Category Archives: Social Work

Time For Class

On Friday, Charlie and I spoke to a public policy class at the social work program from which I graduated. It was my first time speaking to a class about public policy. Some things went well and there are some improvements I can make in the future. I hope the students went away with something useful from our talk.

I left so hopeful and inspired. These students were bright, compassionate, creative, and full of energy. They asked great questions and had many good ideas.

As usual, Charlie was the star of the presentation.

Today, we attended a birthday party for a good friend’s two year old. During the party, I watched the other kids eat. I realized we have so far to go with feeding. The seven month old at the party managed biting, chewing, and swallowing better than Charlie does.

I see how far Charlie has come and dare to think we are on our way to being finished with preemie life. But then, I see her with peers and realize how far behind she continues to be. It’s a reality check of sorts.

Although, this time it wasn’t upsetting or terribly discouraging. It was a moment of, “Oh, we still have a ways to go.”

Maybe, I’m making progress too.

Charlie high fived her dad after he bowled a strike.

Charlie high fived her dad after he bowled a strike.

 

 

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Flight

10599193_10101903098901419_4288387578415227_n_editedCharlie has her Medicaid Waiver screening tomorrow. I’ve worried about it for about a month. If Charlie is found not eligible for a Medicaid Wavier, then we lose Medicaid as Charlie’s secondary insurance.  With all of her needs (PT, OT, ST, formula, medication, etc), I don’t know how we’ll manage without it.

Without Medicaid, the services available to her will become limited and she will have to discontinue some of her therapy. We will go even deeper into medical debt because the bills will pile up much faster.

For the last month, I’ve gathered documentation and researched the waiver process. I’ve had nightmares the past two nights about losing Medicaid as her secondary insurance.

10516774_10101903098048129_3487054563820410646_nThis morning, I woke up and looked over her paper work. Then, I realized that I am as prepared as I will ever be. I took a deep breath and decided to try and stop worrying about it. Tomorrow, I have a fight. Today, rather than stress over it, I chose flight.

Charlie and I went to Leesylvania State Park. She played in the water (her sensory issues are improving remarkably), climbed on the playground, and walked on a riverside trail (her legs are getting so strong). It was relaxing and I could forget about the medicaid waiver issue for the afternoon.

Wish us luck tomorrow. We need all the positive thoughts we can get.

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Grief Doesn’t Bring Out The Best In Me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 


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.


Programs, Waivers, And Forms… Oh My!

Any parent of a special needs child knows that expenses add up quickly. In addition to the usual child rearing expenses, we encounter expenses from PT, OT, speech therapy, doctor appointment co pays, dieticians, special formula, orthotics, home health nursing, and therapeutic equipment. Over the past few months, I sought information on programs for which we may qualify. Today, everything was in place to apply.

If you live in Virginia, I recommend Moms In Motion  for help with the Medicaid Waiver process. The organization does a great job providing explanations of the different types of Medicaid Waivers, who qualifies, and how to apply. In addition, they offer assistance with applying for two other programs that may be helpful for children with special needs.

For those who do not live in Virginia, ask your Early Intervention services coordinator for suggestions of where to start. Charlie’s services coordinator was extremely helpful with sending us literature and directed us to Moms in Motion. Another useful place to begin is the local department of social services.

Filling out the forms was time consuming and a little confusing. Honestly, some of the questions sounded like riddles. That is why it is helpful to have an agency like Moms in Motion available to answer questions. By the end of the process, I was more than a little frustrated and could only hope that I answered everything correctly. However, it was doable.

Thankfully, the forms are finally complete and ready to be submitted. My fingers are crossed that Charlie qualifies for one or more of the programs.

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Happy National Social Work Month

I mentioned yesterday that March is a busy month. In addition to Child Life Month, it is also National Social Work Month.

One of the many learning experiences that came with Charlie’s birth was when I found myself in the role of the client. Here is my account taken from an earlier post:

I was well aware of the role of a social worker before I had my micro-preemie. A few years prior to Charlie’s birth, I had earned my BSW. The graduate program decision was in process when my husband proposed the idea of having a baby.

premie under the bili lightsCharlie’s early birth transposed things and placed me on the opposite side of the exchange from what I was accustomed. Therefore, it was peculiar for me to be visited by the NICU social worker a few hours after Charlie was born at twenty six weeks.

It was more than likely difficult for her to visit me during the midst of my nightmare. Anger was one of the many emotions I was experiencing at the time and I had no problem expressing it. But, social workers can be counted on to respond where they are needed no matter how unpleasant (or, in my case, angry) the situation may be.

The NICU social worker managed to introduce herself in between my magnesium sulfate fueled rants and my heartbroken sobs. She left a bag with booklets and literature about the NICU, preemies, and support organizations. I dismissed the encounter as something that was part of the administrative process and had no intention of ever speaking to her again. I mistakenly believed that I did not need a social worker. After all, I was one.

The day after I was discharged, she found me by my baby’s isolette. We retreated to a quiet room in the back of the NICU and talked. I profusely apologized for our first meeting. However, I was hardly more agreeable that day. Undeterred, she proceeded to address the concerns of a new long term NICU mom.

First, she helped me understand my baby’s insurance situation. That was followed by a crash course on our new NICU life which included information such as where to eat, where to pump, parking, visiting regulations, resources, and NICU procedures. Next, she explained that I needed to advocate for my baby.  Finally, we touched on the unthinkable as I asked about choices, decisions, and options in my baby’s care.

The first month or two that Charlie was in the NICU, I was consumed with grief. It was confusing for me to be lost in grief despite my baby’s survival. The NICU social worker directed me towards helpful resources and I attended NICU parent groups she provided. Eventually, the grief started to lift. Each time we passed in a hallway, she reminded me she was there if I needed anything.

2012-07-21 001 008After a little over two months, Charlie was considered a feeder-grower. At which point, we had opted to have her transferred to a different hospital. My husband and I looked forward to having a shorter drive, a private NICU room, and several other advantages the new hospital afforded. Despite our eager anticipation, the transfer stalled for unknown reasons.

No one could answer the questions I asked and appeared to be irked that I asked them. I was stuck, frustrated, and had no where else to turn. That night, I pounded out an angry email rant to the NICU social worker. I wanted her to sympathize. I needed to let off steam. I hoped she could explain what was happening and possibly offer ideas of what to do next.

Instead, her response exceeded anything I hoped for. She simply responded, “Do you want me to help you with this?” I was thrilled to have an ally and accepted her offer to help. She instructed me to meet with her the next day.

As I left for the hospital the following day, I muttered to my husband, “I’m not leaving the hospital today until I get my baby out.” Once at the hospital, I stomped through the parking garage with my teeth grit and fists clenched. I was ready for battle. I made my way up to the NICU with my head held high and chest thrust forward. If necessary, I was prepared to create a scene.

A fight wasn’t necessary that morning because the social worker had taken care of everything. She explained that Charlie had been, in essence, lost in the system. Due to the social worker’s intervention, Charlie would be transferred the following morning at 10 AM.

The social worker was there when I thought I was on my own and powerless. She was a compassionate voice of reason when I was overcome with emotion and overwhelmed by the situation. I can’t imagine how the three months in the NICU would have been without her.

Charlie resting peacefully after her transfer.

Charlie resting peacefully after her transfer.


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.


Social Workers: Overlooked Heroes In The World Of Premature Birth

In honor of Prematurity Awareness Month, I am attempting to write a post a day. With each post, I hope to address a different aspect of our prematurity journey. 

I have read many articles and posts about the wonderful medical professionals in the NICU and have written a few myself. However, there seems to be little written about social workers. There were two, in particular, who were heroes in the shadows of my NICU experience. I will not forget the support and comfort they provided.

I was well aware of the role of a social worker before I had my preemie. A few years prior to Charlie’s birth, I had earned my BSW. Charlie’s birth transposed things and placed me on the opposite side of the exchange from what I was accustomed. Therefore, it was peculiar for me to be visited by the NICU social worker a few hours after Charlie was born. I am sure that it was strange for her to visit me during the midst of my nightmare. Anger was one of the multitude of emotions I was experiencing at the time and I had no problem expressing it. But, social workers can be counted on to respond where they are needed no matter how unpleasant (or, in my case, angry) the situation may be. I didn’t know it at the time but I needed a social worker.

The NICU social worker managed to introduce herself in between my magnesium sulfate fueled rants and my heartbroken sobs. She left a bag with booklets and literature about the NICU, preemies, and support organizations. I dismissed the encounter as something that was part of the administrative process and had no intention of ever speaking to her again. I mistakenly believed that I did not need a social worker. She may have stopped by my room during the course of my stay but I had mastered the art of avoiding visitors by pretending I was asleep.

The day after I was discharged, she found me by my baby’s isolette. We retreated to a quiet room and talked. I profusely apologized for our first meeting. However, I was hardly more agreeable that day. Undeterred, she proceeded to address the concerns of a new long term NICU mom. First, she helped me to understand my baby’s insurance situation. That was followed by a crash course on our new NICU life which included information such as where to eat, where to pump, parking, visiting regulations, resources, and NICU procedures. Next, she explained that I needed to advocate for my baby.  Finally, we touched on the unthinkable as I asked about choices, decisions, and options in my baby’s care.

The first month or two that Charlie was in the NICU, I was consumed with grief. It was confusing for me to be lost in grief despite my baby’s survival. The NICU social worker directed me towards helpful resources and provided NICU parent groups. Eventually, the grief started to lift. Each time we passed in a hallway, she reminded me that she was there if I needed anything.

A little over two months into Charlie’s NICU stay, she was considered a feeder-grower. At which point, we had opted to have her transferred to a different hospital. My husband and I looked forward to having a shorter drive, a private NICU room, and several other advantages the new hospital afforded. Despite our eager anticipation, the transfer stalled.

We were told each day that our baby would probably transfer the next day. After a week of this, I had enough. It was one of those days in which my private kangaroo session had been peeped on by prying eyes, other babies’ visitors sniffled and coughed as they passed my baby’s isolette, and unattended kids screamed relentlessly all day in the NICU waiting room. I needed to get my baby out of there. No one could answer the questions I asked and appeared to be irked that I asked them. I was stuck and frustrated.

With no where else to turn, I wrote an angry email rant to the NICU social worker. I wanted her to sympathize. I needed to let off steam. I hoped she could explain what was happening and possibly have ideas of what to do next. Instead, her response exceeded anything I hoped for. She simply responded, “Do you want me to help you with this?” I realized that I had an ally and accepted her offer to help. She instructed me to meet with her the next day.

As I left for the hospital the following day, I muttered to my husband, “I’m not leaving the hospital today until I get my baby out.” Once at the hospital, I stomped through the parking garage with my teeth grit and fists clenched. I was ready for battle. I made my way up to the NICU with my head held high and chest thrust forward. If necessary, I was prepared to create a scene.

A battle wasn’t necessary that morning because the social worker had taken care of everything. She explained that Charlie had been, in essence, lost in the system. Due to her intervention, Charlie would be transferred the following morning at 10 AM.

My husband and I joke that Charlie would still reside in the first NICU if it weren’t for the NICU social worker. She was one of two social workers that were invaluable during our preemie journey. The second social worker was from the March of Dimes. That story is another post for later this month.


Meanwhile, On Capitol Hill…

It is easy for me to get wrapped up in the chaos of our daily lives. I am so busy trying to survive the ups and downs that I sometimes forget about happenings that occur outside of our bubble.

Thankfully, I was informed last week that there are two pieces of legislation currently in front of Congress that concern premature birth and newborns.

One piece is the PREEMIE Reauthorization Act (S. 252/H.R. 541). According to the March of Dimes website:

“If enacted, the bill will authorize enhanced research, education and intervention activities aimed at improving pregnancy outcomes.”

More can be found about the PREEMIE Reauthorization Act here.

The other piece is Newborn Screening Saves Lives Reauthorization Act (S.1417/H.1281). Once again, the March of Dimes Website provides a concise description of the bill:

“The Newborn Screening Saves Lives Reauthorization Act reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.”

More about the Newborn Screening Save Lives Reauthorization Act is located here.

What can you do?

Advocating for these bills from the comfort of your home is simple. The March of Dimes Advocacy Action Center has made it easy to write your representative in support of this legislation.

Let’s get behind helping all babies.

Photo Credit: Monica DeMariano

Photo Credit: Monica DeMariano


Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.

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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.


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