Category Archives: Giving Back

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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The Promised Pictures

We had a lot of fun at the March of Dimes Signature Chef’s Auction. We feasted on delicious dishes and met some incredible people.

As usual, Charlie flirted shamelessly. Charlie seems to really enjoy interacting with people.

In the beginning of the evening, she handed out the favors and we thanked people for attending. Later, she tossed the football back and forth with attendees while a football package was auctioned off (and continued on with it past the sale of the item).

As promised, here are some of the pictures from this weekend.

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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.

 


Two Down, One To Go

With March For Babies season in full swing and a couple other things going on, I’ve been busy. Today, Charlie and I walked in the Augusta County March For Babies. It was beautiful morning and fun walk. This was the second of three walks we are helping out with.

Our third and official walk is at the end of May. It will be an emotional walk because it is two days after Charlie’s second birthday.

I hope the weather is as nice as it was today.

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Why I Am A March Of Dimes Ambassador Mom

A doll that is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

The doll in my hand is the size Charlie was at birth. The doll is wearing the same hat and diaper Charlie wore.

Today, Charlie and I kicked off another March of Dimes fundraising event at a local store. It was the first time I lost my composure as I told our story.

Why do it? Why rehash a painful story over and over again? The answer is simple really.

These are the reasons why I speak about our story and raise money for the March of Dimes:

It’s for the moms of angels. Even though I can’t possibly imagine the feelings of a loss so great, I want them to know that their baby is not forgotten. I want them to realize that they are not alone as they figure out how to carry on and find peace.

It’s for the moms of preemies. There are very few who understand the heartbreak, sadness, loneliness, and fright that come with having a preemie. I want them to have comfort, support, and hope.

It’s for the moms of babies with birth defects. I want to raise awareness, understanding, and support for those families.

Charlie and I as we finish our story.

Charlie and I as we finish our story.

It’s for NICU babies. I want them to have bright futures.

It’s for every pregnant woman: present and future. I want them to have a healthy pregnancy.

It’s for every newborn. I hope for healthy futures.

It is for myself. I need something good to come from all this (other than Charlie) so I can one day move past it.

And finally, it is my way of saying thank you for saving my baby and many others.


Alone Time For Mom Before A Busy Week

A short post tonight, I’m trying to catch up with housework after a very busy weekend.

This weekend, I was lucky enough to get away for a couple of nights. Before Charlie was born, I volunteered with a non partisan voter registration organization. The past two nights, I returned to my old familiar spot of registering voters at live music shows.

I had forgotten how much fun it was.

Obviously, the break from the demands of my usual world was nice.  But, I enjoyed working with the other volunteers and the adventures each night offered as well. A mental note has been made to get out and volunteer more with the group in the future.

In other news, tomorrow is Charlie’s first day of her new speech therapy program. I am not sure what to expect but I am hopeful.

This past weekend was a nice respite before a busy week.

The weather was nice this weekend. Charlie got to play outside without a coat.

The weather was nice this weekend. Charlie got to play outside without a coat.


Another Reason To Walk

When Charlie made her early arrival, I was angry that it happened to her… and me.

In my grief, I asked questions such as “Why me?” and “Why do I have to be in that minute percentage?” Sometimes, when I’m having a rough day, I continue to ask those questions. The only satisfying line of reasoning that I could provide myself was: I took one for the team.

If someone, out of all the people I know, had to fall in the dreaded miniscule percentage, it’s OK that it was me. We made it through the NICU. Despite my complaining, we are tough enough to handle the therapy and challenges. If it had to be someone among the people I love, it’s OK that it was me. Our lives will go on.

But then…  my beloved next door neighbor had to go on bed rest and one of my friends went into preterm labor tonight.

NO! That is not part of the deal! That is not how it is supposed to work!

Tonight, I lost the only answer I had to the “why me” question.

It’s not fair that it happened to me or any other woman. It has to stop.

Tonight, I have found another reason to walk.

I’m tired of seeing my friends suffer.

Charlie at last year's March for Babies.

Charlie attended her first March of Dimes March For Babies last year. Team Charlie Allene is half way to their goal. You can help end premature birth with your support of Team Charlie Allene by clicking here.


National Cerebral Palsy Awareness Month

Wow, March is busy! March is also National Cerebral Palsy Awareness Month. Just as with all the other month long celebrations, I am sharing Charlie’s story.

I knew there was something “not quite right” about the way Charlie moved when she had been home from the NICU for a few months. Her hands didn’t open when they should have, she missed all of her motor milestones at her adjusted age, and she was incredibly rigid when she slept. I begged the pediatrician for answers and she started Early Intervention.

Charlie was supposed to be one of those super preemies that left the NICU and never looked back. Because her NICU head scans appeared fine, we were not warned that cerebral palsy was a possibility. It was never discussed with us.

therapy I was blindsided by the delays and did my own research. My best guess concluded we were most likely dealing with cerebral palsy. I learned from my research we could help her. I just needed someone to tell me how.

Shortly after she missed her milestones, Charlie saw a developmental pediatrician. Although he did not diagnose her initially, he prescribed PT, OT, and feeding therapy. Charlie received her diagnosis of spastic diplegia at about eighteen months. Prior to that, I connected with another mom of a girl with cerebral palsy that has been an incredible support and resource (Thanks, Nicky).

After a couple months of therapy, Charlie’s hands opened and she could hold a toy. She learned to roll over a few months later. Things continued to progress with plenty of hard work and lots of therapy. She is now mastering walking. However, the multitude of therapies continue.

Cerebral palsy is a disorder that is a spectrum and affects each person differently. If there is one thing I want other parents of children newly diagnosed with CP to know, it is don’t give up hope. A diagnosis is helpful in order to receive services and understand the nature of the delays. It does not necessarily predict the future.

I’ve been amazed at how far Charlie has come and how much she can do.

walking toddler


March Is Child Life Month

NICU Preemie Card_editedMarch is a busy month with several month long observances. Today, I am writing about Child Life. What is a Child Life specialist? There is a very good chance, if you are reading this blog, you may already know.

For those who don’t know, according to Child Life Mommy, a Child Life specialist is:

Child life specialists typically work in a health care setting providing support to children and families during their admission… Specialists prepare patients for medical procedures through play, teaching dolls, visuals and using developmentally appropriate language. They also offer procedural support and teach coping strategies to help empower children and families through their experience.

Child Life Specialists understand what it is like to be the parent of a child in the hospital or a hospitalized child. They are exceptional people that deserve to be acknowledged and thanked. I will do so by sharing our first encounter with Child Life Specialists.

Our first encounter happened unexpectedly. Charlie had only been home from the NICU for a month and a half when she started projectile vomiting. Although she had issues with digestion from the start, it was never like this. Every time she ate, it came right back up with force.

During her second doctor’s appointment to address the issue, Charlie threw up some questionable colored vomit. Her doctor wondered if it could be pyloric stenosis or a malrotation. We were sent to the local pediatric emergency department for some imaging.

We went directly to the hospital. It was the same hospital she spent her first two months in the NICU before her transfer to a second hospital’s NICU.  Because Charlie was only there for imaging, it wasn’t emotionally difficult at first. The doctor examined Charlie and ordered the scans. I expected it to be a short visit that lasted a few hours.

Fortunately, the scans showed Charlie did not have pyloric stenosis or a malrotation. However, we were no closer to finding out why she was projectile vomiting. The doctor admitted her to the pediatric floor.

rehospitlizationThe ED Child Life Specialist came in to meet us while we waited for a bed in pediatrics to be found. She introduced herself and asked if I needed anything. I didn’t know what to say because I had so many needs. I needed to not have that happening. I needed to not be back at that hospital. The Child Life Specialist jumped in to help me with the things she could.

She noticed Charlie only had a sheet covering her and offered her a baby blanket which I gratefully accepted. (Thank you to whoever made and donated that blanket.) Next, she asked if I had eaten and offered a boxed meal. Seven hours had passed since the beginning of the initial doctor’s appointment, I was hungry but didn’t want to leave Charlie’s side. I devoured the boxed meal. Finally, she asked if she could contact someone for us. I declined and wondered, “Who do you contact during a time like this?” and “What do you say?”

That evening, Charlie’s room was ready. The long walk from the ED up to pediatrics is burned into my memory. As demoralizing as the day was, I did a fairly good job of holding it together. Charlie cried as her stretcher rolled through the corridors. With my head hung low, I pushed her empty stroller and trailed behind. It was the saddest parade ever. We passed people in the hallways who said things like “Awww, look how little she is!” and I ignored them without even a glance.

We neared the elevator bank and the smell of the hospital cafeteria wafted past my nose. That is when I knew we were back and it wasn’t some horrible nightmare. There was a flood of emotion that burst through my best efforts to contain them. NO! I DON’T WANT TO BE BACK HERE! We were done with this place! I was done eating that food. I wanted to crawl up on the stretcher with Charlie and sob together. I felt like I failed. I felt like we lost.

baby in hospitalOnce we reached the pediatric floor, another Child Life Specialist introduced herself. I asked a question which revealed my rookie status. The specialist asked, “She hasn’t been up on peds before?” I shook my head and said, “Only in the NICU.” The specialist proceeded to provide a floor orientation of sorts. She explained how to order meals, how the floor operates, where the snack kitchen was located, and how to fold out the chair into a bed (I slept in a recliner in the second NICU.). She offered toys for Charlie but she was too young (or too sick) to be interested.

After a few days, the stay concluded with the determination that Charlie had problems digesting her formula. Her formula was switched to an outrageously pricey formula. She got better and resumed gaining weight.

The readmission was tough. I would have been lost without the Child Life Specialists. When a child is admitted to the hospital, it is often a frightening and chaotic experience. I’m thankful Child Life Specialists are there to help.


Why Have World Prematurity Day (or Awareness Month)?

Today is World Prematurity Day. Those not affected by prematurity may wonder why we should observe a prematurity awareness day. I will do my best to answer why:

1) I did not think it could happen to me. Before Charlie was born, I was convinced that our pregnancy would be perfect as long as we did everything “right”. Even when her early delivery became a possibility, I was confident that I would carry her to term. I did everything I was supposed to do. In my mind, things like premature birth, birth defects, or still births happen to other people. The people who didn’t follow the rules. I was wrong.

Premature birth is closer than most realize. Despite not having a high risk pregnancy or any risk factors, it happened to me. It can happen to anyone. Even if, everything is done “right”.

2) Preemies are not just small babies. Many people believe that preemies are merely small babies.  Most premature babies require intensive care in a NICU for survival. Despite medical intervention, not all of those babies survive. Many of those that do graduate from the NICU have long term health concerns related to their early births.

3) Families affected by prematurity need support. The three months Charlie spent in the NICU was a lonely time for my husband and I. Very few people understood what we were going through. Our family and friends did not know how to support us. Acquaintances were strangely intrusive as I was confronted with questions like “Why aren’t you pregnant anymore?” from the grocery store check out clerk.

The general population knows so little about prematurity that many are unsure of how to respond. I hope open discussion about the issue and concerns families of preemies face can improve the way friends and family provide support.

4) Awareness can aid in prevention and improve outcomes. If women are educated about the signs and conditions that cause preterm labor, they can act if they become aware of it happening. Prompt medical attention allows for the possibility of interventions such as halting labor. Even if such interventions are not possible, other measures such as steroid injections can increase the baby’s chances of survival.

5) Research is important. It was not long ago that micropreemies had a slim chance, if any, for survival. Advances in medical technology such as NICU care, pulmonary surfactant, and prenatal betamethasone injections have increased preemie survival. However, there is much about maternal fetal medicine and neonatal medicine that is unknown. Hopefully, prematurity awareness will increase research funding and pique the interest of talented scientists and researchers.

6) To honor the preemies who did not make it home and to celebrate those who did. My thoughts are with all preemie families today.

Charlie's journey from birth at 26 weeks weighing 790 grams.

Charlie’s journey from birth at 26 weeks weighing 790 grams.


Something Good Today

Today, I had the privilege of speaking to first year medical students about our micro preemie experience. I was impressed with how thoughtful and intelligent their questions were.

Mostly, I was happy to be there and for others to learn from our story. It is an instance of something good (other than Charlie) coming from the circumstances of Charlie’s birth.

When Charlie’s early arrival was imminent, I was asked to participate in research by donating my placenta and providing blood samples from me, my husband, and Charlie. I readily agreed.

At the time, I needed to believe something good could come from our tragedy. I believe in the importance of research and it seemed like a small way to help others.

Now, I still feel the need for good to come out of our situation. I feel the initial good continues when I speak or allow others to learn from our case. However, my motives are not entirely altruistic.

Each time I tell our story, it gets easier to tell. Our reality becomes less of a shock to me. Each time I talk about it, it normalizes things for me. The words flow easier and are not as hard to find.  Each time I say it out loud, I process it a little more and gain a better understanding.

If there are questions, I think about different aspects that I hadn’t considered before. Sometimes, questions challenge me to consider a different perspective.

Today, I told the story of Charlie to med students. Something good happened today.


How to Help Family or Friends In A Crisis

Charlie’s birth was a very lonely time for me. We did not get the normal flood of visitors, gifts, and congratulations that comes with having a newborn. Instead, the silence was deafening and the loneliness was unbearable. The thing is, very few people knew what to do for us or how to respond. Today being what it is, I have decided to write about the helpful (and not so helpful) things people did for us when Charlie was born. The information is a list of ideas that can be adapted to help others in times of crisis.

What Was Helpful:

  • My husband’s company shipped a few days worth of meals to us or people made us food. I loved this. Last year combined, we spent 120 days in the hospital. I’ve discovered there is only so much hospital food one can eat. Once I returned home after a long day at the hospital, cooking was one of the last things I wanted to do.
  • Several people sent gifts and baby items (many in preemie sizes). It was a nice way of saying, “We are thinking of you and we hope for the best.” and not actually have to say it.
  • One out of town friend said to me, “I want to help but I don’t know what to do or say.” It was a great thing to say because it was honest and let me know that we were in her thoughts.
  • Other friends helped with our animals (letting our dog out while we were at the hospital) and with the household chores. Here are some suggestions: mow the yard, shovel the drive way, drop and pick up a load of laundry at the cleaners, or give a gift certificate to a maid service.
  • I had one friend that would listen. That friend was amazing at it.
  • Other friends went out of their way to face the awkwardness of not knowing what to say or do and visited us and Charlie.

What Was Not Helpful:

  • For whatever reason, almost everyone we ran into said, “If you ever need anything…”. Instead of the sentiment that was intended, we started to hear, “Sucks to be you” every time it was uttered. I, now, loathe this phrase. Alternately, offer to do something specific.
  • It added to the stress and chaos whenever someone would volunteer to do something and cancel at the last minute. We were counting on those things getting done.
  • I had someone ask me what I needed. When I told them, they ignored it and proceeded to tell me what I needed. Not only was it not helpful, it was frustrating and dismissive.
  • Silence. Not saying anything can be much more painful than saying the wrong thing.

Saying It Out Loud

When Charlie was first born, it was impossible for me to talk about her birth. It was one of the toughest things that ever happened to me. It did not end with the birth.

Her three month NICU stay was just as arduous, scary, and confusing. Through a portion of it, I was in shock. I found it difficult if not impossible to make sense of it. I really hated having to talk about it and explain things to people needlessly.

When I was discharged from the hospital, we had to stop at the pharmacy on the way home to pick up my meds and supplies. I prayed that the pharmacist would not assemble the clues to figure out that we had a baby. Especially, when my baby was perilously clinging to life.

I resented all those who assumed acquaintanceship privileged them to ring side seats to my tragedy. I avoided these people as much as possible. Normally, I would have had the strength to tell them to butt out or it is none of their business. However, at that time I lacked backbone. I took the easiest escape and feigned the cheerful optimism that was expected. Although, my heart was breaking and I felt like I was dying inside. What little strength I had was reserved for my baby.

It is difficult to put into words what our preemie birth experience was like. Soon, I’m going to have to find the words to tell our story. We have been asked to be a March of Dimes ambassador family for next year.

Through telling our story, I hope to educate and help others. Ultimately, I hope to find some closure for myself.


It Matters

Ever since I can remember, I have done A LOT of volunteer work. In high school, I have won awards for the number of hours I’ve accumulated. The habit carried over into my adult life. When there is a call for volunteers, I’m usually one of the first to step up. People generally tell me what a good person I am and so forth. Here is a secret… *I* benefit from volunteering. I learn about things that I’m interested in, I meet some really amazing people, I get a stress free opportunity to try out new skills (nobody fires a volunteer that messes up), and I get the satisfaction of doing some sort of good. Through out it all, I have always wondered “Does it really make a difference?”

It was not until I was on the receiving end of others’ volunteer work that I discovered the answer.

During the three months that Charlie was in the NICU, I was pretty much alone. My husband had to work (we had to pay bills somehow) and my friends had to work and manage their lives. It’s bad enough to grieve. However, when I grieved alone, I found the silence is deafening, the emptiness consuming, and the isolation is unbearable. There were days that I woke up and begged for the strength to make it through another day. On one of those such days, I arrived in the NICU early one morning to find a case of Girl Scout cookies. There was a note on the case stating “Help yourself to a box”. It was the morale boost (and probably the sugar rush) that I needed. Somebody had donated those cookies.

Next, there are the companies and individuals who donate scrap-booking supplies to the NICU family support. I do not think they realize the importance of it. I am not sure why I initially wandered in to the scrap booking class. In hind sight, I’m glad I did. I got so many things out of the simple act of putting together a NICU scrap book. Most importantly, I was able to process what was happening as I pieced together the scrap book. It was my first step towards empowerment. Someone gave that to me.

Finally, there was the blanket we were given from Child LIfe. Somebody, somewhere had knitted and donated the baby blanket. We received it on a day that we did not know Charlie was going to be hospitalized. Due to this, I was poorly prepared for her stay. Despite the hospital being a children’s hospital, there were not any baby blankets. My baby would not have had a blanket without that donation and I would have worried about one more thing. The gesture was incredibly comforting to me during a stressful and demoralizing time.

These are only a few examples of many instances. Many times, we do not get to see the results of the work we do. Some times, it seems too small of a gesture to address a much bigger issue. I’ve found out first hand that kindness and volunteer work really do matter.


Bigger Than Me (or Why I Am Marching For Babies)

When we decided to start team Charlie, we thought it would be a nice way to thank March of Dimes for their graciousness during our NICU experience. It would also be a way to raise awareness. Ultimately, it is Charlie’s victory lap. While all of these are good reasons to March, admittedly they are kind of egocentric. On Wednesday evening, it became more. I had discovered new reasons.

We had a March for Babies team captain meeting last Wednesday. I was looking forward to it as a way to meet other moms. It did not disappoint. I met a mom (I can already tell that we are going to be friends) and we compared stories of moving from the DC suburbs to here. We both spent time in the same High Risk Perinatal unit. We had quite a bit in common. There was one big difference. Her micropreemies did not survive. When she told me, that old saying “there but for the grace of God goes I” went through my head. I never really fully understood that adage until that moment. March of Dimes is working to prevent more moms from understanding.

I know of a couple moms who are in the NICU now. I think of them regularly. I see their posts, answer their questions, and dote over their pictures. I cheer them on. People did and still do it for me. The NICU is a terribly frightening, horribly lonely, and painfully sad place. I do not think anybody should have to face it alone. March of Dimes makes sure people do not have to.

After that evening, I have thought of greater reasons for walking. It has nothing to do with me. It is for Charlie and to celebrate her struggle. It is for the moms who did not get to bring their babies home. It is for the moms who are currently in the NICU watching their babies fight for their lives. It is for babies who have yet to be born that they may be healthy. There are so very many reasons. All of them are excellent and much bigger than me.


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