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So, pregnant with Cooper so many months ago, I started this blog. I cleared my head, and I'm glad I did. Looking back on it now, it's an interesting stream of conscious. And it's an excellent example of how you can let yourself feel stressed out in the daily grind. And, if you write it down, maybe, just maybe you will tempt fate and life will get immeasurably more full and crazy and hectic and interesting, all the while becoming more and more blessed. And that is just what has happened friends. Life got interesting. So, the intermission is over (for now), and below is some writing that streamed out of my head  a couple of months ago. It's a little outdated tonight, but it's still undeniably juxtaposed to my writings from two years ago....

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I looked at my belly. Full. Loose. Full of love, full of motherhood, full of chocolate snuck late at night while little eyes were sleeping. But loose. Loose with age, loose with neglect, loose with nerves. My son, 19 months old lay sprawled across my belly, himself loose with exhaustion, a pile of wet noodles, as I like to think of gangly children who can’t fight sleep any longer. Oh Cooper. My sweet boy. He is exhausted, but calm. A timer sits on the table behind us, counting down the minutes that I may continue to hold his big little body. Big boy. Little man.

Our life revolves around that timer. My son Cooper, his life revolves around a feeding timer. Where my daughter Dakota taught me to trust instinct, feed when she indicated hunger, and sleep peacefully when she powered down at the end of the day, Cooper has taught me to abolish instinct and live on edge. Forgo rest and worry endlessly.

My son Cooper has a metabolic disorder. Asymptomatic. Evil. Just when you think you’ve discovered his pattern, BAM, dangerous low blood sugar, detectable only by pricking his tiny fat fingers.  His fingers are raw with the testing. I wept quietly, almost imperceptibly this evening as I watched him struggle to grasp a small puzzle piece. He should be able to do this. I didn’t realize he couldn’t. Same thing I told his new pediatrician when we moved to this town, “We spend a lot of time just keeping Cooper alive, so it doesn’t worry me that he’s not pointing at objects yet. It’s not that he’s not cognitively able, it’s that we don’t focus on those things with him. We focus on keeping him alive.” It sounds dramatic, but it’s the truth.

Dakota did not sleep through the night until she was 14 months old. So when Cooper came along and peacefully, easily slept through the night at three months old, I trusted my instinct which told me that we had earned this. It was time for the easy kid. HA. Ha. ha. Ugh.

At four and a half months old Cooper seemed sick. He was vomiting a lot and seemed to scream in pain periodically. I dropped Dakota off at daycare one morning and headed to the infant room, nursed Cooper like the diligent mother that I was, and went to change his diaper before heading to the office. During the diaper change he exploded. He vomited out more food than I believed he had in his small stomach. It affected me. I didn’t remember Dakota ever being sick like that. Not from ear infections, or strep throat, or stomach bugs. I panicked a little. I left Dakota at school and headed home with Cooper, calling the office to tell them I would not be in that day. I went home and snuggled my little man, savoring his soft little body, sleepy in my arms. I called the doctor and he agreed to see us around midday. I told him I suspected an ear infection or strep. Just as Brandon and I had agreed last night. Last night before I saw him vomit like that. Last night, when I planned to go to work this morning. Last night when everything was still normal.

Mid-day came and I whisked him off to the pediatrician who I had grown so fond of. The one who insisted that I must meet him when pregnant-me had indicated over the phone that I “wasn’t one of those parents”. I didn’t need to interview pediatricians. What on earth would I ask them that they didn’t know better than me? I took a suggestion from my OB and picked the guy. I’m just lucky she thought of him when I asked who she might recommend. God. Sent.

When Dr. Carlson got to the room he checked Cooper’s ears and noted that Cooper did in fact have an ear infection.  He laid Cooper down on the exam table, where just moments before Cooper had played happily on the crisp “doctor paper”, rustling and smiling. He laid my son there and palpitated his mid-section. I’d seen him do it a thousand times before to both Kota and Cooper. Never really cared why. Just trusted him. Today he checked my son’s stomach. He checked the right hand side. He checked it again. He paused thoughtfully and checked it again. On the fourth pass, I asked him nonchalantly (read: not yet worried), “Something wrong?” He nodded and said, “I don’t know. I think his liver is enlarged.” He pointed to Cooper’s bloated right hand side, something I had never stopped to look at before. Still unworried, unaffected, I said “Kota was just like that when she was little. We sure do make some fat bald babies, don’t we?” Dr. Carlson didn’t even grin. He just stared at the right hand side of Cooper’s abdomen and said “Are you sure? That doesn’t look normal to me.”

Who am I to argue with a gray-haired man who has been a pediatrician for decades? I asked him, again, not yet worried, “So, what do we do about that?” Visions of antibiotics or other meds danced through my head as Dr. Carlson shook his head and replied with great honesty, and a little exhaustion, “I don’t know.” He left the room in a hurry and I sat and stared at Cooper. I quickly pulled out my phone and found pictures of Dakota at this age, four months, plump and happy. Mid-section proudly exposed, fat. Just like Cooper. Or was she just like Cooper? I heard nurses rushing past, one popping in to say that Dr. Carlson was on the phone but he would be right back.

I felt stumped and a little curious. I felt perplexed, but not yet worried. How soon does worry really set in, anyway? One must process their confusion before it can melt into grief or fear or pain. The nurse popped in again and said that Dr. Carlson would be back in, he was just waiting for a return call from someone. Odd. Who did this man need to call? He was the expert. He knew kids.

It was only later that my mind would carry me back to Cooper’s birth day. Cooper was born at 8:00 a.m. He was calm, and I congratulated myself. He was nine pounds and I congratulated myself. He was awesome. He was perfect. I congratulated myself. They put me in recovery for this, my second c-section. I asked Brandon to accompany Cooper to the nursery as the nurses took him for tests. Unlike Kota’s birth, where I had panicked and, let’s face it, freaked, with Cooper I had breathed steadily, prayed, and trusted. I stayed calm, and so here I was in c-section recovery, calm, mellow, and just a little queasy with the medication.

A short time later Brandon came back into the recovery room with a nurse, but no baby. I asked calmly, “Where is Cooper?” Brandon looked at me hesitantly and said, “Everything is fine but they had to take him to the NICU, his blood sugar is very low.” I paused, questions dancing across my sluggish post-op face. “Is he okay?” “Yes.” “How did they know?” “He wasn’t crying like a regular baby, so they checked his blood sugar.” What I realize now, 19 months later, is that the minute they cut the cord, the lifeline that held Cooper to me, his blood sugar began to drop. They suggested that sometimes big babies have trouble maintaining their blood sugar at first. They go to the NICU and have an IV and they’re fine in a few days. And no one knows why. Except maybe now I do.

Dr. Carlson walked back in and handed me a piece of paper. He said that the GI specialist at the Children’s Hospital wanted to see us before the weekend. It was Tuesday. I thanked Dr. Carlson and headed out the door. I don’t remember now, but I imagine I called from the car. We had an appointment at the hospital the next day, Wednesday.

Wednesday came and we shuffled duty to bring Dakota to school, get the hospital, and play tag throughout the day with various doctors, blood work, x-rays, and ultrasounds. A nursing mother, my hormones could not contain themselves as the phlebotomist held my son down to draw his blood.  I had to leave during the mandatory fasting period and pick up Dakota at school. I rushed back to feed my starving baby. I cried. I waited by the phone with baited breath for 24 hours.

On Thursday the hospital called and said that Cooper’s ultrasound showed “no tumors, no mass”. He was cancer free. I sighed relief. A few hours later, they called back to say that his bloodwork had come back and was strongly indicative of Glycogen Storage Disease. They set us up with an appointment the next day, Friday, with a metabolic geneticist. Glycogen? Disease? Geneticist?

So here we are, 15 months later. We have moved across the country. Endured 7.5 months of hard core sleep deprivation while caring for Cooper. Learned more about the medical world than I ever thought I’d need. Welcomed home health nurses into our family to keep Cooper safe, while (can I say something selfish?) forgoing privacy and normalcy in our home. Creating a new normal. Or trying to.

Cooper lives on a timer. He sometimes must eat hourly, sometimes every 3 or 4 hours on a good day, before his blood sugar drops dangerously low, and often precipitously fast. He cannot maintain his own blood sugar and I am weary of people asking if he will outgrow this disease (he will not). I am weary of noting that he looks fine (he does). Our normal is shattered, and although the past 15 months have brought tremendous blessings on our household, we are weary. So weary. We sleep in clips. We trade shifts often. When nursing care is not available (holidays, vacations, etc), we don’t sleep. I worry about the effect that our constant state of urgency will have on my daughter. She’s only three and a half, but she is already so grown up. She knows that she gets less attention. And she’s okay. But it’s a tight rope to walk to keep her on the right track while, let’s face it, keeping Cooper alive.

Rare disease. Metabolic control. Disease management. My lexicon has changed sharply this past year. It has taken on a new sense of importance and urgency. And fear. And sorrow. And anticipatory grief. And learning. And stretching. And growing. And breaking down. It turns out that I can actually have a breakdown right in front of you, internally, and you may never know. I’m not even sure I hide it for my sake, probably more for yours. I don’t want your pity, and I don’t want your sense of shame for me. My life is full and beautiful and amazing. And my children are amazing. And my marriage is stronger than yours may ever need to be. And I already know that if I lose it now, you’ll give me the look. The one that projects pity and shame and sorrow all over me. I don’t need it. I need a nap.

But let’s be practical. Even with a nap I’ll still be tired, so maybe what I really need is for someone to watch my kids for an hour so I can unpack boxes that were packed one year ago as we prepared to follow God’s lead across the country. 1,273.4 miles. We moved that far on hardly any sleep, high stress, with my son seizing in the backseat of the car, me with no voice for nine days, not sure where the UHaul was pointing a week later and only one of us having been given a job on the other side. I was so tired that I didn’t realize I should be afraid. I didn’t realize that I was being faithful to God’s plan. I just moved. I followed instinct. I followed leads. I was too tired to argue with God.

My life is completely unrecognizable from a year ago. I live in a different house. I have a different job. My daughter is in a different school. My son is not in school anymore, he’s at home with nurses who sometimes eat my food, break my toilet seat (it’s happened three times now in just six months), and call in sick at the last minute which means I don’t get to sleep that night or work that day. When Cooper has a cold, a growth spurt, teething pain, or (as is the case right now) exposure to Lyme disease, the whole world goes into slow motion. I cannot react as I would with Kota, or as you might with your “normal” child. I must go into hyper vigilance and high stress.

My husband and I are holding it together. In some ways stronger than ever, in other ways just better at fighting fast because we’re too tired to drag it out very long. Our underlying stress level would blow most people’s out of the water, and I feel crazy when people say “I don’t know how you do it”. Guess what? Neither do we. We’re barely doing it. Whatever goes right does so by the Grace of God. 

Whatever goes wrong, we’re often too tired to make you aware. We plod through. We’re okay, but we’re hopeful that GSD is kinder to its parents in the coming years. We’re praying for a cure. In fact, every night I pray for a cure as I rub Cooper’s soft hair and tummy.

Side bar: I know it’s almost time for the timer to go off. I dash off another sentence and turn to the timer behind me. Twenty two seconds remain. I am calibrated to this timer. I am proud of that and fearful. And anxious. And distressed. I need that timer as backup, but I often turn to look at it just as it starts to count down the last 30 seconds before a blood sugar check.

His blood sugar is okay. Not great but okay. I have twenty more minutes before I will check him again, probably administer a feed through a tube in his stomach, and then welcome the night nurse who will talk non-stop for an hour even if I remind her how exhausted I am. She’s part of our story. And she keeps my son alive, so maybe I should let her talk. But I’m tired, and weary and stressed the f*ck out.

You know how your kids go to bed at night and you power down for 12 hours? We don’t. I check on Cooper every 30-90 minutes at night, from the time he goes to sleep until the nurse gets here. When he cries himself to sleep, or he’s right on the cusp of sleep and that timer goes off, I go in there and poke his finger with a needle, and I wake him back up all over again. And he grumbles at me and we do it all again. The crying. The stress. The exhaustion.

I’m not mad that your life is normal, but I’m tired. Tired of GSD. Tired of being tired. Tired of stress. Tired of vigilance. Tired of worrying.

But make no mistake my life is blessed beyond explanation. I just don’t have time to tell you about all the blessings because the timer is going off and the nurse will be here in 11 minutes. Unless she’s late, which she often is.