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.
It’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.
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.
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.
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.
As 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 feeding program evaluation went well. Charlie will attend the intensive feeding program this spring/summer. I should receive the dates any time now.
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 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. Charlie attended a Tyke Hike (a hike for two to four year olds) on Saturday. These two pictures are from that hike.
Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.
Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.
The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon.
That afternoon, she felt well enough to bowl for her very first time.
Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.
Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.
Friday night, we bought and put up our very first Christmas tree. Charlie was an enthusiastic participant. In addition to the tree, I hope to make gingerbread houses with her between now and Christmas. This is the first Christmas that she is able to actively participate in holiday themed activities. We are enjoying the novelty of it all.
During the tree assembly, Charlie shifted her focus between helping and running around the living room. At one point she babbled, “Mommy, mommy, mommy, I love mommy.” as she ran towards me. Stunned, I asked my husband, “Did she just say ‘I love mommy’?” He confirmed that, indeed, she had said it. It was the first time she verbally said that she loved anything.
I am counting down to Christmas despite the busy December.
The SMOs were prescribed to correct her pronated feet, help her walk better, and will, hopefully, discourage toe walking. If she continues to toe walk, she may end up with hinged AFOs. She will get and be fitted for her SMOs in the upcoming weeks.
Next week, Charlie has an MRI scheduled for which she will be sedated. The MRI does not bother me, but the anesthesia and accompanying intubation does. I am a nervous wreck. Logically, I know it’s not a big deal and she will be fine. However, emotionally, I am terrified. There is not much I can do but have faith in my logic and trust Charlie’s doctors and nurses.
Nevertheless, this week, I may try to squeeze in a little extra quality time.
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.
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.
This was Charlie’s first Halloween trick or treating. During her first Halloween, we were in isolation. For her second Halloween, we took her to collect candy at Target because she was unable to walk. This Halloween was her first going door to door and she loved it.
Charlie and her dad pre-game before the office Halloween party.
Thursday night was like training for Halloween. Charlie’s dad’s office had a Halloween party. She dressed in her Elmo costume (which she picked out), decorated a pumpkin, and learned to trick or treat at the cubicles.
The employees also had a costume contest. There was someone dressed up as a scary blood covered wolf with a plastic chain around his neck. Charlie kept waving to him and saying, “Hi doggy!”
The actual night of Halloween, we went to a friend’s neighborhood. Trick or treating in our dark mountain neighborhood is not the safest of ideas. Our friend’s daughters joined us (and helped) as we took Charlie door to door for the first time.
Charlie made her way up the first porch steps (with help) and stood patiently while the homeowner answered the door. When the door opened Charlie exclaimed, “Snacks please!”
By the next house, she relearned to say “Trick or treat”. Now, she blurts it out repeatedly whenever she hears something that sounds remotely close to it.
Halloween turned out to be much more fun than I had anticipated.
The next day was the first day of November or as my news feed reminds me, Prematurity Awareness Month. My next post will address the month long observance.
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.
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.
Today, we took our traditional family photo. The whole thing became an accidental tradition.
When Charlie was in the NICU, the nurses would occasionally mention that we should take our first family photo. I refused. Back when I had no control over anything and felt completely powerless, that was something I could decide. Our family would not be documented, for the first time, in that way or at that time.
Looking back, I realize it was silly. But, I still had fantasies of leaving the NICU and forgetting all about preemie life.
After Charlie had been home for a few weeks, we decided to go to an apple orchard about an hour away. We lived in the Fairfax area at the time which made the trip sort of magical. There were open fields, fresh air, apples one could pick off trees, and fewer people. Things we did not have where we lived.
Suddenly, I decided that this was the place I wanted to take our first family picture. I remember silly things about the moment. Such as how the guy who took our picture commented, “How old is that baby? Three hours?” I remember how we were staring into the sun and how I stepped on a rotten apple. My eyes are barely open in it. But, there you have it. Our first family picture.
A few months later, we decided the Fairfax area was no longer right for us. We left DC Metro suburbia for the mountains. The following apple season we discovered that we now lived about twenty minutes on the other side of the apple orchard. We returned, picked apples, and took this picture.
I don’t remember too many details about the trip.
Now, here we are. Another year has passed and we are over that orchard. There are dozens where we live and the novelty has worn off. However, today, we made the pilgrimage simply to take the traditional picture.
It’s interesting how things have changed in two years. What was then fewer people is what we now consider crowded. The walk up that big hill (which was a challenge the first time) was a piece of cake because we spend a lot of our free time hiking. The biggest change of all, Charlie walked up the hill (with assistance) with us.
So here it is… this year’s picture.
A side note: Kaia (our dog) is not in the picture with us this year. She is alive and well (and the best hiking partner ever). But, we went to other non dog friendly places after this picture was taken.
Tonight’s post is very brief because we have to be up before dawn tomorrow for Charlie’s Upper GI.
After today’s speech therapy (which went really well!), I took Charlie to a new (to us) park. Normally, when we go to the playground, I end up playing with Charlie. The other kids usually refer to her as a baby and show no interest in playing with her.
Today was different. Charlie played her very first game of tag! It was a big day in our world.
Back in January, through something short of a miracle, we won a contest. The prize was a week long cabin stay at any Virginia State Park of our choice. We ended up choosing Natural Tunnel State Park and celebrated the anniversary of Charlie’s NICU discharge there last week. It was the vacation I hoped for and desired. So much so, that I’m bitter about being back.
My husband and I decided to disconnect from our lives. Other than using the visitor center’s wifi to upload pics and respond to a few tweets, we were out of contact. It was a marvelous escape.
I countered phone calls, emails, and text messages from doctor’s offices, therapists, and the like (whom can be surprisingly persistent over trivial matters) with the simple message “On vacation, will return on Saturday.” I did not have to answer questions from people such as, “Is she eating yet?” or “Isn’t she really small for two?” Nor, did I have to politely listen to unsolicited advice.
It was exceptionally quiet. I love quiet.
The area was extraordinarily beautiful and rich in history. The first few days we explored every inch of the park. Charlie went swimming, my husband went fishing, and I went hiking with our dog. We played on the playgrounds, rode the ski lift to the Natural Tunnel, and climbed up to Lover’s Leap. Charlie found a trail marker with a “2” on it and she stood over it saying, “Two, two, two, two, two…” We had to pull her away to finish the hike.
Later, we ventured over to nearby Wilderness Road State Park. We poked around the historic area with the fort and talked to the period actors. Charlie liked the blacksmith. She exclaimed “Whoa!” when the bellows blew sparks and said, “Ding!” each time he hammered. Wilderness Road had a really nice playground but Charlie preferred playing in the natural play area.
Towards the end of the week, we visited Southwest Virginia Museum State Park which was also near by. (For those who are counting, that makes 28 out of 36.) The museum was filled with artifacts from the area. Charlie liked the interactive exhibits. She repeatedly played the same track about spiritual music. Fortunately, we were the only ones touring the mansion at the time.
After the museum, we went to Bark Camp Lake. The lake was lovely. However, we did not get to stay long because Charlie had an issue. She would not let go of my leg and screamed, “Mommy, mommy, mommy!” We assumed she was just tired and headed back to the cabin for a nap. But, we realized later that her stomach was bothering her.
We wrapped up our week by riding the ski lift and revisiting the Natural Tunnel. We retraced our favorite sights and activities.
There were moments that don’t fit into this narrative such as rocking on the back porch while watching a quick down pour. Or, cooking out with friends (during the couple of nights they joined us) until late in the evening. And, gazing at the most stars I had ever seen each clear night.
After a week like that, I am fighting back tears now that we are home. It’s not so much being home that is upsetting because we live in another beautiful area of the state.
Instead, it’s the thought of returning to our normal. Back to arguing with insurance, back to navigating a confusing and overwhelmed medicaid waiver system, back to answering people’s questions about Charlie, back to patiently nodding at unsolicited advice, back to therapists making unrealistic home therapy suggestions, and back to sitting in countless doctors’ offices.
I live a strange polarity. I detest many of the things in my daily life. However, I wake up each morning so grateful for the life I have.
I haven’t had the urge to blog lately. I want to say it is due to lack of happenings. However, that’s not true. There is just as much occurring now as ever. Therefore, I think the change may be in me. Those big emotions are not stirred up on an almost daily basis. I may be settling into my normal.
Oh, insurance does not want to cover a medical necessity? I’m used to that. What’s that? The medicaid waiver process is a giant snafu? I kind of expected it. Are those people judging us as we go about our routine? Shrugged off. Another diagnosis? I saw it coming.
Don’t mistake me. Like anyone, some days are better than others for me. I do struggle from time to time. I continue to feel disconnected from the “regular” parenting world. But, those powerful consuming emotions are not an every day thing anymore. Maybe, more of a once or twice a week kind of thing.
The dust is finally settling after our world was rocked by Charlie’s premature arrival.
On a side note: Today was the first day that I looked at Charlie and saw a little girl instead of a baby. I don’t care what people say. This time did not fly by. It felt like the longest two years of my life.
I happily tossed out the bottles (she takes her formula through a sippy cup now). I was thrilled to take the rail off of her crib. I look forward to the (very far off) day without diapers.
Activity two of the week completed! Yesterday, we made the pilgrimage to Busch Gardens so that Charlie could meet Elmo. The trip turned out to be everything I hoped it would be.
I was surprised there was so much for her to do. She saw the live show twice, met all the characters, rode several rides, played in a playground like area, and splashed on a splash pad type area.
There were a couple of moments I had to fight back tears. There are a couple of reasons why:
1) We are so fortunate Charlie is here to share in a day like yesterday (or any day) with us.
2)Charlie has worked and fought harder than I can possibly imagine. Nevertheless, she is full of joy, enthusiasm, and is almost always smiling. To see her have a day like yesterday was incredible.
It’s true, she probably won’t remember any of it. But, yesterday, her world was as magical as she makes my everyday.
It happened sooner in the week than I had planned. Yesterday turned out to be the big day. We took the front rail off of Charlie’s crib and transitioned her to a “big girl” bed. In addition, we moved everything out of her drawers into organizers in the closet as a preemptive strike on any “redecorating” by Charlie.
Late in the afternoon, her crib turned into this toddler bed.
Charlie was thrilled to find Elmo covering a bed that she could easily climb into and out of. I’ve heard other mothers say they were sad when this day came. I can’t say that I share in the sentiment.
Our baby experience has been longer than average and exhausting. I feel relieved we reached this milestone. I am caught up in the excitement of a new bed for Charlie. Mostly, I find solace in moving one more step forward. We are inching closer to leaving all this behind.
Charlie joined me today as I picked through a clearance sale at the mall. She pretended she was looking for clothes and rifled through the racks beside me. After she became bored, she played peek a boo with anyone that looked her way.
A sales lady got sucked into a game of peek a boo with Charlie. As the laughter from both sides died down, the lady asked Charlie what her name was. Charlie smiled at the lady, fidgeted with her hair, squirmed, and remained silent. The pause in the conversation became uncomfortable. I jumped in and answered for Charlie.
The lady asked, “How old are you Charlie?” Charlie answered with babble. The lady looked somewhat surprised to hear a toddler babble. I disclosed, “She doesn’t talk yet.”
I’ve been cranky and exhausted from this past week.
I was too tired to explain Charlie’s early arrival. I didn’t have the patience to hear a stranger’s awkward remarks upon receiving the information. I was not in the mood to discuss diagnoses and how we hope she will one day “catch up”.
I just wanted to find some deeply discounted clothes and get out of there.
Speech, like feeding, is one of those skills that Charlie struggles with. The good news is that she is improving. While she continues to babble, Charlie now has twenty eight words.
Among those words are “hop” for help, “Melmo” for Elmo, bye-bye, eat, and happy. Sometimes when Charlie is having fun she repeats “Happy, happy, happy, happy, happy…” with a huge grin. I’m nearly brought to tears each time she does it.
However, Charlie started using my personal favorite word a few weeks ago… mommy.
Charlie learned to say her name a few weeks ago as well.
We did it! Today, Charlie and I attended our second annual NICU reunion. Despite my reservations, it was certainly easier the second time around.
Charlie and I arrived and said our initial hellos. Then, I grabbed a seat out in the courtyard under the shade of a tree and watched from the sidelines as Charlie wandered around close by.
There were several children’s activities available but Charlie chose to obsess over the storm drain in the center of the courtyard. She laughed and clapped as she walked back and forth over the drain. Eventually, she found the mulch more interesting and occupied the rest of her play time by tossing it in the air.
Afterwards, we saw Charlie’s primary nurse. It was tough but I stuck to my promise that I wouldn’t cry this year. We talked while the other nurses passed around Charlie and doted over her. Charlie flirted shamelessly.
My friend graciously supplied this picture (and permission for its use).
Today, had a very different feel. The memories and emotions were not as intense. However, the hospital food was just as bad as I remember it.
It wasn’t long before we had enough and it was time to leave. My NICU mom friend and her daughter joined us for lunch afterwards at a near by restaurant.
Overall, I’m glad we attended this year’s reunion. Last year, I was still reeling from the relatively fresh news that Charlie had bigger issues than expected. This year, I’ve figured out how to roll with what is thrown at us. And Charlie… well, she’s never given up and it shows.
I 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.
It’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.
As 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.
Charlie attended a Tyke Hike (a hike for two to four year olds) on Saturday. These two pictures are from that hike. 
After Charlie had been home for a few weeks, we decided to go to an apple orchard about an hour away. We lived in the Fairfax area at the time which made the trip sort of magical. There were open fields, fresh air, apples one could pick off trees, and fewer people. Things we did not have where we lived.
Tonight’s post is very brief because we have to be up before dawn tomorrow for Charlie’s Upper GI.
Back in January, 
The area was extraordinarily beautiful and rich in history. The first few days we explored every inch of the park. Charlie went swimming, my husband went fishing, and I went hiking with our dog. We played on the playgrounds, rode the ski lift to the Natural Tunnel, and climbed up to Lover’s Leap. Charlie found a trail marker with a “2” on it and she stood over it saying, “Two, two, two, two, two…” We had to pull her away to finish the hike.
Towards the end of the week, we visited Southwest Virginia Museum State Park which was also near by. (
After a week like that, I am fighting back tears now that we are home. It’s not so much being home that is upsetting because we live in another beautiful area of the state.
Activity two of the week completed! Yesterday, we made the pilgrimage to Busch Gardens so that Charlie could meet Elmo. The trip turned out to be everything I hoped it would be.
We did it! Today, Charlie and I attended our second annual NICU reunion. Despite my reservations, it was certainly easier the second time around.
Cheering on Charlie 