be a normal, growing baby, isn’t he? Why won’t God deliver us from this Sisyphean hell?

I wrote a letter to the first pediatrician Rex had, the one who didn’t catch things he should have, the one who (right or wrong) I hold responsible for prolonging this awful experience. I thought it would be a good cathartic exercise; you know: get my feelings out on paper, and then never send the letter. I was sure it would be my first step to forgiveness. I texted my husband when I finished the letter: “I wrote a letter to Dr. (I won’t share his name, even though I want to). It ended with me cursing and swearing in capital letters. I think I need a therapist.”

I don’t have a therapist yet, but I did realize that being angry doesn’t solve a damn thing. Too bad. It feels good to be angry.

So instead, I look for miracles.

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“Rex is as strong as a 9-month-old,” our new and wonderful pediatrician said. “His head and his length size haven’t suffered through all this weight loss.”

How can that be? How can he not only be strong and active, but stronger and more active than he should be at this age?

He’s smart. He knows his name, he copies sounds we make, and he watches our faces to study our reactions when he does something funny. How can that be, when his body has struggled to grow? How could he possibly be smart?

He’s sweet. He rarely cries, even when he is at his worst. How can that be? How can he be happy when he feels miserable?

He brings peace to our home. How can there possibly be peace in this home?

He stops his sisters’ tantrums. That may be the biggest miracle of all.

Just kidding.

Sort of.

He stops my anger. How in the world can that be?

I know Sisyphus pissed off the gods.

But no matter what, I know I haven’t made my God angry. Not yet. All I have to do is look around, and see that He blesses and blesses and blesses.

rain blessings uchtdorf

It’s time to get soaked. I don’t like carrying umbrellas anyway.

 

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It’s somebody’s fault

by Rebecca on October 29, 2014

Two nights ago, I dreamed I was looking at the pile of unmatched socks I keep on my laundry room counter. I thought to myself how unattractive that pile looked, and wished I only had a drawer underneath the counter where I could stash them. Suddenly a drawer appeared, and I was giddy as I swept each lonely sock into that magical drawer where I shut them tight. Problem solved.

Two months ago, my husband dressed our then 2-month-old for church in cute khaki shorts. “He’s awfully skinny,” I thought as I looked at his legs. An hour or so later, I sat in church, looking at his skinny legs again. They were terrifyingly tiny. Unable to process what I was seeing, I covered them with a blanket. The next day was his 2-month appointment, and I was going to make sure to bring up his tiny size to the doctor.

I didn’t get the chance to voice my concerns. The doctor, who I normally love, entered the room, slapped my son’s growth chart on the table and told me in his greatest condescending tone that little Rex had lost weight. He began to pull at Rex’s skin, roughly telling me how severe Rex’s condition was. “I see a baby this bad probably once every five years,” he said to drive his horrible point home.

“What do you mean?” I asked. “He’s so happy. He never cries. He smiles after every feeding.”

“Well,” the doctor roughly gestured toward my son and began pulling at his skin again. I felt like I had an instant fever. Tears filled my eyes, and I began to get dizzy while the doctor talked about hospitalizing little Rex.

“Please no,” I begged. “Let me try to improve this. I didn’t realize it was so bad.” He sternly told me I needed to feed him formula, and he wanted to see meticulous records of how much Rex was eating and when.

Ryan and I tried desperately to get little Rex to take a bottle, but he wouldn’t do it. The next day, I pulled out my old breast pump to see what I could get. I got nothing, not even a tiny drop.

“Oh my gosh, I’ve been starving our baby,” I sobbed to Ryan on the phone.

“Let me get a new pump,” he suggested. “That one’s old.” I barely heard him, as I stared at my baby that was growing more and more lethargic by the hour.

Ryan was home an hour later with a hospital-grade pump. It worked, and I was able to quickly pump a few ounces. Relieved I had milk, I continued to try to follow the doctor’s orders and give bottle after bottle of formula to little Rex. He would have none of it, so I nursed him – but he would immediately fall asleep. I laid him down for an afternoon nap, something he normally would protest. That day, he just turned his head to the side and immediately fell asleep.

“I feel like I’m watching our baby die,” I sobbed again to Ryan on the phone. He called the doctor, and we were in his office the next day.

The next day, I sobbed while the doctor harshly grilled me on how I had fed Rex. “Stop it,” I finally said to the doctor’s accusing words. “Stop it. I am so fragile right now. I’m not trying to hurt my baby. I’m here to figure out what to do.”

The doctor softened, assured me he knew I was a good mom, and told me I needed to take Rex to the hospital.

We spent the next three days in the greatest children’s hospital. The staff was wonderful, the amenities for parents were incredibly thoughtful. But still it was hell, as I saw my tiny baby get poked and prodded, as we all lost sleep, as I answered question after question about how I feed my baby, as no answers presented themselves.

Rex gained a few grams over those days in the hospital, and every test showed he had nothing medically wrong with him, so they let us go home.

The next days and weeks were filled with regular weigh-ins at the doctor. When he didn’t gain enough weight, or when he lost weight again (that was a horrible day), I was instructed to tweak this, to try that, to wake him more often, to supplement, to add formula to pumped breast milk. Oh, the scenarios and trials went on and on.

My life became a prayer. I prayed all day for Rex to gain weight, for me to have understanding, for my milk to not diminish, for Rex to be healed. Sometimes, when he gained weight, I was sure we were on smooth roads again. Everything was going to be butterflies and roses. But then, he wouldn’t gain enough weight at the next weigh-in, or he wouldn’t have enough dirty diapers to help me feel he was getting adequate nutrition.

One day while I was praying, I knew I needed to see a lactation specialist. She took one look at him, and pronounced him tongue- and lip-tied. “Oh, I’m so happy for you,” she said. “This is an easy fix.”

With that, we were off to a dentist who performed a laser surgery where he removed tissue from under Rex’s tongue and under his lip so that he could open his mouth properly. Instantly, he was a better nurser. I had so much hope.

But his weight, while it increased, wasn’t sufficient at the next two weigh-ins.

More tears. More prayers. More feelings of hopelessness. I tweaked the schedule again. I tried a different combination of formula and breast milk.

I went back to the lactation specialist. “Yes, he’s an older baby. This is normally caught in babies when they’re much younger. He’s had to over compensate for so long that now his tongue is weak.”

She recommended an occupational therapist. “I know exactly what’s wrong,” the occupational therapist said, looking through Rex’s charts and noticing his severe eczema. “His tongue is fine. That’s fixed. He’s a great nurser. No, what we’re now seeing is that he has an allergy. You need to eliminate all dairy from your diet. You have to buy a special formula to supplement.”

The formula is $40 a can.

She handed me a list of every ingredient I am now not allowed to eat. The list is long, so very long.

I’m so very angry. Why didn’t my doctor catch this at 2 weeks? Or at 6 weeks? I look at the weight charts, and it’s plain as day that there was a problem. Why didn’t he listen when I described how much Rex spits up, why didn’t he notice the eczema, why did he just keep telling me to throw more and more food at Rex without ever analyzing what the problem is?

If it sounds like I’m complaining and whining, it’s only because I’m complaining and whining. I have suffered, my baby has suffered, my husband has suffered, and my daughters have suffered these past two months.

I look around to find someone to place blame on, and my doctor is as good a candidate as any. It’s my doctor’s fault I went through weeks where it took an hour and a half to feed Rex. We’re down to about 40 minutes at a good feeding now. Most of the time, it’s more like an hour. That’s my doctor’s fault.

It’s my doctor’s fault that Emma is growing clingy and whiney. It’s his fault she begs for TV, and is losing interest in play. It’s his fault I don’t get to do the fun reading and counting activities I want to do with her at this cute 3-year-old stage. It’s his fault she isn’t potty trained, and is now so afraid to pee, she holds it all day long. If she gets a UTI, it will be his fault too.

It’s my doctor’s fault I rarely get to interact with Rex since most of his waketime is spent feeding him. It’s his fault that Rex is missing milestones. I don’t know when he’ll learn to roll over because I rarely put him down. He is a horrible napper because of all the different things we have had to do to help him gain weight. Because he doesn’t sleep during the day, he doesn’t stay awake well when I nurse him. It’s a vicious cycle, and I want out. It’s my doctor’s fault that Rex screamed so much this last weekend every time we laid him down that his voice is now hoarse. My baby’s voice is hoarse, and that’s the doctor’s fault.

We also moved to a new house in the middle of all of this mess. It’s the doctor’s fault that because it takes so long to feed Rex, I wasn’t able to take Lydia to her first day of school at her new school. I missed out. It’s the doctor’s fault that I don’t know what’s going on in Lydia’s classes. I don’t know her friends. The school called to inform me she has a negative balance on her lunch account. It’s the doctor’s fault I can’t manage simple things like lunch money.

It’s the doctor’s fault that on Lydia’s first day riding the bus home, I wasn’t at the bus stop in time because Rex had a bad feeding. The fear and the tears that Lydia had while she stood paralyzed in her new neighborhood, not knowing where to go – they belong to the doctor. It’s the doctor’s fault that I never had time to drive her on her bus route, so she got off at the wrong stop two times and wandered helpless around the neighborhood, while I searched frantically for her, fearing the worst. It’s the doctor’s fault that because I’ve been able to pay absolutely no attention to regular life things, I didn’t even know her school’s phone number to call to make sure she actually got on the bus.

It’s the doctor’s fault that I broke down to his receptionist when trying to get a prescription filled. She told me the process, which I now realize was simple. But I couldn’t comprehend what she was saying. “I’m so sorry,” I said. “My life is so hard right now. Can you please take care of this?” She did. An angel, she is. But it’s the doctor’s fault I’m now that girl who breaks down to strangers.

It’s not the doctor’s fault, really though, is it? Well, not all of it. I realized this, so I turned my blaming heavenward. I had an angry prayer with God. “Fix this,” I demanded as my baby made his voice hoarser in his crib the other day. “Fix it.”

The baby didn’t magically stop crying. I went and held him and cried while his little body gave up and succumbed to sleep.

My Relief Society president stopped by an hour afterwards. She told me about an issue she had with her son’s health once. It didn’t relate, but one thing she said wouldn’t leave my mind. I mulled it over, but didn’t know what to do with it.

Later that night, after a marathon laundry folding session, my husband and I were cleaning up the laundry room.

“Oh!” I said, looking at our countertop. “There’s a drawer there! I can put the mate-less socks in there.” I told him about my dream, and we laughed at how silly it was.

“It sure is nice to solve a problem though, isn’t it?” we said.

The next day, as I read the scriptures, my Relief Society president’s words came back to me, and I knew how to apply what she said to help Rex sleep better during the day. It was like a magical drawer appeared.

One problem possibly solved. God is still there, and He’s still helping me.

Even when I shout at Him.

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Moms have to grow up too

September 5, 2014

  I thought sending my oldest to kindergarten was hard, but it was nothing compared to sending her to 1st grade. Oh, the worries. How can she be away from me for the whole day? How will she figure out how to eat lunch in the cafeteria? How will she remember to take a snack outside […]

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3-year-old Emma

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         Emma turned 3 a few weeks ago, and we kept with our tradition of taking her picture with her favorite stuffed animal, Dino. The idea is for her to still be taking pictures with Dino when she’s a teenager, but with all the loving Dino gets, I’m not sure the little animal will make it […]

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Rex’s blessing day

August 29, 2014

My parents’ 1-year mission as employment specialists to Detroit for the Church of Jesus Christ of Latter Day Saints ended just a little bit after baby Rex was born. It was perfect timing because by the time they made their way to Utah on their way home to California, Baby Rex was 6 weeks old, and I was […]

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Emma’s third birthday party

August 21, 2014

Having a baby just one month before your daughter’s third birthday means you have no energy to do anything for said daughter’s third birthday. Thank goodness for a summer birthday that could be held at a park, and thank goodness for friends and family members who are willing to step in when Mama is a […]

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Baby Rex’s birth story: Part 1

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This is a long birth story. I thought about cutting out major parts (and believe it or not, I actually did cut out quite a bit), but ultimately decided to keep it all for my posterity’s sake. I won’t be mad atcha if you don’t read the whole thing. Part 2 here Part 3 here […]

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Baby Rex’s birth story: Part 2

August 9, 2014

Part 1 here I paced the delivery room. Each time I had a contraction, I signaled to my husband and he would come near to rub my shoulders and neck while reminding me how to relax. That’s what I loved about hypnobirthing: it taught me how to trust my body and work with it, and […]

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Baby Rex’s birth story: Part 3

August 9, 2014

Part 1 here Part 2 here The doctor, who finally came in, tried to get me to relax, to move my legs, to get me in the bed. I couldn’t do any of it. Ryan had to move my legs for me. I was as tense as a corpse – and wished I was one. […]

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Ode to the belly table

May 29, 2014

I’m so tired. I’ve had mono before, and I feel like I’m walking around with double the mono I had. My husband tells me I felt this way with my other pregnancies as well, but I think he’s full of it. Nobody could forget this amount of tired. The other night, my husband was gone […]

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