I don't know what I was expecting when I finally weaned myself off the pump. I know that I wasn't expecting to feel depressed, like I'd lost part of myself. It was confusing to me to feel so down and sad, especially now that I had some freedom back. I was set free from the bondage of the pump! And this made me feel sad? That made zero sense. But hormones don't have any respect for decorum or common sense.
I felt more useless than ever, now that I wasn't pumping Sam's bottles. We had hit a low point in July. Looking through the logbooks I kept, I see the days where Sam only drank 10.5 ounces, 11 ounces, or 12 ounces total on a daily basis. I was consistently and regularly panicked. Even after we switched him from the breastmilk to the formula, it took time for his body to adjust to the change. I think there was a psychological aspect to it as well. It took some time for him to realize that it wasn't going to hurt as much to drink and that he didn't have to be afraid to drink. He was struggling with the transition and I constantly questioned whether I had done the right thing. Logically, it made sense for me to stop pumping. Physically, it made sense for me to stop. I had been ridiculously sleep deprived (without the benefit of caffeine) for nearly a full year- much more so than if I'd had a newborn with regular up-all-night needs. For months, Sam ate every three hours, around the clock. For months, I pumped every three hours around the clock. So at one point, I would pump at 9, feed Sam at 9:30, go to bed at 10 or 10:30. Up again at 12, feed Sam at 12:30, back to bed around 1:30. Up again at 3- this was usually when I read my Bible. For some reason, the night always seems quietest at 3 am. And on it went. Eventually, I spaced out the pumping and feeding a bit, but I never got much sleep. So logically, it should have been a huge relief to eliminate the pump from my daily schedule. Emotionally, my body just wasn't getting the memo. I felt like I was walking around in a gloomy fog.
Depression is sometimes thrown around like a dirty word. Sometimes it's used too flippantly. It's medicated lavishly and treated as something that we should vaccinate ourselves against. As I read my Bible, I saw the account of Job and the Psalms of David in a new way. Job was deeply and heavily afflicted, physically and emotionally. He lost his children, his wealth and his health. He lost the respect of his wife and his friends berated him for his supposed sin. He was blamed for own misfortune and infirmities. And yet, through it all, he refused to curse God. He sought answers, but he stopped short at turning his back on the One that could help him. David was "A man after God's own heart," known both for his scandalous sin and his passionate dedication to his God. When I read the book of Job and the Psalms, I saw depression.
"I loathe my very life; therefore I will give free reign to my complaint and speak out in the bitterness of my soul."
Job 10:1 (NIV)
"Yet if I speak, my pain is not relieved; and if I refrain, it does not go away. Surely, O God, You have worn me out; You have devastated my entire household."
Job 16:6-7 (NIV)
"But He knows the way that I take; when He has tested me, I will come forth as gold."
Job 23:10 (NIV)
"Yet I am not silenced by the darkness, by the thick darkness that covers my face."
Job 23:17 (NIV)
"Save me, O God, for the waters have come up to my neck. I sink in the miry depths, where there is no foothold. I have come into the deep waters; the floods engulf me. I am worn out calling for help; my throat is parched. My eyes fail, looking for my God."
Psalm 69:1-3 (NIV)
"Deep calls to deep in the roar of Your waterfalls; all Your waves and breakers have swept over me. By day the Lord directs His love, at night His song is with me- a prayer to the God of my life."
Psalm 42:7-8 (NIV)
"The Lord is close to the brokenhearted and saves those who are crushed in spirit."
Psalm 34:18 (NIV)
"I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord."
Psalm 40:1-3 (NIV)
I saw depression, but I also saw hope and trust.
I felt crushed in spirit, like I had given all I had to give and was bone dry. "Don't ask any more of me- I have nothing left."
The days were long and dark, but they passed. I kept mixing bottles, checking on Molly's schoolwork, doing the laundry, fixing the dinners, feeding the dog. Time went by and slowly the fog grew less dark. I can't accurately describe that time in words- it was dark, lonely, sad, and seemed to drag on interminably. I think that a part of it was not just the hormone mix-up after quitting the pump, but also a sorrowing over the death of my dreams. I went into my pregnancy with Sam full of plans and a mental spreadsheet of how exactly I would like things to go. Instead of having Molly 2.0, I got the very first and never-to-be-duplicated SAM. He's an amazing little boy, and I wouldn't trade him for anything in the world, not even a "perfect" little baby that cries at explainable times, nurses like a champ, and only spits up if they are doing a handstand. God gave me an incredible, beautiful gift when he loaned me this baby. I love him more than I love myself and he's been the exactly right seamless piece that fit the hole in our family. I still struggled, though, with feelings of jealousy and despair, especially when we went to church and I saw other mothers and babies interacting. Or when I tried to start attending PWOC on post and Sam got sick within 48 hours after being around other babies. I'm human. Sam was hard. I struggled.
If I were someone reading this blog, I'd probably have a a question or two to ask- especially after reading this post and the one entitled, "me vs hell." The question at the top of the list would be, "Did you ever consider medication? Because that might have been helpful...you sad, sad, crazy lady." That's a very valid point. I will do my best to explain my reasoning for not pursuing medication.
When I was sleep deprived and enraged, I slammed things and cried and made a general mess of myself. But I never hurt myself and I knew that I would not hurt my children.
When the world turned dark for me after I stopped pumping, I felt the need to just keep going, one foot in front of the other even if I couldn't see where I was stepping. I was afraid that medication would make my bad situation worse with side effects and a numbing of my emotions.
I didn't feel that I had Time to go the doctor for myself and discuss "my feelings."
I was afraid that if I told a medical professional how I was feeling, they might think I was an unfit mother. One of my biggest fears was that people would agree with me- that I was failing in my mission to take care of Sam and Molly.
I am very aware that these reasons aren't the greatest.
Finally, I didn't pursue medication because at the very bottom of all of those swirling emotions: rage, sadness, sorrow... there was meaning and reason. I had Reasons for feeling the way that I did. None of this just came upon me suddenly without provocation. My rage was brought on by lack of sleep and intense emotional and physical stress. My depression was brought on by a mixed up cocktail of hormones combined with stress over Sam's dietary issues. I felt that it was completely valid for me to feel the way that I did and it would be weird not to experience some intense emotion as a result. Just as when I was sick with mastitis and became upset when I was told that I would potentially be separated from my children for a month. My doctor said, "You seem sad. Would you like for me to prescribe something for depression?" Duh. I SHOULD be sad. If I WASN'T sad, you should be concerned and check to make sure I'm not a ROBOT. To further clarify, just in case anyone is wondering, I am NOT a robot. And if you're reading this, neither are you. I readily acknowledge that there are many situations involving chemical/hormonal imbalances that benefit from medication. I'm not anti-pharmaceuticals. When I felt the change in my demeanor, I did some research. Everything that I read implied that the hormonal imbalance brought on by weaning (or in my case, ceasing pumping) was temporary and would pass.
This whole journey has been an experience that has brought me into a deeper relationship with Jesus. It's not over.
About a year after I divorced myself from the pump, I began experiencing sudden and deep depression- darker and thicker than anything that I'd yet felt. Along with the depression, I was in physical pain. I understood with sharp clarity what Sylvia Plath described in her book, The Bell Jar. For about two weeks out of the month, it was as if the world around me was skewed. I came very close to losing the ability to function. The onset of these symptoms left me breathless, like a punch in the throat. After a couple of months of hormonal fluctuation and extreme mood swings, it was discovered that I have recurring ovarian cysts. They grow and shrink over the course of the month, and as they grow, they release hormones into my body and make me feel crazy. This can be treated with medication. So now, every morning, I take a little blue pill that keeps me on the right side of the Matrix.
As far as depression and medication go, I don't believe that there is one right answer that works for everyone. I think that solutions should be sought with a lot of prayer and careful deliberation.
And I think that we should talk about it more: bring this darkness out into the light and support one another.
Tuesday, March 19, 2013
Sunday, March 17, 2013
ka chunk
KA chunk KA chunk KA chunk....
That would be the sound of a breastpump's motor.
Every four hours for twenty minutes. Because that's how long it took. At least I didn't have to pump every three hours anymore. I could go four... and sometimes six at night. But now Sam didn't need the milk, since he was drinking a medical grade formula. I dumped some of it before it occurred to me that I could donate it. Unfortunately, I couldn't donate all of it. A good portion of it was too old to be accepted according to the standards of WakeMed's milk bank.
That was great, at least that much wouldn't be wasted. Now I could stop pumping! I could almost taste the freedom. So. How...do...I....stop...? Because you can't just STOP. "Engorged" is easily one of my least favorite words of all time, so I won't use that word here. It is effectively banned from this blog. I remembered very clearly what it was like to have mastitis, and I didn't want to experience that again.
I had read quite a few books on breastfeeding. I looked up "drying up milk supply" online, read online forums... all my resources led me to the same dead end. If you need to increase your milk supply, there are lots of tips and suggestions out there. But if you've been pumping for ten months around the clock and never nursed at all and need to decrease your milk supply, there aren't a lot of options. It's possible that I was too dedicated to my routine. I had become a milk producing machine. Moo. I was a slave to my schedule. I followed the protocol; I started going longer between pumping sessions in order to decrease production. Weirdly, this didn't work. Pumping less frequently didn't cause me to produce less milk, it just meant that when I did finally pump, I needed four 8 oz bottles to contain it all. I was completely out of control. Even if I went 8 hours between sessions, all that I accomplished was bottle overflow and discomfort. I've heard urban legends about a pill that you can take to dry up milk supply. Years ago, this was something available to new moms that chose not to breastfeed. This pill is no longer available. It was recalled and pulled off the market due to risks and side effects. I went to the doctor to get help- and they had none to offer me. "Keep doing what you're doing. Stretch out the sessions. Or you can just keep pumping. Your milk will dry up eventually... probably..." I was haunted by the suspicion that I was one of those that could produce milk for years. Since I had no desire to hire myself out as a wet nurse, this needed to end. I was tied to that pump. My body was tired and worn out. According to some sources, sage tea can help slow milk production. I drank a LOT of sage tea. I read somewhere that it's possible for sage to have a hallucinogenic effect, but only in extremely large quantities. This is true. Also, it didn't accomplish the desired purpose. I just ended up with a lot of un-donate-able milk that smelled a little like sage. I tried cabbage and sudaphed. I followed all the directions and advice. I did everything right (and even tried some things that were downright weird) and still- my body kept over producing and my discomfort kept increasing.
Finally, in desperation, I decided to try going cold turkey. What options were left? Two days into my cold turkey campaign = agony. On a Saturday night, after going about 18 hours without pumping, I honestly thought that I might die. This verse came to mind:
"Give beer to those who are perishing, wine to those who are in anguish;"
Proverbs 31:6 (NIV)
So I sent my husband out for a bottle of wine. I drank that whole stupid bottle of wine. I don't reccommend this method of coping. Instead of giving me some relief, all it accomplished was making me fuzzy headed and agonized. It didn't numb the pain at all. Which, in retrospect, is a great thing. If it had numbed my pain, it may have proven to be a snare to me later on- but as it stands currently, alcohol is not an attractive coping mechanism for me. In fact, the very taste of alcohol makes me feel ill. That was a long night. The pain didn't allow for much sleep and by the time morning rolled around, I was a miserable mess of a woman. So. Much. Pain. My husband didn't know how to advise me. He was concerned about the risk of mastitis, but at the same time, he was ready for me to be done with the pump. By mid morning, I was slumped on the kitchen floor in tears. My baby was crying, but it hurt like fire to hold him. My daughter was scared. My husband was done. "I can't stay here with you like this. I'm leaving." And he walked out. There was nothing left for me. I couldn't help my baby. I couldn't help myself. I had neglected my daughter's needs in trying to care for my son. My body felt broken. My baby cried- and I couldn't pick him up. My daughter fell apart, crying hysterically. We sat on the kitchen floor together and cried and cried. In an earlier post, I talked about falling down a hole and wondering where the rocks were. I'd heard people talking about the rocks at the bottom, but I just seemed to keep falling without ever landing on them. That day I found the rocks.
So what do you do when you hit rock bottom?
You lie there with the wind knocked out of you. Eventually, though, you realize that you are still breathing. You check to see if any bones are broken. And you slowly get to your knees and find that you can still crawl.
I got up. I gave up. Ka chunk. Ka chunk. Ka chunk. I thought, "I will be tied to this pump forever." But that day, there was less milk. Eight hours later... I pumped again... but there wasn't as much pain. Over the following week, I was able to scale back even more. 12 hours between sessions. Less production. I could hold my baby again without feeling like screaming. I could go places without taking the pump and my nursing covers. My husband didn't really Leave. I thought he was really Leaving and so did my daughter. He was back after about a half hour. Apparently he walked outside for some air, but I didn't know that at the time.
I know mothers who have had wonderful experiences breastfeeding their babies. I hear it's a bonding experience like none other. I don't know this from personal experience, since Sam never nursed. My trials with breastfeeding were absolutely horrific. In retrospect, I can say that I am glad that I did it, even with all the pain and lost sleep and psychological damage. If I hadn't done it, I'd always wonder, "What if I had? What if that had been the thing that would have worked for Sam?" I'd be burdened with the guilt of not knowing while saddled with all the facts about the glories of breastmilk, it's healing powers, it's golden aura of unparalleled caloric perfection. Having said that, I will say this: I am not a die hard Le Leche Mom. Ultimately, breastmilk was not the best thing for Sam. His body had different needs. Some babies are like that. As I scroll my Facebook newsfeed, I see almost daily posts by moms I know that either are breastfeeding or who just like to advocate for the cause. Those posts still arouse feelings of guilt in me. "Did I REALLY do all I could? Maybe I didn't try hard enough..." But I did. I did try. I was hospitalized. I was fevered. I cracked. I bled. I pumped. I cried. I lost sleep. I still feel defensive because it wasn't enough. And carrying around my 10 month old baby with a bottle and a can of formula- I felt like people judged me. "If you'd breastfed, maybe he wouldn't be like this." I wanted a t-shirt that read, "I TRIED. I FAILED. GO AWAY." (Do they sell those? Because that would be kind of awesome.)
As a mother, I am my own worst critic. I seriously doubt that anyone judges me as harshly as I do. My biggest challenge hasn't been feeding Sam, getting through the day with very little sleep, or any of the other mountains I've crawled up. My biggest challenge is remembering that I am God's precious child. And that Jesus would have died for me- even if it was only for me and no one else.
Even though I didn't succeed at nursing.
That would be the sound of a breastpump's motor.
Every four hours for twenty minutes. Because that's how long it took. At least I didn't have to pump every three hours anymore. I could go four... and sometimes six at night. But now Sam didn't need the milk, since he was drinking a medical grade formula. I dumped some of it before it occurred to me that I could donate it. Unfortunately, I couldn't donate all of it. A good portion of it was too old to be accepted according to the standards of WakeMed's milk bank.
That was great, at least that much wouldn't be wasted. Now I could stop pumping! I could almost taste the freedom. So. How...do...I....stop...? Because you can't just STOP. "Engorged" is easily one of my least favorite words of all time, so I won't use that word here. It is effectively banned from this blog. I remembered very clearly what it was like to have mastitis, and I didn't want to experience that again.
I had read quite a few books on breastfeeding. I looked up "drying up milk supply" online, read online forums... all my resources led me to the same dead end. If you need to increase your milk supply, there are lots of tips and suggestions out there. But if you've been pumping for ten months around the clock and never nursed at all and need to decrease your milk supply, there aren't a lot of options. It's possible that I was too dedicated to my routine. I had become a milk producing machine. Moo. I was a slave to my schedule. I followed the protocol; I started going longer between pumping sessions in order to decrease production. Weirdly, this didn't work. Pumping less frequently didn't cause me to produce less milk, it just meant that when I did finally pump, I needed four 8 oz bottles to contain it all. I was completely out of control. Even if I went 8 hours between sessions, all that I accomplished was bottle overflow and discomfort. I've heard urban legends about a pill that you can take to dry up milk supply. Years ago, this was something available to new moms that chose not to breastfeed. This pill is no longer available. It was recalled and pulled off the market due to risks and side effects. I went to the doctor to get help- and they had none to offer me. "Keep doing what you're doing. Stretch out the sessions. Or you can just keep pumping. Your milk will dry up eventually... probably..." I was haunted by the suspicion that I was one of those that could produce milk for years. Since I had no desire to hire myself out as a wet nurse, this needed to end. I was tied to that pump. My body was tired and worn out. According to some sources, sage tea can help slow milk production. I drank a LOT of sage tea. I read somewhere that it's possible for sage to have a hallucinogenic effect, but only in extremely large quantities. This is true. Also, it didn't accomplish the desired purpose. I just ended up with a lot of un-donate-able milk that smelled a little like sage. I tried cabbage and sudaphed. I followed all the directions and advice. I did everything right (and even tried some things that were downright weird) and still- my body kept over producing and my discomfort kept increasing.
Finally, in desperation, I decided to try going cold turkey. What options were left? Two days into my cold turkey campaign = agony. On a Saturday night, after going about 18 hours without pumping, I honestly thought that I might die. This verse came to mind:
"Give beer to those who are perishing, wine to those who are in anguish;"
Proverbs 31:6 (NIV)
So I sent my husband out for a bottle of wine. I drank that whole stupid bottle of wine. I don't reccommend this method of coping. Instead of giving me some relief, all it accomplished was making me fuzzy headed and agonized. It didn't numb the pain at all. Which, in retrospect, is a great thing. If it had numbed my pain, it may have proven to be a snare to me later on- but as it stands currently, alcohol is not an attractive coping mechanism for me. In fact, the very taste of alcohol makes me feel ill. That was a long night. The pain didn't allow for much sleep and by the time morning rolled around, I was a miserable mess of a woman. So. Much. Pain. My husband didn't know how to advise me. He was concerned about the risk of mastitis, but at the same time, he was ready for me to be done with the pump. By mid morning, I was slumped on the kitchen floor in tears. My baby was crying, but it hurt like fire to hold him. My daughter was scared. My husband was done. "I can't stay here with you like this. I'm leaving." And he walked out. There was nothing left for me. I couldn't help my baby. I couldn't help myself. I had neglected my daughter's needs in trying to care for my son. My body felt broken. My baby cried- and I couldn't pick him up. My daughter fell apart, crying hysterically. We sat on the kitchen floor together and cried and cried. In an earlier post, I talked about falling down a hole and wondering where the rocks were. I'd heard people talking about the rocks at the bottom, but I just seemed to keep falling without ever landing on them. That day I found the rocks.
So what do you do when you hit rock bottom?
You lie there with the wind knocked out of you. Eventually, though, you realize that you are still breathing. You check to see if any bones are broken. And you slowly get to your knees and find that you can still crawl.
I got up. I gave up. Ka chunk. Ka chunk. Ka chunk. I thought, "I will be tied to this pump forever." But that day, there was less milk. Eight hours later... I pumped again... but there wasn't as much pain. Over the following week, I was able to scale back even more. 12 hours between sessions. Less production. I could hold my baby again without feeling like screaming. I could go places without taking the pump and my nursing covers. My husband didn't really Leave. I thought he was really Leaving and so did my daughter. He was back after about a half hour. Apparently he walked outside for some air, but I didn't know that at the time.
I know mothers who have had wonderful experiences breastfeeding their babies. I hear it's a bonding experience like none other. I don't know this from personal experience, since Sam never nursed. My trials with breastfeeding were absolutely horrific. In retrospect, I can say that I am glad that I did it, even with all the pain and lost sleep and psychological damage. If I hadn't done it, I'd always wonder, "What if I had? What if that had been the thing that would have worked for Sam?" I'd be burdened with the guilt of not knowing while saddled with all the facts about the glories of breastmilk, it's healing powers, it's golden aura of unparalleled caloric perfection. Having said that, I will say this: I am not a die hard Le Leche Mom. Ultimately, breastmilk was not the best thing for Sam. His body had different needs. Some babies are like that. As I scroll my Facebook newsfeed, I see almost daily posts by moms I know that either are breastfeeding or who just like to advocate for the cause. Those posts still arouse feelings of guilt in me. "Did I REALLY do all I could? Maybe I didn't try hard enough..." But I did. I did try. I was hospitalized. I was fevered. I cracked. I bled. I pumped. I cried. I lost sleep. I still feel defensive because it wasn't enough. And carrying around my 10 month old baby with a bottle and a can of formula- I felt like people judged me. "If you'd breastfed, maybe he wouldn't be like this." I wanted a t-shirt that read, "I TRIED. I FAILED. GO AWAY." (Do they sell those? Because that would be kind of awesome.)
As a mother, I am my own worst critic. I seriously doubt that anyone judges me as harshly as I do. My biggest challenge hasn't been feeding Sam, getting through the day with very little sleep, or any of the other mountains I've crawled up. My biggest challenge is remembering that I am God's precious child. And that Jesus would have died for me- even if it was only for me and no one else.
Even though I didn't succeed at nursing.
Thursday, March 14, 2013
daily things
Our first few months at home went by in a blur of doctor's visits, obligations, tests, and medication refills. I'll keep this as short (ha!) as I can so it won't get tedious.
Life went on. Make doctor's appointments. Schedule in-home nurse visits three days a week. Pump. Feed. Inject. Make contact with our cardiologist. Find a pediatrician. Schedule Sam's first well check with his new pediatrician. Call the emergency number again because Sam is throwing up- even though he's on both Zantac and Prilosec for reflux. Put his cute G Diapers on thinking that this is ONE thing that I planned that I can still do. I eventually learned that cloth diapers are not a great idea when a baby is on Lasix. Sam was still on diuretics to flush excess fluid from his system. I had no idea a baby could pee so much. After the first month of being home, I gave up on cloth diapering because Sam was soaking through them every hour. It was interfering with his napping, his nighttime sleeping, and eliminating any possibility of my getting any sleep.
We had something scheduled virtually every day and it all revolved around Sam. Molly was a champion sister. Whenever I had a free moment, not pumping or feeding or doing laundry (which I did in order to keep from being buried alive) or driving to one of Sam's numerous appointments, I tried to spend it with Molly. I strove to make those free moments as close to "normal" as I could- close to the normal that we used to enjoy on a regular basis.
Life went on. Make doctor's appointments. Schedule in-home nurse visits three days a week. Pump. Feed. Inject. Make contact with our cardiologist. Find a pediatrician. Schedule Sam's first well check with his new pediatrician. Call the emergency number again because Sam is throwing up- even though he's on both Zantac and Prilosec for reflux. Put his cute G Diapers on thinking that this is ONE thing that I planned that I can still do. I eventually learned that cloth diapers are not a great idea when a baby is on Lasix. Sam was still on diuretics to flush excess fluid from his system. I had no idea a baby could pee so much. After the first month of being home, I gave up on cloth diapering because Sam was soaking through them every hour. It was interfering with his napping, his nighttime sleeping, and eliminating any possibility of my getting any sleep.
We had something scheduled virtually every day and it all revolved around Sam. Molly was a champion sister. Whenever I had a free moment, not pumping or feeding or doing laundry (which I did in order to keep from being buried alive) or driving to one of Sam's numerous appointments, I tried to spend it with Molly. I strove to make those free moments as close to "normal" as I could- close to the normal that we used to enjoy on a regular basis.
She took the above photo as part of a photo shoot that she was doing with her dolls. She was making a movie on our laptop about a day in the life of Jon and Barbara, her Bitty Twins. Barbara is just below my right elbow. Hi, Barbara!
All the expectations I had cherished while I was pregnant with Sam: I had to let them go, one by one. Even the things that I hadn't consciously thought about, things I had taken for granted while I anticipated being a mother of two: one by one, they fell away. The baby wrap didn't work well for Sam. I was afraid it would squish his incision and it was difficult to use with his feeding tube taped to his face. The Ergo was just a joke. I gave it my best effort, but it didn't please him. One of my big concerns was that Sam continued to vomit with nearly every feeding and his vomit contained large chunks of undigested formula. I took photos of it, I documented it in my notebook, (I quickly realized after we brought Sam home that my brain couldn't handle keeping track of his meds, feedings, wet and dirty diapers and my pumping schedule- I needed a written log.) I even took samples of it to the doctor. They were disturbed, but there were no solutions except to wait until I could safely wean him from formula onto the breastmilk. We'd only been home about two weeks when Sam sneezed and his tube shot out his nose. It was completely caked with and encased in coagulated formula. I was done. No more tube for Sam. We would have to make it work with a bottle. I started slowly integrating the breastmilk while decreasing the formula.
We went once every two weeks to have Sam's blood drawn to check his heparin levels. We did not have one successful blood draw after we left Duke. Not one. Every single experience was an epic fail and caused Sam a lot of trauma. When they did get enough blood, his heparin levels never measured correctly. They were always crazy high and the doctors couldn't make sense of it. So after we'd been home about two months, we went back to Duke to keep an appointment with a hematologist to determine what our plan of action would be. The doctor was extremely pleased with Sam's progress and decided to take Sam off the heparin even though we couldn't get an accurate reading of his levels. No more injections!
We had a respite after we initially came home from Duke, but I didn't know that it was a respite. Things were hard, but I didn't know that they would get harder. (Harder? Are you kidding me? Yes, things can get harder.) I learned to travel with a feeding pump and a breastpump. I learned that burp cloths are ridiculous and that receiving blankets do a much better job with you have a baby with severe reflux. Amazing how a tiny baby can throw up so MUCH. My husband had resumed his regular obligations as work. He worked a 16 hour day and had one weekend off a month. He's in the military. And his assignment required him to work that schedule for about two years.
One big thing that was affected by Sam's birth was Molly's schooling. Prior to having Sam, I had utilized an a la carte method in selecting her curriculum. That's what I watched my mom do growing up: pick the best of the best. Spend months, days and hours researching different publishers and programs and lesson plans. The main issue with this method was that the curriculum I ended up with demanded a lot of hands on time from me as a teacher. Don't misunderstand- I LOVE hands on time with my kids. But I didn't have a lot of time to spare and I hated spending all of my spare time in "school mode." Molly needed me to spend time with her- just With her- not teaching or "doing school," but just Being Us. When Sam was born (flash bang) we were suddenly and unexpectedly apart for a month and when we finally got home, things were not what any of us had anticipated. All new babies are time consuming. But Sam was definitely different and very needy. At the risk of being judged (go ahead, I don't mind) I'm going to share my super secret ultra special solution to this problem of school vs loving quality time. It is this: we took some time off from school. Yup. And it didn't hurt her one bit. After we'd been home for a little while, I found a different curriculum. We started using Switched on Schoolhouse by Alpha and Omega, a computer based curriculum. Once Molly learned how to navigate it, she could get her school done independantly, even if I was stuck in Sam's room cleaning up vomit or battling him over a bottle. Molly's education didn't suffer for her time off. She's back on track and right on schedule at present time. But taking that time off was hugely beneficial to our relationship. It allowed me to invest in my daughter.
We were making progress. Sam was growing and putting on weight. We had fewer doctor's appointments. I was able to discontinue the nursing service three times a week. The nursing service was something that didn't prove to be helpful and I had grown to dread the visits. Our nurse was very nice, but she didn't seem to completely understand our situation and I really felt more like I was being investigated by social services. She had a lot of questions about the bruising on Sam's legs and always redocumented it every time she visited. The bruising was from the injections, but she seemed suspicious of that at first. Around the first of December, Sam tested positive for MRSA in his nose. So we had to add an antibiotic and nasal swab to his daily list of medications. At that time he was receiving: aspirin, zantac, lasixs, clindomycin and a nose swab of antibiotic ointment. We had to discontinue the prilosec because it caused severe stomach upset. He continued to vomit, though. I could hear his stomach rumble everytime he drank. For a short time, even with the vomiting, he ate well. He consistently ate a significant amount on a daily basis and the amount that he threw up wasn't hurting his totals too much. Unfortunately, that didn't last long.
We went once every two weeks to have Sam's blood drawn to check his heparin levels. We did not have one successful blood draw after we left Duke. Not one. Every single experience was an epic fail and caused Sam a lot of trauma. When they did get enough blood, his heparin levels never measured correctly. They were always crazy high and the doctors couldn't make sense of it. So after we'd been home about two months, we went back to Duke to keep an appointment with a hematologist to determine what our plan of action would be. The doctor was extremely pleased with Sam's progress and decided to take Sam off the heparin even though we couldn't get an accurate reading of his levels. No more injections!
We had a respite after we initially came home from Duke, but I didn't know that it was a respite. Things were hard, but I didn't know that they would get harder. (Harder? Are you kidding me? Yes, things can get harder.) I learned to travel with a feeding pump and a breastpump. I learned that burp cloths are ridiculous and that receiving blankets do a much better job with you have a baby with severe reflux. Amazing how a tiny baby can throw up so MUCH. My husband had resumed his regular obligations as work. He worked a 16 hour day and had one weekend off a month. He's in the military. And his assignment required him to work that schedule for about two years.
One big thing that was affected by Sam's birth was Molly's schooling. Prior to having Sam, I had utilized an a la carte method in selecting her curriculum. That's what I watched my mom do growing up: pick the best of the best. Spend months, days and hours researching different publishers and programs and lesson plans. The main issue with this method was that the curriculum I ended up with demanded a lot of hands on time from me as a teacher. Don't misunderstand- I LOVE hands on time with my kids. But I didn't have a lot of time to spare and I hated spending all of my spare time in "school mode." Molly needed me to spend time with her- just With her- not teaching or "doing school," but just Being Us. When Sam was born (flash bang) we were suddenly and unexpectedly apart for a month and when we finally got home, things were not what any of us had anticipated. All new babies are time consuming. But Sam was definitely different and very needy. At the risk of being judged (go ahead, I don't mind) I'm going to share my super secret ultra special solution to this problem of school vs loving quality time. It is this: we took some time off from school. Yup. And it didn't hurt her one bit. After we'd been home for a little while, I found a different curriculum. We started using Switched on Schoolhouse by Alpha and Omega, a computer based curriculum. Once Molly learned how to navigate it, she could get her school done independantly, even if I was stuck in Sam's room cleaning up vomit or battling him over a bottle. Molly's education didn't suffer for her time off. She's back on track and right on schedule at present time. But taking that time off was hugely beneficial to our relationship. It allowed me to invest in my daughter.
We were making progress. Sam was growing and putting on weight. We had fewer doctor's appointments. I was able to discontinue the nursing service three times a week. The nursing service was something that didn't prove to be helpful and I had grown to dread the visits. Our nurse was very nice, but she didn't seem to completely understand our situation and I really felt more like I was being investigated by social services. She had a lot of questions about the bruising on Sam's legs and always redocumented it every time she visited. The bruising was from the injections, but she seemed suspicious of that at first. Around the first of December, Sam tested positive for MRSA in his nose. So we had to add an antibiotic and nasal swab to his daily list of medications. At that time he was receiving: aspirin, zantac, lasixs, clindomycin and a nose swab of antibiotic ointment. We had to discontinue the prilosec because it caused severe stomach upset. He continued to vomit, though. I could hear his stomach rumble everytime he drank. For a short time, even with the vomiting, he ate well. He consistently ate a significant amount on a daily basis and the amount that he threw up wasn't hurting his totals too much. Unfortunately, that didn't last long.
Tuesday, March 12, 2013
thanks, but...
"I couldn't do it."
If I had a dollar for every time someone said that to me... we might have been able to cover Sam's Duke bill without insurance. And that amount of that bill would have covered the cost of our house twice, our van, and part of our truck. Yee-ouch. I appreciate the sentiment behind the comment because, if nothing else, it lends value to my effort. But saying, "I couldn't do it," is something that is appropriate to say if you hear me talk about planning to swim the English Channel or do an Ironman triathlon while pushing Sam in my running stroller. Because those are things that I might attempt to do if I were crazy. Or really, really, really fit. But mainly, those are hard things that I would choose to do. Optional hard things that I might attempt because they are challenging. Battling your baby over drinking bottles to keep him alive, pumping all day and all night because you are convinced it is the best thing for your baby's health, giving heparin shots twice a day, giving up virtually all social interaction because of your baby's shattered immune system, dealing with severe chronic reflux- these are not hard things that I chose to do. I did them (and still do them) because I honestly feel that there is no other viable choice. Just like so many other mothers that deal with chronic reflux, or have a child or children with special needs, who have husbands that work crazy hours or deploy, those mothers that stay up all night catching their child's vomit in a bowl, giving tylenol enemas for fever because that poor baby can't keep down liquid meds, mothers who have children with diabetes and require constant monitoring, mothers who have children that can't have gluten or red dye, mother who undergo chemo, mothers that die inside because their adult child is struggling, mothers that mother their children and also mother their parents at the same time- these mothers do hard things. These mothers do not get up in the morning and say, "I am going to do hard things today! Because I am awesome! I am Mother, hear me ROAR!" No. These mothers do things that are hard because there is no other choice. Not really. I do the things I do because I have carefully weighed my options (if there appear to be any) and have determined that there is No. Other. Choice. To all the moms who have said to me, "I couldn't do it." I challenge you- what would you do? I bet you'd do the same thing I did. I bet you'd put yourself aside and give every bit of yourself- and you'd probably do it better than I have.
I don't know how you do it!"
Me either. And if you figure it out, let me know, ok? Just kidding. I know how I do it. I don't. At least, I don't do it by myself. I'm not awesome. I'm not Super Mom. If I ever met Super Mom, I seriously doubt that we would get along. In fact, I mightpurposely accidently trip her on her way out of the Super Mom Cape Store. Super Mom isn't real. But if she were, I bet she wouldn't lose her temper as much as I do. I bet she wouldn't break down crying during her daughter's gymnastics practice when she sees a 1 year old deftly drinking from the same sippy cup that her 2.5 year old is drinking from- except she has to hold her son's cup so he won't choke. And he's not drinking juice like the 1 year old. He's drinking formula. She wouldn't cry tears of jealousy over that. She is the Proverbs 31 woman that homeschools five kids while also selling Creative Memories, Thirty-One and Scentsy from home. She is mature. She doesn't sometimes ask her son, "Why can't you just be NORMAL?" She is able to find the time to sit down and have quality time with her daughter even though her son is sick. She is able to give 100% to both kids all the time. She doesn't dread going to bed at night- worrying about what exciting/dreadful events the night may hold.
Yeah. I'm definitely not Super Mom. I kind of wish I was. I am dirty and stained, ragged and bruised.
"I feel thin, sort of stretched, like butter scraped over too much bread."
-Bilbo Baggins, The Hobbit by J.R.R. Tolkien
I am barely holding it together on my good days. I feel like I've been through Hell and sometimes still visit. I am weak, He is strong.
I lift my eyes to the hills-
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip-
He who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The Lord watches over you-
the Lord is your shade at your right hand;
the sun will not harm you by day;
nor the moon by night.
The Lord will keep you from all harm-
He will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.
Psalm 121 (NIV)
He does not slumber or sleep. He will watch over me. I will lift my eyes. When I lift my eyes, they cannot be on myself or my circumstances. My trouble comes when I fail to lift my eyes. He doesn't always calm the storm, but he will walk beside me on the water through the storm. Sometimes the wind blows so hard that I can't hear Him.
So, to all of you that have said these things to me: thank you. I know you meant it in a complimentary manner. But please, if there is credit to give, give it to Whom it is due. When I fail, it is because of my human-ness. When I succeed- it is only because my Jesus has enabled me. He has filled my weak empty places and glorified my circumstances.
And if any of you still retain any doubts about my humanity, keep following this blog. Because I am the poster child for the fallen mom. I only fail on days that end in "y."
If I had a dollar for every time someone said that to me... we might have been able to cover Sam's Duke bill without insurance. And that amount of that bill would have covered the cost of our house twice, our van, and part of our truck. Yee-ouch. I appreciate the sentiment behind the comment because, if nothing else, it lends value to my effort. But saying, "I couldn't do it," is something that is appropriate to say if you hear me talk about planning to swim the English Channel or do an Ironman triathlon while pushing Sam in my running stroller. Because those are things that I might attempt to do if I were crazy. Or really, really, really fit. But mainly, those are hard things that I would choose to do. Optional hard things that I might attempt because they are challenging. Battling your baby over drinking bottles to keep him alive, pumping all day and all night because you are convinced it is the best thing for your baby's health, giving heparin shots twice a day, giving up virtually all social interaction because of your baby's shattered immune system, dealing with severe chronic reflux- these are not hard things that I chose to do. I did them (and still do them) because I honestly feel that there is no other viable choice. Just like so many other mothers that deal with chronic reflux, or have a child or children with special needs, who have husbands that work crazy hours or deploy, those mothers that stay up all night catching their child's vomit in a bowl, giving tylenol enemas for fever because that poor baby can't keep down liquid meds, mothers who have children with diabetes and require constant monitoring, mothers who have children that can't have gluten or red dye, mother who undergo chemo, mothers that die inside because their adult child is struggling, mothers that mother their children and also mother their parents at the same time- these mothers do hard things. These mothers do not get up in the morning and say, "I am going to do hard things today! Because I am awesome! I am Mother, hear me ROAR!" No. These mothers do things that are hard because there is no other choice. Not really. I do the things I do because I have carefully weighed my options (if there appear to be any) and have determined that there is No. Other. Choice. To all the moms who have said to me, "I couldn't do it." I challenge you- what would you do? I bet you'd do the same thing I did. I bet you'd put yourself aside and give every bit of yourself- and you'd probably do it better than I have.
I don't know how you do it!"
Me either. And if you figure it out, let me know, ok? Just kidding. I know how I do it. I don't. At least, I don't do it by myself. I'm not awesome. I'm not Super Mom. If I ever met Super Mom, I seriously doubt that we would get along. In fact, I might
Yeah. I'm definitely not Super Mom. I kind of wish I was. I am dirty and stained, ragged and bruised.
"I feel thin, sort of stretched, like butter scraped over too much bread."
-Bilbo Baggins, The Hobbit by J.R.R. Tolkien
I am barely holding it together on my good days. I feel like I've been through Hell and sometimes still visit. I am weak, He is strong.
I lift my eyes to the hills-
where does my help come from?
My help comes from the Lord,
the Maker of heaven and earth.
He will not let your foot slip-
He who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The Lord watches over you-
the Lord is your shade at your right hand;
the sun will not harm you by day;
nor the moon by night.
The Lord will keep you from all harm-
He will watch over your life;
the Lord will watch over your coming and going
both now and forevermore.
Psalm 121 (NIV)
He does not slumber or sleep. He will watch over me. I will lift my eyes. When I lift my eyes, they cannot be on myself or my circumstances. My trouble comes when I fail to lift my eyes. He doesn't always calm the storm, but he will walk beside me on the water through the storm. Sometimes the wind blows so hard that I can't hear Him.
So, to all of you that have said these things to me: thank you. I know you meant it in a complimentary manner. But please, if there is credit to give, give it to Whom it is due. When I fail, it is because of my human-ness. When I succeed- it is only because my Jesus has enabled me. He has filled my weak empty places and glorified my circumstances.
And if any of you still retain any doubts about my humanity, keep following this blog. Because I am the poster child for the fallen mom. I only fail on days that end in "y."
Monday, March 11, 2013
me vs hell
I believe that when we die, we will either spend eternity with Jesus in Heaven, or in Hell. I believe that this final destination is not based on how well we perform here on earth, but based on repentance of our sins and acceptance of Jesus' gift of salvation. As a believer in Jesus, my eternity with Him is firmly and permanently settled. Here's something else that I believe- and this is based solely on my personal experience and my interpretation of the book of Job in the Bible- while we are on this earth, Satan will do his best to make it as close to hell as possible in order to draw us away from our eternal hope. Our lives here on earth may not be horrifically awful all the time. But as a Bible believing Christian, I do believe that my life here on earth is as close to hell as I will ever get.
By the time January of 2011 rolled around, Sam's eating habits had deteriorated. Looking back, it's possible that his constant vomiting had so damaged his esophagus that he was manifesting a psychological reaction to the physical trigger: drinking a bottle. I kept count of his wet diapers. I tried everything to get him to drink. I took advice. I tried organic all natural supplements. I tried elimination diets. I tried formulas; they elicited a worse reaction than the breastmilk. I tried putting cereal in his bottles. I tried a myriad of prescription pharmaceuticals- nothing worked. I resorted to force feeding. Squirt a little in his mouth while he screams, wait for him to swallow, repeat. Feeding him a bottle took a solid hour or more. Being a small baby, he still ate about 8 times a day. Doing the math, I was spending a good 8 hours a day trapped with him in his room or on the couch, crying while he screamed at me. This became my hell. My life was a living nightmare. My baby wouldn't eat. And he was hurting. No one could help me. His pediatrician didn't even believe me at first- until Sam started dropping weight. I exhausted every avenue that I could find. We saw pediatric GI doctors, did barium swallow studies, almost moved in to our pediatrician's office, asked everyone I knew that had a baby if they had any ideas. I googled and googled and googled. I read forums about reflux. I couldn't find anyone that was living with our complex bag of symptoms combined with Sam's surgical history and special needs. I was still pumping every three to four hours. I was exhausted. And then the Rage came.
I am Carrie. I am Firestarter. I have tasted madness and it is bitter. I never understood (before this) how anyone could shake a baby. My eyes were opened. It has to be one of the most frustrating things in the world: to try to feed a hungry baby that refuses to eat. My one motivation was Sam's health and keeping him off an IV but he refused to cooperate and JUST EAT. "Just swallow. Please. Just swallow. Please, Sam." I would plead with him and cry and my body would become tense and stiff while I held him and he fought me- rejecting the bottle that was full of health. He would scream and scream and arch his back and become ramrod rigid against me- and I would have to put my screaming baby down on the floor, close the door, and walk away. I had to walk away so that I wouldn't hurt him. I can't even admit it without crying in shame, but it's true. While he screamed on the floor, I would scream in my bedroom so loudly and deeply that I would become hoarse. There are times when it's best to walk away. When the rage consumes your body and you can feel it- like you've been hooked up to an IV filled with a hot liquid and it's coursing through your veins, filling your head with a buzzing, burning anger and tingling out through your fingertips. I felt like a cicada in the midst of shedding season- my outer self becoming hard and brittle and then suddenly splitting down the back to let my inner monster out. I was afraid of myself. I was so angry. For the most part, I was angry at myself. I couldn't escape the feeling that I was failing- that there must be something I was missing or doing wrong. I was incapable, insufficient, and inept. Why had God given me this baby when I was clearly not a fit mother? There are breastmilk stains all over our house; they are on the ceiling of my bedroom because I slammed a bottle down on my dresser so hard that it exploded, spraying milk all over the room. My kitchen utensil drawer is broken because I slammed it repeatedly over and over. There had to be an outlet- and there was none. So I slammed bottles and the occasional drawer and cried so hard I got headaches. The rage would consume me- and then it would drain from my body leaving me feeling limp, drained, empty, and so very unfit for my assignment. And I would go back to my baby, wipe his tears, clean his vomit, and try again. When your baby won't eat, when doctors give up, when well-meaning advice fails, when you are the only one that can succeed in getting your baby to drink enough to barely wet a diaper, when you sleep in 1.5 hour segments on a good night, when you are cracked and bleeding from pumping around the clock and no one understands: this is hard. And Molly needed me. The pressure was intense. I tried to get back into running a little bit. Running is normally a great form of stress relief for me. Just on the treadmill, when I had 15 minutes to spare. I felt guilty taking that much time for myself.
You're in the moment now
When all that you've been blessed with
Is not enough
Here's where the ground gets loose
Here's where the devils call your bluff
Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way.....
We've come through wilderness and watched
The cloud by day
The burning sky into dawn
Have you forgotten who you are?
Did you forget Whose trip you're on?
Get up, there's further to go
Get up, there's more to be done
Get up, this witness is sure
Get up, this race can be won
This race can be won
This race can be won <-----------insert optional fist pump here
We've gotta stay strong
You are not lost
Come on and fix your eyes ahead
Our Father's dawn will light our day
Come on and stay strong
His grip is sure
And His patience still endures
There'll be no letting go today, no way
Excerpts from: Stay Strong by Newsboys from their album, Greatest Hits
I have lost who I am. Where are You, Lord? I've heard there are rocks at the bottom of this pit- why haven't I hit them yet? It's so dark here in my darkness. It's so lonely here. So lonely.
In March, Sam started shaking. First it was just his head, then it progressed to include his whole body. After he ate, he would be consumed with mild seizure-like activity and I would hold him tight while he shook. This deeply concerned me. At a swallow study we did at a local hospital, I was told that this sounded like Sandifer's Syndrome, which is usually brought on by a GI disorder. He was in so much discomfort. I tried slow flow, medium flow and fast flow bottle nipples. I tried Soothie bottles, Tommee Tippee, Playtex Ventaire, Playtex with the bag, Dr. Brown's and Medela. I tried Mylicon drops and Colic Calm. The only thing we didn't try was Reglan. Reglan is known to completely halt motor skill developement and I wanted to avoid afflicting Sam with that side effect if at all possible. He had enough challenges to overcome.
I wanted to die. But I was acutely aware that suicide would be the most selfish decision I could make. It was painfully clear that my baby wouldn't eat for anyone but me, and barely that. I couldn't inflict so much confusion and abandonment on my daughter. This sweet baby that couldn't help his behavior, this sweet baby that was clearly experiencing a lot of unexplained discomfort: this baby had changed my life. I was isolated and surrounded by a dark madness. Eventually there came tiny pinpricks of light. I had a breakthrough of sorts with Sam. He would drink, as long as I fed him while he was sleeping. If I could just get him to sleep, he would drink and drink and I loved it. He drank without screaming, and if I rocked him and held him upright long enough afterwards, sometimes he'd keep it all down. It was a mystery why this worked. I found just a couple of accounts in online forums about babies with severe reflux that sleep-ate. Our pediatrician finally conceded that we had a problem, but only after she tried to feed him herself. He was clearly hungry, but as soon as the liquid touched his mouth, he squirmed away and screamed as if she were offering him hot lava. We began our journey into feeding therapy. We went once a week for four weeks. At the end of four weeks, our very sweet therapist told me that she couldn't help us, that I was already doing more for him at home than she could do for him. "Keep up the good work! Please let us know how he's doing! Good luck!" I sat in my van in the parking lot after that appointment and sobbed my heart out. They gave up on him and they gave up on the prospect of things getting better.
This is IT? This is as good as it's going to get? No answers? I don't have the energy to keep trying...
Running, running, but the darkness is chasing me. I feel it breathing down my neck. Still falling and this hole is bottomless...
Our pediatrician suspected eosinophilic esophagitis. So she prescribed an inhaled steroid, even though we had no proof or a definite diagnosis. I struggled with whether or not to medicate my child with steroids when we weren't sure if they were needed. My baby was not a science project. I decided against the steroids.
We traveled to UNC for another visit with pediatric GI. Another barium swallow study, but this time they did a biopsy of his esophagus to check for eosinophilic esophagitis. We stood in front of Sam and watched the big screen that showed his esophagus. We listened while the doctor showed us that there was nothing physiologically wrong with Sam's esophagus. We heard the doctor say that Sam could have scar tissue that we couldn't see- that it was possible that while his chest was open, his esophagus had been barely touched causing nerve damage, but that there was no way to medically know this for sure. Our best bet would be to switch him from breastmilk to something more elemental, something easier for his body to break down, something to relieve some of the symptoms of his reflux and ease his psychological reaction to eating. When he was 10 months old, I pulled him off the breastmilk and tried nutrition in a can. I tried several over the counter formulas without success. Our pediatrician gave us some samples of a medical grade sterile formula for children with severe eating issues... and I saw a slight improvement. Not much, but enough to warrant switching Sam over to it completely. Now that Sam wasn't drinking breastmilk anymore, I could stop pumping.
Right. And how, exactly, does one go about that?
By the time January of 2011 rolled around, Sam's eating habits had deteriorated. Looking back, it's possible that his constant vomiting had so damaged his esophagus that he was manifesting a psychological reaction to the physical trigger: drinking a bottle. I kept count of his wet diapers. I tried everything to get him to drink. I took advice. I tried organic all natural supplements. I tried elimination diets. I tried formulas; they elicited a worse reaction than the breastmilk. I tried putting cereal in his bottles. I tried a myriad of prescription pharmaceuticals- nothing worked. I resorted to force feeding. Squirt a little in his mouth while he screams, wait for him to swallow, repeat. Feeding him a bottle took a solid hour or more. Being a small baby, he still ate about 8 times a day. Doing the math, I was spending a good 8 hours a day trapped with him in his room or on the couch, crying while he screamed at me. This became my hell. My life was a living nightmare. My baby wouldn't eat. And he was hurting. No one could help me. His pediatrician didn't even believe me at first- until Sam started dropping weight. I exhausted every avenue that I could find. We saw pediatric GI doctors, did barium swallow studies, almost moved in to our pediatrician's office, asked everyone I knew that had a baby if they had any ideas. I googled and googled and googled. I read forums about reflux. I couldn't find anyone that was living with our complex bag of symptoms combined with Sam's surgical history and special needs. I was still pumping every three to four hours. I was exhausted. And then the Rage came.
When your baby looks like this, doctors don't readily believe that he has trouble eating.
I am Carrie. I am Firestarter. I have tasted madness and it is bitter. I never understood (before this) how anyone could shake a baby. My eyes were opened. It has to be one of the most frustrating things in the world: to try to feed a hungry baby that refuses to eat. My one motivation was Sam's health and keeping him off an IV but he refused to cooperate and JUST EAT. "Just swallow. Please. Just swallow. Please, Sam." I would plead with him and cry and my body would become tense and stiff while I held him and he fought me- rejecting the bottle that was full of health. He would scream and scream and arch his back and become ramrod rigid against me- and I would have to put my screaming baby down on the floor, close the door, and walk away. I had to walk away so that I wouldn't hurt him. I can't even admit it without crying in shame, but it's true. While he screamed on the floor, I would scream in my bedroom so loudly and deeply that I would become hoarse. There are times when it's best to walk away. When the rage consumes your body and you can feel it- like you've been hooked up to an IV filled with a hot liquid and it's coursing through your veins, filling your head with a buzzing, burning anger and tingling out through your fingertips. I felt like a cicada in the midst of shedding season- my outer self becoming hard and brittle and then suddenly splitting down the back to let my inner monster out. I was afraid of myself. I was so angry. For the most part, I was angry at myself. I couldn't escape the feeling that I was failing- that there must be something I was missing or doing wrong. I was incapable, insufficient, and inept. Why had God given me this baby when I was clearly not a fit mother? There are breastmilk stains all over our house; they are on the ceiling of my bedroom because I slammed a bottle down on my dresser so hard that it exploded, spraying milk all over the room. My kitchen utensil drawer is broken because I slammed it repeatedly over and over. There had to be an outlet- and there was none. So I slammed bottles and the occasional drawer and cried so hard I got headaches. The rage would consume me- and then it would drain from my body leaving me feeling limp, drained, empty, and so very unfit for my assignment. And I would go back to my baby, wipe his tears, clean his vomit, and try again. When your baby won't eat, when doctors give up, when well-meaning advice fails, when you are the only one that can succeed in getting your baby to drink enough to barely wet a diaper, when you sleep in 1.5 hour segments on a good night, when you are cracked and bleeding from pumping around the clock and no one understands: this is hard. And Molly needed me. The pressure was intense. I tried to get back into running a little bit. Running is normally a great form of stress relief for me. Just on the treadmill, when I had 15 minutes to spare. I felt guilty taking that much time for myself.
You're in the moment now
When all that you've been blessed with
Is not enough
Here's where the ground gets loose
Here's where the devils call your bluff
Stay strong
You are not lost
Come on and fix your eyes ahead
There's a new dawn to light our day
You've gotta stay strong
You and I run
For the prize that lies ahead
We've come too far to lose our way.....
We've come through wilderness and watched
The cloud by day
The burning sky into dawn
Have you forgotten who you are?
Did you forget Whose trip you're on?
Get up, there's further to go
Get up, there's more to be done
Get up, this witness is sure
Get up, this race can be won
This race can be won
This race can be won <-----------insert optional fist pump here
We've gotta stay strong
You are not lost
Come on and fix your eyes ahead
Our Father's dawn will light our day
Come on and stay strong
His grip is sure
And His patience still endures
There'll be no letting go today, no way
Excerpts from: Stay Strong by Newsboys from their album, Greatest Hits
I have lost who I am. Where are You, Lord? I've heard there are rocks at the bottom of this pit- why haven't I hit them yet? It's so dark here in my darkness. It's so lonely here. So lonely.
In March, Sam started shaking. First it was just his head, then it progressed to include his whole body. After he ate, he would be consumed with mild seizure-like activity and I would hold him tight while he shook. This deeply concerned me. At a swallow study we did at a local hospital, I was told that this sounded like Sandifer's Syndrome, which is usually brought on by a GI disorder. He was in so much discomfort. I tried slow flow, medium flow and fast flow bottle nipples. I tried Soothie bottles, Tommee Tippee, Playtex Ventaire, Playtex with the bag, Dr. Brown's and Medela. I tried Mylicon drops and Colic Calm. The only thing we didn't try was Reglan. Reglan is known to completely halt motor skill developement and I wanted to avoid afflicting Sam with that side effect if at all possible. He had enough challenges to overcome.
I wanted to die. But I was acutely aware that suicide would be the most selfish decision I could make. It was painfully clear that my baby wouldn't eat for anyone but me, and barely that. I couldn't inflict so much confusion and abandonment on my daughter. This sweet baby that couldn't help his behavior, this sweet baby that was clearly experiencing a lot of unexplained discomfort: this baby had changed my life. I was isolated and surrounded by a dark madness. Eventually there came tiny pinpricks of light. I had a breakthrough of sorts with Sam. He would drink, as long as I fed him while he was sleeping. If I could just get him to sleep, he would drink and drink and I loved it. He drank without screaming, and if I rocked him and held him upright long enough afterwards, sometimes he'd keep it all down. It was a mystery why this worked. I found just a couple of accounts in online forums about babies with severe reflux that sleep-ate. Our pediatrician finally conceded that we had a problem, but only after she tried to feed him herself. He was clearly hungry, but as soon as the liquid touched his mouth, he squirmed away and screamed as if she were offering him hot lava. We began our journey into feeding therapy. We went once a week for four weeks. At the end of four weeks, our very sweet therapist told me that she couldn't help us, that I was already doing more for him at home than she could do for him. "Keep up the good work! Please let us know how he's doing! Good luck!" I sat in my van in the parking lot after that appointment and sobbed my heart out. They gave up on him and they gave up on the prospect of things getting better.
This is IT? This is as good as it's going to get? No answers? I don't have the energy to keep trying...
Running, running, but the darkness is chasing me. I feel it breathing down my neck. Still falling and this hole is bottomless...
Our pediatrician suspected eosinophilic esophagitis. So she prescribed an inhaled steroid, even though we had no proof or a definite diagnosis. I struggled with whether or not to medicate my child with steroids when we weren't sure if they were needed. My baby was not a science project. I decided against the steroids.
We traveled to UNC for another visit with pediatric GI. Another barium swallow study, but this time they did a biopsy of his esophagus to check for eosinophilic esophagitis. We stood in front of Sam and watched the big screen that showed his esophagus. We listened while the doctor showed us that there was nothing physiologically wrong with Sam's esophagus. We heard the doctor say that Sam could have scar tissue that we couldn't see- that it was possible that while his chest was open, his esophagus had been barely touched causing nerve damage, but that there was no way to medically know this for sure. Our best bet would be to switch him from breastmilk to something more elemental, something easier for his body to break down, something to relieve some of the symptoms of his reflux and ease his psychological reaction to eating. When he was 10 months old, I pulled him off the breastmilk and tried nutrition in a can. I tried several over the counter formulas without success. Our pediatrician gave us some samples of a medical grade sterile formula for children with severe eating issues... and I saw a slight improvement. Not much, but enough to warrant switching Sam over to it completely. Now that Sam wasn't drinking breastmilk anymore, I could stop pumping.
Right. And how, exactly, does one go about that?
i don't remember inviting you here...
So, apparently the Angel of Death followed us home. I thought we left him in the PCICU where he was constantly lurking around every corner. He was under my bed at the Ronald McDonald house and while I was in the hospital. He haunted my dreams and my waking moments. His middle name is "Fear," and I kept him at bay with scripture and prayer.
The very first night we were home, Iconfidently nervously prepared Sam's heparin injection. But wait a minute. Something was wrong with it. I'd given it several times in the step down unit and this didn't look right. The amount was wrong. It said on the bottle, ".1 MG." That can't be right. We were giving what looked like a full 1ML at the hospital. Got it! .1MG must be the same as 1ML. Boy. Good thing I figured THAT out! I almost gave him the wrong amount of heparin! So I proceeded with the injection. In my defense, it was late. I was severly sleep deprived. It was the first time I'd ever given the injection without a nurse looking over my shoulder. And... I'm a complete idiot. So there's that. After I gave the injection, I was suddenly overwhelmed by a sinking feeling of terrror mixed with doubt. I knew that I'd messed up. Since heparin is a blood thinner, I knew that if I had indeed done what I was afraid I'd done, this could be very bad. I called the number that they'd given me when we were discharged- the "just in case of emergency" number. Yeah, I should have called that number to ask that all important clarifying question BEFORE I gave the injection. But you know what? I didn't call it because I was afraid. I was afraid that if I called to ask for clarification about something so obvious as medication dosage, they would think that I wasn't capable of taking care of Sam. In my fogged up brain, I felt the need to prove that I could do this. Because I'm a mother. I should be capable of taking care of my own baby, for goodness sake. This feeling goes by the name of "Pride," and it's a very dangerous bedfellow. The doctor that answered my call verified that I had indeed given my son 10 times the dosage of heparin that his body required. This is what they said to me, "If he starts bleeding from his eyes, nose, or starts having bloody diapers, take him to the emergency room immediately."
I hung up the phone. Where do you go from there? I stood there looking at my baby thinking that at any minute, he could start bleeding from all his orifices. I started thinking about how the military hospital closest to our home was the same hospital that sent Sam to Duke because they couldn't properly care for him. I can't adequately describe the feelings of insufficiency that flooded me. I am not smart enough to do this. I can't do this. This is too much for me. Sam's needs are too great and he's too fragile to be at home in my care. In MY care. Me, the idiot that just gave him 10 times his dose of heparin. Good mothers don't do things like this.
Our first night home wasn't one of peaceful slumber for me. Of course, I had to be up all night to pump and feed Sam anyway, but the fear of Sam's blood leaving his body through his eyes definitely interfered with my getting any restful sleep between my nighttime obligations. I couldn't escape the knowledge: if he dies tonight, it's my fault. The baby that survived open heart surgery and two blood clots and being born six weeks early... I might have just set into motion his termination. Because of my stupidity and arrogance. Joy (almost always) comes in the morning. Sam did live through the night. He did not bleed from his eyes or his nose. His diapers were blessedly wet, but not with blood.
I hope I learned from that experience- that mothers who love deeply still make horrible mistakes- and also that there is grace even when I am stupid. So much grace and mercy. I prayed all night that God would grant my baby another chance. I asked forgiveness for harboring the pride that had held me back from making the call to ask the questions about dosage. At the same time, my doubts in myself began to grow rapidly. Humility is crucial. But I began to feel like my own value as a mother, and as a child of God, was in question. I still deal with this today, at this minute, right at this exact second. How did I end up with these two precious children?
"But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in my weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
2 Corinthians 12:9-10 (NIV, emphasis mine)
Boasting in my weakness, huh? Right. But my weaknesses are embarrassing and really, really.... WEAK. Like weaker than most. My weaknesses lead me to doubt my ability to raise my children and cause me to fear that one day someone will see through my human frailty and say, "OH my goodness- yes, this was a mistake! Those kids weren't really meant for YOU!" I am weak. He is strong. He likes it that way. If I was capable and powerful and awesome and perfect, I wouldn't need His help, would I? The weaker I am, the more I am aware of my need to have Him living in me. Empty me of myself, because I am weak. Fill that empty space with You- then I will be strong, not by my own power, but with the power that doesn't get tired from lack of sleep, or grumpy when I haven't had my coffee. I am going to share my weakness. I am going to put it out there and be vulnerable and that feels dangerous to me. But we are all weak. Our weaknesses may be different, but we are all frail. So, stay tuned for more on weakness. And I'll try not to cringe as I type.
The very first night we were home, I
I hung up the phone. Where do you go from there? I stood there looking at my baby thinking that at any minute, he could start bleeding from all his orifices. I started thinking about how the military hospital closest to our home was the same hospital that sent Sam to Duke because they couldn't properly care for him. I can't adequately describe the feelings of insufficiency that flooded me. I am not smart enough to do this. I can't do this. This is too much for me. Sam's needs are too great and he's too fragile to be at home in my care. In MY care. Me, the idiot that just gave him 10 times his dose of heparin. Good mothers don't do things like this.
Our first night home wasn't one of peaceful slumber for me. Of course, I had to be up all night to pump and feed Sam anyway, but the fear of Sam's blood leaving his body through his eyes definitely interfered with my getting any restful sleep between my nighttime obligations. I couldn't escape the knowledge: if he dies tonight, it's my fault. The baby that survived open heart surgery and two blood clots and being born six weeks early... I might have just set into motion his termination. Because of my stupidity and arrogance. Joy (almost always) comes in the morning. Sam did live through the night. He did not bleed from his eyes or his nose. His diapers were blessedly wet, but not with blood.
I hope I learned from that experience- that mothers who love deeply still make horrible mistakes- and also that there is grace even when I am stupid. So much grace and mercy. I prayed all night that God would grant my baby another chance. I asked forgiveness for harboring the pride that had held me back from making the call to ask the questions about dosage. At the same time, my doubts in myself began to grow rapidly. Humility is crucial. But I began to feel like my own value as a mother, and as a child of God, was in question. I still deal with this today, at this minute, right at this exact second. How did I end up with these two precious children?
"But He said to me, 'My grace is sufficient for you, for My power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for Christ's sake, I delight in my weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
2 Corinthians 12:9-10 (NIV, emphasis mine)
Boasting in my weakness, huh? Right. But my weaknesses are embarrassing and really, really.... WEAK. Like weaker than most. My weaknesses lead me to doubt my ability to raise my children and cause me to fear that one day someone will see through my human frailty and say, "OH my goodness- yes, this was a mistake! Those kids weren't really meant for YOU!" I am weak. He is strong. He likes it that way. If I was capable and powerful and awesome and perfect, I wouldn't need His help, would I? The weaker I am, the more I am aware of my need to have Him living in me. Empty me of myself, because I am weak. Fill that empty space with You- then I will be strong, not by my own power, but with the power that doesn't get tired from lack of sleep, or grumpy when I haven't had my coffee. I am going to share my weakness. I am going to put it out there and be vulnerable and that feels dangerous to me. But we are all weak. Our weaknesses may be different, but we are all frail. So, stay tuned for more on weakness. And I'll try not to cringe as I type.
Sunday, March 10, 2013
baby steps, bob
Only two weeks post surgery, at three weeks of age, Sam was ready to move to the step down unit. This was the week immediately following my release from the hospital. The purpose of the step down unit is to transition the baby to less round the clock care from professional help, while integrating the parents as care givers. Duke said that Sam was ready. I didn't feel ready. I felt like a six year old that had suddenly become a mommy: immature, irresponsible, and definitely not smart enough. I am aware that there is a huge danger in the telling of this story that I will overuse the word, "irony." I apologize in advance. The irony in this particular segment is this: I had just been released from the hospital after being treated for an extremely severe case of mastitis. I was being strongly encouraged to continue pumping because, "He needs the breastmilk. It's so good for him. It's the best thing for him. He may even transition to nurse..." So I kept on keeping on. As it turned out, Sam's body couldn't process the fatty acids in the breastmilk that I was killing myself to pump, so they had to switch him to a thick, chalky, light brown formula that was easier for his system to digest. No breastmilk allowed. While in the step down unit, one of the things that we did was attempt to introduce a bottle. This was a very incremental process. Sam only drank a tiny amount from the bottles; the remainder of his nutritional needs were fulfilled through his epigastric feeding tube. His medications (of which there were many) were also administered through the tube.
We had to learn things in the step down unit. Things that I did not want to learn. Sam had to be given heparin injections twice a day in the subcutaneous fat in his thighs. Finding subcutaneous fat on a baby that weighs less than 7 pounds is no easy trick. He was such a scrawny little thing. We also had to learn to pull and insert his feeding tube, and then check it for placement once it was inserted. That meant sticking a very long, thin tube down the baby's nose and running it down his throat until it reached his stomach. Then you attach an empty medicine syringe and puff a bit of air into the tube while listening with a stethoscope to his tummy. Hear the "Foop" noise? That means it's placed correctly. Word up: babies don't like having feeding tubes stuck up their noses and down their throats. I learned how to operate the feeding pump that would incrementally push formula from a bag into his tube. I was also instructed in how to correctly pick up my baby. Did you know that when a baby has heart surgery, you can't pick them up like a normal baby? If we lifted Sam with our hands under his armpits, it could put too much pressure on his incision and cause severe injury. The step down unit is not the place you want to stay if you value sleep. I was so thankful to be there because it meant Progress with a capital P, but if sleep deprivation was fatal, I'd have died a long time ago. There was a moniter over Sam's bed that sounded an alarm every fifteen minutes- 24 hours a day. My cell phone alarm went off every three hours so I would wake up to pump. And nurses had to come in every three hours to bring Sam's formula so we could start the feeding pump for him to eat. And then there was maintenance staff that came in to empty the trash and clean, rounds with doctors and nurses that came to discuss patient status... it was always something, day and night.
We had to learn things in the step down unit. Things that I did not want to learn. Sam had to be given heparin injections twice a day in the subcutaneous fat in his thighs. Finding subcutaneous fat on a baby that weighs less than 7 pounds is no easy trick. He was such a scrawny little thing. We also had to learn to pull and insert his feeding tube, and then check it for placement once it was inserted. That meant sticking a very long, thin tube down the baby's nose and running it down his throat until it reached his stomach. Then you attach an empty medicine syringe and puff a bit of air into the tube while listening with a stethoscope to his tummy. Hear the "Foop" noise? That means it's placed correctly. Word up: babies don't like having feeding tubes stuck up their noses and down their throats. I learned how to operate the feeding pump that would incrementally push formula from a bag into his tube. I was also instructed in how to correctly pick up my baby. Did you know that when a baby has heart surgery, you can't pick them up like a normal baby? If we lifted Sam with our hands under his armpits, it could put too much pressure on his incision and cause severe injury. The step down unit is not the place you want to stay if you value sleep. I was so thankful to be there because it meant Progress with a capital P, but if sleep deprivation was fatal, I'd have died a long time ago. There was a moniter over Sam's bed that sounded an alarm every fifteen minutes- 24 hours a day. My cell phone alarm went off every three hours so I would wake up to pump. And nurses had to come in every three hours to bring Sam's formula so we could start the feeding pump for him to eat. And then there was maintenance staff that came in to empty the trash and clean, rounds with doctors and nurses that came to discuss patient status... it was always something, day and night.
Sam had a "hat." They moved his IVs to a vein in his head. Honestly, I can't remember why exactly, but I know there were good reasons. They had to periodically take blood from Sam to check his heparin levels and this was a real problem. He was a very hard stick. Getting blood from Sam's tiny little collapsing veins was a battle that was waged long after we left Duke. I dreaded the blood tests. Sam would scream and scream and then I would hear that inevitable prounouncment, "We didn't get enough. We have to stick him again."
So, to restate the obvious, there was a lot for us to learn. I didn't want to learn these things. But just like when I went to the hospital and the nurse said, "You can't leave until you have a baby," the folks at Duke said, "You can't take him home until you learn these things." Well. Since you put it THAT way... sigh. Hand me the syringe. And we learned.
While we were in the step down unit, I learned that due to the high level of antibiotics given me during my bout with mastitis, I had developed a horrible case of thrush. So all that milk that I pumped since being sick: down the drain. (Since Sam wasn't actually drinking it, this didn't affect his diet.) Another thing I subsequently learned is that when you have that particular type of thrush, it's very stubborn and extremely hard to cure. I was given a long list of things to cut from my diet in hopes of eradicating it.
We stayed in the unit for a week. Then they told us it was time to leave. I'm sure I smelled like fear and panic. I was so looking forward to going home and seeing my sweet daughter and sleeping in my own bed... but this baby? I wasn't so sure I could take care of him. I felt like I'd been given a crash course in nursing and that the instructors had definitely overestimated my ability to perform under stress. We'd only been at Duke for a month. He had surgery three weeks ago. He's not ready to go home. Don't these people know how dangerous our home is? Putting him in the car seat was a challenge. There was a constant worry niggling in the back of my brain, "Is he still breathing?" We stopped at my parent's to pick up my daughter and she got to hold him for the very first time.
And then... we were home. Welcome home, Sam. This is your room and your crib and your sister and your house. It was so.... quiet. No beeping monitors, no screen with Sam's vital stats on it. That part was a bit nerve racking because while at Duke, we could easily see exactly what was going on inside Sam's body. Now that we were home, it was all guess work. And now I was home. With a month old baby that is not like other babies- with a 6 year old that desperately needs to catch up on Mommy time- with the responsibility of resuming homeschooling looming over my head- with doctor's appointments to schedule- a bad case of thrush- pumping every three hours- feeding every three hours- a post partum check up for me to schedule (ha, that never happened)- and an overwhelming feeling of being completely overwhelmed. Did I mention that I almost killed my baby the first night we were home? Yeah. True story.
Saturday, March 9, 2013
out of the depths
To be exact, I didn't break. My breastpump broke. My "vintage" loaner pump from the military hospital stopped working at full capacity and I wasn't aware of it until it was too late.
On this day I was able to hold my baby. I felt weird on this day. But things weren't exactly "normal" and I wasn't exactly sure how I was supposed to be feeling. I desperately wanted to hold Sam. But I as I held him, I had trouble keeping my head up and staying awake. Finally, I gave him up and we left the hospital to pick up some dinner and get some rest. As we left the hospital and walked through the main lobby, I felt heavy. So heavy. And cold. I couldn't get warm.
I waited in the van while my husband picked up our dinner. I huddled under a fleece blanket and thought that it sure had gotten colder all of a sudden.
We went back to our crummy little hotel room (we left the Ronald McDonald house because someone with the Army informed us that we'd be given an allowance to stay in a hotel... this information turned out to be wrong, but we'd already given up our place at the RM house... so we found an inexpensive extended stay room close to the hospital) and ate dinner. I pumped and I didn't get very much milk, which was strange. But I was so very tired that I didn't give it much thought. My husband left the room to walk outside and call his parents to update them on Sam's condition. During the short time that he was gone, things went horribly wrong. I started shaking violently- so violently that my jaw locked up. And suddenly I was colder than I've ever been. I tried to call for my husband to come back, but I couldn't make my mouth work. When he did come back in, he half carried me to the van and back to Duke- but this time instead of heading to the fifth floor where Sam was sleeping, we went to the emergency room. I was delirious and terrified. My husband was terrified. He thought I had a staph infection and that I was surely going to die. When they took me back (after making us go through the metal detector about four times- apparently I looked like a terrorist or something, shaking uncontrollably in a wheelchair with my hair exploding all around my face) it was discovered that my fever was over 106 degrees. It's a wonder my brain didn't melt. Although sometimes I wonder if part of it did. That would explain a lot about the way I am now.
I had mastitis. A very bad case of mastitis. The lactation consultant said that in her 25 years of being in the profession, she'd never seen such a bad case. There is a deep irony in the fact that I managed to have a baby unmedicated, and then two weeks later, I was given more medication than I have ever had in my life. So many antibiotics. So much pain medication. So much pain. Because the way to get through mastitis is to keep pumping. I would rather have given birth again without meds than go through that experience. It was horrifying. A never ending cycle of pain, 24 hours a day. And then they told me that they suspected that I had MRSA. They suspected this because they just couldn't believe that my fever and sickness could be from mastitis alone. When the doctor informed me of their suspicions, he also told me that if it was MRSA, I'd be looking at chemical showers and at least 30 days of isolation. Isolation? But my babies need me... I cried... and cried... and cried. (Out of the depths...) And then the doctor said, "You seem depressed. Would you like for me to prescribe you something for depression?" Even in the darkest place, there is still humor. He's fortunate I lacked the strength to punch him in the face. And I am fortunate that I lacked the strength to punch him in the face. Because it's likely that would have changed his snap diagnosis from "depression" to "acute psychosis."
Very few people knew that I was sick. We were afraid that the news would trickle down to my daughter and she didn't need to know. I was in the hospital for six days. Six days of pumping and crying and throwing up from the pain meds and surviving. All the while feeling completely helpless and out of control. Before I got sick, I could only see one of my babies at a time, and now both were out of my reach.
In the weeks prior to my collapse, as I drove back and forth from our home to Durham, picking up bills that needed to be paid, picking up clothes from home for my daughter, I listened to music. One song in particular I listened to- over and over, on repeat. It was always in my head, everytime I left the hospital. When I was sick and couldn't be with my babies, it played in my brain- over and over. I prayed that I could make it my prayer. "Make this true for me, Lord."
The chorus says this:
"Take it all
Cause I can't take it any longer
All I have
I can't make it on my own
Take the first
Take the last
Take the good and take the rest
Here I am
All I have
Take it all"
by Third Day; Take it All- from their album Revelation
Take my babies. They are Yours. They were never mine, really. After all, isn't that why we named our son Samuel? After Samuel in the Bible. His mother desperately wanted him- prayed for him in tears with so much passion that the priest watching thought she was drunk. Her prayer was granted. She had her sweet Samuel. And then: she gave him up. Gave him back to the Lord in a literal way. She took him from her home and left him at the temple to serve with the priests. She gave him up when he was still small and precious and cute- not when he was 12 and starting to get kind of obnoxious and she just needed a break. She gave him up when he was still small enough to carry and cuddle. She held her baby with her hands open. (True story. You can read about it in the book of 1 Samuel, chapter 1. "After he was weaned, she took the boy with her, young as he was..." 1 Samuel 1:24) That became my prayer, "My hands are open. My babies are in my arms, but my hands are open. Take them. They are Yours." It was true before I prayed it, but I needed to open my eyes to the reality of it.
God stripped everything from me. My false sense that I had the ability to control my environment. (Remember Breastfeeding with Comfort and Joy? That book = not so helpful for me after all.) My false sense that I could make my plans and count on my ability to carry them out. My children, my precious children- they are not mine to keep. They are mine on loan- my talents, my treasures. He stripped my health from me. In order to cry to the Lord out of the depths you have to actually descend to the depths.
Throughout that week, while Sam continued to recover from his surgery, I pumped around the clock, slept very little, and watched short videos of Sam that my husband took for me- since I couldn't go see him. The high fever caused me to break out in fever blisters, which effectively banned me from the PCICU until they were healed. I confess, I felt a little like Job, but on a much smaller scale. The lactation consultant visited me frequently, encouraging me to continue pumping because there was still a possibility that Sam would nurse once he recovered and came home. She told me later that she had actually held no hopes that I would recover completely from the mastitis and be able to continue producing milk. She failed to take into account my type A personality and the fact that I had Nothing. Else. To. Do. But pump. The radiant spot during this time was when I was finally released from the hospital and I was able to spend a day with my daughter. We both needed that time, but it was incredibly difficult for both of us when I had to leave to go back to Durham. She never expressed jealously toward Sam and his neediness. She never seemed bitter or resentful, just sad. I hated watching her hurt- but I didn't have a lot of choices available to me. So I left her again and went back to Durham. And we prepared as best we could to survive the step down unit- the big move from the PCICU that would transition Sam from being a hospital baby to being ready to come home.
On this day I was able to hold my baby. I felt weird on this day. But things weren't exactly "normal" and I wasn't exactly sure how I was supposed to be feeling. I desperately wanted to hold Sam. But I as I held him, I had trouble keeping my head up and staying awake. Finally, I gave him up and we left the hospital to pick up some dinner and get some rest. As we left the hospital and walked through the main lobby, I felt heavy. So heavy. And cold. I couldn't get warm.
I waited in the van while my husband picked up our dinner. I huddled under a fleece blanket and thought that it sure had gotten colder all of a sudden.
We went back to our crummy little hotel room (we left the Ronald McDonald house because someone with the Army informed us that we'd be given an allowance to stay in a hotel... this information turned out to be wrong, but we'd already given up our place at the RM house... so we found an inexpensive extended stay room close to the hospital) and ate dinner. I pumped and I didn't get very much milk, which was strange. But I was so very tired that I didn't give it much thought. My husband left the room to walk outside and call his parents to update them on Sam's condition. During the short time that he was gone, things went horribly wrong. I started shaking violently- so violently that my jaw locked up. And suddenly I was colder than I've ever been. I tried to call for my husband to come back, but I couldn't make my mouth work. When he did come back in, he half carried me to the van and back to Duke- but this time instead of heading to the fifth floor where Sam was sleeping, we went to the emergency room. I was delirious and terrified. My husband was terrified. He thought I had a staph infection and that I was surely going to die. When they took me back (after making us go through the metal detector about four times- apparently I looked like a terrorist or something, shaking uncontrollably in a wheelchair with my hair exploding all around my face) it was discovered that my fever was over 106 degrees. It's a wonder my brain didn't melt. Although sometimes I wonder if part of it did. That would explain a lot about the way I am now.
I had mastitis. A very bad case of mastitis. The lactation consultant said that in her 25 years of being in the profession, she'd never seen such a bad case. There is a deep irony in the fact that I managed to have a baby unmedicated, and then two weeks later, I was given more medication than I have ever had in my life. So many antibiotics. So much pain medication. So much pain. Because the way to get through mastitis is to keep pumping. I would rather have given birth again without meds than go through that experience. It was horrifying. A never ending cycle of pain, 24 hours a day. And then they told me that they suspected that I had MRSA. They suspected this because they just couldn't believe that my fever and sickness could be from mastitis alone. When the doctor informed me of their suspicions, he also told me that if it was MRSA, I'd be looking at chemical showers and at least 30 days of isolation. Isolation? But my babies need me... I cried... and cried... and cried. (Out of the depths...) And then the doctor said, "You seem depressed. Would you like for me to prescribe you something for depression?" Even in the darkest place, there is still humor. He's fortunate I lacked the strength to punch him in the face. And I am fortunate that I lacked the strength to punch him in the face. Because it's likely that would have changed his snap diagnosis from "depression" to "acute psychosis."
Very few people knew that I was sick. We were afraid that the news would trickle down to my daughter and she didn't need to know. I was in the hospital for six days. Six days of pumping and crying and throwing up from the pain meds and surviving. All the while feeling completely helpless and out of control. Before I got sick, I could only see one of my babies at a time, and now both were out of my reach.
In the weeks prior to my collapse, as I drove back and forth from our home to Durham, picking up bills that needed to be paid, picking up clothes from home for my daughter, I listened to music. One song in particular I listened to- over and over, on repeat. It was always in my head, everytime I left the hospital. When I was sick and couldn't be with my babies, it played in my brain- over and over. I prayed that I could make it my prayer. "Make this true for me, Lord."
The chorus says this:
"Take it all
Cause I can't take it any longer
All I have
I can't make it on my own
Take the first
Take the last
Take the good and take the rest
Here I am
All I have
Take it all"
by Third Day; Take it All- from their album Revelation
Take my babies. They are Yours. They were never mine, really. After all, isn't that why we named our son Samuel? After Samuel in the Bible. His mother desperately wanted him- prayed for him in tears with so much passion that the priest watching thought she was drunk. Her prayer was granted. She had her sweet Samuel. And then: she gave him up. Gave him back to the Lord in a literal way. She took him from her home and left him at the temple to serve with the priests. She gave him up when he was still small and precious and cute- not when he was 12 and starting to get kind of obnoxious and she just needed a break. She gave him up when he was still small enough to carry and cuddle. She held her baby with her hands open. (True story. You can read about it in the book of 1 Samuel, chapter 1. "After he was weaned, she took the boy with her, young as he was..." 1 Samuel 1:24) That became my prayer, "My hands are open. My babies are in my arms, but my hands are open. Take them. They are Yours." It was true before I prayed it, but I needed to open my eyes to the reality of it.
God stripped everything from me. My false sense that I had the ability to control my environment. (Remember Breastfeeding with Comfort and Joy? That book = not so helpful for me after all.) My false sense that I could make my plans and count on my ability to carry them out. My children, my precious children- they are not mine to keep. They are mine on loan- my talents, my treasures. He stripped my health from me. In order to cry to the Lord out of the depths you have to actually descend to the depths.
Throughout that week, while Sam continued to recover from his surgery, I pumped around the clock, slept very little, and watched short videos of Sam that my husband took for me- since I couldn't go see him. The high fever caused me to break out in fever blisters, which effectively banned me from the PCICU until they were healed. I confess, I felt a little like Job, but on a much smaller scale. The lactation consultant visited me frequently, encouraging me to continue pumping because there was still a possibility that Sam would nurse once he recovered and came home. She told me later that she had actually held no hopes that I would recover completely from the mastitis and be able to continue producing milk. She failed to take into account my type A personality and the fact that I had Nothing. Else. To. Do. But pump. The radiant spot during this time was when I was finally released from the hospital and I was able to spend a day with my daughter. We both needed that time, but it was incredibly difficult for both of us when I had to leave to go back to Durham. She never expressed jealously toward Sam and his neediness. She never seemed bitter or resentful, just sad. I hated watching her hurt- but I didn't have a lot of choices available to me. So I left her again and went back to Durham. And we prepared as best we could to survive the step down unit- the big move from the PCICU that would transition Sam from being a hospital baby to being ready to come home.
Friday, March 8, 2013
flash bang
Everything was all wrong. When I had driven to the hospital the previous day, I parked in one of those parking spaces with a stork sign in front of it. Right up in front of the hospital entrance. Because I was pregnant. Now we were leaving the hospital. And I wasn't pregnant anymore. But the carseat in the backseat was empty. I felt like I needed to alert everyone around me, "No, no, I really DID have baby! That's why I took this special parking space... there WAS a baby, really!" We picked up Subway sandwiches (because that is the breakfast/lunch of choice five hours after you have a baby) and went home to visit with a set of grandparents that had driven four hours to see their new grandbaby. 15 minutes at home spent quickly packing clothing, explaining what little we knew to grandparents, and then taking off for Durham. Surreal.
By the time we got to Duke, they already knew what was wrong with Sam. And it had a name bigger than he was. "Transposition of the greater vessels." That means things in Sam's heart that aren't supposed to be backwards are backwards. In layman's terms. I finally got a chance to really look at my baby. I didn't feel like I had been pregnant just 24 hours ago. Granted, I kind of felt like I'd been run over by a very large truck, but I was on my feet acting like giving birth was just one of the things I'd had to do that day. Pop out a baby: check.
Sam was beautiful. And he had a lot of attachments. Wires, sensors, a heater, and a very important monitor just above his bed that told us everything about his vital signs. I was put in touch with the lactation consultant at Duke who was very kind. She showed me where the "pump room" was and gave me a crash course in using a breastpump. (I will remind you, this was one of the few items I did NOT buy in preparation for this baby. Hello, irony.) "Every three hours, like clockwork. It's very important that you establish a schedule to get your milk supply up. And the baby needs the colostrum." What I heard: "This is the one thing that you can do. Do it well. You can't help your baby. But you can pray. And pump like a maniac." They asked us at the hospital, "Do you have a place to stay?" Ummmm.... No? Because we didn't plan on this. And we don't live in Durham. And my husband is military. And we are not millionaires. They told us we could stay in a random waiting room at the hospital. When we checked it out, we discovered that I'd be sleeping in a plastic recliner that didn't recline all the way. I was pretty sure that this did not qualify as sufficient post-partum care. So we drove to my parent's house, where my daughter was staying. The next week went by- and it's mostly a hazy blur to me now. I religiously pumped every three hours, around the clock. Sam had to have surgery to relieve a bloodclot in his thigh and again for one in his neck. He had jaundice. We were fortunate to aquire a room at the Ronald McDonald house. That's a whole story by itself. I am very grateful for the Ronald McDonald house- but it was truly like being in college again. The worst college EVER. The room was very small, with two tiny twin beds (hanky panky is not encouraged at the RM house) that had 20 year old sleep number mattresses on them. There was one bathroom for all the rooms on the floor, and most of the other people staying there seemed to sleep all day and then spend the entire night smoking and talking loudly right outside our window. This made getting any rest nearly impossible. But it was virtually free. And we were a five minute drive from the PCICU. Who needs sleep, anyway?
I spent a lot of time pumping and on the road. And a lot time I spent just standing and watching my baby breathe and touching his feet, his head, his hands. He slept all the time out of necessity. He was sedated and very heavily medicated. We still hadn't heard Sam cry- that wouldn't happen until after his surgery when they finally removed the tube from his throat. My husband was back and forth between Bragg and Durham, taking care of things at work and doing what needed to be done.
One week after Sam's birth, we sat down with the surgeon to discuss the big one. The open heart surgery. Where they would put Sam on a heart-lung machine. They would stop his heart and restart it with the machine. They would kill him and then make him alive again. We discussed risks. The biggest risk, of course, being death. But if they didn't do the surgery, death was a guarantee. I learned what it means to disassociate. When you sit in a tiny consulting room with a microwave and a Keurig and a surgeon and he tells you that your baby quite possibly might not survive the surgery- but that if they don't do the surgery, he will certainly die. Risks. What to expect from recovery. All the things that could go wrong. So many. And when he laid the papers on the table next to the Oprah magazines left for our reading pleasure, we signed them. Because there really wasn't any choice. So we signed, and we disassociated. Because meetings with surgeons don't go well if you're hysterical through the whole thing. And then the day came. It was so long. It took longer than they said it would and we sat and waited... and I pumped... and we waited... and I pumped. Hours and hours and hours. Different people wearing masks and colorful Danskos came and checked on us periodically and gave us updates that didn't really tell us anything. And then he was out of surgery. He made it through the surgery! But he was not out of the woods. He was on a pacemaker and there was still a long list of things that could go wrong. So we waited some more. We waited and slept a little and I pumped and we ate a little and we waited. I prayed, but not much. Praying opens up emotional gates for me and I couldn't do that. If I had spent that time in prayer, that's all I would have been capable of. I would not have eaten or pumped or stayed on my feet. I would have been a praying, crying, hysterical mess. But other people were praying. Hundreds of people that knew us and even people that didn't know us were holding us up in prayer. Literally holding us up- because I would have fallen without it. I believe sometimes you reach a place where you cannot pray beyond, "Do Your will." And then you wait.
We were told that post surgery Sam would likely have a lot of fluid retention and also that they would be unable to close his chest for several days. This is apparently common practice; it safely allows the swelling to go down and the fluid to pass through the system. When we went to see him following the surgery, I had my first failure moment. I looked at him... and listened to the surgeon talking... and I had to walk away. Because if I didn't walk away, it was quite possible that I would fall on top of him. That lightheaded feeling and the buzzing in my head came on fast and furious and I had to get out of there.
Over the next 36 hours, his head swelled as he retained fluid. He didn't look alive. He looked like a grossly out of proportion doll with an inflated head and neck, tubes in his body, wires attached, and a bag to collect urine. We valued every ML of urine that passed through his body because that meant that fluid was draining. I stood next to his tiny incubator bed and stroked his swollen head. And pumped every three hours. We were fortunate to aquire a loaner hospital grade pump from the military hospital at Bragg, so I wasn't tied to Duke's pumping room. We could leave and pick up food from somewhere other than the Duke cafeteria. Because sometimes we needed to breathe fresh air. I took photos of Sam before his surgery. He still looked like a normal sweet baby then- plus wires, tubes, and jaundice glasses. I did not take photos of him post surgery until the swelling went down. Some things do not need to be photographed. Those images are permanently imprinted on my brain. The nurses were kind enough to cover his open incision with a paper towel when we came to see him. Under that paper towel, his heart was exposed, pumping blood with the help of a pacemaker. The only thing between his heart and the air in the PCICU was a thin layer of what appeared to be Saran Wrap. Once I got there before they covered his incision and I don't think I'll ever forget what it was like to see my child's heart beating. It was realer than real. And while Sam's heart was being repaired- opened up and dissected and put back together- mine was broken. My heart was torn completely in half. My sweet Molly was with my parents, my new baby son was at Duke, and I couldn't be in both places at once. Being 100% for both children was physically impossible. I had never been away from Molly for so long. It was incredibly difficult, both for her and for me. She stopped talking to me on the phone. It was too hard. We didn't know how long this ordeal would last or how long it would be before we could be together as a family again. We brought her to see Sam once, but the PCICU is no place for a healthy child. The PCICU is full of hope, life and death. Sometimes the baby that we saw in the bed next to Sam wasn't there the following day. Sadness and mourning. And sometimes it felt unfair to pray and hope that Sam would be ok when so many around him were not ok. It was draining, both emotionally and physically. Eventually it took its toll- and I broke.
"Out of the depths I cry to You, O Lord..."
Psalm 130:1 (NIV)
By the time we got to Duke, they already knew what was wrong with Sam. And it had a name bigger than he was. "Transposition of the greater vessels." That means things in Sam's heart that aren't supposed to be backwards are backwards. In layman's terms. I finally got a chance to really look at my baby. I didn't feel like I had been pregnant just 24 hours ago. Granted, I kind of felt like I'd been run over by a very large truck, but I was on my feet acting like giving birth was just one of the things I'd had to do that day. Pop out a baby: check.
Sam was beautiful. And he had a lot of attachments. Wires, sensors, a heater, and a very important monitor just above his bed that told us everything about his vital signs. I was put in touch with the lactation consultant at Duke who was very kind. She showed me where the "pump room" was and gave me a crash course in using a breastpump. (I will remind you, this was one of the few items I did NOT buy in preparation for this baby. Hello, irony.) "Every three hours, like clockwork. It's very important that you establish a schedule to get your milk supply up. And the baby needs the colostrum." What I heard: "This is the one thing that you can do. Do it well. You can't help your baby. But you can pray. And pump like a maniac." They asked us at the hospital, "Do you have a place to stay?" Ummmm.... No? Because we didn't plan on this. And we don't live in Durham. And my husband is military. And we are not millionaires. They told us we could stay in a random waiting room at the hospital. When we checked it out, we discovered that I'd be sleeping in a plastic recliner that didn't recline all the way. I was pretty sure that this did not qualify as sufficient post-partum care. So we drove to my parent's house, where my daughter was staying. The next week went by- and it's mostly a hazy blur to me now. I religiously pumped every three hours, around the clock. Sam had to have surgery to relieve a bloodclot in his thigh and again for one in his neck. He had jaundice. We were fortunate to aquire a room at the Ronald McDonald house. That's a whole story by itself. I am very grateful for the Ronald McDonald house- but it was truly like being in college again. The worst college EVER. The room was very small, with two tiny twin beds (hanky panky is not encouraged at the RM house) that had 20 year old sleep number mattresses on them. There was one bathroom for all the rooms on the floor, and most of the other people staying there seemed to sleep all day and then spend the entire night smoking and talking loudly right outside our window. This made getting any rest nearly impossible. But it was virtually free. And we were a five minute drive from the PCICU. Who needs sleep, anyway?
I spent a lot of time pumping and on the road. And a lot time I spent just standing and watching my baby breathe and touching his feet, his head, his hands. He slept all the time out of necessity. He was sedated and very heavily medicated. We still hadn't heard Sam cry- that wouldn't happen until after his surgery when they finally removed the tube from his throat. My husband was back and forth between Bragg and Durham, taking care of things at work and doing what needed to be done.
One week after Sam's birth, we sat down with the surgeon to discuss the big one. The open heart surgery. Where they would put Sam on a heart-lung machine. They would stop his heart and restart it with the machine. They would kill him and then make him alive again. We discussed risks. The biggest risk, of course, being death. But if they didn't do the surgery, death was a guarantee. I learned what it means to disassociate. When you sit in a tiny consulting room with a microwave and a Keurig and a surgeon and he tells you that your baby quite possibly might not survive the surgery- but that if they don't do the surgery, he will certainly die. Risks. What to expect from recovery. All the things that could go wrong. So many. And when he laid the papers on the table next to the Oprah magazines left for our reading pleasure, we signed them. Because there really wasn't any choice. So we signed, and we disassociated. Because meetings with surgeons don't go well if you're hysterical through the whole thing. And then the day came. It was so long. It took longer than they said it would and we sat and waited... and I pumped... and we waited... and I pumped. Hours and hours and hours. Different people wearing masks and colorful Danskos came and checked on us periodically and gave us updates that didn't really tell us anything. And then he was out of surgery. He made it through the surgery! But he was not out of the woods. He was on a pacemaker and there was still a long list of things that could go wrong. So we waited some more. We waited and slept a little and I pumped and we ate a little and we waited. I prayed, but not much. Praying opens up emotional gates for me and I couldn't do that. If I had spent that time in prayer, that's all I would have been capable of. I would not have eaten or pumped or stayed on my feet. I would have been a praying, crying, hysterical mess. But other people were praying. Hundreds of people that knew us and even people that didn't know us were holding us up in prayer. Literally holding us up- because I would have fallen without it. I believe sometimes you reach a place where you cannot pray beyond, "Do Your will." And then you wait.
We were told that post surgery Sam would likely have a lot of fluid retention and also that they would be unable to close his chest for several days. This is apparently common practice; it safely allows the swelling to go down and the fluid to pass through the system. When we went to see him following the surgery, I had my first failure moment. I looked at him... and listened to the surgeon talking... and I had to walk away. Because if I didn't walk away, it was quite possible that I would fall on top of him. That lightheaded feeling and the buzzing in my head came on fast and furious and I had to get out of there.
Over the next 36 hours, his head swelled as he retained fluid. He didn't look alive. He looked like a grossly out of proportion doll with an inflated head and neck, tubes in his body, wires attached, and a bag to collect urine. We valued every ML of urine that passed through his body because that meant that fluid was draining. I stood next to his tiny incubator bed and stroked his swollen head. And pumped every three hours. We were fortunate to aquire a loaner hospital grade pump from the military hospital at Bragg, so I wasn't tied to Duke's pumping room. We could leave and pick up food from somewhere other than the Duke cafeteria. Because sometimes we needed to breathe fresh air. I took photos of Sam before his surgery. He still looked like a normal sweet baby then- plus wires, tubes, and jaundice glasses. I did not take photos of him post surgery until the swelling went down. Some things do not need to be photographed. Those images are permanently imprinted on my brain. The nurses were kind enough to cover his open incision with a paper towel when we came to see him. Under that paper towel, his heart was exposed, pumping blood with the help of a pacemaker. The only thing between his heart and the air in the PCICU was a thin layer of what appeared to be Saran Wrap. Once I got there before they covered his incision and I don't think I'll ever forget what it was like to see my child's heart beating. It was realer than real. And while Sam's heart was being repaired- opened up and dissected and put back together- mine was broken. My heart was torn completely in half. My sweet Molly was with my parents, my new baby son was at Duke, and I couldn't be in both places at once. Being 100% for both children was physically impossible. I had never been away from Molly for so long. It was incredibly difficult, both for her and for me. She stopped talking to me on the phone. It was too hard. We didn't know how long this ordeal would last or how long it would be before we could be together as a family again. We brought her to see Sam once, but the PCICU is no place for a healthy child. The PCICU is full of hope, life and death. Sometimes the baby that we saw in the bed next to Sam wasn't there the following day. Sadness and mourning. And sometimes it felt unfair to pray and hope that Sam would be ok when so many around him were not ok. It was draining, both emotionally and physically. Eventually it took its toll- and I broke.
"Out of the depths I cry to You, O Lord..."
Psalm 130:1 (NIV)
Wednesday, March 6, 2013
Naming a blog
Naming a blog is nasty business. Especially when one is not quite certain of what one's overall point is. I really thought that "Beautiful Disaster" had a nice ring to it. But
1. That title was already taken.
2. I kept humming the chorus to that old 311 song... and it's not quotable or applicable to my life.
So- desperately Joyful it will be. Because I do feel desperate most of the time. And I am constantly chasing Joy. All the while feeling that it's just beyond my reach and that it must be easier for everyone else.
Keeping up with this is bound to be tricky. Because I do all my best writing on the treadmill. In my head. Where it's impossible to actually type or take notes. When I'm running in place, going nowhere fast, I come up with the most genius works of literature. But usually by the time I get off the treadmill, people are screaming at me and all the genius falls right out of my head and gets stomped by daily activity. (Ok, usually just one person is screaming. And he's two. So I guess that's allowed.)
Why a blog? Honestly, one of the last things the world needs is another blog. Yet another person posting random ramblings on the interweb: Blech. So... why be so self contradictory and do it anyway? The basic no-frills answer is because I am lonely. And I believe that a lot of other people are, too. And it really takes the edge off of loneliness when you realize that you are not alone in your loneliness. (Say that five times fast.) My life has become flooded with technology. Twitter, Facebook, email... I could drown. And I don't even buy into the time suck that is Pinterest. As my life has become more and more technological, my actual flesh and blood interaction with real people has diminished. Part of this is due to the advent of the wonder named Sam- who came into our lives like a flash bang grenade. Due to his many idiosyncrasies, we have become somewhat socially isolated. More on that another time. I find it interesting and sad that while I keep up with over 100 people on Facebook, I still lack interpersonal communication. I don't have the answer to this debacle. At this point, unplugging would effectively eliminate the thin ties to the outside world that we are currently maintaining. Would that really be so bad? I dunno. See, I really don't have all the answers.
To sum up: I have no idea what I'm doing. I'm not very good at keeping on topic, so good luck making sense of what I write.
I can promise you that I will never refer to you as, "beloved," because I am not an apostle or Jesus. This is not that kind of blog. I will not attempt to motivate or inspire you with cliche-y statements about "believing and achieving." I am who I am: born into sin, saved by grace, striving daily to remember it and live it. Seeking joy passionately when I can muster the energy. And when my energy is gone- I will try to find the pockets of joy that are hidden in the ugly places of life.
My hope is this: that the sharing of my struggles through my loneliness, my darkness, and my difficulties will somehow shine some light into someone else's loneliness, darkness and difficulties.
"Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."
Ecclesiastes 4:12 (NIV)
1. That title was already taken.
2. I kept humming the chorus to that old 311 song... and it's not quotable or applicable to my life.
So- desperately Joyful it will be. Because I do feel desperate most of the time. And I am constantly chasing Joy. All the while feeling that it's just beyond my reach and that it must be easier for everyone else.
Keeping up with this is bound to be tricky. Because I do all my best writing on the treadmill. In my head. Where it's impossible to actually type or take notes. When I'm running in place, going nowhere fast, I come up with the most genius works of literature. But usually by the time I get off the treadmill, people are screaming at me and all the genius falls right out of my head and gets stomped by daily activity. (Ok, usually just one person is screaming. And he's two. So I guess that's allowed.)
Why a blog? Honestly, one of the last things the world needs is another blog. Yet another person posting random ramblings on the interweb: Blech. So... why be so self contradictory and do it anyway? The basic no-frills answer is because I am lonely. And I believe that a lot of other people are, too. And it really takes the edge off of loneliness when you realize that you are not alone in your loneliness. (Say that five times fast.) My life has become flooded with technology. Twitter, Facebook, email... I could drown. And I don't even buy into the time suck that is Pinterest. As my life has become more and more technological, my actual flesh and blood interaction with real people has diminished. Part of this is due to the advent of the wonder named Sam- who came into our lives like a flash bang grenade. Due to his many idiosyncrasies, we have become somewhat socially isolated. More on that another time. I find it interesting and sad that while I keep up with over 100 people on Facebook, I still lack interpersonal communication. I don't have the answer to this debacle. At this point, unplugging would effectively eliminate the thin ties to the outside world that we are currently maintaining. Would that really be so bad? I dunno. See, I really don't have all the answers.
To sum up: I have no idea what I'm doing. I'm not very good at keeping on topic, so good luck making sense of what I write.
I can promise you that I will never refer to you as, "beloved," because I am not an apostle or Jesus. This is not that kind of blog. I will not attempt to motivate or inspire you with cliche-y statements about "believing and achieving." I am who I am: born into sin, saved by grace, striving daily to remember it and live it. Seeking joy passionately when I can muster the energy. And when my energy is gone- I will try to find the pockets of joy that are hidden in the ugly places of life.
My hope is this: that the sharing of my struggles through my loneliness, my darkness, and my difficulties will somehow shine some light into someone else's loneliness, darkness and difficulties.
"Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken."
Ecclesiastes 4:12 (NIV)
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