Tag Archives: loss

Three

10476503_10102390539586379_4833958231860515447_n_edited_editedI thought about how to wrap this up for a week. I’ve already written about what I’ve learned and the meaning I didn’t find. Additionally, I’ve written about losses, changes, guilt, hope, awe, and grief. There are 395 posts including this one.

I think I’m comfortable ending here because I’ve said what I wanted to say. Plus, it’s not easy to write with a toddler screaming at me. (Wow, do I miss those long, frequent naps she used to take.)

This blog is the beginning of my parenting story. It is a chronicle of Charlie’s early start. I wrote it for me. I needed to connect, to vent, to make sense of the complex messy emotions, and to document whatever progress came. Thank you to my readers for coming along for the ride.

After Charlie’s birth, we fell behind and no longer fit into the “normal” world. Instead, after much grief, we made our own world. We played outside, made music, climbed, danced, laughed, and picked at food together. Maybe, one day we will catch back up to everyone else. During the course of this blog, I’ve learned to be OK with that “maybe”. I have begun to find peace.

11267762_10102403319834659_1155533460364652965_n_edited_edited_editedIt’s been a lengthy three years. From which, the theme that overwhelmingly stands out is gratitude. No, I’m not grateful for prematurity. Let’s face it, prematurity sucks.

Despite my complaints, I know how lucky I am. I’m grateful for the people who touched my life. I’m pleased to have found what I need even though I didn’t get what I wanted. Most of all, I’m thankful for the privilege to parent Charlie. While I may have nearly cracked, she has been nothing but brave, strong, determined, and full of joy through it all.

Happy third birthday, Charlie! It has been nothing short of extraordinary. I am honored to be your mommy.

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Baby Clothes

Out of everything, baby clothes have held a special place in my parenting world. Not only did Charlie’s birth entail numerous losses, but there were very few parenting choices that I got to make. What Charlie wore was the only thing that could still go the way I had imagined it when I first got pregnant. I clung to my idea for her wardrobe fiercely.

Anytime Charlie out grows a size, I pick out the clothing pieces that mean something and place them in a drawer. The pieces in the drawer will be incorporated into a quilt one day. The rest of the clothes get dumped into a trunk in the basement and forgotten. Each time I add to the trunk, I tell myself that I will deal with it at a later date.

You may wonder how clothes can mean something. Also, you may find yourself asking why I needlessly store (OK, hoard) baby clothes in the basement.

I will begin with the easy question. Many of Charlie’s old clothes are significant to me because they have important memories attached.

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The last day she wore her “Sweet On Mommy” onesie.

For example, there is the preemie sized onesie she wore in the NICU that said, “Sweet On Mommy”. Each time she donned it, I marveled at the fact that I was the “mommy” it was referring to.

Also in the drawer, there is a size zero to three month sleeper with pink cats. One of my husband’s coworkers gave it to us the week Charlie was born. I remember when I first saw it. I held it up and couldn’t imagine my baby ever being big enough to fit in it. The day came during the week of the presidential election. I tried it on her after a bath and sobbed because it finally fit.

In fact, I was still crying when I investigated a knock at the door. I opened it to find Obama supporters who were canvassing the neighborhood in an effort to encourage votes. I am sure they wondered what the blubbering lady carrying a baby was about.

These are the kinds of clothes that occupy the quilt drawer. In the not too distant future, I will make a quilt using these clothes. Additionally, I plan on sewing the patches I’ve collected at each state park on to the quilt.

I don’t think I ever had a plan for the clothes in the basement. I wanted to donate them. But, I needed the donation to mean something to me. I knew it was not simply a matter of dumping giant garbage bags at the local Goodwill. Those weren’t just any baby clothes. They were Charlie’s clothes. They were my solace. They deserved better. But what?

This week, Preemies Today put out a request for gently used preemie and newborn sized clothes for a NICU baby shower this Sunday. I decided this was it. I was ready. It was time to deal with the clothes.

Tonight, I sorted through the clothes and selected my donations. (Basically, anything in the requested sizes that didn’t carry a significant memory and wasn’t stained.) It felt like an archaeological excavation. Each piece of preemie and newborn clothing was like an artifact from a lifetime ago. I shuffled around my selections for the quilt drawer and washed what was to be donated.

These clothes have served us well. It’s time for them to comfort another NICU family. And, perhaps, become a memory worth saving.

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Spoiled Brat

Wow, did I get hit by a nasty stomach bug. Charlie got it too. But luckily, she was only sick for about a day. We did have to cancel weekend plans I had been looking forward to. But, such is life.

This recent stomach bug required several trips to my doctor for things like anti nausea medicine, IV fluids, a different anti nausea medicine, and so forth. After I had beaten the bug and was at my follow up visit, I asked my doctor a bunch of questions about preeclampsia.

My 36 birthday is this week. In my husband and my storybook version of life, we are supposed to have two kids by now. I know I decided a while ago that we were stopping at one. But, in the back of my mind, I’ve kind of clung to a little hope that there would be some way that I could safely have a full term pregnancy. I hadn’t fully let the hope go.

My doctor was kind of my last hope. He’s knowledgeable and I trust his judgement fully. He’s also a little more open to my unconventional ideas than most. He helps me problem solve. If anyone was going to give a thumbs up to pregnancy, it would be him.

I asked him for his thoughts on the matter. He told me what I already knew: Another pregnancy is not a good idea for me.

He continued on to say something like “Adoption is a beautiful option…” My response was to check out. I started babbling incessantly and nonsensically just to cover up the heart break that had just happened. I was barely able to concentrate to discuss the refills I needed. After the appointment, I headed straight to my car still reeling from the blow.

Now, I know absolutely, for sure… that’s it for me. We are done having kids. End of story. Hope extinguished.

I’m not dealing with it well.

I want to cry. I want to scream that it’s not fair. I’m angry at the world for drawing the short straw.

Then, there is the guilt. I know how fortunate I am. I know how much I have. So, I feel guilty for feeling sad, angry, and pretty much anything other than joy.

Plus, I find myself bitter with envy and jealousy of the strangest things. A KeepEmCookin tweet popped up in my feed and my thought was “At least, they made it to bed rest!” How terrible is that? I am ashamed of myself.

Finally, there is the confusion. Why does it hurt so much? Honestly, having my own biological child is not that important to me. I could adopt and be as equally fulfilled. But, being done stings to the core for some reason.

Emotionally, I’m very much like a spoiled brat right now.

Life is not fair and we don’t always get what we want. By now, I’m well aware of that. Currently, I’m trying to figure out what’s next for my family. How do I make this OK for me?


How Little Is Understood

Only a handful of people will ever fully understand any of the feelings involved in Charlie’s birth. That is why I became so annoyed with this article that repeatedly appeared in my social media feeds today.

Numerous moms lauded it and responded with proclamations of sisterhood. However, not one of my friends that have lost a child praised it. Nor, did I see any of my fellow micro preemie moms passing it on.

The thing is, unless you are a micro preemie mom, you can’t possibly understand what I’ve been through. Even then, our experiences may be vastly different. Similarly, I can’t pretend to understand what my friends who have lost a child have experienced.

Yes, you may be able to imagine a bit of the fear that I felt when Charlie made her early arrival weighing in at 790g. But, you can’t ever imagine what it was like for me to sit beside her isolette in silence for days, unable to touch her or hold her. I maintained the vigil simply because I did not want her to die alone.

You can’t imagine the loneliness I felt when people constructed excuses not to visit me and my baby because it was too hard or uncomfortable. You can’t imagine the powerlessness I felt as I pled for my newborn’s life.  You can’t imagine the heartbreak, the anger, the fear, the jealousy, the envy, and the profound sadness I felt during her NICU stay. Each day, I woke up and whispered to myself, “Please, don’t let anything bad happen today. Please, don’t let my baby die today.”

Eventually, she did come home but it was not over.

There was more heartbreak and sadness that came with diagnoses and countless unknowns. Every little milestone was and is celebrated like a hard won victory. Because, that’s what they are.

Most importantly, there are the bits that most likely didn’t cross your mind. My relationships with friends and family have changed. Some for the better while others were broken or abandoned. The stress rocks a marriage. I feel disconnected from a lot of the world around me. I no longer relate to most of my peers.

While I’ve come out of it stronger, more resilient, wiser, and braver, part of me is wounded. I lost my sense of safety. I fight through anxiety every single day. I am haunted by guilt. Periodically, I mourn the loss of my birth story, the loss of my child’s babyhood, and the loss of the imagined life we were supposed to have. I will never be the same.

Each time I see the article pop up in my feed, it’s a slap in the face. It minimizes my feelings and is dismissive of my trauma. Instead, the article shows me how little you do understand. I don’t care that you are a mom. You can not possibly know. You are not supposed to know.

Something horrible happened to me and some of my friends. There are some things so horrible that you can’t understand unless you experience them first hand.

For your sake, I hope you don’t… because you’re a mom.

 

 


Arizona

Very late last night, I returned from a trip to Arizona. You may wonder why I went to Arizona. I attended my second Share Union.

So now, you may want to know what the heck is ShareUnion. Words do not do ShareUnion justice but I will do my best to try and explain. It’s an amazing opportunity many of you may be missing out on.

Some parents (myself included), feel that while in the hospital or NICU there is a lot of support from social workers and staff. However, once you journey beyond the institutional setting that support is often difficult to find. That is where Share Your Story steps in.

One of many March of Dimes programs is the website Share Your Story. It is a website for NICU parents, special needs parents, parents who have lost a baby, parents of babies with birth defects, parents who have lost a pregnancy, people struggling with infertility, parents to be with high risk pregnancies, parents of babies born sleeping, and pretty much anyone else dealing with a birth related issue.

The site offers several features. There are forums where topics are discussed and questions are asked. Additionally, users can start a blog. Worried that you aren’t a good writer or fret because you don’t know how to write a blog? Don’t. The blogs on the site are different than other blogs. No one on the site focuses on things like style or grammar. The interface is not complicated. Your message and what you have to say are the important things. You can help other parents just by participating in the blogs or forums.

Plus, there is a photo gallery to post pictures. I’m sure I’ve forgotten many other features. I encourage you to visit the site and peruse it. You are bound to find something useful.

Back to ShareUnion:

In simple terms, ShareUnion is the annual gathering of the Share Your Story site’s users, lurkers, and want to be users. However, it is so much more than that.

Everyone gets something different out of it, this is what I get:

Since Charlie’s birth, I have lost my connection with the world around me. I don’t share in the common experience of those around me in my everyday life. I feel like I don’t belong and hardly anyone truly understands my world. That is not the case at ShareUnion. Most of the attendees are walking or have walked in my shoes or similar shoes.

Also, I have lost my sense of safety since Charlie’s birth. I have anxiety daily over things I would not have given a second thought prior to when all this began. Each time I attend ShareUnion, I feel it is a step further in getting my feeling of safety back.

Finally, the moms who have lost babies can talk about their babies or the NICU parents can talk about their experiences openly. There is no social awkwardness or having to pretend that everything is OK. It is what it is and we help each other survive it. We celebrate our children’s lives.

The attendees have become like family to me. I don’t want anyone interested in attending to miss out because they did not know about it.

The ShareUnion gathering is free and includes sessions, speakers, and (delicious) meals. However, each attendee is responsible for transportation and lodging (having roomates cuts the cost significantly).

If you are interested in attending next year’s ShareUnion (sometime next summerish), get started on the site now. The more the merrier. I hate that all of us met this way but I’m so glad we did.

 


The Countdown Begins

Sometimes when I’m around other parents, I feel like a puzzle piece that doesn’t quite fit with the rest of the puzzle. We do have the shared experience of being parents. But, that’s where the similarities end.

I’ve lost my connection with the common parenting experience. I read things other parents sometimes write and I wonder, “Who are these people? How is it possible we live on the same planet, the same country, or even the same state?”

When I’m out running errands, I hear other mothers talk. Their concerns are nowhere close to mine. For example:

For me, vaccines didn’t feel like an option. After spending three months around very young children who were critically ill, it seemed foolish not to vaccinate.

I hate that I know about the Durable Medical Equipment part of a health insurance policy, where the closest pediatric emergency department is, and about epo injections.

I can’t help but think a newborn over five pounds is big.

I don’t want my child to learn to read before kindergarten, be fluent in Mandarin, or become a musical virtuoso. I just want my child to learn to talk. Maybe one day, she will be able to tell me she loves me back.

Toilet training is way ahead of my map. Due to circumstances, we will toilet train much later than most. For the record,  I don’t think that wipe warmers are frivolous when a baby has sensory issues.

I don’t worry about organics, GMOs, or junk food. I would be thrilled to see my child chew AND swallow a bite of anything.

These are only a few of the disconnects. Premature birth has shaken my world to its core. Since Charlie’s birth, there has been only one time and place that I felt like I fit completely into a puzzle. It was at last year’s March of Dimes ShareUnion.

This year’s ShareUnion is just around the corner (in 85 days). Let it be noted, my countdown has begun.

I look forward to spending time with other parents who understand and possibly live in my world. There will be no talk of the “right” way to do things or perfection. Instead, there is understanding and encouragement.

I can’t wait to be in Phoenix in September. I would even walk if I had to.

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Mother’s Day Revisited

This is my second Mother’s Day as a mom. I love being a mother. Nevertheless, my feelings towards the holiday haven’t changed since last year. I continue to find Mother’s Day to be a needlessly cruel obligatory day.

Instead of the intended gush of heartwarming feelings, I think of loss. I think of the women who lost children. I think of children who have lost their parents. I think of families where the parental relationships are complicated or broken such as with foster kids. I think of the women who desperately want to be a mother but can’t.

How horrible it is to have a holiday focused around something many have lost or can’t have. I question the reason for its existence.

I believe actions speak louder than words. The sum of actions throughout the year mean more to me than one lousy day of practically compulsory recognition.

I love being a mother. But, I’m not a fan of Mother’s Day.

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Grief Doesn’t Bring Out The Best In Me

I’ve made an observation about myself. There are parts of our preemie journey that continue to fester like raw wounds. I can say, without a doubt, grief does not bring out the best in me.

Out of the blue, I was rude to someone after the preemie play date the other day. I am not proud of it.

As we preemie moms prepared to leave, another group of kids and a mother entered the play facility. I was struggling to put on Charlie’s socks. Frequently, one or all of her toes splay in an odd direction and they catch on the sock. I said to the other preemie moms, “If any of you have any tips on putting socks on spastic feet, I’m listening.”

After she eavesdropped, the new arrival non preemie mom incessantly babbled about her choice not to wear socks and to wear sandals. At least, I think that was her point. I wasn’t really listening. I was busy biting my tongue.

I wanted to yell, “Shut up, just shut up! Do you know how hard it is for us to find shoes to fit her tiny feet, hold her orthotics, AND provide the needed support? I wish she could wear sandals! I wish I didn’t even have to ask for sock advice!”

Instead, I was blunt and rude with my reply, “That won’t work for us, she has spastic diplegia.” That was my way of ending the conversation. I, immediately, felt ashamed afterwards for snapping.

My terse reply was not really due to anger. Nor, was it directed at that random mom. I was envious the woman got to dress her kids in cute sandals. I wanted to do the same. Additionally, I was saddened that Charlie is going to be two very soon and is still having issues. Mostly, my rudeness was due to grief.

Another example of this occurs anytime I visit or discuss Charlie’s first NICU (the open NICU). I cannot objectively discuss or visit that place. I am bitter towards it.

I’ve been asked by different organizations to volunteer in the NICU. I would love to help out but, I decline every time. While I can visit the hospital with no problems, the NICU is a different story. It sends me over the edge.

I become extremely irritable and upset by everything about the NICU. I know it’s not logical but it’s how I feel. However, I don’t have a problem with other NICUs. Just that particular one. I suppose it extracts grief I still harbor over my losses.

How do I handle these moments? Not very well. Nevertheless, I have come up with an idea of something I’m going to try in the future. Rather than get worked up or curt, I’m  going to take a breath and say, “I’m not ready for this conversation.”

Yes, it does sound like an odd thing to say. Especially, if it is a non sequitur (as it would have been if used in the sandal conversation). However, those who matter will understand. Besides, I’d rather be weird than unnecessarily rude to strangers.

This weekend, Charlie rode the Metro for her first time. Here she is with her dad.

This weekend, Charlie rode the Metro for her first time. Here she is with her dad.

 

 

 

 

 


Preemie Babies 101

Today’s post can be found (as a guest post) on Preemie Babies 101.

During my baby’s three month NICU stay, I quickly learned the many adages that are passed around the NICU.  Some were aggravating such as “It’s not a sprint, it’s a marathon.” Others, like “Never trust a preemie,” were daunting. In addition to these, there were two unwritten rules engrained on my psyche that I unknowingly did not understand at the time. I would have been spared the sadness that came with losing yet another dream if I did. These rules were “Every baby is different,” and “Don’t compare babies.”

Essentially, they possess the same significance. I suppose the message is important enough to justify the need for two sayings. Nevertheless, the intended meanings were lost on me. This is how:

Read More….


The List of Losses That Came With Having A Preemie

In case you have missed all the social media posts, November is Prematurity Awareness Month. This month, I’m going to attempt to write a handful of posts addressing topics that are not commonly thought about by non preemie parents.NICU Preemie

There is a great deal involved in having a preemie that I was unaware of until I found myself a preemie mother. For example, I was caught off guard when I found myself crying in front of my baby’s isolette mourning losses I had not considered.

I have addressed the losses that I am currently dealing with in a prior post. This post is a list of the losses that were immediate after Charlie’s early birth.

1) The loss of a perfect pregnancy. I know, no pregnancy is perfect. In fact, pregnancy can be out right miserable. However, I looked forward to participating in the discussions of how hard the third trimester is, detailing my weird cravings, and having funny stories about being huge. I had plans to bob in the pool all summer, to let my husband feel my baby kick in my enormous belly, and to observe my belly grow as the baseball season progressed. I had maternity clothes that I wanted to wear and pregnancy pictures that I wanted to take.

None of that happened. Instead, I was barely pregnant. For most of which, I was very sick. I had only begun to feel Charlie flutter in my belly before she was delivered. I never got to wear my maternity clothes nor take the pregnancy pictures. I think all of this particular loss is exacerbated by my knowing that I will never be pregnant again. None of these things will ever happen for me.

2) The loss of my delivery story. I had imagined my baby’s birthday from the moment I knew I was pregnant. I pictured the expression on my husband’s face when I notified him that my water had broken or that I had gone into labor. I had envisioned the hectic drive to the hospital through Northern Virginia traffic and wondered if we would make it in time. I visualized the actual delivery and joked with my husband about the big day. I daydreamed about the moment it would be over and my perfect baby would be placed on my chest to be held.

Again, these things did not occur. I was hospitalized ten days prior to Charlie’s birth. Twice, my husband had been summoned to the hospital. Each time, I asked if we were having our baby. The nurse responded by carefully choosing the vague words, “If it were my husband, I would want him here.” The second time that phrase was uttered, my husband met me in labor and delivery.

That morning, I had an emergency c section with general anesthesia. I missed my baby’s birth and as did Charlie’s dad. I did not get to see my baby until two days after her birth. It was two weeks before I was able to hold her.

3) The loss of celebration. When a baby is born, there is usually a great amount of celebration surrounding the event. After our baby was delivered at 26 weeks gestation, we hardly heard a peep. It was as if she was greeted into the world with stunned silence. Very few people sent gifts, visited, or acknowledged that we had a baby. It felt like people watched silently as she clung to life. I felt invisible as I was wheeled through the hospital lobby with empty arms when I was finally discharged. In all of the scenarios that played in my mind, I had never imagined leaving the hospital with out my baby.

4) The loss of the life that we had planned. We had picked out our new dwelling in Falls Church. I pictured riding the Metro to museums and the National Zoo. We were going to have meals with friends that lived near Metro stations. We had a life planned and we looked forward to that life.

Unfortunately, that life was impossible after Charlie’s early delivery. Now, Falls Church evokes feelings of dread each time we return to the hospital. Even if that weren’t true, the logistics of preemie life are impractical in the earlier version of life we had planned. We were forced to find a new way.

While I’m happy with our new life, I still elegiacally look at the places we were supposed to live, shop, and eat. I breathe out in an inaudible whisper to myself, “That’s where we were supposed to go” each time I pass them.

5) The loss of relationships. I have lost many relationships after Charlie’s birth. There are several reasons for this. For one, it changed how I view relationships in general. Unfortunately, some of the higher maintenance relationships are no longer worth it to me. Another reason, is that I have much less energy to invest in relationships. A third reason is that the trauma has created a vast disconnect in several relationships.

On the other hand, there are relationships that have been strengthened. I have also been surprised by a handful of people who have gone above and beyond their roles. I have not lost faith in humanity… just in some of my relationships.

6) The loss of choice. Due to Charlie’s early delivery, many things were taken out of my hands. The choices that other parents often agonize over (breast milk or formula, attachment parenting, etc) were made for me due to medical necessity. Regrettably, with the loss of choice comes a feeling of powerlessness. To me, it was a huge blow. I suppose that is why it continues to anger me when people feel the need to tell me what they think is best for me, best for my baby, or what I need.

I am sure that I will think of more losses while the topic is fresh in my mind. Preemie parents, what would you add to this list?

Happy Preemie


Answering A Question About Loss

In reference to my post on Saturday, my friend Sally asked me:

“Would love to hear more (another post?) about what you mean here: ‘In addition, Charlie’s birth somewhat stole my sense of safety and confidence. This weekend was a step in reclaiming it.’ How did the event do that for you?”

Ever since she posed the question, I had been thinking about how I was going to answer something so complex. I have decided to note the losses and conclude with how March of Dimes Share Union this past weekend has helped.

Right now (I’m sure there will be more later), I can name four losses that this weekend helped tremendously with.

  1. Charlie’s birth had taken away my sense of safety. Up until her actual birth, I was sure that matters of tragedy only happened to other people and was shocked when it happened to us. In addition, on most mornings of the 89 days Charlie was in the NICU (and the twelve days prior to her birth), I would wake up and say, “Please don’t let any thing bad happen today.” I had become accustomed to holding my breath and flinching in anticipation of bad news.
  2. My confidence has been in pieces since Charlie’s birth. Her birth proved me wrong about so many things that I thought I knew or believed. Additionally, tragedy is an incredibly isolating experience. Both of which have eaten away at my confidence.
  3. I had lost my connection with other people after Charlie’s birth. I am surrounded by some pretty great people. Admittedly, I sometimes feel disconnected from them. My worries, stresses, and complaints are so different than theirs.  Try as I might, I still feel like I live in a different realm even though they are incredibly understanding, kind, and considerate. I have a difficult time establishing a sense of belonging.
  4. Charlie’s birth had disrupted my place in this world. My identity and roles have greatly changed since Charlie was born. I have had a difficult time figuring out my new place.

To address Sally’s question on how this weekend has helped with all of this:

It helped that I was surrounded by others with a shared common experience. It was healing to openly discuss my experience and hear different thoughts and perspectives from others with similar experiences.

My new role and identity were clarified by being with, seeing, and hearing from the other parents. I was in the presence of people that I felt connected with completely. For the first time since Charlie’s birth, I had an outright sense of belonging.

I was inspired by the strength and resilience of many of the attendees. While their situations may be similar, many were much more painful or challenging than mine. I am strengthened by their example.

I am encouraged to have seen and heard from those on a similar journey who were further ahead.

I was challenged several times this weekend to do things that were uncomfortable for me ( for example, meet many strangers and discuss deeply personal subject matter over the course of a couple days) or intimidating for me (one example, venturing into DC for one of the first times since Charlie’s birth and seeing visual reminders of the life that we were supposed to have).

These things were stressful and I had to actively confront my anxiety, sadness, and fears. My confidence was boosted by my successful (defined as not dying or being maimed) navigation through the many challenges. I’ve found, for me, with confidence comes safety. One step towards lessening my hypervigilance.

I am not sure that I will ever be able to verbalize in a comprehensive manner how this weekend has helped me.  In short, being around 78 courageous, brave, resourceful, funny, and wonderful people for a weekend can be beneficial for anyone.

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I have many photos from this weekend. However, I want to respect everyone’s privacy. So here is another photo of Charlie. Photo Credit: Monica DeMariano


I Don’t Have A Clue

There are two things that I have learned to stop doing since Charlie’s birth. As I have explained in my first post ever, I no longer apologize for my moments of weakness or sporadic melancholy moods. More importantly, I have stopped assuring people that everything will be alright.

I know, the second statement sounds rather harsh. However, I have learned to choose my words wisely from my experience as a NICU mom.

For example, when Charlie’s early birth was imminent. We were told by those around us that everything was going to be OK. Charlie’s birth was everything other than alright. I mourned, grieved, was angry, saddened, and in shock. I felt guilty, embarrassed, and ashamed for feeling that way. After all, I was repeatedly told how OK things were and how they would work out. I was disappointed in myself for not experiencing the glowing happiness that I felt was expected of me.

Later, I was connected with a parent that had a preemie around the same gestational age as Charlie a year prior to Charlie’s birth. Somewhere in discussing our babies and hearing their reassurance, I let myself believe a fallacy. I thought because things turned out exceedingly well for them (their baby caught up before the age of one), it would happen for our baby too. A month after Charlie came home, I realized things were not going to be the same for us. Even worse, it felt like my fears, concerns, and questions were dismissed every time I was told how everything was going to be fine.

Finally, on the occasions that Charlie was hospitalized, I observed the events surrounding the passing of other people’s babies. I overheard as the families were told that it was okay or it was for the best. I cringed. I wondered  if “it will be alright” was repeated throughout their baby’s ordeal.

It is not fine, it is not alright, nor is it okay when a baby is born early, still, or passes. These are among the things in life that are not supposed to happen… but for some reason they do. I do not know if or when it will ever be okay for these families.

Instead of empty reassurances, I tell them I’m sorry. I listen. I answer questions about our experience as honestly as I can. I remind them that every baby is different. I let them know that I am thinking about them. Mostly, I only speak of things that I know to be true. I feel I owe that to them.

I have stopped telling people things will turn out okay or that everything will be fine. Mostly, because I don’t have a clue that it will be.

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Skylar

Skylar

At some point during the course of this blog, there have been pictures of Kaia (our dog) and Maile (our cat). We refer to them as Charlie’s big sisters. Charlie had another pet-sibling named Skylar. It is time that I wrote about Skylar.

Skylar was a bunny. A French Lop to be exact. She was litter trained, played with the cat and dog, and binked during sprints across the floor. We had fun building her enclosures, making salads for her, buying her toys, and creating her box mazes.

Skylar like to have her head rubbed and hopped into our laps. The cat used to clean her and vice versa. She loved tunneling through boxes and burrowing in the shavings. With each box she destroyed, we said she was building her dream home.  She was a picky bunny that would only eat botanical hay. We had a voice for her and clichés that we claimed she spoke.

Two days before Charlie came home from the NICU, Skylar got sick late at night. I knew the day would come (bunnies are fragile) that she would get sick. I was prepared to nurse her back to health when it happened (bunnies often need syringe feeding and sub cutaneous fluids when ill). I knew I could do it and she was bonded with us (which improved outcomes).

However, I never imagined that Skylar would get sick two days before bringing home a twenty six weeker.

Upon finding her ill, my husband and I rushed her to the 24 hour vet. I sat with her in the back seat as we rode in the car. She leaned into my hand to be pet. I was hoping it was just a nightmare.

When we arrived, the vet took her back to be examined immediately. The prognosis was not entirely poor. She had a reasonable chance of surviving with intensive care.

My husband and I were already exhausted from Charlie’s three and a half month ordeal. Things were only going to get harder once Charlie came home. We were struggling as it was. As many people who said, “If you ever need anything…” there were very few people that actually followed through with requests. The sad truth was… we were on our own.

I knew it would not be fair to Skylar to draw things out while failing to provide our full attention. Similarly, it would not be fair to Charlie for us to be distracted. We had to make what felt like an impossible decision.

Skylar was peacefully put to sleep in my husband’s arms.

It was horrible on so many levels.

I hate that we were forced by circumstance to make that choice. Losing my bunny was another thing that premature birth had taken from us. I felt like I had just picked myself up from the blow of being a NICU parent and I had been kicked to the ground again.

We had to mourn in silence. We only told a few people about our bunny’s passing. I could not stand to hear anyone say that “it was for the best” or that she was “just a bunny”. If things worked out for the best, Skylar would still be with us.

Even now, I rarely talk about her.

I still feel guilty. It is like I let Skylar down by not trying. I feel I failed her. She needed me and I was not there.

At our new home, we have wild bunnies that live in our back yard. I see them frolic and play almost daily. Mostly, they remind of all the good memories I have of Skylar. Once in a while, I leave out a veggie in her honor.

skylar1 


Intimidated

This evening my husband, Charlie, and I went out to get a bite to eat. In the midst of dinner, my husband asked if I would like to attend a work party tomorrow. It will be the first one since Charlie was born. I could not help but feel intimidated.

A Northern Virginia office party? That was part of our former life. I do not fit in there anymore. My confidence has somewhat disappeared along with many other things due to Charlie’s early arrival.

For those of you unfamiliar with the DC metro area, it is the land of over achievers. Competition is fierce, having the best and newest of anything is important, near perfection is expected, and insanely overly busy schedules are sources of pride.

I am not sure if I ever really fit in when we lived there. But, I managed about somehow. After Charlie came, I felt alien to my surroundings. Maybe, that was a factor in our decision to move away.

The party tomorrow intimidates me on many levels. First, my appearance will be rather lacking. I have not been clothes shopping since prior to Charlie’s birth. Missing out on the third trimester did not spare my hips from spreading. As a result, none of my decent clothes really fit anymore. My hair is shaggy as I attempt to grow it out. Point blank, I kind of look like I live in the mountains. 🙂

Normally, I would not care about such things. However, I feel in situations such as these it marks me as wounded prey.

Additionally, I dread hearing the usual questions and comments. I worry that I will not be able to relate to conversations about day care and top private school waiting lists.  There is the envy and jealousy that nips at me when I hear other parents complain about ordinary parenting stuff. I do not want to have to fight back anger when other parents tell me how they did everything right with the unspoken assumption that I had to have done something wrong to cause a micro preemie birth.

I have only recently dared to tip toe back out in to the world. I am not sure that I am ready for something like this.

Furthermore, I am afraid of embarrassing my husband with my social awkwardness. I am fretful of stirring up painful emotions that have only started to heal. I am anxious that I will realize that I really am as disconnected from the rest of society as I feel at times. I am worried the evening will be an aching reminder of the lost life we planned.

Despite all of my apprehension, I have decided to go. Through all the ROP exams, synagis injections, and ng tube placements, I asked Charlie to be brave. If she can do that, I can attend a mere party. It certainly is not one of those few things in life that are a matter of life and death. At most, it will sting…  but my ego will recover.

Besides, it is time that I take back some of the things I lost to having a premature birth. My confidence is a good place to start. Who knows? I may even have a good time tomorrow evening.

Fingers crossed, here goes nothing…


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