Category Archives: Blog

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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Almost Three Years In

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Charlie, ten days old

My husband and I are almost three years into our journey of parenting a preemie. A short amount of time that feels like forever.

In anticipation of the upcoming Parents of Preemies Day, I’ve been asked to write about what prematurity means to us today. The abridged answer? It’s complicated.

You see, currently, I’m angry at prematurity. My anger flows in waves.

At first, I was angry that prematurity nearly stole my first and only child’s life. Then, I was furious because of the long term repercussions it has on her life (CP along with speech and feeding delays). That fury was followed by outrage due to the complexities and strain placed on my family life by having a preemie. Now, I’m irate because it extinguished my hope for having another baby.

But, I’m not only angry.

Despite the anger, I feel incredibly lucky. I am fortunate my baby survived her early arrival. I’m thankful that she exceeded doctors’ initial expectations. I’m grateful for the imperfect and unconventional life we have as a family.

However, I’m saddened.

I mourn the pregnancy I didn’t have (mine ended at twenty six weeks). I lament the typical newborn and toddler experience that was taken from me (we spent over 100 days of her first year in the hospital). I grieve the second baby who will never be.

On the other hand, I’m hopeful.

I’m optimistic that one day we will finally leave all the therapy, specialists, and orthotics behind. I believe that she will one day “catch up” to her peers. I look forward to possibly adopting in the future.

The preemie parent club is a club I wish I didn’t belong too. Even though there are other members, it is a lonely journey. I find it difficult to relate to other non preemie parents because in my world five pound newborns are huge and intake is measured in mL. I feel disconnected from the moms I see in my everyday life. A trip to Target usually involves picking up a prescription rather than coffee or shopping. Most parents claim that time flies. However, I’ve found it creeps by slowly while waiting for another appointment to begin or striving for that next elusive milestone.

IMG_2011As it turns out, I’ve found no meaning in prematurity. To me, it is a collection of emotions such as sadness, anger, grief, rage, loneliness, gratitude, hope, and, most importantly, love. Love is what keeps us from falling apart and helps us find joy in our everyday.

Being a parent of a preemie is not the life I’ve planned for or chosen but, I love it nonetheless. Though the journey is tough, I’m so grateful that she’s here. I can’t imagine our lives without her.


The Strangeness of Time

The feeding program evaluation went well. Charlie will attend the intensive feeding program this spring/summer. I should receive the dates any time now. SR Park Selfie

Charlie will be three soon.

Three. Years. Old.

It feels like it has been at least twenty years since she was born. Maybe, that is because of the seemingly endless infancy stage. For example, we finished regular late night feeds a few months ago, she continues to be formula dependent, and there is no end to diapers in sight.

Or, time could be dragging due to the monotony of a schedule packed with specialist and therapy appointments. Possibly, time crawls due to the high levels of stress and emotional exhaustion that accompanies micropreemie parenting.

Whatever it is, these last three years have felt infinite. When I look at NICU pictures or Charlie’s baby book, it feels like they are artifacts from forever ago. I barely remember my life before Charlie. My memories feel like someone else’s, not mine.  I have grown and changed so much that I hardly recognize myself. It has been a long three years. However, there is one aspect that has flown by… our Trail Quest.

The first time Charlie's thrown stone made it into the river.

The first time Charlie’s thrown stone made it into the river.

The point of the quest is to visit all thirty six Virginia State Parks. It started out as a way to survive lock down. Then, it evolved into an adventure Charlie and I shared. Sometimes, we include my husband, our dog, or both.

We have fun on our outings. We make memories. We relax. We play. We learn.

The other day, I sifted through our numerous photos from the parks. Everyone of the photos feel like they happened yesterday. I finally understand what people mean each time they say, “They grow up fast.”

Before looking through the pictures, her growing up felt anything but fast. The life depicted in the park pictures is how it was “supposed to be”. That is what I signed up for when I wanted to be a parent. The park visits are part of our “normal”.

Last Saturday, we visited our thirty third state park. We are getting close to the end and I’m surprised to find I’m a little sad. It was about the adventure and not the goal. I expected to feel nothing but celebratory when we finished.

Darn, those complicated emotions! Will the thirty sixth park be the end of our park obsession? No. One reason why is that the state park system is working to add more parks. I suppose we will never truly be finished. Plus, I’ve noticed that each park is a very different place as seasons change or as Charlie and her skill set grows.

From time to time, I mourn the loss of the pregnancy, baby, and toddler experience I didn’t have. But, I’m so grateful for the one I do have. I feel fortunate for every minute and second… even the painfully slow ones. Tyke Hike Pose Charlie attended a Tyke Hike (a hike for two to four year olds) on Saturday. These two pictures are from that hike. 1510901_10102280045337739_8432824672223672896_n


The End Of Holiday Break

I’m guilty of not updating my blog. The vacation from therapy allowed Charlie and I to do other things.

For example, I’ve written this post: Ten Activities In Virginia State Parks For Kids Who Aren’t Walking Yet and this post: Why We Didn’t Have More Children. Mostly, Charlie and I had fun playing. She’s tried new things like a toddler tumbling class and regular swims.

Here is a video of tumbling class:

Next week, we hit the ground running as her therapy schedule resumes after a very long winter break. Hopefully, her orthotics will finally arrive.

Charlie continues to have issues with weight gain. She returns to the feeding clinic this month. I have no idea what will come next in the feeding realm.

Tonight, she enjoyed a Friday night swim. She is a big fan of swimming.

A little over four months until she’s three!

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Premature Babies: What You Don’t See

In honor of upcoming World Prematurity Day on Monday, I sent out the following tweet:

It was favorited and retweeted among those who celebrate World Prematurity Day. A prematurity poster toddler of sorts.

You see the before and after pictures. Maybe you think that prematurity is no big deal. These babies seem to turn out fine.

But, these pictures are oversimplifications… only part of a story. What is missing from these posts is everything in between.

What you don’t see is the three months she spent in the NICU perilously clinging to life while enduring countless painful tests and procedures.

What you don’t see is the long demoralizing walk from the ER to pediatrics upon her readmission to the hospital for complications due to her early arrival.

What you don’t see are endless therapy sessions and appointments with specialists in which we hope for and ask from her things that are arduous.

What you don’t see is how hard she worked for every little bit of progress.

What you don’t see is how, over two years later, prematurity continues to affect her life every single day.

What you don’t see are the babies who didn’t survive.

With all of the before and after pictures that are and will circulate in honor of World Prematurity Day, please keep in mind the things that you don’t see. Surviving premature birth is no small feat.


This Year’s Prematurity Awareness Month and Me

Last year, I wrote a post a day for Prematurity Awareness Month. On Prematurity Awareness Day, I wrote a post titled “Why Have Prematurity Awareness Day (or Month)? This year, I’ve stared at a blank screen for nights. I tell myself that I’m waiting for a muse of fire.

If the truth be known, I’m sick and tired of prematurity. Two and a half years after Charlie’s early arrival, not a day goes by that it does not impact my life in some way. Additionally, I think about it several times a day.

No, I’m not obsessive. It’s just that my life revolves around prematurity.

For starters, I am constantly problem solving with doctors, therapists, nurses, and pharmacies. Then, there is the hassle of social services. Charlie’s medicaid waiver should have been decided months ago. Plus, the insurance company likes to waste my time with automatic denials or by providing misleading information. That’s just the obvious stuff.

Prematurity creeps into my “regular” parenting life. If I hear a cough, I cringe and make a quick escape with Charlie. No need to challenge those preemie lungs. Feeding… oh goodness… let’s not get into feeding. During play, I watch to see if her pincer grasp is improving, if a heel strike will miraculously appear while she’s walking, and if she favors her left side as usual.

Currently, I’m stressed about Charlie’s upcoming MRI because it has to be performed under sedation with all the risks it entails. Additionally, I’m trying to schedule her new AFOs (yes, she’s being prescribed orthotics AGAIN) before the end of the year since our deductible has been met. On top of it all, meal time is a juggling act of mentally calculating her caloric intake while coaxing her to eat.

Truly, I think about prematurity many times a day. My brain refuses to contemplate it further and my thoughts about it have been tapped out.

But, that’s why I need to write about it. If, for anything, so that our story is told.

So that people don’t make the mistake of thinking that preemies are just small babies. So that people don’t believe that babies come home from the NICU and are suddenly “fine”. So that people know that some preemies don’t ever catch up and some never come home.

We can do better.

For example, we can fund more research, lobby for better health care policies, and educate more people. By doing so, we can improve the lives of these babies and of parents like me.

I’m very hopeful about Charlie’s future, but I’m tired of prematurity. Everyone else should be tired of it too. Let’s do something about it.

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Busy, Busy, Busy

OK, so I’ve missed every Blogtober Challenge this week. But, I’ve had a good reason. I’m swamped.

In addition to Charlie’s usual appointment schedule, there have been dresses to borrow, a radio interview, a Preemie Babies 101 deadline, and this weekend to prepare for.

This weekend is our local Signature Chef’s Event ( a fundraiser for March of Dimes). I’m really looking forward to it. A couple of our friends are staying with us and attending the event.

I promise to post pictures of Charlie in her gorgeous dress (which we were lucky to borrow from a friend) after the event.

Charlie throwing leaves (and gravel) over her head.

Charlie throwing leaves (and gravel) over her head.


Blogtober Day Ten: Best Advice

Today’s Blogtober Challenge is to share the best advice I have received. I woke up this morning and planned to revisit the story of the three legged dog. During my morning routine, I thought about how I would write it up.

However, my back bothered me at breakfast. It was a warning. I needed to walk before things got worse. But, my back hurt enough that my usual hike was out of the question.

If it won’t be a challenge, then why bother walking? Maybe, I could not walk today, catch up on things at home, and walk tomorrow.

I had almost talked myself out of walking.

But, I learned my lesson in the past. If I don’t walk, things will get worse. It certainly won’t be any easier to walk tomorrow or the day after it.

I decided I could do an easier walk. It didn’t need to be strenuous or impressive. I simply needed to move. I could start where I was.

That, right there, was the best piece of advice that I have ever received. When taking something on, start where you are. Unfortunately, I don’t remember who shared it with me.

Basically, it means that everyone starts something somewhere. When a task, an idea, or a project seems to be overwhelming, pick a small starting point and do it. The next day, build on that and do a tiny bit more. Even though it seems like baby steps, progress moves quickly. It doesn’t take long for where one is and where one desires to be to become congruent.

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My walking buddy on today’s walk.


Blogtober Day 9

Today’s Blogtober Challenge is to share a favorite back to school memory. I thought about skipping today’s challenge and sitting this one out.

The thing is, I didn’t think I had a favorite back to school memory. As hard as I tried, I could not think of one happy memory from my grade school or high school years. Back to school time was miserable for me.

My dislike of school started early. I remember having a brief bit of excitement about school before starting kindergarten, but it disappeared after the first day.

Elementary school didn’t make any sense to me. I tried to be good, follow directions, and learn. However, I constantly got in trouble for things like talking, asking too many questions, not following directions, being too loud, or moving around too much. I was spanked by my kindergarten teacher.

Early elementary me.

Early elementary me.

In first grade, I had trouble with addition and subtraction. I raised my hand and asked, “When subtracting 3 from 10, does ten count as a number that is subtracted or do you start at nine?” The teacher looked at me like I was crazy. I consistently missed math problems by one number for some time after that.

In second grade, I had all A’s and B’s except for handwriting. I tried to do well in handwriting but failed miserably. The teacher said it was because I rushed through the assignment.

I badly wanted to make honor roll. The next handwriting assignment, I took my time and did my very best. I was proud of myself as I approached my teacher’s desk to have it graded.  “This is it. I finally did it. I’m going to get at least a B.” I thought to myself.

I handed it to the teacher. She looked at it for a total of three seconds before scribbling a C- on top of it with her red pen. I held back tears as she lectured me about not being in such a hurry.

I think that was about the point I checked out. I rarely, if ever, did my homework my entire school career. I cruised through my classes doing the bare minimum. Sometimes, I’d make honor roll and other times I’d come close to failing. I couldn’t have cared less either way.

For some reason, they kept passing me through the grades. I assume it was because I tested well on the standardized tests.

High school was its own nightmare. In addition to my early acquired aversion to school, I had the social scene of a small private high school to contend with.

For starters, my insecure older brother and his friends had nothing better to do than taunt and harass me. In hindsight, I see they had the problem. But, that didn’t make things better for me back then. It was miserable to be ridiculed and laughed at constantly by that group.

I didn’t have the tight knit group of friends that often appear in adolescent movies. Does anyone? Other than wearing the same button down collar shirts and scratchy polyester plaid skirts, I had very few things in common with my classmates.

High School Me

High School Me

The administration was detestable. They arbitrarily enforced rules when it was convenient or if a loud or wealthy (sometimes both) parent got involved in a situation. The image of the school seemed to be a higher priority than the actual schooling it provided.

We did not have locks on our lockers and I constantly had things stolen. The missing items ranged from small things such as pens to the large (to a high schooler) like my twenty dollar bill. I complained to the administration about it several times. The response I received was, “Are you sure you don’t lose things? People don’t steal here.”

Like everyone eventually does, I did have a couple of excellent teachers. I suppose their classes were the reason I did not out right refuse to go to school all together.

Day after day, I went through the motions comforted with the knowledge that it had to end eventually.

After the required twelve years (thirteen if you count kindergarten), I had successfully jumped through all the hoops and graduated in the top half of my class of twenty six. My distaste for school had become so powerful that I didn’t want to go to college.

College was for other people, not me. I wasn’t intelligent and I didn’t want to be anything. All I wanted from life was to be happy and feel safe. School wouldn’t help with either of those things or so I thought.

A few years later, I fortuitously received an honors scholarship to a local community college based on my SAT scores. I had decided that I wanted to do more with my life but didn’t know what. The community college honors program was the first time I was ever happy in school. It was my awakening, my chance.

As it turns out, I do have a good back to school memory after all. Mine just happens to come much later than most. I loved my college education… almost everything about it. I loved the classes, being an RA (once I transferred to a four year school), the chemistry lab, and the friends that I made. By the time I received my degree, I had opened up to seeing and believing in possibilities. To this day, I still am and do.

 

 

 

 


Blogtober Day 8 Challenge: Just Your Average Bag

Woo hoo! It’s Day 8 of the DC Ladies Blogtober and I’ve somehow managed to keep up! Today’s challenge is to write about and photograph what’s in my bag.

I’m going to admit, it feels odd to write a blog post exclusively about the bags I carry in my day to day life. But, here it goes…

I typically carry a messenger bag and a diaper bag. It seems excessive but the tactic is the easiest way for me to stay organized and manage everything.

I will start with the easiest. The diaper bag contains typical items such as diapers, wipes, a change of clothes, formula, and sippy cups. Depending on the time of day or length of the visit, I can take or leave it in the car as needed.

My messenger bag, on the other hand,  is my survival bag and it goes everywhere.

10626844_10101986485394219_7011953680130035598_nThere are the expected items such as keys, wallet, and phone. While I have never worn makeup (note: I will need help if Charlie ever wants to wear make up), I’m a big lip gloss fan and always have a tube handy.

Maybe, a little more unique are the health/medical items. I carry oral syringes to administer Charlie’s medication ( which is kept refrigerated in an insulated lunch box) while we are out. Additionally, I consistently carry hand sanitizer. Charlie is doing well. But a cold, the flu, or an illness are dangerous for her preemie lungs.

The Tums, naproxen, and inhaler are mine. I’ve had an ongoing moderate issue with asthma since my pregnancy. After three spine surgeries and an inevitable fourth in the future, I live with chronic pain. It is the reason I walk as much as I do. I think it is also the reason why I feel like I need to stay on top of things with Charlie’s health. I don’t want her to end up like me.

The remaining items: the coloring book, crayons, Kindle, and ear buds are for the long waits. I spend A LOT of time waiting for things like doctors, therapy, clinics, and prescriptions. These items keep those waits incident free and peaceful.

After surveying the contents of my bag, I realize it is rather ordinary. I think what I wish was in my bag would be more interesting.

In my wishful bag dump, I would find plane tickets to Nairobi or keys to an RV.

What’s in your bag? What do you wish was in your bag?

 


10 Things I Am Thankful For

Today’s Blogtober assignment is to compile a list of ten things I am thankful for. Despite all of my rants and complaints, I do have many things for which I am grateful. I think I will start my list with the most obvious but the rest is in no particular order.

I am thankful for: 

1) … Charlie and that she survived.

2) … growing older. It’s a privilege denied to many.

3) …the people in life who carry out random acts of kindness. The ones who take a moment from their lives to go out of their way for other people. Like the gentleman who offered his seat to me on the Metro, the people who hold doors open, the neighbors who make meals for practical strangers, and the countless others who contribute their time, talent, or money. Whether the act is big or small, every act is significant.

4) … for the outdoors. It has been a substantial part of my healing process. No matter how overwhelmed, sick, defeated, or hurt I may feel, being outdoors is a panacea.

5) … my friends and husband. I am blessed with extraordinary friends. I am fortunate to receive their love, understanding, kindness, support, encouragement, and time.

6) …writers, authors, bloggers, and anyone brave enough to write down their thoughts and ideas for others to read. Almost every night, I wind down before bed with a book. I can’t imagine the world without the written word.

7) …my Share Your Story people. I would be walking this post NICU journey alone without them.

8) …music. Through singing, playing, listening, and dancing, it has the power to commiserate, inspire, celebrate, immortalize a moment, transform, and heal.

9) …my animals. I am not sure who rescued whom.

10) …the world. There is never a shortage of places to visit, languages to learn, music to hear, new ideas to discover, people to meet, new foods to eat, and experiences to enjoy. I am incredibly lucky to be an infinitesimal and minute quark in the midst of it all.

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My Five Blogging Tips For The New Blogger

Day six of the DC Ladies Blogtober is here. Today’s challenge is to share my top five blogging tips for a new blogger. This is what I’ve managed to figure out thus far.

1) Get connected. Get to know other bloggers. These bloggers don’t necessarily have to be in your niche or write about your topic. Other bloggers can be a fantastic resource for ideas, second opinions, opportunities, support, encouragement, and trouble shooting.

How does one meet other bloggers? Comment on their blogs, connect on twitter, or send an email. Every blogger was new to the game at some point and most are willing to at least say hello.

2) Be Yourself. My favorite blogs to read are the ones in which an author is genuine. Faults and all, I enjoy when a blogger’s personality, thoughts, and feelings are conveyed through clever writing.

Keep in mind that the internet is a vast resource. Most of the information that you have to offer can be found elsewhere. What makes your blog unique is you. Some of my most popular posts made me feel very vulnerable when I hit publish.

On the other hand, don’t try to be something you are not. I stop reading as soon as I feel the author is being phony or trying too hard to push a desired image.

3) Decide in the beginning what you want from your blog. Do you want to advertise on your blog? Is your blog an extension of your company’s website? Are you trying to connect with others in your field or interest? Or, maybe you just want to write for your own purposes?

Knowing these things before hand will help you decide on the appropriate blogging platform, find your reader base, and will assist in planning a strategy. It’s easier to deal with these things in the beginning than have to shuffle everything around later.

For me, I determined that I wanted my blog to be a place to vent and connect with other parents like myself. I knew that I didn’t want to blog for a long term and wanted Charlie to have her privacy as she grew. This information impacted my choices.

Things like advertising, paid posts, and so forth did not feel right for what I wanted from my blog. Plus, I know I want to wrap up my blog when Charlie turns three.

4) Social media matters. Blogging is social. A social media presence is key to increasing your blog readership. Interact with your readers and let future readers know that your blog is out there.

This is an area that I could improve quite a bit. If I had the time, energy, and drive, I would use Facebook like a mini blog and post pictures, updates, and questions unique to that account. In addition, I would update Twitter a few times a day with something funny or thought provoking.  Finally, I would have lovely Instagram images and Pinterest worthy graphics.

Social media accounts shouldn’t be entirely self promotional. Share other articles, news items, blogs, or things of interest to your readers or followers.

5) Be creative and experiment. Almost every website, book, or article on blogging will attempt to discuss SEO, click bait, and successful blog post formats. Yes, these things do work in driving traffic. But, it doesn’t necessarily build readership if someone visits your blog once for click bait.

Use the blogging basics as tools and build on them, change them, and make them your own.  Don’t be afraid to write a post that doesn’t follow popular post format. Take chances and try something new.

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Blogtober Challenge Day 5: Favorite Fall Recipe

Today’s Blogtober Challenge almost stumped me. I suppose I could discuss the fine art of making green bean casserole. But, French’s Onion stole my thunder by printing the recipe on the back of their cans.

OK, I confess. I am not much of a cook. It’s not that I hate cooking or am particularly bad at it. It’s just that other than passing phases, I haven’t had much interest in learning to cook.

More often than not, we are a sandwich, salad, fruit, and veggie kind of family. We mix things up with nuts, seeds, and grains. We also grill out quite a bit.

Now that you are aware of my cooking ability (or rather, lack of), you will understand the ease of the upcoming recipe.

Lately, I have been all about soft foods as an attempt to get Charlie to eat solids. Some of her favorites are bananas, macaroni, rice, beans, hummus, avocados, mashed potatoes, tomatoes, grapes, kiwi, and toast.

Every once in a while I will cook up a quiche which she loves.

Before you are wowed, you should know that I use a recipe that is quick and easy. I can manage it with my limited cooking skills, small selection of available cooking utensils, and with Charlie clinging to one leg.

With out further delay, here is my response to the DC Ladies Day 5 Blogtober Challenge:

Quick and Easy Quiche

Ingredients:

  • Frozen 9 inch pie shell
  • 3/4 Cup of Milk
  • 5 Large Eggs
  • Add about two cups (total) of anything you want to cook up in the quiche such as chopped vegetables, precooked bacon, deli meats, cheese, precooked meats, and herbs.

Directions:

  1. Preheat oven to 350 degrees Fahrenheit.
  2. In a bowl: beat eggs, beat in milk, and then mix in other selected ingredients.
  3. Pour contents of bowl into the frozen pie crust.
  4. Bake quiche on a cookie sheet on the middle oven rack for 45-50 minutes. The top should be brown and a knife inserted into the middle should come out clean.
  5. Once the eggs are cooked through out, remove from oven, cool to a safe temperature to consume, and enjoy.
Charlie eats her formula like a good eater.

Charlie eats her formula like a good eater.

 


Blogtober Challenge: A Piece Of Advice For My Younger Self

As you may already know, I’m shaking things up a bit this month and participating in the DC Ladies Blogtober. Today’s challenge asks “What is one piece of advice you’d give your younger self?”

It’s quite simple really.

I would tell my younger self that the great ones make others feel that they, too, can be great. Surround yourself with those people and try to be one of them.

I wish I would have known earlier that the people worth letting into your world help you feel good about yourself and your life, re-energize you, and being with them relieves stress. Not the opposite.

I’ve had the honor of knowing quite a few people who have filled me with hope, given me direction, held my hand during tough times, inspired me, challenged me to think, gently pushed me out of my comfort zone, rooted for me, and (because of all that) have made me a better person.

Out of everything I learned over the course of my life, I think that lesson may be the most important and the one I wish I knew when I was much younger.

I think I would tack on: You become what surrounds you. Surround yourself with the type of people you’d like to grow into and the things that make you happy. Don’t waste precious time with the other stuff.

Before music therapy yesterday, Charlie played in the lovely fall weather.

Before music therapy yesterday, Charlie played in the lovely fall weather.


7 Things On My Fall Bucket List

To do something a little different, I’ve decided to participate in the DC Ladies Blogtober (it’s not too late for you to join in). Today’s challenge is to write a fall bucket list.

So here it is. In no particular order, My Fall Bucket List:

1) Begin to wean Charlie off of her formula.

2) Play in the leaves with Kaia (our dog) and Charlie.

3) Visit Harpers Ferry before the leaves fall.

4) Introduce Charlie to caramel apples.

5) Get lost in a good book for a day on the front porch and enjoy the fall air.

6) Clean the house thoroughly before we are snowbound during the winter.

7) Have a bonfire with friends.

Charlie is unsure of what to think about the wind. And yes, she did try to taste it.

Charlie is unsure of what to think about the wind. And yes, she did try to taste it.

 

 


Charlie Stops For Nothing

Hectic is a good word to describe the past week. Over the course of the week, I’ve completed Charlie’s medicaid waiver forms, worked towards getting the insurance claim for the formula approved, and attended to Charlie’s usual busy schedule. Things were a little more difficult because I’ve been under the weather.

Despite the stress, I feel like there was much accomplished. Additionally, I decided to make some needed changes. Basically, I need to reapportion and move stuff around on my plate.

For the most part, the people in my world won’t notice the changes.  The biggest of which is that I’m cutting back on the frequency of my personal blog posts. I don’t feel the urge to post as often as in the past. Plus, I want to pursue to new interests and work on moving forward.

Of course, none of this matters to Charlie. She has been playful and active all week. I have no idea where this toddler gets her energy from.

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The Good News: I’m Not Alone

I thought I was bitter. I thought I was resentful, begrudging, hostile, petty, and all those other things. I am not proud of and did my best to suppress some of my thoughts and feelings. But then, I discovered that I’m not a horrible person. Rather, my instincts and feelings are completely normal.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Charlie attended a fundraiser yesterday and played with sweet baby Wyatt.

Recently, I agreed to write a monthly guest post for a non profit preemie group’s blog. In my search for inspiration and ideas, I asked my micro preemie parents group for topic ideas or suggestions. They stepped up and supplied many ideas.

That evening, I scrolled through the list of suggestions and made notes. Midway through the list I read the remark, “Please, no more preemie miracle stories.” I could not believe what I read. I paused and read it again. There it was: No more miracle stories. Even more incredible, the several comments that followed were in agreement. I believed I was alone in feeling this way.

Anyone who has ever had a preemie have been told the miracle stories. In the stories, the smallest and the sickest in the NICU eventually go home. They become one of those preemies that quickly and easily catch up by age two with no long term issues.

The stories travel by word of mouth, as articles passed around social media, or posts on blogs. Occasionally, a parent will write a message about their miracle baby in a preemies group with a “Don’t lose hope!” or “Trust in God” moral attached.

I despise these. Because, my baby, like countless others preemies is not one of those stories.

While I understand they are well intentioned, the people who perpetuate these stories do not understand the world many of us exist in (or have forgotten it). I am hopeful that Charlie will catch up eventually. But, I wouldn’t call her progress a miracle. It has been a slow, arduous, frustrating, and desperate journey.

When someone posts in a group about a miracle preemie, to me, it is like eating a five course dinner in a room full of starving people. All of us, badly want our babies to “catch up”. However, it may not be the reality for some and others have to work much harder for it. People forget the reason these stories are so amazing… they are not the norm.

Seeing or hearing the stories is a kick in the gut. I’m happy for those families. But, hearing the tales is simply pointing out another path that was not part of our journey. It doesn’t not provide the intended hope. Instead, I find myself thinking, “That’s nice but it’s another place we were supposed to go but didn’t.”

(For the record, I am unaware of a single parent that “loses hope”. Most micro preemie parents are strong, resourceful, networked, and relentless.)

I thought I was alone in my distaste for these miracle stories. I was ashamed of the annoyed grumbling I did under my breath each time I encountered one. It was a nice surprise to find out that I’m not the only one.

 

 


More Questions To Answer

Melanie at MommyDo recognized me with a Liebster Award. She writes:

I think Cheering on Charlie received this award from someone else, but I’m giving it up anyway.

As I’ve stated previously, I am always grateful and flattered when a fellow blogger recognizes me. So without further delay, here are the answers to Melanie’s questions:

1. What made you want to start blogging?

Initially, it was a way for me to document Charlie’s journey in an appropriate venue. My posts became too long for Facebook or Tumblr. But, I like to learn and it became a learning project for me. It was also a way to retain relevant employment skills for when I return to the work force.
2. Who inspires you?

No one person, in particular, inspires me. Instead, I find inspiration in quotes, writings, and song lyrics that I come across. For example, I once read someone tweet something like “There are plenty of intelligent and talented people, distinguish yourself by being kind.” Additionally, there are several Bruce Hornsby lyrics that I often recite to myself such as “It probably won’t happen but I think I’ll try”.
3. What is one piece of advice you wish you could give your younger self?

You become what surrounds you… and you have the power to decide who surrounds you. I would have much sooner cut out the people who do nothing but discourage, criticize, or think they have it all figured out. I embrace those that encourage, are supportive, and challenge me to be better. If I knew this earlier, I don’t think I would have wasted as much of my youth being angry as I did.

4. What is your favorite item in your closet right now?

Whatever fits and doesn’t have stains. 🙂
5. What is currently your favorite album, artist, or song?

Holy wow, this is a tough one. Right now, Charlie and I have tickets to see Charlie Hunter. He is a guitarist and one of those performers that is consistently excellent every time I see him.

The upcoming show has special meaning to me. As it worked out, Charlie Hunter was the last show I saw while pregnant with Charlie. We saw him the night my  preeclampsia was discovered. His music was among the selections I played for Charlie in the NICU. Each time I hear the song, You Look Good In Orange, I think of Charlie. For the record, he is not one of the Charlie’s she was named after. Although, it was a happy coincidence. He is the guitarist (his part starts at 2:40) on this track:


6. What made you choose the title for your blog?

It came to me while I was writing my first post. When I wrote about cheering her on in the NICU, it clicked.
7. Must have beauty product(s)?

Other than lip gloss, I have not worn make up a day in my life. So I suppose, it’s lip gloss.
8. When are you happiest?

When I’m outside or at a show.
9. First celebrity crush?

OK, so I have to share my secret. I am face blind. So, I got crushes on TV characters rather than celebrities. My first crush was the main character of Quantum Leap. My lab partner, Kat, would be impressed at how nerdy that is.
10.Where is your dream destination?

Any country in Sub Saharan Africa.


Happy Bloggerversary To Me!

OK, so the blog you are reading did not appear until Charlie’s first birthday. But, Tatum at Ain’t No Roller Coaster inspired me to write my first post, No Apologies, on my tumblr account a year ago today.

I have been posting ever since.

My most popular posts are listed in the sidebar. In this post, I list my picks of the lesser read posts and the reason why they are some of my favorites.

1) Lucky – Almost two years into our journey, I continue to hear these comments regularly and I still feel the same way about them.

2) Crying In The Car Included – Not every relationship with a medical professional is a good match.

3) A Little Bit Of Ordinary – One of the many times Charlie has surprised me for the better.

4) Peer Influence – I learned a valuable lesson as Charlie learned to eat!

5) Skylar – Sometimes there are no good answers.

6) Three Legged Dog – A glimpse into my struggle with envy and jealousy.

7) Pride – I will always remember the first time Charlie felt rain.

8) In Case We Become A Micro Preemie Anecdote – There are some things I want told with our story.

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Sunshine On A Snow Day

I have been nominated by Love, Support, Educate, Advocate, Accept… for the Sunshine Award. I would like to thank Julie for the honor. I am always flattered to receive recognition from a fellow blogger.

“Sunshine, as the name suggests, is an award for bloggers whose blogs are bright and full of life.”

The rules for accepting the Sunshine Award are:

  • Thank the person who nominated you and link back to their blog
  • List 11 facts about YOU!
  • Nominate 10 other blogs to receive the award
  • Announce the nominations to the nominee

So without further delay…

About me:

1) I love chemistry and music but do not want a career in either. They are hobbies that, in one way or another, make an appearance in my life daily.

2) I read many travel and geography books. I am incredibly curious about foreign cultures, languages, and linguistics.

3) I am socially awkward. I read more etiquette books than the average person to build my confidence for social situations. Nevertheless, I usually end up saying or doing something weird.

4) My interest in a social work career has been reinforced by having a micro preemie. As tragic as it was, I found it to be an excellent and unique learning experience to be placed in the role of a client.

5) As a parent, I have no idea what I’m doing. I play it by ear and figure it out or make it up as I go.

6) I avoid people who think they know everything, experience has shown they generally know the least.

7) College was more than a means to a degree for me. I gained self confidence, discovered a love of learning, learned self discipline, tried jobs or classes outside of my comfort zone, and accomplished things I wasn’t sure I could do.

8) Volunteer work, giving to others, cheering for the underdog, and helping others have always been important values to me.

9) My hope for Charlie is that she finds a sense of belonging and she is happy… whatever that means to her.

10) I am not brave. Most of the time, I’m scared of or intimidated by many things in my life. I close my eyes, take a deep breath, and go through with whatever it is.

11) I would much rather know what is than wonder, “What if…” .

 The ten blogs I nominate are:

1) Laughing, Living, Weeping

2) Normal Is The New “Boring” 

3) Undiagnosed But We’re Okay With That

4) MOM – Not Otherwise Specified

5) Hydrobabies

6) Life On The Moon

7) JAM Sessions: Lessons Learned Through A Micro Preemie

8) Premmeditations: Reflections On Premie Parenting

9) Child Life Mommy

10) Raising 5 Kids With Disabilities And Remaining Sane

Happy reading everyone! I hope you find a new blog to enjoy and follow.

unhappyinsnow_edited My favorite picture of Charlie’s two minute snow play experience. An example of how not everything we try works out.


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