terrifictrauma

[terrifictrauma]

Breast Pumps, Tennis Shoes, and Mountains

I wheeled myself back down the annoyingly colorful hallway to my torturous hospital room.  Luke rode with Naomi to the Children’s hospital, so I was alone.  I tried choking down my tears, and thought to myself that I needed to do something productive.  So, I got out the breast pump.  The “old ball and chain” as most NICU mamas would call it.  I tried to relax, in hopes that I could pump more than the two mils I had the night before.  I couldn’t help but to think back to Naomi’s bedroom.  In it sat the rocker I had planned to nurse her from on our long newborn nights.  I tried to feel her on my chest.  I wanted to feel her warm skin and stroke her beautiful eyelashes.  I imagined her little feet wrapped around my torso as I held her close.  Breastfeeding is the gateway to the closest emotional bond I’ve ever felt.  It’s beautifully exhausting; tirelessly connecting.  It’s an act that is life-giving, life-engaging, and life-altering.  I craved it so much.  I don’t know if it was my motherly instinct; ages of mammal evolution igniting my propensity.  It is a spiritual connectedness that I would describe as the next closest thing to carrying a baby in the womb.  Then, I wanted to smell her unique smell, and I couldn’t.  I didn’t know what she smelled like or felt like in my arms..so close.  

I bawled.

I cried the deepest and most grievous cry of my life.  My milk sure wouldn’t let down, but months of consternation did.  There alone on a hospital bed, I begged to God to not let that be my final goodbye.  I couldn’t bear the thought of a goodbye wrapped in a hello.  My face and neck were hot.  My body hurt in every cell.  I prayed and prayed for an alternate ending to what was predicted by the professionals now appointed with caring for my little girl.  I prayed for their hearts and minds to be positive with an optimistic outcome.  I imagined the mountains outside my window, with a sunrise so breathtaking that everyone stopped their run-around lives to look at.  I saw roses, a stream, and a unpaved road leading through the clearing up into the peaks all surrounded by the sun.  The light would be warm and joyful.  I thought of how it feels when you are camping and you wake up in your tent and look into the tree shadows and feel the heat that would no longer let you sleep, but the calm around you was just as tranquil as a night’s rest.

I truly believed my imagination was being guided by the divine and I relaxed some. This was a part of my story where I “felt the prayers of everyone.”  I wanted to telepathically send that image into the minds of the doctors and nurses.  I wanted them to feel the opportunity that sunrise could give....each and every day they cared for Naomi.  I put the pump away, and in walked my hero.

She was a petite Chinese woman with an exuberant amount of energy.  You could tell she loved her job and adored babies more than anything.  She bounced and flitted around doing the smallest tasks with great joy.  My blood sugar test was remarkably an enjoyable experience that morning, despite it all.  She had short brown hair and the cutest gap in her teeth.  Her tennis shoes were worn from what I assumed miles and miles of caring for new mothers and babies.  As she jabbed the needle into my finger, she asked me if my visit with my baby went well.  I tried to meet her question with the same positivity she glistened with, but I just couldn’t.  As my blood dripped onto the test strip,  I told her Naomi was to die within hours to days and I would be there, recovering from a dang C-section that I didn’t want in the first place.  My family hadn’t arrived yet, as it was just after shift change and early in the morning.  I couldn’t go anywhere or talk with anyone, but her, so she got to hear everything on my heart. She listened as I blubbered on and on about the misfortunate events. She handed me a rough pink hospital robe with inspirational words all in Spanish and I put it on as she checked my incision.   I mentioned how they took Naomi earlier than they were supposed to, and I was angry but mostly afraid.  

I must’ve stated my case so well, or looked so desperate for help, that she sprung into action.  She left the room after saying, “Naomi is not going to die, and you are not going to be away from her.”  She was more beautiful to me than the sunrise I just imagined.  I had a faltering hope and my love for humanity was restored.  She spoke with her boss, and their boss, and their boss. 

 She performed a miracle. 

 I had a hospital administrator call me and say I had to be ambulanced over the the Children’s hospital for my c-section recovery.  I was speechless.  My brothers and mother arrived shortly after.  The nurse sprung into the room with the most elated smile and started barking orders at them.  They were told to pack all of my belongings, because I was leaving.  I was headed back to the hospital room I was flown to months before.  I watched as they moved rapidly.  My lunch arrived and I no more got a few bites in and the ambulance team arrived. I was being transferred. The nurse then said, “you better visit me with that baby someday.”  

I was the only woman in the history of both hospitals to be re-admitted to the children’s hospital after being transferred to the “adult hospital” for a birth.

I may not be able to spell her name, but that nurse was my sunrise that day.  She moved mountains for me and I’m forever grateful.  Her positivity and zest for kindness sparked the same in me.  I would not be the woman I needed to be for Naomi without her.  I was about to learn, that I too could move mountains. Or at the very least, I could travel the dirt road into the sunrise, and even stop and smell the roses along the way.

I still have that hideous pink robe, and I plan to visit my hero someday.

#naomistrong icanmovemountains miracle thankful breastfeeding arpkd

[terrifictrauma]

Stripped of goodbye

Soon after the surgical room emptied, I was sent into the recovery room.  Luke asked me if I wanted him to come to the dark room, walled with sheets.  I told him to stay with Naomi.  I didn’t want her to die without one of us there.  To this day, I do not know what they did to her in those long hours.  I sat in my new bed as my thoughts raced.  Fear spasms would come and go.  I yearned to hold her to my chest and kiss her.  I wanted to feel as close to her on the outside as she was to me on the inside.  After a while, my mom came to sit with me.  

She was such a welcome presence at that time.  She seemed peaceful; not panicked.  She projected calm and security, which is exactly what I needed.  Most of my thoughts were on my daughter and her well-being, but I couldn’t help but to think what my mother was like after she had her four children.  Did she snuggle and kiss them?  Did she cry after their births?  Did she look at me with relief and say, “Welcome to the world, beautiful girl?”  Did my siblings and I go to her breast?  Did we whimper?  Were we calm, or did we cry for the warmth we had just left?  I was thankful for her and that her babies weren’t swept away.  I had gratitude for all four of us being healthy.  I couldn’t imagine anyone else going through what I was enveloped in at that time.  Then, I was proud of her.  I was so proud of her.  Her baby was experiencing the hardest thing she had ever witnessed, and yet she was so firmly relaxed.  I rested.   

As I prayed for Naomi’s guardian angel to use all her power to protect her in every breath, my mind wondered.  I thought that her guardian angel must be visible to her.  Maybe they played together in my womb.  Perhaps they were the best of friends.  I hoped for that, just as much as I hoped they could communicate.  That thought soothed my mind.  Even if no one could physically hold her, maybe the angel was...or Jesus...maybe the arms of Mary.  

I kept asking for status updates.  My mother-in-law brought Mia to me briefly.  She was doing a great job at keeping her entertained as her baby sister came.  I appreciated her more than I ever had.  She too was calm and collected, and I think that helped Mia too.  Mia is a very empathetic soul and can read chaos easily.  She had seen enough of it with me to know when I was off.  Yet, she was enjoying herself and was excited to meet her.  She couldn’t though.  Siblings weren’t allowed, due to respiratory virus season.  I hope that wasn’t hard on her in hindsight.  

When I was flown to Denver, months before, my friend found a priest for us.  I insisted Naomi Grace be baptized, and I was going to do everything in my power to make that happen.  Since she wasn’t born that volatile night, it obviously didn’t happen.  I had his number though, and he was notified of the birthday.  I’ve since seen pictures and disjointed video of her baptism.  It occurred as I lay in recovery.  Godparents weren’t present.  There was no white gown, no family pictures, no cake, and no celebration.  It was a solemn baptism and blessing.  I don’t even know the name of the priest.  Luke and I were going to soon become accustomed to celebrations and holidays in the hospital.

I became very anxious.  I got pushy.  I insisted on getting out of recovery to see my baby.  I was growing in anger because my body hurt so bad.  Because of my “cardiac issue,” I wasn’t given the same type/amount of medication for my surgery.  I found out days later from Luke that I wasn’t given much of anything for pain.  My adrenaline was pushing me through though.  I told the recovery nurse I would get up and walk if they didn’t wheel me to her.  I begged to make it go faster.  I did NOT want Naomi to die without seeing my face, and I hers.

I was rolled down a long oddly colorful hallway and buzzed into the NICU.  I rode past pods of babies and families, only separated by small walls or curtains.  There were tiny babies everywhere.  I recall the faces of the parents.  Most of them sat next to the cribs.  They looked worn and tattered by the clock.  Many also looked frightened and concerned.  Some of them would half smile at me as I rolled by, and I felt as though I had just been inducted into a sorority.  The birth was the rush, and the NICU was the initiation.

At the end of the cubicles, I saw Luke standing over the crib.  I looked at his face, hoping to see relaxed features.  I was reading his expression hard in order to gauge the situation and prepare myself.  As I got closer, I almost didn’t want to actually see her.  Would she be purple?  Was she bloody?  Did they have lines and cords all over her?  I was scared because I didn’t want to be shocked.  I felt a hand on my shoulder, but no one was there, and I knew her guardian angel was.  I couldn’t stand but I could see through her clear crib box. 

She had her father’s eyes and hair color.  She was so small, but much bigger than the other babies I had just wheeled past.  Her little tummy was round like a beach ball.  I knew that must be her kidneys, and a nurse assured me it was. Autosomal recessive polycystic kidney disease is a disorder causing enlarged and cystic kidneys.  That is only the first symptom.  It also causes high blood pressure, cardiac issues, liver issues, etc. There was so much to learn about this genetic disease, besides the fact that the kidneys didn’t work.  Naomi’s case was so profound that her kidneys had no function.  She would never make urine.  She had hyper-flexibility because she had no fluid in the womb, and she was swollen everywhere for the same reason.  

They let me hold her for only a minute or so, because she had a bipap machine on to help her breathe.  The nurse had to assist, and I felt violated.  That was my daughter and I wanted to really hold her close and tight.  I needed it, and I felt she needed it, but it wasn’t allowed.  So, I stared at her through her clear box.  A few hours had passed and she was alive, and I thanked her guardian angel and God in those hours that I was allowed to gaze at her.  It seemed as though time had stopped.  People walked by, and I wasn’t phased by the intrusion of that sacred space.  Doctors and nurses would come and go and my gaze never waivered.  All the grandparents visited, and asked their questions, but I don’t think I answered any.  My eyes were on her eyes.  I traced the top of her fuzzy head down to her very tiny feet and toes.  I memorized every birth mark and observed every motion she made.  I began to tell what she needed and when she was uncomfortable.  I knew she wanted closeness, and I begged God to cradle her and for her to not know the difference between his arms and mine.  She began to condition me, as a baby does with their mother.  I was sad, yes.  I was terribly sad, because I thought she was suffering.  Looking back, it was my suffering that was moving me.   

They made me go back to my room because I needed to pump, pee, and rest.  Luke pushed me to my new bed, even though I fought tooth and nail to make it back down to her baby cubby.  I couldn’t go by myself though and my new nurse insisted I pee.  I was annoyed.  The strong and unwavering father of my child of course fell asleep on the couch, and I was sentenced to the bathroom.  I drank and drank in the hopes that would get me back to the room faster.  The night became the early morning and it still hadn’t happened.  The nurse put me in the shower room with running water, and still nothing.  I was in pain by then, but nothing was working.  Eventually she had to put a catheter in and the pain was unfathomable.  I screamed and writhed in pain as I threw a pillow at Luke trying to wake him to comfort me.  It was despicable really, but I had so much emotional baggage I was desperate for solace.  How could I be upset about peeing, when Naomi never would? 

I finally slept.  Luke went down to see Naomi in the morning as I waited for my mandatory breakfast.  Dang type one diabetes.  He rushed back.  I had been dreading this moment since before she was born.  She had to be sent to the Children’s hospital, and I had to stay for a few days post surgery. I knew they were going to take her, and I knew I wasn’t going to be able to go with her.  They assured me she wasn’t going to go until the afternoon, but the ambulance crew had already arrived.  What?  I had barely any time with her?! They lied to me.  Remember the nephrologist said she would live a few hours, maybe days.  I did that math.  I knew she would probably die across the street as I lay by myself in the “adult hospital.”  I demanded Luke take me to her.  Maybe I could get one more minute with her sort of in my arms.  She was already strapped in her transport bed when we arrived.

The cubicle was full of people.  Everyone was getting updates and everyone was busy.  The focus was on Naomi and getting her to the higher level NICU as quickly as possible.  I sat in my wheelchair helpless once again.  I rushingly and awkwardly said “goodbye.”  It wasn’t intimate at all.  It was not how I imagined telling her I loved her for the last time.  I felt stripped of my motherly worth.  I was robbed of that special moment...that last moment. I tried to talk the staff out of taking her so soon, but it wasn’t about me. None of it was about me, and I understood that.    

Luke left with her.  I didn’t give him a choice.  She would die with one of us.  

#c-section arpkd naomistrong faith

[terrifictrauma]

Happy Birthday

I opened my eyes and the room was emptying.  I wasn’t allowed to hold my phoenix, but I was told she was doing okay.  She was breathing on her own, which was something they said she wouldn’t be able to do, due to her underdeveloped lungs and the fact that she had to one pound kidneys in her belly.  They were so large and cystic that they pushed up on her lungs in her newborn body.  I remembered what day it was, and thought about my stay in the hospital and how it was close to an end.  

Remember that before she was born, I was admitted into the “adult hospital” for my cardiac mumbo jumbo.  At least that’s how I felt about it.  I had also contracted mono somehow, which can also throw off heart troponin levels.  I think I said triglycerides before…yeah it was troponin.  I can’t even remember the issue.  That’s how obviously important it was to me at the time.  I had one focus, and that was to keep her in my body as long as possible so I could enjoy her being, well…alive.  

During my “staycation” in the high risk maternity unit, I met a few unique ladies.  I wanted to stay in my room by myself most of the time, but a volunteer named Mary convinced me to go to “group time.”  Mary was about five feet tall, gray haired, and gifted with patience.  She led a sewing and craft group for all the other glamorous vacation..I mean imprisoned, mamas.  We got to choose from a menagerie of recreational craft projects.  I already knew how to crochet, so I stuck with something comfortable.  I didn’t really want to talk to anyone about “why I was in,” so I listened at first. 

 Rynn was the most loquacious of the bunch and had no problem sharing her story.  Her water had broke early in the pregnancy and she was getting fluid replacement, and continuous monitoring.  The goal was to keep the baby in as long as possible before a c-section.  She mentioned her fears of the surgery and how she watched multiple videos to get accustomed to the idea.  She often shouted about ten gauge tools and the size of our doctor’s hands.  Dr. Javier was a very tall resident, with oddly small digits.  I hadn’t noticed until she said something, and it became a running joke with the ladies.  We poked fun and called him “Ole Javi hands.”  These jovial breaks each week became something I looked forward to.  

I eventually came out of my shell by taking up a sewing project.  I sewed a preemie bed bassinet.  It was blue and plaid and ugly as hell, but it allowed me to spark conversation with more than Rynn.  Rynn seemed to be the mother hen/comedian of the group, so she was easy to talk to, because she forced you to talk to her.  But, the other woman was more stately..quiet..and more like me.  She was an avid sewer and also a teacher.  I can’t remember why she was admitted, but I think it was a similar situation to Rynn.  She was more reserved than Rynn, but equally funny. There were a couple more women that came once or twice, but their stays were very short, so I didn’t really get to know them.  The final girl was a chain smoking lady that was not shy about the fact that she still smoked a pack a day at thirty weeks pregnant.  I would often see her outside when I took a walk around the campus.  She spoke of how her other two kids were taken from her and how her and her boyfriend lived from friends house to friends house.  She was proud that she stopped smoking weed and was only doing cigarettes.  She was admitted because her baby was way too tiny with many problems from what I understood.  

I tried very hard to get to know her and not pass judgement, but it was difficult for me.  I made the extra effort to teach her to crochet when Mary was busy with someone else, but I couldn’t shake my emotions.  Here I was carrying a baby that was for sure to die after birth, and I did everything right.  My blood sugar was perfect, I ate the best foods, exercised, rested, and drank tons of water.  I went to all of my appointments and prayed for a successful pregnancy.  Then there she was, doing all the wrong things.  She had babies and lost them to the state, and I couldn’t keep mine alive.  As I engaged in conversation with the group, I watched Rynn.  Her blue hair and tattoos moved around so much as she laughed along with her other mannerisms. I got lost in her humility even though her outward appearance was by no means humble.   I appreciated and respected how she openly spoke to smoker mom with absolutely no trepidation, like she was her best friend.  I thought I was a pretty non-judgmental person, but I was annoyingly wrong.  

In that small conference room on the fourth floor, I learned a lot about myself by being mixed in with people I typically wouldn’t meet in my small town.  If I did meet them, I probably would not be in a situation to have any sort of candor.  I put aside my pride and slowly learned how to be more like Rynn.  

One day I was at the secret laundry spot on the eighth floor and Rynn walked in.  She was calm and serious for the first time. As I folded and she sorted, she asked me how I was doing, and I broke down.  I was angry at the other mom, envious of the mom’s that would have live children that would merely have to stay in the NICU a few weeks, and I was lonely.  I was lonely because I was given an opportunity, by God, to be friends with these people and I couldn’t let my guard down completely.  I wasn’t being my person; who I was before this mess.  I was feeling so sorry for myself that I was missing a pure moment of growth.  That blue haired angel hugged me, and I realized I may not be able to get rid of my worry for Naomi, but I could get out of my own way and love those around me, like I would normally do when things weren’t stressful.  I had a choice to feel some joy during my stay, and I chose to do so for the weeks after.  

Love is a choice.  Joy is a choice.  Worry is a choice. Smoking while pregnant is also a choice.  Okay, I may still be a bit bitter about that one. 

Mary made patchwork quilts with blocks that represented her long-stay mothers.  Before my surgery date she presented me with my block. It was a blue and plaid ship.  She said, “We may not know where the ship may sail, but the captain is God, and for that, we have faith.” Teacher mom had her baby boy one night.  He was premature and in the NICU, but did very well.  She was discharged and she left on a positive note.  Smoking mom also delivered prematurely,  but after a short stay in the NICU,  got to take her baby home, or wherever home was that day.  Rynn…well Rynn was still there after I had Naomi.  

I saw my laundry and sewing buddy one afternoon as she was on a walk between the Children’s hospital and the “adult hospital.” I was eating lunch with Luke outside, and enjoying the sunshine after a long day.  It was her birthday and she was wearing a unicorn tiara, and letting everyone know what day it was.  It was a well-timed coincidence. It was so nice to see a familiar face, especially the beaming happy one of Rynn’s.  Her baby was born without c-section and was doing great. Javi hands got her done!  I recall her naming the baby some kind of warrior princess name.  And you know what?  I was genuinely happy for her when I found out.  That was the first time I didn’t compare Naomi’s story to someone else’s out of envy. 

“Jealousy contains more of self-love than of love.”  

[terrifictrauma]

Happy Birthday

I opened my eyes and the room was emptying.  I wasn’t allowed to hold my phoenix, but I was told she was doing okay.  She was breathing on her own, which was something they said she wouldn’t be able to do, due to her underdeveloped lungs and the fact that she had to one pound kidneys in her belly.  They were so large and cystic that they pushed up on her lungs in her newborn body.  I remembered what day it was, and thought about my stay in the hospital and how it was close to an end.  

Remember that before she was born, I was admitted into the “adult hospital” for my cardiac mumbo jumbo.  At least that’s how I felt about it.  I had also contracted mono somehow, which can also throw off heart troponin levels.  I think I said triglycerides before...yeah it was troponin.  I can’t even remember the issue.  That’s how obviously important it was to me at the time.  I had one focus, and that was to keep her in my body as long as possible so I could enjoy her being, well...alive.  

During my “staycation” in the high risk maternity unit, I met a few unique ladies.  I wanted to stay in my room by myself most of the time, but a volunteer named Mary convinced me to go to “group time.”  Mary was about five feet tall, gray haired, and gifted with patience.  She led a sewing and craft group for all the other glamorous vacation..I mean imprisoned, mamas.  We got to choose from a menagerie of recreational craft projects.  I already knew how to crochet, so I stuck with something comfortable.  I didn’t really want to talk to anyone about “why I was in,” so I listened at first. 

 Rynn was the most loquacious of the bunch and had no problem sharing her story.  Her water had broke early in the pregnancy and she was getting fluid replacement, and continuous monitoring.  The goal was to keep the baby in as long as possible before a c-section.  She mentioned her fears of the surgery and how she watched multiple videos to get accustomed to the idea.  She often shouted about ten gauge tools and the size of our doctor’s hands.  Dr. Javier was a very tall resident, with oddly small digits.  I hadn’t noticed until she said something, and it became a running joke with the ladies.  We poked fun and called him “Ole Javi hands.”  These jovial breaks each week became something I looked forward to.  

I eventually came out of my shell by taking up a sewing project.  I sewed a preemie bed bassinet.  It was blue and plaid and ugly as hell, but it allowed me to spark conversation with more than Rynn.  Rynn seemed to be the mother hen/comedian of the group, so she was easy to talk to, because she forced you to talk to her.  But, the other woman was more stately..quiet..and more like me.  She was an avid sewer and also a teacher.  I can’t remember why she was admitted, but I think it was a similar situation to Rynn.  She was more reserved than Rynn, but equally funny. There were a couple more women that came once or twice, but their stays were very short, so I didn’t really get to know them.  The final girl was a chain smoking lady that was not shy about the fact that she still smoked a pack a day at thirty weeks pregnant.  I would often see her outside when I took a walk around the campus.  She spoke of how her other two kids were taken from her and how her and her boyfriend lived from friends house to friends house.  She was proud that she stopped smoking weed and was only doing cigarettes.  She was admitted because her baby was way too tiny with many problems from what I understood.  

I tried very hard to get to know her and not pass judgement, but it was difficult for me.  I made the extra effort to teach her to crochet when Mary was busy with someone else, but I couldn’t shake my emotions.  Here I was carrying a baby that was for sure to die after birth, and I did everything right.  My blood sugar was perfect, I ate the best foods, exercised, rested, and drank tons of water.  I went to all of my appointments and prayed for a successful pregnancy.  Then there she was, doing all the wrong things.  She had babies and lost them to the state, and I couldn’t keep mine alive.  As I engaged in conversation with the group, I watched Rynn.  Her blue hair and tattoos moved around so much as she laughed along with her other mannerisms. I got lost in her humility even though her outward appearance was by no means humble.   I appreciated and respected how she openly spoke to smoker mom with absolutely no trepidation, like she was her best friend.  I thought I was a pretty non-judgmental person, but I was annoyingly wrong.  

In that small conference room on the fourth floor, I learned a lot about myself by being mixed in with people I typically wouldn’t meet in my small town.  If I did meet them, I probably would not be in a situation to have any sort of candor.  I put aside my pride and slowly learned how to be more like Rynn.  

One day I was at the secret laundry spot on the eighth floor and Rynn walked in.  She was calm and serious for the first time. As I folded and she sorted, she asked me how I was doing, and I broke down.  I was angry at the other mom, envious of the mom’s that would have live children that would merely have to stay in the NICU a few weeks, and I was lonely.  I was lonely because I was given an opportunity, by God, to be friends with these people and I couldn’t let my guard down completely.  I wasn’t being my person; who I was before this mess.  I was feeling so sorry for myself that I was missing a pure moment of growth.  That blue haired angel hugged me, and I realized I may not be able to get rid of my worry for Naomi, but I could get out of my own way and love those around me, like I would normally do when things weren’t stressful.  I had a choice to feel some joy during my stay, and I chose to do so for the weeks after.  

Love is a choice.  Joy is a choice.  Worry is a choice. Smoking while pregnant is also a choice.  Okay, I may still be a bit bitter about that one. 

Mary made patchwork quilts with blocks that represented her long-stay mothers.  Before my surgery date she presented me with my block. It was a blue and plaid ship.  She said, “We may not know where the ship may sail, but the captain is God, and for that, we have faith.” Teacher mom had her baby boy one night.  He was premature and in the NICU, but did very well.  She was discharged and she left on a positive note.  Smoking mom also delivered prematurely,  but after a short stay in the NICU,  got to take her baby home, or wherever home was that day.  Rynn...well Rynn was still there after I had Naomi.  

I saw my laundry and sewing buddy one afternoon as she was on a walk between the Children’s hospital and the “adult hospital.” I was eating lunch with Luke outside, and enjoying the sunshine after a long day.  It was her birthday and she was wearing a unicorn tiara, and letting everyone know what day it was.  It was a well-timed coincidence. It was so nice to see a familiar face, especially the beaming happy one of Rynn’s.  Her baby was born without c-section and was doing great. Javi hands got her done!  I recall her naming the baby some kind of warrior princess name.  And you know what?  I was genuinely happy for her when I found out.  That was the first time I didn’t compare Naomi’s story to someone else’s out of envy. 

“Jealousy contains more of self-love than of love.”  

#choosejoy loveisachoice NICU jealousy judgy

[terrifictrauma]

The “more about that later”

After Naomi came into the world, I saw a counselor that was provided by the hospital for families in our situation.  She was a petite woman with long charcoal hair.  She spoke of things gingerly and sweetly, as I imagine anyone in her career would do.  I had only ever talked to a counselor before because of my divorce.  It seemed, even with everything else going on, that’s what I needed to process the most this time too. So now, the “more about that later.” 

I met my ex husband in college.  He was a football player.  I called him a city boy; muscular, funny, sweet, and charming.  When I arrived at college, I was green, reserved, naive, and stayed in my room most of the time. I somewhat enjoyed the change of pace.  In high school I was what many would call an “over achiever.”  I was very hard on myself.  I overcompensated my insecurities with a high standard for success, and I was good at it.  I joined almost every activity and was in a leadership role for all of them.  Athletics and academics were my life, and extra-curriculars were my job.  I look back and I think I was trying to fill a void.  I was trying to prove to myself that I was worth something; that I was good enough.  I had a steady boyfriend whom seemed perfect.  On the outside, I appeared to have it all together.  

One night, I visited a family member and he had a party.  It was the summer before my senior year and I went to bed, because I had volleyball two-a-days starting the following week.  Long story short, the first trauma of my life happened, and I was scarred forever.  It was by no choice of my own, as this type of thing usually isn’t, and I now choose to not let the choice of another break me.  However, because of that unholy night, I became a new person.  I became a weaker person, and a more fragile person.  I regretfully quit some of my activities.  I heard my classmates call me “fake” among other things.  The truth was that I was fake, and high school is a mean and ugly place for the vulnerable.  I was trying so hard to look like I had it all together, that I’m sure I came off not genuine.  I focused my drive on getting scholarships, so I could get the heck away from that place.  I told my boyfriend what happened, and I don’t think he believed me.  I resented him for that, and when I went to college, I ran. I ran far away from my hometown and my past, and into the arms of a boy that had his own trauma.   

I wanted to remake myself, because I didn’t know who “myself” was anymore.  I had a lot of doubt in the fairness of the world, and I met someone who felt the same.  We carried each other to the point of detriment.  Our relationship was built on codependency, and not the good kind.  My new weakness seemed to be broken, but in hindsight I now know that I was drowning in mediocrity.  I was settling for easy, and I was using that messy energy to help “change a person” that didn’t need or want to be changed.  

I don’t want to dwell on this time in my life, so I will fast forward to the marriage.  

Our engagement was haphazard at best, but I was smitten..at least I thought so.  It seemed that marriage was the next natural step for both of us.  We were so young and naive to the world.  I think he too was trying to build an image of solidarity and normalcy, but it just wasn’t the truth.  

We had our sweet daughter two years after our New Year’s Eve wedding.  She was beyond perfect.  I prayed for a blue eyed baby with curly blonde hair, and that is exactly what I got.  I also prayed she wouldn’t be a cheerleader, but that’s neither here nor there.  We took a babymoon to a place that had a butterfly garden.  We had three name options, and we said if a white butterfly lands on me than her name will be Mia, and two other colors the other two names.  A white butterfly landed right on my pregnant belly and it was set.  

Our marriage was a mess from the beginning.  I discovered infidelity even during the engagement. Two months after Mia’s birth, he had a business trip in St. Louis.  I couldn’t get in contact with him and little did I know, my nightmare was about to begin.  

My first mother’s day and his birthday, I had traveled home, with my ex, to my sister’s high school graduation.  My father in law had sent a text to my ex wishing me a Happy Mother’s Day, so he handed me his phone to show me.  As I was reading the message, another text came in from someone.  It said, “getting ready for your real birthday...can’t wait to see you baby.”  I immediately ran to my ex, handed my baby to my brother, and confronted him.  We had to stop at my brother’s house on the way back to our home in Kansas City because there were tornadoes in the area.  It was pouring outside. The wind was blowing.  There was so much satirical irony, it’s ridiculous.  I remember falling to my knees and begging for him to not let it be true.  The water seeped through my jeans as the rain blanketed me

All I could think about was that we had a tiny baby to support and I didn’t want her life fragmented.  I was devastated as we drove home in silence.  He said he cared too much for this other woman to end it.  I went to work that day, after the weather let up on the drive, in my clothes from the night before.  I remember the pit in my belly and how it felt exactly like that night in high school.  Its an unfillable pit; a feeling of hopelessness and regret.  I have no idea how I taught my students that day, but I was learning that I could still keep my face, when my soul was worn and muddy.  

I tried to keep the threads of our marriage together, but it unraveled each and every day.  The emotional abuse was unreal, and the situation only worsened.  I thought I was weak before...I was bitterly wrong.  He left me on our third anniversary after ten months of me trying to keep it together for Mia.  Never was my mindset on what was best for me, but for our innocent blue-eyed girl.  I was devastated for her future upon my realization once again that life is just not fair.  

I could elaborate on this part of my life forever and ever.  The horror stories are endless, but the day he left was the day I began to fight for me.  No longer would my daughter watch her mother weakly submit to a man, even if that man was her father.  I was undergoing a metamorphosis that was preparing me for my next marriage and the life of Naomi.  The strength came to me as I fought for Mia, and for my dignity.  That was the beginning of my mentality; Terrific Trauma.  I fell, you bet.  I lost forty pounds of body and forty pounds of hope.  But then I came out of my tomb with a fire and vigor I didn’t know I was capable of.  I was going to be the BEST mom to her, and the best ME for me.  Never again was I going to fall to my knees begging for love from someone incapable of it.  

I fell to my knees for Jesus to help me, and that he did.  I met Luke and he helped show me my real beauty and worth.  He was the man every girl can only dream of. He made an effort to understand my experience and he accepted me.  He loved me for my flaws, not to spite them. He so effortlessly and positively trudged on by my side, but only after I rediscovered Christ and my new found worth.  

Trauma shapes us.  I hate it.  I hated this part of my life, now that I am who I am and looking back.  But, there is no way I would be emotionally or spiritually ready for Naomi without this snapshot.  

In weakness I find my strength.

After Naomi was born I was having to drive my oldest to her dad seven hours away and pick her up..and the same distance home.  This is why the counselor had to hear so much about this chapter as Naomi’s story was just beginning.  Yes, her story was beginning.  She survived more than a few hours...more than a few days.  My time in the hospital was far from over though, and I was strong enough to endure.  I thank the Lord for my past.  I chose to cling to Him, and he guided me through to the next chapter..  

#postpartum cheater Jesus ARPKD NICU thankful perspective terrifictrauma

[terrifictrauma]

How can we let her die?

Shivering, I sat crunched over as the doctor gave me my epidural.  Nothing felt warm despite the warm blanket draped on my legs.  I had my headphones on, playing inspirational music.  I compiled the playlist for months, in the hopes it would help the situation.  I remember her saying, “Just breathe and relax.  Your baby girl will be here very soon.”  I was fighting back the waves of tears.  Tears may be made of water, but I felt flames.  I was consumed with fear and all of it was ignited by this place.  Hospitals, sterile tools, monitors, and the smells of bleach ignited the dread in my heart.

Let’s rewind.  Around three months before this day, I was walking around the county fair with my parents and my five year old daughter from my previous marriage.  My husband was out of town and things had been stressful.  I was trying to give her some good kid fun in the chaos that was our life.  She was riding the rides with my mom as my dad and I spoke about livestock and nonsense.  I had a difficult pregnancy up until this point and was enjoying feeling pretty good for once.  

I had lost my son in the second trimester that January and was gifted my rainbow two weeks later.  Was I stressed? Sure I was, but my grieving was numbed by the excitement of my new baby girl, Naomi.  

As we walked I started feeling sharp pains.  I couldn’t stop them, sit them off, nor drink enough water.  My dad drove me quickly to the local hospital.  I knocked on the door with hope for some relief and was met with, “We can’t help you here.  You need to go to the next hospital over.”  It was my hometown hospital, where I was born 29 years before.  After a sonogram,  I found out that night that my amniotic fluid levels were low.  I had a follow up the next week with my OB.  I was expecting the small and crass little man to tell me I was dehydrated or something.  Then, he urged me to go to a bigger hospital with my high risk OB.  I have type one diabetes.  That lovely autoimmune came to me in college, and gave me my high-risk status.  Anyways, my husband rushed me to the bigger hospital.  If the county fair and livestock talk wasn’t a give away, I’m from a very rural community.  The bigger hospital was five hours away.  We drove on nerves.  We were unsure of our condition, and discussed how everything would be okay, as we drove.

Everything was not okay.  

There, the high risk doc told me they have saved younger babies.  I was given steroids for her lungs, and was expecting her to come then.  My fluid kept getting lower and lower.  My preterm labor was stopped and I was sent home for another follow up with him the next Monday.  

After the sonogram, “The good news is there’s dialysis and kidney transplant available in pediatrics.” Wait, what??  “Your daughter’s kidneys are enlarged and echogenic.  They aren’t making urine.  That is why your fluid is basically gone. I’m referring you to the Children’s hospital.  I have a college buddy that works there, and it’s closer to you.” I recall him telling me of the will of a mother.  He had another patient, whom he was for sure the baby was going to die, and the mother refused to believe it.  The baby lived, even though it was a complicated and trying go.  This was not the story I wanted to hear.  Those were not calming details to learn about my unborn gift.

I was teaching at the time.  I had finally got back into the classroom after moving back to this area, my childhood community, after a rough divorce and a new and wonderful remarriage.  I had finally somewhat escaped my ex and was surrounded with the love and support of nearly all of my family.  Teaching is my heart, my calling.  Have you ever loved something so much that you can’t think of doing anything else?  That was me.  Education excited me.  I loved planning lessons, decorating my room, watching kiddos learn and grow, and I even enjoyed parent teacher conferences.  At the time of the relocation, it seemed that everything was looking up and things were starting to settle in my life...even after the miscarriage.  My custody battle was long and ugly.  Even though that portion of my life wasn’t over, I felt as though there was an end in sight...away from him.  More on that later.  

I drove back to my classroom after the devastating news. I drove in silence; my mind wondering and my heart pounding. I remembered the day I lost my son, Huck, as we named him. I woke up the night it happened with spotting.  I called my OB and she said it would be fine.  She said all the normal things you say to a pregnant chick.  “Drink water, rest, and put your feet up.” I went back to bed after obediently listening.  3 am came with agonizing cramps.  I looked down at the sheets to a puddle of red.  It was a warm coldness that I will never forget.  I looked at my sleeping husband for a second.  Should I wake him?  He looked so sweet and was so exhausted from work. That choice was no longer a choice.  He came to me as I ran to the bathroom, terrified.  Luke, my new love, was staring down at me after calling the hospital.  I told him I didn’t want to go.  I wanted to stay on that tiny bathroom floor forever.  I looked down at my son.  He was so tiny and so perfect.  My hands were red and so was everything.  The bleeding didn’t stop; it wouldn’t.  I didn’t want to leave my lifeless baby, so I put him in a container and we left.  I left him, and it was unbearable.  I had to have emergency surgery that night, a ride in an ambulance to the “bigger hospital,” and a blood transfusion.  The doctor said they nearly lost me, but I felt alone in the wilderness anyway.  Losing a child is a desolate and unexplainable experience.   

We buried our son between our newly planted apple trees.  I thought of those trees in the car. So little...perfectly designed. They had cute little leaves at that time and they were anchored down in the soil next to my garden. They were so petite and yet so full of life.  The irony was too much. 

 That seemed like the longest drive of my life, and I drove a lot in those days.  But like I said, more on that later.  

  It was a catholic school, that I taught at, and after arrival I wobbled in and I told the head mistress what the doctor said and immediately went to the church.  There was no way I could continue with my lessons for the day.  My daughter was in my class.  She saw me in the hallway, and I could see the joy leaving her face.  It was replaced with worry and that made me sick.  I told her mommy was fine, but she knew I wasn’t.   A sweet lady that volunteered at the school followed me.  She tried to comfort me, without knowing me...not really knowing me.  I cried and cried to Jesus.  I was angry, terrified, and anxious.  I recall the altar of the church and how beautiful it was.  I was pissed.  How can this altar be so beautiful, and my unborn baby be marked with some unknown disease?  I know that is a strange comparison, but it truly was agonizing.  My baby was beautiful to me. I had seen her many times in the sonogram. I had felt her wiggles so much, her hiccups, and her kicks.  I adored her as much as I adored the God that lived in that church.  She was from Him, so I had to refocus my thoughts away from despair.  I couldn’t though.  I couldn’t pray it off, kneel it away, or cry to him and receive respite.

  I left the church feeling alone and helpless.  This was a feeling I would feel all too often in my very near future.  

I had an MRI scheduled at the “closer Children’s hospital”.  My husband and I were a wreck.  Our bond grew stronger as our hearts grew weaker.  I had prayed for the intercession of a Saint that provides roses, in times of distress, the days before. I had prayed for my roses to tell me everything would be okay.  I had the MRI and as we walked to the room where we were given the diagnosis I saw beautiful roses on the nurse station desk.  I didn’t think anything of it. I had forgot about my prayers with all the stress of the situation. Little did I know that those roses would change my life.

Once again, I was sitting on a hospital bed getting another sonogram.  I looked at my sweet baby and could see her abdomen was completely full of something fuzzy...her kidneys.  The tech left the room without saying anything.  I could see her expression.  I knew something was gravely wrong before I walked in there, but I wanted her to give me rest.  What seemed like forever later a geneticist arrived.  He was a man about my age, tall and slender.  He was so put together.  He seemed so calm and collected as he told me our daughter had autosomal recessive polycystic kidney disease, and both Luke and I were carriers that’s how she got it.  He said we can get tested, and test for other deformations and genetic diseases.  He mentioned that most parents abort these babies.  He was calm and expressionless.  It was too easy for him.  It was his job, and that was science.  Then he left.  

We were moved to a room full of doctors.  Pediatricians, a nephrologist, a counselor, nurses, my new high risk OB..”the college friend,” and others were in attendance.  Most of it is a blur to me now, but I remember the nephrologist saying, “We like a challenge but she will probably not live more than a few hours to a few days. There is a one percent chance for survivability. If she lives, she will face more challenges than dialysis.  She has underdeveloped lungs and will probably get multiple infections, and will suffer her whole life more than likely.”  The pediatrician said, “We can terminate, or just let her go after she is born.  No one will judge you morally, religiously, personally..” etc.  They kept asking us if we had questions.  Our only question was, “How long do we have with her?”  They had answered it, and we just wanted to leave.  

Another long drive back home as Luke and I fought the idea of letting her die right after coming into the world.  How can we let our baby just die without giving her a chance? I remembered seeing the roses.  Those beautiful roses.  As we were driving we saw a pro-life sign with an infant on it.  It said, “choose life.”  We determined then and there that we would fight for her as long as she was willing to fight too, and that began this story. 

I continued to work after the diagnosis.  Sweetly smiling and teaching through my agony. I would mutter words of hope and faith to others that asked, even though I rarely felt those feelings.  I would look onto the faces of my students and want to cry, because my little girl would never have a sweet smiling teacher.  She would never learn to count, or read, or have the joy of watching the class butterflies hatch from their chrysalises. Everything was melancholic.  All my thoughts were consumed with comparisons to how my perfect little girl was not perfect, and that she would never experience the life that I was then just floating in. 

Then, one day, as I was giving a lesson on the alphabet, I felt those all too common cramps and pains.  They gained aggression and so I drove myself to the emergency room once again.  I was in preterm labor again, and they flew me to the Children’s hospital to a room next to the “diagnosis room” I had been at weeks before.  I was given many drugs on the flight to fight the pain and to hold off the inevitable.  I awoke in my new bed to another doctor saying, “You know there is a zero percent chance this baby will live, right? I just need to be realistic with you.” My husband told him to get out, and I fought off the delivery all night.  My labs came in and I was having a cardiac emergency.  They said my triglycerides were high and I was ambulanced to the the hospital “just for adults.”  The reason for my elevated levels was never fully diagnosed.  I remember one cardiologist saying it was “broken heart syndrome.”  They wanted me to do another test, but it would effect Naomi’s kidneys, so I said no.  There was no way I was going to hurt her little body anymore than nature was already doing. 

  I was hospitalized and on bedrest for most of the third trimester because I kept going into labor.  My body knew. It was trying to get the diseased baby out.  Yet, we fought.  Everyday they monitored me and the baby.  As I stayed there by myself I capsized into myself.  I tried to stay positive, and appeared to be on the outside, but that trauma was so much, I still haven’t gotten over it.  I longed to be home, fat and happy, while my husband doted on my pregnant body.  I wanted the experience to be with him and my daughter at home, and to be normal. I imagined taking pictures in front of the mirror and posting them on social media with comments like, “36 weeks and feeling good.” But, that wasn’t our story. This was not a fairytale.  I drew a picture of an inmate behind bars, and marked the days I stayed there until they decided to do a C-section.  I wasn’t allowed a delivery because of all the complicated aspects of the pregnancy; and there were quite a few. 

 The birthdate was chosen. October 1. I came to find out weeks after the birth that this was the feast day of St. Therese(The intercessory rose Saint). This was the day Naomi Grace was to be born and the day she was to die. 

 Now back to the surgery table. Crying as my legs went numb. I was feeling no comfort.  The only other surgery experience I had was after I lost my other baby, and here I was about to birth another baby that was probably going to die.  I knew I would probably only hold her after she had passed, or as she took her last breath.  I had months to fear and grieve the loss of those precious moments; breastfeeding in the silence of her nursery she would never see, kissing her cheeks as she whimpered for me in the wee hours of the morning, changing wet diapers I had carefully washed and put away in her drawers in anticipation of her arrival months before.  I had already told myself that I wouldn’t get those experiences, and now her birth was even more hideous to me.  There was no joy, and no excitement, and no happiness.  I was terrified once again.  

I heard her cries and they let me look at her, very briefly.  She was irregularly swollen.  I had a five year old daughter, so I knew what newborns were supposed to look like.  I battled wanting to hold her, but they swept her away.  I told myself it was probably better that way.  I wouldn’t have to listen to her gasp for air, or see the light leave her eyes.  My husband, my rock, left me there too.  He watched as they got her ready for her fight.  And I....I laid there crying helplessly with so much exasperation that I thought I could die too.  The typical exhilaration that comes after having a baby wasn’t there.  The relief from successfully carrying a baby for nearly ten months, and bringing them into the world to start their beautiful story, wasn’t there. I felt completely alone in that moment.  Then, my headphones started playing a song about a phoenix, and I closed my eyes, sighed, and prayed.  

#arpkd naomistrong infantloss miscarriage St.Therese dialysis sonogram pray