Old ghosts and new challenges

They come and they go. I hate the old ghosts. I can't ever be totally rid of them. As I have said before, I think I'm not supposed to be rid of them. I think, instead of seeing them as something that I should fight and then waste my time battling something permanent, I should acknowledge them and figure out how to do something productive with them.

We have moved back to be with the kids now. We've been back just over a month. It has been an absolute roller coaster. The logistics of moving across the country are bad enough, but apparently this time of year in this area presents its own kind of nightmare. It has left all involved in a state of exhaustion. Now we are just acclamating to all the new that is around us.

I can't say that I've been very proactive with my healing over the last month. My brain has been working so hard just to keep everything straight. That would normally be hard enough as it is with all the changes, but I also found out some more information regarding my health - I'm currently sharing it.

Yep. Pregnant.

I am so grateful to finally be growing this little life, but the timing probably could not have been worse. It makes me feel so guilty to even say that. I have so many friends that struggle with fertility that I very quickly recognize that I should be celebrating every beat of the heart of this little person, but I also feel torn. I did want to come back and give attention to my three little "already here" ones and to the new job I had planned that I would acquire. While the inhibitions are minimal and certainly not crippling, it leaves my heart asking yet another "Why?".

That sounds so terrible to me. My husband and I started trying to get pregnant months ago. We talked through all our options and how to plan and we had even agreed that, if we didn't conceive by March, we would wait until next calendar year. We did not conceive by March, and then the next two months brought a lot of really painful, hospital trip inducing pain that left me feeling a little certain that we actually may have to abandon the idea of getting pregnant altogether....well, gosh I was wrong. I think I got pregnant like 4 days before we made our cross-country trek.

Here's the funny thing. This is baby number 4 for this uterus and body, so morning sickness started two days after I found out the now grape-sized baby was cooking, and my belly IMMEDIATELY began to make room for its new occupant. ..awesome. So the whole idea of waiting to tell my new employer so she wouldn't worry about me not being able to handle things or even the awful experience of being treated like I was fragile (I am a princess. We know this, but something that my life has revealed is, fragile I AM NOT!) At about week 5, I told her I was going to sit at the restaurant where my husband works and relax and wait for him to get off, and she told me I should sit and have a beer. I had almost an out of body experience while I just felt the words vomit out of my mouth before I could stop them "Uh...actually I'm not drinking right now", and then I just stood there with an expression on my face that was so awkward, it still makes me hurt. She immediately guessed why, because DUH! The belly was a giveaway. One of my coworkers had even already noticed it. My ploy of loading up the pocket of my smock with bulky items did nothing to obscure the fact that there was a belly behind all the crap.

So also with pregnancy comes the emotional roller coaster and the fatigue. The fatigue I try to combat in my own ways, but the emotions. My poor husband. On one of the nights that I was leaving my job to go wait for him to finish his, I asked him to put in an order for me for the tuna melt (made by their chef - Oh my gosh. So delicious). He regretfully told me that they had run out of tuna. I literally blinked away tears while I drove. I straight up cried.

And there's also the being back in this place. At no point has being in this place been a positive experience for me. I have lived in 7 different states and moved more times than I care to count, and never have I lived in a place that represented so much terrible pain and utter failure. I have literally lost everything in my life TWICE in the 3 1/2 years that I've lived here. I don't like it here. It's hard for me to be here and feel the nearly tangible oppression that I have felt since my arrival.

And there is the reintegration with my 3 munchkins. Life has presented new challenges with them individually and collectively. I spend a lot of my day trying to figure out just how to tackle each problem. My heart has weighed a million pounds nearly every day since I've been here. More on that at a different time.

So my hiatus in Norman was so incredibly painful but helpful. It was my opportunity to come up for air, but upon my return I could feel the struggle of the waves I see now every day push against every muscle in my soul. This resuming of the "swim" has indeed brought back some old ghosts. Some I have fought well, and some have caught me off guard and left me crying and confused.

I apologize that there is not much of my usual presentation of a challenge followed by a solid confidence in a resolution. At this moment, I'm not sure of the resolution. I'm not sure of my next opportunity to come up for air. Right now, I'm just concentrating on surviving.

On letting scars stay

The past 2 days have included some really unpleasant emotions for me. I saw a video online of a boy at a poetry slam expressing the effects of his rapist being suggested as a Facebook friend for him. He was completely eloquent. As much as I try to give a voice to victims, it is such a rescue for me when I am able to listen to someone else be a voice for me. I "shared" the video with a caption of my own explaining that some of my Facebook friends are Facebook friends with my attacker or members of his family. The moment made me feel strong. I had a platform of activism and exposure to the issue after being given the resource of this guy's words. It felt good...and then it didn't.

Within a couple hours of watching the video and sharing it on my wall with my caption, I began to feel the darkness of my trauma come back. I felt the sludgy filth start to stain my insides again. I recognized what I felt and tried to put it in the lock box I have crafted for this type of trauma, and then I forced my mind to concentrate on other things. The sludge stayed though. It was content to stay in the background of my thoughts as it laid in wait for the first moment that my mind was not distracted by other things.

It crept forward a couple steps today, but I didn't recognize it. It disguised itself as the stress I'm feeling over our impending move. The disguise was only partly effective though. As I sat today telling a friend about some really wonderful things that are happening in my life, I found that a weird angry passion had entered uninvited into my contributions to the conversation. "Why am I so angry?...I sound so angry...what is this?" I thought. Even with this internal questioning of myself, the sludge's sloppy ruse was sufficient to distract my attention from it.

It crept forward another couple of steps while I was at the grocery store. I forgot to eat until late afternoon, so I was "hangry" by the time I got to the store with my husband and another friend. I wanted a cupcake. I had even picked out the cupcake that I wanted (because that specific cupcake was going to taste noticeably better than the other ones on the ceramic tray). The girl working the bakery was taking her sweet (see what I did there? "sweet") time filling out an order form with a lady ordering a cake for the birthday party of the child standing next to her. I walked across the aisle to where my husband was standing at the deli sandwich line. I ordered my food and then made excuses to Dan for my short temper by explaining that I was just so hungry. He made a teasing comment to me. I snapped at him and said a bad word to him that he did not deserve to hear. I began to feel frustrated that I was so on edge and apologized to him nearly immediately, but the feeling of something being present that wasn't invited was starting to register. Still the sludge had not totally revealed itself until later in the evening.

My husband is a very, very tender person. He is so attentive to me. Sometimes to the point of being embarrassing to me to be treated as someone so valuable. This evening he made a tender gesture towards me, and the sludge came charging forward to the front of my being. I literally physically pushed Dan away. I didn't shove him. I moved his hand away. He was offering me love and tenderness, and I rejected all of it and walked out of the room. He had done something completely sweet, but it triggered a memory. Something about it reminded me of a different time. The moment the sludge had been waiting for came. It swallowed up the tenderness my husband was offering to me and replaced it with the memories of times that I had been stolen from. I felt the infection of it poisoning our evening together, and I felt totally helpless and really frustrated. I asked myself and I asked Dan out loud when the day would come that these things wouldn't haunt me anymore. Neither of us were able to find an answer so we spent a couple hours in different rooms.

After our sabbatical from the presence of the other, he stepped into the doorway of our bedroom and, with the same careful tenderness that he always employs asked the same careful question that he has used every time this sludge has stolen a moment from us - and there have been so many. "Do you want to talk about what happened tonight?" I am ashamed to admit that my first impulse was to continue to "protect" myself from letting someone get close to my heart and to tell him "no", but I felt my head nod in a "yes". I asked him to turn on the light so he did and then laid down on his belly next to me on the bed. Then he just looked at me...and waited.

I began to talk through how I haven't been as vigilant about continuing my healing process over the last few weeks. If you pay close attention to my blog (so...my mom), you may have noticed that there have not been as many posts during that span. (again, this is probably only my mom) I am so thankful that people have found some of my words here to be helpful, but the primary purpose of this blog is, in fact, my own catharsis. When I don't actively pursue that healing, not only does the healing not happen, but the muscles of what is left of my spirit begin to atrophy a bit.

As I was talking, the light of sense shone through to my brain. I was ready to admit something that had been fighting its own way to the front of my brain in a battle against the sludge. This is permanent. These scars and amputations of my soul are permanent, and to pretend they are not does nothing but make me look like the emperor with his "fake" adornments. Cloaking myself in the denial that there are parts of me that have been severed and stolen only leaves my spirit vulnerable in a way that is not productive.

That is a hard thing to accept. I have fought that admittance since the first experience I had with being forced to do something to which I did not consent or being treated as an object. I waged my war against this realization even more furiously each time a new event would occur. I have spent more than 10 years of my life training my brain and soul to believe that, if I fought hard enough, I could gain back the things that were irretrievably broken or that I could make the scars from the darts and knife marks of acts of hateful people just disappear. That's just not how it works, so it is no wonder that I have spent so much time confused.

They are permanent. I have to accept that, and on this day, I choose to. There are now parts of me that are gone forever, and there are now scars that I will carry on my spiritual skin for the rest of my days. So what will I do about that?

The first thing I'm going to do is stop looking around for the things that are gone. I cannot regenerate or resurrect the things that have died or been cut away. Then I will be even more vigilant about strengthening the parts of me that are left. I have found myself to be able to compensate in ways that make life more beautiful than it would have been if I had never been altered. I have come to be aware of what strength in those parts actually feels like. I know now how to train those parts of myself, so I will not let myself forget that attention needs to be given to that. I will also celebrate victories. I have admonished others to celebrate victories amidst their struggles. I will allow myself to do the same. I will also give love, and I will accept love.

My journey has been really circuitous and really bumpy, but I have learned some things along this path of mine. I have learned that doing the things I listed above will result in the ugly voice of the sludge being quieted. So, sludge, go back from whence you came. You're not welcome here. I hope you've enjoyed your stay, but it's time you found the door.

Rachel Platten - Fight Song (Official Lyric Video)

A brush with luck

When I was a junior in high school, a Mary Kay lady came to our health class. She brought with her wares a set of makeup brushes. "One of you is going to win this brush set!" She instructed us to write our names on scraps of paper and drop them in a basket.

I really wanted those brushes....like real bad. I didn't wear makeup, but my mom did, and it was almost Mother's Day. Our instructor spent the class period telling us how to put on various products waiting until the end of class to draw the name of the winner. I spent the whole class period casting sideways glances at the brushes standing statuesque in their lucite jar. I was totally distracted and kept thinking about how badly I wanted them for my mom but how unlikely it was that I was actually going to be taking them home to her.

And then it happened...she did indeed draw my name.

I will never forget how lucky I felt. So embarrassed. It seemed to me that any other person in my class should have been given the privilege of being acknowledged as the winner, but it WAS me! I carefully packed them into my backpack and felt all day like I was carrying around the Hope Diamond. I hid them until Mother's Day and then exulted in the joy I saw on my mom's face when she opened them. She was amazed by my gift. She loved them, and that just made me feel even more lucky.

She still has them - or at least the jar they came in. Those brushes - my brushes with luck - had a lasting impact on my mom's life. In a small way, they have changed things for my mom for the last 16 years.

Lucky. That makes me feel so lucky.

Let me tell you something else that makes me feel lucky.

Tonight a friend of mine posted on my Facebook wall that Rachel Platten's "Fight Song" reminded her of me. I had never heard it before, so I gave it a listen...and then bawled my eyes out as I sat listening to it on repeat. What my friend was effectively telling me was that, to her, my name was synonymous with the sentiments of the lyrics. I am blown away by this.

A few years ago I found myself in a position that required me to fix my resolve and push ahead past some very huge challenges. There were people depending on me. I did not have the luxury of giving way to any self doubt, so I just pushed ahead. Then more challenges came and then more and then more and then more. It became exhausting. In an effort to gain some strength, I started telling people my story. I would share about a challenge I was facing and ask people to pray on my behalf. They would do that and offer me help any way they could, and I would watch myself scale the mountains that stood in the way of my spirit and then find myself standing on top of them looking over the splendor created from overcoming struggle. This would make me so happy and feel so grateful for the encouragement I received that I would share the success in a public way so everyone could feel happy about their contributions to my success. I was highly motivated to succeed by the knowledge of the people that depended on me, but I must tell you that the constant barrage of challenges left quite a bit to be desired in my faith and inner resolve at certain points. So I would keep repeating the cycle of sharing my challenges, waiting for encouragement and then watching my obstacles disappear into my past.

Then something new started to happen. When a fresh challenge came, instead of being totally thrown for a loop, I would remember "Oh wait. I can fight past this. I have been given the tools and the knowledge that this can all be used for good. Okay. I'm gonna find a way to accept this challenge and conquer it and then store the experience to be used for good. This cannot defeat me." This, apparently, has spoken to the souls of a few people. This, apparently, has given inspiration to a few people. This, apparently has started to provide me with a more far reaching ability to provide love and rescue to the hearts of people. I do not feel worthy of this. Sometimes it actually feels like I'm watching this happen to someone else.

I have more challenges that are coming in the future. I know what some of them are, and some of them are still a mystery to me, but I know that they are coming. I can also see something else coming, though. I can feel it, actually. My platform. For whatever reason, people are reading my words (someone in Brazil reads this blog...I don't even KNOW anyone in Brazil!...So..Hey, Brazil!), and they are listening, and then they are spreading the message that I spoke to them. People are asking for my story. They are literally seeking me out. That platform about which I spoke - I can feel it being hammered together under my figurative feet. I am watching more heads turn when the sound of the voice of my spirit utters the words I want to share. That...is a lucky thing. That...is how the world begins to change. To think that I am being ANY part of that blows my mind, but it's happening.

Have you ever thought about the fact that you inspire someone? That doesn't register very easily. I'm gonna be honest, it is really hard for me to associate myself with inspiration, but if I don't acknowledge that this is happening, I waste this. I am NOT willing to do that. I am NOT going to waste this, so, at the risk of sounding like a total narcissist, I'm going to embrace it! Because you know what? Me and my army of lovers of my life HAVE survived all this crazy stuff. If that gives me the ability to change things for the good, then I would be a FOOL to be self deprecating and pretend that I did not actually survive these things.

So I'm going to do my best to inspire people. I'm going to keep telling my stories...and you can bet I'm going to keep fighting my challenges. I will remember that I will have more brushes with "luck". I will be the "small boat" of which Ms. Platten speaks knowing that my little ripples can cause some big ol' waves because it's not a set of makeup brushes anymore that hangs in the balance - it's lives and souls. I will get tired and discouraged, but I will remind myself...every...single...day...

"I've still got a lotta fight left in me"

And hey, after you read this, why don't you think about joining me? How about finding that "fight" in yourself and traveling with me? COME ON!!!!

https://www.youtube.com/watch?v=LVxon65u3tA

On leaving Norman

I didn't sleep last night. Not at all. I'm literally trembling from exhaustion, but my respite from my troubles has come with the rising of the sun....it's my back yard.

We will only live in this house for 3 more weeks. I have lived here since November, and my husband has lived here for 5 years. 5 years is a long time to live anywhere for me. I don't know that I've ever lived in any house for 5 years in my whole life, but this place has been his and then ours. To be honest, I hated it when I got here. I missed the 4 bedroom house with a giant yard and fire pit that I left. I missed all my girlie everything. I was annoyed with all the natural wood everything and the fishing pole picture frames and everything being so masculine. It just wasn't my house. It was someone else's house, and, for the first 4 months, I felt like I was squatting here.

But then something started to happen. Somewhere along the way, I got "my" dresser and "my" side of the couch and the mugs I like to use for my coffee. (My favorites are the one that says "Dan" that he got from his mom and the ones that say "Baby's Coffee" from a coffee shop in the Keys) Maybe it was when we had a few days of snow and the whole place looked like something out of a movie. Maybe it was on one of our walks to the grocery store or one of my favorite boutiques. Maybe it was after "his" friends started to become "my" friends too....not sure, but I'll tell you this. I'm going to miss this place.

I'm going to miss being able to walk absolutely anywhere. I even walked to our wedding. I'm going to miss the buildings on campus. They're so much older than the ones I lived around for the 3 years before I got here. I'm going to miss the restaurants. Dan has taken me places with foods I still can't pronounce. I'm going to miss the birds. Anybody who knows me well at all knows my recent but deep connection with birds and feathers. Norman has this chubby, little grey bird variety that always seems to find me when I'm having a bad day. I'm going to miss the seasons here. I know the summers are unbearably hot, but I have so enjoyed getting to see snow again. Makes me think of my childhood in the suburbs of Chicago. I'm going to miss the one street of downtown. It's little, but it's cute. There's enough there to spend a day wandering. I'm going to miss the gazebo where we got married. I'm going to miss the walking itself. We have had so many talks and learned so many things about each other during those walks. Oh the things we've talked about. I didn't realize I could love Dan more than I already did, but I do....and a lot of that happened on those walks.

I'm going to miss the people here. I've spent my life leaving people, and that has left me with a lot of friends in a lot of different places. The leaving is always hard though. Dan spent years telling me about all his wonderful friends. Dan is nearly an eternal optimist who will see good in the ugliest of people, so I thought he was exaggerating about what his friends were really like. He wasn't. These people are gold. I've grown to truly love them. A long time ago, I had a sizable group of close friends. We spent time at each other's houses just about every weekend and always time during the week too, and then I went several years without having very many close friends at all. That was a sad, lonely time for me. I will never forget being at a barbeque about a month and half ago, and the thought struck me "Oh my gosh.....this is what it's like to have friends"....not hypothetical...not an abstract thought....me. This is what it's like for ME to have friends. I'll also never forget realizing that people here were talking with me because they just might actually enjoy my company. I got invited to things...without Dan. Just me. These people here gave something back to me that I thought was gone for me. I hope some day I'm able to express what exactly that has meant to me, so maybe this will help do the job.

And my back yard. We don't really have a back yard. We have sort of some space between the back of our duplex and the fence line of someone else's property, but when I look out there and see so much green, I just feel peace. The big trees speak to me, and those lovely birds prance around and stare at me while they cock their tiny heads to the side in silent conversation with me. I have watched the picture change from barren and cold and empty to covered with beautiful snow to burgeoning with new spring growth. It has become a view that is just for me. Somewhere along the way, it became mine.

I have not felt "at home" in a very, very, very long time. Dan and I have even talked about my frustration with this....but I'm feeling it now. This place, this town, this funny little apartment just off of campus has become home to me just in time for me to leave it.

So Norman, I love you, and I will love you forever. You made my life a more wonderful story. You gave me things and people that no other place could. For that, I am in your debt. I will carry your picture in my heart for the rest of my life, but I do have to go. There are 3 babies that have tugged on my broken heart every day that I have spent here. It's time to write the next chapter. It's time to continue this adventure of my life.....but we'll always have each other, Norman, won't we?

On keeping Sally - Part 2

Sally was given her release from the hospital, so we headed home. It was so wonderful. She started eating consistently, and our whole family got to be together. I remember one day while Natalie was at school, Noah went outside and took me on an adventure through our yard. I carried Sally in a little sling, and we investigated all the things in our yard. He even showed me how strong he was by picking up this giant branch!

I remember feeling such a sense of rest that life was getting back to normal. My new baby was healthy again, and I was getting to enjoy sweet little moments with my family. 

The thing I did not enjoy was that I was now receiving very condescending advice. I surmise that, because my baby experienced a nutritional anamoly, people were assuming that it was actually my own ineptitude or lack of attention that caused the whole thing. I will never forget venturing out to church for the first time carrying Sally in the little sling mentioned above. I had used it with all three of my babies, and, though this model had been recalled because some babies had smothered, I felt confident in my attention to making sure the babies were always safely elevated within the sling and I was always very careful to make sure their airways were totally unobstructed. My mothering decisions and judgment were not sufficient for one of the ladies in the church, however. She mentioned to me that the sling had been proven to be unsafe. "Yes I read about that, but I....." she interrupted me before I could even finish a sentence. She actually continued to interrupt me and offer me LOADS of unsolicited advice on things so simple as how to hold a baby.....yes. I have been caring for babies since I was literally 9 years old, and I had to stand there and listen to this woman give me instructions on how to hold one. I was absolutely disgusted at the liberties she took after she assumed that an unforeseen medical problem was my fault. 

What I had needed in that moment was support and reassurance and gratitude to God in my presence that Sally had survived something that, had I waited probably just a couple more days, would have claimed her life. Instead I got criticism. What was even more irritating is that no one in my "group" stood up to my defense. They all just stood there letting this woman drown me in her gratuitous, condescending and even archaic advice. 

We went home and spent the next few days trying to settle in to regular life. Natalie went to school. Noah stayed with me and played and napped and learned things. Sally ate and slept, and I had started to do some hair for family and friends.

On about our 4th day home, a relative my age came over for some highlights. She is well known for the liberties SHE takes in sharing her opinions on other people's lives with little regard for the FEELINGS of others or what is or is not appropriate to say. As I was foiling her hair, she looked at Sally laying in her bouncy seat. "LOOK at her neck, SARAH!" she shouted at me. "Yeah. She's still putting back on the weight that she lost. She's still skinny" I replied. "NO Sarah!" she went on "That's what MY daughter looked like when she had RSV! My husband is a nurse. Look at when she breathes!" She pointed at my baby. "There is just no way......" I thought. "She just left the hospital. Please don't speak such an awful illness over the baby of mine that just got out of danger...." I spoke to this woman - all in my head. I finished her hair and then got ready for a date with Sally's dad that evening. I kept watching Sally though. Something was definitely a little off, but, because of her low weight at that point, I really could not tell if she was having trouble breathing or if more of her breathing activity showed because of her low weight. 

We took the kids to their grandparents' house for our date, and I told them to just keep an eye on her. If anything looked remotely off, let us know when we got back, but if she seemed to be going into ANY kind of distress to phone us immediately - not to wait - just call us and we would take her straight to the hospital. 

The evening wore on, and we received no phone call interruptions. My mind began to worry though. I resolved in myself that I wasn't going to let my indignation at people speaking to me condescendingly get in the way of this little baby being healthy. When we returned to their house, they gave us the news. "She did okay...the other kids are asleep....she's alright, but she does look like she's struggling." "Okay" I said and looked at Sally's dad "We are going to the ER right now. I'm not gonna mess around with this. We're going". I turned to his parents and asked "Can the kids stay with you?" They answered affirmatively. Then I gave them strict instructions. For Sally's first stay, we appealed to everyone on Facebook and in churches across the country. Sally's grandfather even stood behind his own pulpit asking for prayer for her. This time, however, I felt the need for privacy. I told them they were not allowed to announce this at church or anywhere publicly. They could ask a few people to pray but to even instruct those people to keep their mouths shut. I wanted us to be able to focus on Sally's care and recovery without the unwanted advice from people like the woman mentioned above. They agreed and we loaded Sally up and went to the ER 30 minutes away. 

When we got there, I seem to remember carrying Sally in my arms - no carseat. I wanted to hold her. I wanted to walk in and them sense my urgency and just take her straight out of my arms to be evaluated. I walked up to the window "I think my baby has RSV, and she left the hospital in Pensacola for 'failure to thrive' four days ago." The nurse handed me a clipboard.....clearly I wasn't getting through. I was beginning to feel a little frantic worrying that Sally would go into some kind of respitory arrest or worse, but all we could do was wait.

Eventually they called us back, and after quick examination the medical personnel confirmed that she presented as a case of RSV. This confirmation was quickly followed by a chest x-ray. Sally had to be held up in a strange sort of bicycle seat/head vice apparatus. They snapped the needed images, and I asked to see what they had found. 

I have always been a researcher. I learned very early in my life that having the most information as possible when something crosses your path is the easiest way to navigate through it, so during Sally's hospital stay the week before, I kept to the same idea. Every time someone would utter a medical term, I would look it up and read as many articles as I could. Apparently I informed myself so well that multiple physicians either asked me "Are you a nurse" or even "Where are you a nurse". When I would inform them that I was actually an out of work hair dresser, their eyebrows would raise. But when your baby is sick, you research. When she got RSV, I was ready and waiting to resume my research, so I asked to see the images from the x-ray. Sally's lungs looked like a sky full of an angry storm......Sally was, once again....in danger.

The hospital in Miramar Beach does not have inpatient accomodations beyond the birthing hospital where I'd had her just a month prior. It is a satellite of the hospital in Pensacola, so we got the news we'd been expecting. We were headed back to Pensacola for her to be treated. There was one ambulance that ran the route from Miramar Beach to Pensacola. That ambulance was going the wrong direction for Sally's first illness - hence her doctor instructing me to drive myself. This time, though, that ambulance just happened to be in Miramar Beach, and the gurney inside had Sally's name on it. She was loaded into the back, and I took the passenger's seat in the cab while her dad drove behind us.

They did not turn on the sirens for our hour and a half ride. This was strange to me, but I had to trust their judgement. The EMT's in the back were watching over her very carefully, so I just sat in the seat and watched the street lights slip past my line of sight one by one. They began to glow even brighter as the tears welled up in my eyes like shining sentinals saluting us on our journey each one granting us passage past its own post until we reached our destination. 

Sally's arrival for stay number 2 is a little blurry to me. I remember very little except that I felt funny wearing heels and "date clothes" in the PICU with my baby so sick. Seemed sort of irreverent to me.

We weren't there very long before the attending nurse came in to check on us.....guess who it was. The smiley nurse. Sally had just so happened to be admitted on another night when this nurse was on duty. I immediately breathed a sigh of relief when I saw her. Something in me knew that, if she was the one watching over Sally, Sally would be just fine. 

Because Sally had a virus that could be deadly for the other babies in the unit, upon entering we had to scrub up, put on a paper gown from a drawer that was outside her room door and then disrobe from the paper jacket and scrub up upon every exit. We were also strongly discouraged from touching Sally with ungloved hands. This was especially difficult for me and was not a rule that I followed all the time. I would always wear the robe and scrub on my entry and exit, but I found myself sneaking off those rubber gloves so I could touch my baby's little cheek or hold her hand while I spoke to her. I just wanted her to feel me touching her. She was once again hooked up to so many wires and even back on a feeding tube for a time. I couldn't help but realize that this was going to set her back from all the work that they'd done to help her in the previous week. I couldn't help but worry that my already weak baby was going to succumb to the ravages of this virus. So I just stared at her, and I sneaked little touches, and I talked to her.

It took another 4 days for her to show signs of recovery and reestablish consistency with her feedings, but with the tender care of our special nurse and rounds of antibiotics, breathing treatments, and everything else, we were given the go ahead to take her home again. 

This time I didn't feel quite so relieved to take her home. I stayed worried. My tiny baby was further weakened, and despite the reassurances from the hospital staff, I was going to be watching her like a hawk. I was going to make sure nothing else went wrong. I wanted to make sure we got to keep this little lady.

This vigilance ended up being to Sally's advantage because there was more coming down the pike for her.......stay number 2 was not going to be her last.

On keeping Sally

Today, my friends, I'm going to tell you a little story - about Sally.

I was overjoyed when I found out I was pregnant with my third child. I was amazed at the number of people that were confused that I would want to get pregnant after already having had a girl and a boy. "So you already have a girl AND a boy?" they would ask. When I would answer "Yes", they would then ask "Then why would you want another baby?". I would just always say "My kids are nice people. I want to add to the group."

My pregnancy with her was difficult in absolutely every respect. I spent most of the second trimester and all of the third trimester having really painful Braxton-Hicks contractions, so when the slot came open for an induction at the hospital, I begged for my OB/GYN to ink down my name.

My labor and delivery with her was definitely the most tumultuous as well, but after about 10 hours of labor versus the 18 I'd had with the other two babies, Sally made her entrance. Out came Sally weighing 7 pounds 8 ounces and 20 inches long with cheeks for days. She was delicious in every way. We were excited to take our little bundle home from the hospital. 

I had always nursed my babies. I knew that, as long as I was able, despite the extreme pain for me right at the beginning, it was the best option for both momma and baby. During my nursing days with the older two kids, I had done a lot of research on how to nurse correctly to make sure baby was getting enough and how to avoid the discomfort of incorrect latches and such the like. I had even helped other people navigate the world of nursing, so I felt totally comfortable nursing baby number 3. She seemed to do so well, but her pattern for feedings was different. She did what her pediatrician described for me as "cluster feeding" as in, she would nurse smaller amounts but for longer stretches of time followed by longer periods of rest. This was new to me, but she was still wetting and soiling diapers at the suggested rate, so I just let baby do her thing.

I started to notice something though. Sally started falling asleep just a handful of minutes after she began to nurse. It was very difficult to keep her roused. She didn't seem to be eating much, and I didn't feel her drawing out very much milk, so I tried to give her a bottle. I thought maybe just the close physical contact was so soothing to her that she was just snuggling and going to sleep. She wouldn't take a bottle, though. I attributed this to a sort of bottle nipple aversion and just figured she preferred nursing.....until one Monday. She was 20 days old.

I always had small babies, and, for whatever reason, my babies always LOOKED even smaller than they actually were. I was often asked all 3 times if my little bundles were preemies. None of them were. They were all born at 40, 38 and 39 weeks respectively. So when my baby looked "a little small" to me after a couple weeks post delivery, I really wasn't alarmed until day 20. Something had happened between the night of day 19 when I put on her pajamas and the morning of day 20 when I went to change her outfit. I saw bones. All of them. 

"What?!....no.....I don't think this is right. I don't feel like she should look like this. This is TOO skinny. I don't feel like I should be seeing ribs through her chest......something is wrong."

So, knowing that some of my Facebook friends are medical personnel, I appealed to social media. I have a friend from high school who I referenced in a different post. She commented on my status encouraging me to just have Sally weighed - that it would not draw any ire from the nursing team at her pediatrician's office. I had expressed on my inquiry to everyone that she had her one month checkup on the upcoming Friday, but this friend told me in a private message "If you're worried, don't wait until Friday. You can always drop in to your Ped's office without an appt for a weight check." 

A healthy 3 week old baby will consume about 2-3 ounces per feeding. Sally was only taking in about 10 ml. That's an amount smaller than a bottle of nail polish. That's all she would take and then she would fall asleep. 

So I packed up my baby and headed to the pediatrician's office. When the nurse undressed her and put her on the scale, I gasped. She looked even worse under the lights....and then came her current weight flashing on the scale's little display - 5 pounds 8 ounces. Sally had lost a third of her body weight. I began to tear up. I felt like a failure. I racked my brain trying to think of what I had done differently with nursing her than I had done with the other two children that had nursed very successfully...nothing. My poor baby!

She sort of solemnly wrapped Sally up in her blanket and handed her back to me. We headed to an exam room where I waited for the doctor. When he came into the room, we went through rounds of questions that yielded no answer. Then this sweet old man held out his arms for my tiny, sick baby and laid her in his lap. He silently unwrapped her and very promptly but gingerly wrapped her back up again. He looked up at me and broke his silence with "I want you to drive to Pensacola right now. You can go home and very quickly pack a bag, but then head straight to the ER there. I will call ahead so they know you're coming. I want you to drive because you will be able to get there faster than an ambulance."

"FASTER THAN AN AMBULANCE?! I need to be faster than an ambulance?!" I thought. My eyes were wide open with fear. My baby was officially in danger. I fought back tears while I waited for the last bit of instruction and then loaded her into the car to make the 30 minute drive home to collect a small bag and get in the car with Sally's dad for the trip. I made several phone calls to the important people in my life to beg them to begin to pray. 

When I got to the house, Sally's Grammy opened the door. She was taking care of the older children, and everyone was in position for getting Sally to the hospital as quickly as possible. She pulled back a corner of the blanket around my baby and then started to cry. Then I fell to pieces for only a matter of seconds before the importance of my assignment overtook me. I had to leave with Sally. I had to be faster than an ambulance. It was time to go.

I don't remember the trip there, but I remember sitting in the busy waiting room of Sacred Heart Medical Center in Pensacola. I found myself getting annoyed with all the coughers and non-hand washers that were being seen before my baby. I went to the desk multiple times after our check in just to make sure that I hadn't missed our number. Finally our turn came. 

We went back to the exam room where the doctors asked me similar rounds of questions to the ones Sally's pediatrician had used. Their prospects for what was hurting my baby were grim to say the least. 

"She's very weak and severely dehydrated. We need to get a line in her to get some fluids in her. Then we're going to run some tests."

The nurses came in and tried with all their might to get a needle to successfully penetrate a vein. Blow. Try number one exploded the vein in her hand. They tried  the other hand. That vein blew. They proceeded to try both feet as well and then 3 different spots on the top of her head. She was too weak to cry for the first few, but by the end, my baby was letting out these little squeaks begging us to stop. My heart was broken. 

When they came in to cathedarize her, they required me to move away from her to a stool against the wall. Her tiny body writhed around in pain while she squeaked out the biggest cry she could muster. My baby was in excruciating pain, and I HAD to let those people hurt her. There was nothing I could do to ease her pain. I sat on the stool not blinking. My hand reached up to Sally's dad's. He was standing next to where I sat. We both just stared silently at the baby on the table. I was later informed that the nurses were alarmed because, when they cath'ed her, absolutely no liquid came out.

So many people came in and out of that room asking the same questions as the person before, and they were all perplexed. 

"We want to rule out meningitis. In order to test for that, though, we have to do a spinal tap. Because she is so small and so young, she will have to be awake for the procedure. You will have to leave the room for this because it has to be a surgically sterile environment."

Then the doctor explained to me what a spinal tap actually is further cementing the horror in me when I came to grips with the fact that Sally would be awake for this.

We were directed to some chairs far down the hall from the room where they were performing the procedure. After a couple of minutes, I heard an absolutely blood curdling scream. I looked at her dad "OH MY GOSH! DO YOU HEAR HER?" I asked with emphasis - though I could not utter more than a whisper through my angry, horrified tears.  "That's not Sally. That's a bigger baby. That's a different baby" he told me trying to reassure me. But there's this thing with a mother and her baby's cry. You always know which one is yours. You can pick your baby's cry out of a crowd of screaming infants. THAT cry.....was from my baby. THAT cry meant they were shoving a 22 gauge needle into her tiny and very awake little back. I just sat there and cried. 

Very soon after that, we were ushered back into her little room where I grabbed up my baby and cradled her while I worried and prayed. 

It took a couple of hours to wait for a room in the PICU to open up. The hospital was up to the gills with sick little people and sick big people alike.  During our wait, they informed us that the spinal fluid was crystal clear. We were not facing deathly meningitis, so that news was good, but the doctors still seemed so confused. This was very unsettling to me. When they would come into the room, the expression on their faces was always very urgent concern. They could not figure her out. 

Our turn came to go to a room upstairs....finally. They got Sally hooked up to more machines and inserted a feeding tube. Then into the room came a pretty red-headed nurse with a giant smile on her face. I couldn't help but wonder if she realized how sick my baby was, and if she had, if she would be smiling so big. She quickly went to work standing over my baby's bassinet and untangling the spaghetti plate of wires. She did this over and over again and kept the smile on her face. I decided to be thankful for her smile because she had been the only one to offer one during the entire day's events. 

As the evening wore on, Sally's dad stepped out of the room, so I was there alone. The head pediatric physician entered her room and offered me a quick greeting. He then stood over Sally's bed and just stared at her. I had been used to the medical team saying at least something to me about their opinion, and I wanted to start a repoir with this man as well, so I said "She looks pretty bad, huh?" I had totally expected that he would give me a very canned, diplomatic response that they were going to help her every way they knew how - that they were working hard to figure out what was going wrong - that she was in good hands....SOMEthing.....no. He just kept his gaze fixed on her little body, sighed while he shook his head and said "...yeah.." and then turned and left the room.

My baby was dying right in front of my face, and not even this man with all of his years of experience and all the state of the art equipment in that hospital could figure out how to stop it. 

This is the first time this image has appeared anywhere even remotely publicly. I have looked at it many times and have been unable to have any reaction except to burst into tears. Even now, I feel ill. 

This picture was actually taken at the end of our second day at the hospital. By this point, she had been receiving nutrition via a feeding tube for an entire day, so she had begun to fill out a tiny, tiny bit. 

So this is what that doctor looked at so hopelessly.

We spent the next few days signing endless numbers of  papers giving permission to the hospital to run absolutely every kind of test they had. Every time they ran a test, the results would come back totally normal. They checked her blood. They checked her spinal fluid. They checked her heart. They ran tests to see if she was a very mild case of Down Syndrome....everything. There was one last test that I just can't remember.  Every single doctor in that place was scratching their head trying to figure out what was wrong, and their last resort was a test that would require that she be be given a general anesthetic. We were given very clear warning that the anesthesia alone could compromise her health so the running of the test was our decision, but they wanted to try if we were willing. "No." I said. "No. I don't want to do that one. All of these tests are coming back normal. I just don't feel like this one is going to give the answer. I'm sorry I just don't want to do it. I just have this feeling that you're not going to find anything." So that same physician mentioned above looked at me and smiled a small smile. "You know, I've been doing this a long, long time" he said. I braced myself for a chiding for balking at his medical knowledge, but then he continued "...and I have been proven wrong several times by a mommy's intuition. That intuition is strong. You should trust it."

Part of me was thankful that he felt I'd made the right decision but this mental celebration was quickly followed by a fear that I might just be wrong. 

As luck would have it, after sleeping in a chair on our first night in the hospital, my back decided to seize up, and my sinuses revolted, so that just added to the difficulty of the situation. There was that smiley nurse though. Every day she would come in and untangle Sally's chords, and she would talk with us about our other kids and our lives away from the room we occupied just then. She would also update us on everything she could. She would break things down and explain what the next step would be. On day 4 of our stay, she informed us that the speech pathologist would be paying us a visit. My brow furrowed because......Sally did not use speech. She was 3 weeks old. She did not talk. This made me skeptical, but the SP came nevertheless.

I will never forget the wavy haired brunette coming into Sally's room. She scooped my baby right up and scooted herself back into the rocking chair in the room. The smiley nurse stood at staunch attention over her shoulder watching every move the Speech Pathologist made. The SP touched a bottle nipple to Sally's lips and then slid it into her mouth. Sally's chin bobbed for just a second and then stopped. "OH!" the Speech Pathologist exclaimed. Then she kind of smiled smugly as if to say "These people are going to be so relieved, and I am SO excited to tell them this". She did more wiggling and then SUCK! Sally drew in some of the formula. Then she did it again, and then she stopped. The nurse sort of hunched forward as if to cradle Sally with the top half of her body while the baby lay in her lap. "Okay" she explained "This is called 'failure to thrive'. We do not have a way to know why this happens. There is no way to prevent it. It just happens sometimes. What has happened here is that she gets sort of lost when it comes to eating. Babies use a suck, swallow, breathe reflex when they eat. This pattern allows them to sort of eat and breath at the same time to maximize their energy. Sometimes, though, babies just get.....off track. They get mixed up on which thing to do next, and it just wears them out so they end up using more energy than they should. They tire out before they're full so they don't eat enough.....This is what has happened with your baby. So we just have to reteach her how to eat." She did not seem remotely alarmed. She did not seem like this was at all insurmountable. It was just a thing. It was a totally fixable problem.

 Sally was going to recover. There were no congenital, neurological or cardiovascular anomalies in her body. Just this weird, slightly rare but not unheard of one of "failure to thrive". The SP continued to talk giving instructions to our sweet red headed nurse about the process for reteaching a baby to eat. The steps were very simple. She could and most likely would make a total recovery from this, and I should feel no guilt, because this was not caused by negligence or ineptitude on my part. It was just one of those crazy things. 

Over the next two days, the smiley nurse came into Sally's room more times than I can count. She would go through her same routine of untangling all the leads while she cooed at my baby. Then she would spend hours and hours wiggling a bottle in Sally's mouth per the instructions given by the speech pathologist. With every feeding, Sally would suck down a little bit more formula until the feeding tube wasn't needed any longer. Soon Sally was off of every monitor except the one charting her heart rate. That nurse was tireless. That nurse showed love to my baby and had a presence that could nearly calm a soul in the heart of a hurricane. 

By day 6, Sally had begun taking a couple ounces per feeding. She was beginning to show weight gain, and all her vitals were very steady. I was given a strict regimen for how much she should eat and for how long and how often. It was a fragile situation still, but she had been given the help she needed to get back on track - to find her way so her little body could grow. 

During the middle of the morning, we were informed that Sally was being given papers for release. I took those and my instructions and cases and cases of formula the hospital gave to us, and we headed to the car. We stopped at Red Robin across the street so I could eat real food. 

And then our next stop.....home to the biggers. I had gotten to see my older children just a couple of times in the last week, and I couldn't wait another minute to kiss their faces and hug their little bodies. I was bringing their baby sister back home to them. Sally was going to be just fine.......

.....until she wasn't.

More tomorrow.