The Speech I Didn’t Deliver

It’s been so long since I’ve written, I feel like I should blow dust off of my keyboard or perform some other dramatic gesture. It’s not that I haven’t been writing. I just haven’t written anything to be read.

Instead, I’ve been busy writing speeches. Currently, I am in the midst of writing a speech for next week.

A few weeks ago, I wrote and delivered this:

And, last week, I wrote a speech for the March on the Greenbrier. However, I delivered something else. I’m filled with regret because of the speech I didn’t give.

When it was my turn to speak, I made a last minute decision and scrapped my speech. It was cold and windy. The sound system was not fantastic. The crowd was across the street. And, speakers had been asked to keep it between two and three minutes.

I decided to be merciful to everyone and make my words short and sweet. Instead of giving the speech I had written, I did this:

 

The entire thing clocks in at just over two minutes. I regretted it almost immediately.

I’ve given lousy speeches before. There was the speech in the rain when the water wiped my speech off of my iphone mid presentation. Or, there was the Senate Democrats’ live stream in which Charlie jumped and climbed all over me as I told our story.

When one does a lot of public speaking, it is inevitable that a few of them will be mediocre. I try to let those go as if I had played a bad game. It didn’t bother me I had given a mediocre oration. I could shake it off like a bad game.

Yet, all weekend, as I tried to write next week’s speech, Greenbrier bothered me.

The problem with this one is that I liked the speech I had written and there is really no other place that it fits. I can’t simply recycle it for use at a later date.

To rid myself of regret, I decided to post it here.

Here it is. The speech I didn’t give:

How’s everyone doing?!?!?!

It’s a sign of the times that you’re here.

Wow, what a long year it’s been. I know you feel it too. I’ve been fighting for healthcare for over a year.

I lost count of how many protests I’ve attended when I surpassed 50. I stopped counting how many members of congress I begged for my child’s healthcare when I exceeded 30. I have no idea how many miles I have traveled, meals I’ve skipped, or places I’ve slept because of my fight. Many of you have similar stats and stories too.

My political engagement started in January of last year because of my daughter, Charlie. Due to severe preeclampsia she was delivered via emergency c section ten hours into her twenty sixth week of gestation. She weighed 1 pound 12 ounces and was the size of my hand.

During the first few weeks of her life, I watched her overcome, what felt like, insurmountable obstacles. Every breath she drew was a struggle. Her skin was so thin it was agony for her to be held. Her stomach wasn’t mature enough to digest food. Yet, she fought to survive.

When she was three months old, she was well enough to come home for the first time. However, her battle was not over. There were significant consequences due to her early arrival such as motor, speech, and feeding delays. But, she didn’t give in.

We continued to ask the impossible of Charlie: She willed her uncooperative body to move. She gagged on food during feeding therapy until she was eventually able to swallow it. And, she sang until she could speak.

Charlie made extraordinary progress despite serious diagnoses. She wowed everyone. Her access to healthcare allowed her to blossom. Now, access to healthcare is her chance to thrive. Without it, the bright future she fought so hard for will be in jeopardy.

It is when there were attempts to take her healthcare away, by threats the ACA and Medicaid, I said, “Hell no!” and I chose to fight!

When the Muslim ban was implemented, I stood up.

When immigrants were attacked, I resisted.

I was arrested fighting the skinny bill, graham cassidy, the tax scam, and for a clean dream act.

If they come after one of us, they better be prepared to come for all of us.

Whether we are working for healthcare, a clean dream act, a living wage, or other social justice issues, we are all in the same battle: It’s the fight to keep bad policy and self interested politicians from tearing apart our lives. It’s a fight for survival.

Stand up and fight for each other.

Yes, it has been a long year. But, I still have plenty of fight left in me. I can go as long as it takes.

Year two. Let’s do this. Resist.

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The Straw That Broke The Camel’s Back

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It’s been two weeks since the defeat of the “skinny bill”. I thought the victory would cue my exit from the advocacy world. I pictured myself returning to my typical day to day life. But, as I’m finding out, I can’t let go.

I’m afraid the camel’s back has been broken.

In another post, I’ve previously written:

We had to deal with the blows the country’s broken healthcare system dished out. Despite having what is considered “good” insurance and a decent income, our medical debt is insurmountable. Then, there are the automatic denials. Yes, I regularly fight to receive a service I pay for. And, there are the impossible choices. Do I pay the exorbitant co pay for my asthma medication or the co pay for her therapy? (It’s not impossible, really. I pay her copay and go without mine.)

When I typed that out, I failed to mention one of those “impossible choices” cost me all of my teeth and parts of my jaw. The losses we’ve endured are so numerous I can’t possibly list them all. And, some are so horrible they are unimaginable to most. Despite everything, I somehow remained stoic and grateful for what little we did have.

When the GOP came after my child with their bad healthcare policy, that must have been the straw that broke the camel’s back. I can’t go back to “normal” as long as this administration is in power. I can’t stand by silently and hope to hold on to what little I have left.

For me, it’s our country’s broken healthcare system that is slowly destroying my family’s future. For others, it’s xenophobic immigration policies, environmental destruction, disregard for science, failure to pay a living wage, outright racism, or homophobic legislation. And now, there are discussions of nuclear war?!?!?

I’ve tried talking to the offending legislators. I’ve attempted to point out how their policies hurt real people. They and their staff dote over my daughter, smile politely, call me brave, and tell me they admire me as they turn around and vote to steal her future. They write poor policy, which they don’t have to live with, in the interests of their donors. These people don’t deserve to be in office.

It’s a moral imperative for me to resist. At the very least, I can’t expect others to show up for my fight if I don’t return the favor. We must stand up and fight for each other.

Well GOP, you may not have accomplished anything legislatively but you’ve done a fine job of creating a passionate activist. As many of you lawmakers have told me, I’m strong and I’m brave. Additionally, I’ve been stripped of my dignity and have stared down my worst fear. Consequently, I’m not easily intimidated nor do I give up quickly. I’m well educated. Therefore, I know it’s not immigrants, gay people, Muslims, minorities, other women, low income families, or whatever scapegoat, you come up with, who have caused my hardships. My troubles are the result of bad policy.

While I’d much rather join the PTA, be a soccer mom, take up gardening, chair a fundraiser, or tend to a local neighborhood association, I can’t. That version of me no longer exists. You broke it. Instead, this activist you’ve created will be busy fighting the lousy legislation you put on the table. I will be working to change things for the better. And, come reelection time, I will be fighting you.

What 36 Protests Taught Me About Taking Young Kids To Protests

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Our first healthcare protest was on January 15. Since then, my five year old, Charlie, and I have attended thirty six rallies, marches, or protests. These are the things I’ve learned along the way during our healthcare battle:

1) The difference between a rally, march, or protest and why it’s important when it comes to kids.

A rally is usually a gathering in support of something. It will often have speakers, cheers, chants, people with signs, and take place in one location. For me, these are the easiest with kids.

A march is a group of people walking from an origin to a destination. Think of it as a mobile rally without the speakers. Depending on the distance, marches can be a little more challenging with kids. During marches, I typically carry Charlie on my shoulders. Because of her small size, she is often overlooked and can easily be stepped on.

Protests are actions against something. They can be as peaceful as a rally or as chaotic as a civil disobedience action. Before attending an action, I decide whether or not it is appropriate for Charlie. For example, I chose to leave Charlie with a friend for the protest at which I was arrested. I knew going into it that I was most likely going to be arrested. I wanted to be sure she was safe and I didn’t want her to get scared.

2) Toilets aren’t always readily accessible. Plan for your child accordingly. Depending on how crowded, how long, or the location of the event, you may have to go a few hours without access to a restroom. I try to make make a mental note of possible bathroom options on the walk from our parking spot/public transportation to the event. If your child is in diapers, be sure to bring plenty. In a pinch, a large sign can provide privacy for a diaper change.

3) I’ve thought way too much about signs. Charlie enjoys making signs. She likes to draw hearts to say “I love you.” Not the most assertive of slogans but certainly the sweetest. If I know an event is going to be long, I wait until we arrive to make the sign. Sign construction upon arrival is a way to make the day more entertaining for her. Plus, the media loves taking pictures of little artists at work.

For sign materials, I recommend the thick chisel tip Sharpies and plastic poster board which can be purchased at craft stores. Plastic poster board is cheap, durable, water proof, and easily rolled up for convenient transport. Many prefer foam board. I’ve found it to be more costly and cumbersome on public transport.

3) If at all possible, leave the stroller at home. I understand not everyone can go stroller free due to individual needs. However, I prefer to carry Charlie. I’ve found strollers to be difficult to navigate in a crowd, a hassle on public transportation, and a liability should we need to move quickly. If you choose to go stroller free, a back pack is a necessity.

4) Bring plenty of snacks and water. Bigger events will often supply snacks and water. However, will the provided snacks be something your child likes or can eat? Can your child drink from a water bottle? For us, the answer is usually “No” (unless you count licking the icing off of mini cookies). My solution is to pack a sippy cup and a handful of lollipops. Lollipops are also a simple way to cut down on chatter while speakers are speaking.

5) Provide entertainment. Charlie enjoys chanting, running around, and meeting random people but, events can become long and boring for her. Upon arrival (if I don’t have any obligations at an event), I will scout out the scene. I’ll choose a spot in the back or off to the side to give her space to run around. If there are trees, I will sit near them. I point out to Charlie that she can try to climb the tree. She’s unsuccessful but, the attempt keeps her busy. Additionally, I bring bubbles. With bubbles, there’s nothing to clean up or chase down in a crowd. Plus, she really enjoys blowing bubbles and makes friends doing it.

6) Prepare For The Weather. Being prepared for the weather is easy once you master the basics:

  • Always bring sunblock and a poncho. Neither is difficult to carry and can make a huge difference in comfort.
  • In wet weather, while being wet can be uncomfortable, the important part is staying warm. Soaked shoes can be miserable. I usually wear sandals in the rain.
  • Layers are great in cold weather. Especially, if you are marching. You may get hot as you march. A hood, knit hat, or earmuffs provide vital protection from the wind.
  • In hot weather, brimmed hats are wonderful to have if you don’t want to be among many crammed under the shadow of a tree in an attempt to escape the sun’s rays.

7) Carry battery back up.  I watched the Facebook Live stream of the #NODAPL protests the night the fire hoses were turned on protesters. I noted how the guy filming repeatedly asked for a charger from others. Since then, I’ve made it a point to carry one (mine has 30,000 mAh). I’ve never needed it to film. However, I’ve met many people at events who needed a charger for their phones or I’ve needed to recharge my phone. I can also take pictures or text as needed without having to worry about battery life.

8) Bandannas are a multipurpose must. They can be used as hair bands, a small towel to clean up spills or wipe up sweat, a cover for diaper changes, a handkerchief, or, in an emergency, a wet bandanna can provide slight protection to allow one to run from pepper spray or tear gas.

9) Have a loose game plan in your head before you go. 

  • Designate a meeting place with others in case you get separated and can’t contact each other.
  • Think of several escape routes in case you become uncomfortable with the situation and need a quick exit. For example, I try to walk along the sides of the crowd during marches in case I need to quickly step out of the crowd with Charlie.
  • Plan for the worst case scenario. For me, that’s getting separated from Charlie. Before every event, I write in permanent marker, “My name is Charlie. My mommy’s cell: xxx-xxx-xxxx My daddy’s cell: xxx-xxx-xxxx” on Charlie. Charlie is not easily understood and, if stressed, can go mute. I tell her if she is ever lost to show the writing to another grown up. Preferably, a police officer.
  • Write important phone numbers (a lawyer, family friend, etc) on an arm or leg. You’ll have it, if needed.

We all have our battles. Whatever yours, get out there and show up for it. Organize. Fight. Win.

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Parenting, Healthcare Policy, And The Story Behind A Tweet

Hi. That is me and my daughter in the left picture of that tweet. (Yes, she is really that joyful and vibrant.) This is the story behind that picture.

My daughter, Charlie, was born ten hours into her twenty sixth week of gestation. She weighed just under one pound twelve ounces and was so small that she could be held in one hand. She resided in the NICU for three months.

People who are fortunate enough to avoid long NICU stays (or prolonged hospitalizations) don’t realize that, in Virginia, there is coverage called institutional medicaid that isn’t financially based. It worked in addition to the insurance from my husband’s employer and covered much of the expense of her extended NICU stay. Institutional medicaid helps many kids who require a considerable amount of care receive it while it protects their families from financial ruin.

Charlie was three months old when she came home for the very first time. Almost from the start, she needed many specialists and therapies to aid her growth and development. The policy from my husband’s workplace covered much of the costs but the out of pocket expenses were astronomical. Fortunately, Charlie qualified for a Medicaid waiver to assist with the out of pocket portions.

Medicaid is not just for families or individuals who are financially struggling. It also provides coverage and services for children and adults with disabilities through the waiver system. In my state, Medicaid waivers help with expenses, allow for services like respite care, and provide adaptations needed for an independent life outside of an institution.

Medicaid services are threatened by the AHCA with cuts and caps. Many of those who will lose coverage are children and the disabled.

Fear of losing Medicaid services isn’t the only reason I lie awake at night. The other reason is that I’m terrified my child will become uninsurable.

The circumstances of my daughter’s birth are considered to be a pre existing condition. Despite what proponents of the AHCA claim, there are not the same level of protections in place for those with pre existing conditions as with the ACA. It relies on state statutes which can be repealed or rewritten much easier than federal law. Also, my state’s statute allows for exemptions and exclusions in which my daughter could fall through the cracks or be pushed through a loophole.

Finally, I’m terrified she will lose coverage due to a lifetime cap. Without the lifetime cap protections provided by the ACA, again, she is reliant on protection from my state’s statute. I’m concerned with the language used in the statute that are supposed to protect her. There are allowances for lifetime caps on “non essential” items. Anyone who has ever dealt with automatic denials knows how many items are considered “non essential” by insurance companies.

If the AHCA is passed, all of these things threaten Charlie’s access to care. That is why you may have seen a lot of us in D.C. lately. I’ve put my heart and soul into protesting, lobbying, and consulting experts. I am learning to read bills and statutes.

After everything she’s been through, all we’ve asked of her, and the seemingly endless grueling effort, it’s going to be bad policy that finally stops her. The passage of this bill will rob her of the opportunity to reach her full potential by limiting her access to healthcare and services. I haven’t been this heartbroken or felt this powerless since the first few days of her life when we were unsure of her survival.

To the representatives that are pushing this bill through: Shame on you. You are not supposed to act as puppets for the powerful. Nor, are you to use the honor and privilege of serving in public office to further your own self interests. You are supposed to work for the common good, behave with decency, and stand up for the most vulnerable among us. The AHCA does none of these things.

I am disgusted with and disappointed in many of our leaders. I’m ashamed for all of us that we have allowed it to get this far.

Rather than announce your disapproval or outrage on social media once the bill passes, fight it now. It only takes a few minutes to call your senators and just a few moments to show up to local offices or demonstrations. If none of these healthcare aspects threaten you personally, you are lucky. However, I guarantee they jeopardize the well being of someone you love. For me, it just so happens to threaten my only child. I have no choice but to fight for her. Who are you fighting for?

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Five

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Today, she turned five.

Tradition dictates that I have to write a post.

The birthday posts are usually the easiest posts for me to write. The process is simple. I let all the emotion that is bubbling inside of me boil over and pour onto the screen. It’s quick, it’s messy, and I usually cry. Afterwards, I clean it up and hit publish.

This year is different. I feel numb.

Maybe it’s because I’ve been too busy with the health care fight to wallow in the emotions that come with anniversary season. Or maybe it’s because, this year, she wanted a party and it spent my reserves. Or possibly, I’m adapting to this life of chaos.

The numbness has made it difficult to come up with today’s birthday post. I had just about given up, but I remembered a few key moments over the last month.

In the last hours of her fifth birthday, here it is, what others don’t understand five years in:

  1. After five years, it is still not over for us. Although I thought it would happen, I haven’t been sorted yet. We continue to exist in the gray, somewhere between hope and acceptance, and with just as many appointments and specialists as when it all began.
  2. I’m so very tired. Between late night feeds, feeding pump alarms, nightmares, vomiting, and diaper changes, I’ve only slept through a handful of nights in the past five years.
  3. Milestones are not something that happen naturally for her. They require a lot of work (and sometimes advocacy and insurance fights) to make them happen. When (or if) a milestone is reached, I’m like an exhausted runner crossing a finish line. I don’t feel milestones approach too quickly, I’m just thankful they’ve arrived. I felt that way about her fifth birthday.
  4.  We’ve lived day to day since the NICU when our neatly packaged life plans were scrapped. I stopped making solid life plans once I realized I have no control over and don’t know how things will play out. I know what I’d like to do and what direction I’d like to head. But, I have no idea what reality has in store for us. I’m clueless as to how all my tiny steps will accrue. I don’t know where things will end up.
  5. Whether it’s transforming a birthday cake mistake into the cake she desired, improvising tube feeds when parts have been misplaced or left behind, or making an ice scraper out of a water bottle, I’ve gotten pretty good at making whatever is available work. I’ve learned to roll with whatever is thrown at me. Because of this, I’m not easily intimidated or stopped.
  6. I’m accustomed to handling and dealing with the unimaginable. When lousy things happen, I sigh and think to myself, “Pile it on too. I’ll dig through it eventually.” I don’t know if that feeling is resignation or perseverance.
  7. I have yet to figure out how to reconcile my emotional side with my logical side. My emotions still don’t care what my logic knows.
  8. It’s hard, it’s miserable, and it’s not at all what I wanted or hoped for… but wow, do I love it. I’m thankful that, despite everything, I’ve found what I need.

Impostor

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The feeding pump alarm went off three times last night. When the ice cream truck rolled through the neighborhood a little after 10 AM, Charlie begged for me to scrounge around for change and unhook her from the tubing. It was enough for me to decide to give up on sleep.

“Oh great, it’s Mother’s Day”, I grumbled to myself as I sought my morning caffeine. Every year since I’ve written the Unpopular Post, the reasons for my Mother’s Day aversion have evolved. This year, there are three.

First, as with every year since I became a mother, Mother’s Day is the official start to my Anniversary Season. During which, dates on the calendar, seasonal sounds, and even the weather trigger memories that, although it was five years ago, feel like they happened yesterday. I’m forced to reconcile thoughts and emotions as they make their unexpected and unwelcome appearances in my daily life. I have yet to figure out how to smoothly navigate Anniversary Season.

The second reason for my Mother’s Day repugnance is due to my lack of enthusiasm for holidays in general. Let me clarify. Our lives are not sad. On the contrary, there is an abundance of joy and celebration in our lives. Our lives are simply different than most others’. For us, special days involve seeing music, playing outside, camping, road trips, adventures with friends, and milestones.

Due to the complexities of our journey, holidays are meaningless. However, that concept is difficult to explain to a small child. Therefore, we go through the motions of holidays for her. While it may provide some normalcy to her, it makes me feel distant and separated from everyone else.

That brings us to reason number three. Mother’s Day makes me feel like an impostor. While many of my women friends delight in rehashing pregnancy memories or birth stories, I avoid the conversations. I have no clue how to participate. There are no pictures of me with a baby bump. I barely felt her flutter in my stomach before she was delivered. I never went into labor. I missed my own baby’s birth and delivery. There was no baby shower, birth announcements, or any of those typical consecrating moments.

I call myself a mother but sometimes I feel like an impostor. So much of our parenting journey was lost or forever changed that I feel like I didn’t fulfill the prerequisites. As I move forward, the feeling occurs less and less. But, from time to time it still creeps up on me. Nothing ensures its return (and the overall feeling of loss) quite like Mother’s Day.

Having her is the greatest gift, joy, honor, and privilege of my life. However, I’m not ready to celebrate Mother’s Day yet. Maybe some day I will. Until then, it’s another one of those holidays where I smile politely and go through the motions while feeling empty and somewhat conflicted inside.

 

The Injustice Of A Micropreemie Birth

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Throughout my life, whenever things got rocky, I’ve always blamed myself. I’d say to myself, “I didn’t try hard enough”, “I must have screwed things up.”, or “If only, I was better…” Naturally, when my daughter was delivered at twenty six weeks gestation due to severe early onset preeclampsia, I initially blamed myself.

Despite it’s crowded conditions and chaos, the NICU is a lonely place. There was plenty of time for reflection in between my heartbroken sobs and pleas for her life. I had three months to replay every moment of my pregnancy. I wanted… rather, I needed… to know what I did wrong to cause my only child’s suffering. It would have been easier to blame myself.

I went through a check list in my head. My husband and I had waited until we were ready to have a child. We had a stable income with “good” insurance. I followed the doctor’s instructions flawlessly, made healthy food choices, took prenatal vitamins, avoided caffeine, and didn’t go near cigarette smoke.  I even received a clean bill of dental health before becoming pregnant because I had heard that oral health was important in pregnancy.

Maybe I was a little too uptight. But, I had someone else’s life in my hands. I wanted to give my baby everything I possibly could. I didn’t want to screw up my pregnancy.

Even though I checked every box, it wasn’t enough to protect me.

Imagine my horror when at twenty four weeks gestation, I was diagnosed and hospitalized with preeclampsia. Actually, it wasn’t horror at first. It was disbelief. I said to myself, “It’s a mistake. Things like extreme prematurity doesn’t happen in pregnancies like mine. These are the kinds of things that happen to other people, not me.”

After a week on hospital bedrest, a nurse told me that I didn’t have much longer until my baby’s delivery. I cried myself to sleep that night. I’m ashamed to admit it now but, I remember thinking, “It’s not fair. I did everything I was supposed to do.”

Ten hours into my baby’s twenty sixth week of gestation, she was delivered because we were both dying. She weighed 790 grams (just under one pound twelve ounces).

During her three months in the NICU, I went from blaming myself to understanding that sometimes you just draw the short straw in life. Good and bad things simply happen.

We left the NICU happy that she survived. It was enough at the time.

However, our peace was short lived. We had to deal with the blows the country’s broken healthcare system dished out. Despite having what is considered “good” insurance and a decent income, our medical debt is insurmountable. Then, there are the automatic denials. Yes, I regularly fight to receive a service I pay for. And, there are the impossible choices. Do I pay the exorbitant co pay for my asthma medication or the co pay for her therapy? (It’s not impossible, really. I pay her copay and go without mine.)

As twisted as this all seems, I still would have stoically carried on. I assumed the hardships were the price of a miracle. I told myself it was the “anything” I swore I would trade for her survival during her first few weeks.

That little bit we still have left is threatened. Without the preexisting condition and lifetime cap protections of the ACA, my daughter is uninsurable. My daughter’s future looks pretty bleak without insurance.

Currently, services such as physical therapy, occupational therapy, and speech therapy allow her to develop skills to lead a typical life. Likewise, her doctors manage any complications that arise from her early arrival. Because of this careful management, she is growing and developing well. She is a bright, inquisitive, joyful, and beautiful child with incredible potential. Taking away these services is stealing her chance.

I won’t let that happen.

A flood of emotions was triggered by her premature birth. The one that hurts the most is the injustice of the ordeal. Despite Rep. Mo Brooks remarks (After which, to his credit, he immediately back pedaled. At least, he understands how callous his words were.), my daughter has led “a good life” and we’ve done everything “the right way”. It didn’t work out for us like we had hoped. And, it cost us nearly everything.

We’ve surrendered our comfortable middle class lives, our dreams, our security, my health, and our dignity due to this country’s healthcare system’s shortcomings. This is why I will fight until my last breath. I have nothing left to lose.

Say whatever you want about me. Call me a radical, a libtard, an activist, or whatever you please. The reality is I’m just a mom. I will continue to lobby, write letters, make phone calls, march, and volunteer at free clinics. I will do whatever it takes. At this point, the only thing I have left is her. And, I refuse to give up on her.

This is bigger than partisan politics. It’s about people’s lives.

I’m Afraid I’m About To Be Sorted

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Two years have passed since I’ve regularly written about Charlie. I stopped writing for many reasons. One reason is that I want Charlie to have her privacy. After all, who would want to grow up with their lives detailed on the internet? Another reason is due to Charlie’s activity level, it was harder and harder to find time to write. Third, it was difficult to move forward if I kept revisiting the NICU in my head. Finally, I was never a writer. I never wanted to be one or thought of myself as one. It was just something I did (and do) to work my thoughts out. Writing is how I empty my head of the things bouncing around in it.

Here I am, over four years since I started, writing again.

For better or for worse, my life is still very much entwined with Charlie’s. We’ve navigated several big changes since I last regularly wrote. We’ve moved, we’ve stumbled our way into activism (this picture is better), Charlie got a g tube, and I even tried to return to the work force. Sadly, we haven’t gotten any closer to that mythical promised land of “catching up”.

I’ve written how, for parents like me, it feels like we are lingering as stand by passengers at Schiphol hoping to board the next flight out of Holland. Over the years, it occurred to me that it’s more like waiting to be sorted. Currently, I don’t feel like a preemie parent anymore. Preemie’s catch up and move on. We haven’t. Nor, do I feel like a parent of a child with special needs. She may eventually catch up. I’m caught in the middle still figuring out where we fit.

I’m afraid I’m about to be sorted.

I thought I would feel relief at knowing one way or another of where I belong. I assumed knowing was better than not knowing. But, that’s not at all how it feels. I’m terrified.

Next week, Charlie has testing for school. I suspect the results will sort us. And, it’s not into the group that I hoped and thought we’d end up in. I don’t think we’re going to be able to leave this all behind.

Maybe, this feeling is just my broken intuition acting up. It could be a false alarm. However, I don’t think it is. I’ve felt this feeling once before. It was when I knew “something wasn’t right” all those Christmases ago. It’s a familiar feeling and not the one of outright panic.

The only thing I can do is brace for next week’s blow. Fortunately, my modus operandi is figuring things out one day at a time. This is really no different. Ready or not, next week, here it comes…

Sort me.

 

 

She’s Doing The Best She Can

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The Mother’s Day advertisements have started. Most people don’t notice them. I loathe them. Mother’s Day is the beginning of anniversary season for me. How is it almost here again? It seems like the last one just ended. Just like Charlie’s arrival, the feelings of this year’s anniversary season are premature.

A few nights ago, I tried to explain my world to a friend. I wanted her to understand how the rollercoaster ride of the NICU hasn’t really ended for parents like me. The ups and downs are not nearly as frequent but very much still there. I needed someone to understand what it’s like to continuously hold your breath for five years while waiting to see how your story plays out. I wanted her to know that I am stuck somewhere between hope and acceptance. I fear I did a lousy job.

Yesterday, I took Charlie to a park. I watched her play as I recalled the previous night’s conversation. I tried to reconcile hope with acceptance. After all, they aren’t mutually exclusive. I’m stuck on the idea of “catching up”. I know now catching up is a myth. Why can’t I let it go? As I observed her among the other kids, my heart sank with the realization that we may be holding our breath for quite some time to come.

The afternoon grew into evening and it was time to go. Charlie fought when I gathered her to leave. I sighed, picked her up, sat on a bench, and held her as I waited for the wailing to pass. I rocked her and reminded myself, “She’s doing the best she can.” It’s my mantra for moments like that. It’s how I stay patient and keep my cool. I found myself muttering those words a few times yesterday. It was one of those days.

That is why, last night, I wasn’t in the mood to look at more preemie or hospital stuff when a friend messaged a video to me. I reluctantly clicked on the link and waited to roll my eyes at the typical feel good propaganda that too often circulates. I watched the video and started to cry. Unlike other videos, media, and essays that fail miserably at their attempts to portray my experience, this one was eerily accurate.

The video reenacts the dips of the proverbial rollercoaster ride that few will discuss. However, the dips are just as significant as the peaks. Maybe even more so. Most celebrate the victories but few are there for the falls… even less comprehend them.

Over the last five years, I’ve lived this video.

I will start with the empty crib. My best friend gave me Charlie’s crib the week she was born. Even though we had Charlie’s crib for months, the empty crib was only set up for a few days before she came home. Most of her baby stuff stayed in their boxes until the last few days she was in the NICU. I knew I couldn’t bear to disassemble her things if she never came home.

Next, there is the mom with the doll and the feeding pump. Charlie’s feeding pump is featured. We were the actors in that scene sixteen months ago when Charlie had her button placed.

Finally, there are the moms crying in random places. I wasn’t much of a crier before Charlie. That changed when I found myself sobbing in front of Charlie’s isolette the first time I met her.  After that, I’ve cried countless times in odd places. I’ve assumed the exact same position as the mom in the hospital hallway, cried in the shower, and slid down the wall like the mom in the laundry room. Yep, I’ve cried in the car.

However, the video did leave out a couple of things. It doesn’t show the moms holding their kids for medical procedures like a blood draw, a dressing change, an injection, invasive procedures, etc. After nearly five years of frequent and regular restraint experience, my technique improves but it will never be easy.

Additionally, the video also leaves out the little things. The things you’d never know to miss until they’re gone. The invisible losses.

The images in the video show what I have been unable to explain. It’s not another dismissive feel good preemie story. ALL of the feelings I have are valid. My feelings of defeat and moments of desperation are real. Others feel them too. Those are the reasons why I feel like a stranger to almost all other parents.

I know now that it’s not just me. On the days where I feel like I can’t possibly handle any more, that I’m not enough, or that it’s just too hard, I can be patient with myself. She’s (by she, this time I mean me) doing the best she can.

Memories And The Making Of An Activist

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Today, I’m putting the finishing touches on my knitting project to be discussed in my next post. But first, I want to write about something completely off topic from my crafting adventure.

Yesterday, Charlie and I attended a march in Washington, DC. We’ve attended several rallies and marches lately. Activism and political participation is something I’ve always believed in. I’d like to say it’s because I’ve read an abundance of Abbie Hoffman, Saul Alinsky, Howard Zinn, and that The Irony of Democracy blew my mind. Or, I claim that personal experience has shown me the difference one person can make. While all of that is true, in reality, it started with my grandpa.

My grandfather died ten years ago after suffering from dementia.The only things I know for sure about Grandpa is through what is written and through my interactions. For some reason, he always seemed to be in the background.

What is written is the easy part. Here are excerpts from his obituaries:

“(He) started working at Westinghouse after the war. He was president of Local 1581, International Brotherhood of Electrical Workers, from 1949 to 1950 and from 1951 to 1971. At the plant’s peak employment in the early 1960s, the union had nearly 6,000 members.

From 1971 until retiring in 1983, he served as a top official and chief national negotiator of the union’s Westinghouse Conference Board in Pittsburgh.

(He)was active in many civic, political and charitable organizations in Depew, Lancaster and throughout Erie and Niagara counties.”

“(He) put his heart and soul into organizing that company into IUE Local 1581. He later served as secretary and assistant chairman of the IUE Westinghouse Conference Board. He was 88 when he died on February 10th.”

I didn’t know most of this until after he died and I read the obituaries. Prior to that, what I did know was from memories. They are merely random bits and pieces of interactions.

For example:

As a small child, I knew Grandpa was in a union. When a store’s employees went on strike, he explained why one should never cross a picket line. I didn’t understand his union work at the time. I thought he liked to help people. It wasn’t until I came across my own battles that I understood how the political is personal and what drove him to his involvement.

In grade school, Grandpa watched me and my siblings often. I remember how I climbed high into trees, froze up with fear, and couldn’t get back down. Repeatedly, he patiently coached me, branch by branch, back to the ground.

One afternoon, my brother called me stupid while Grandpa helped me with my homework. Grandpa snapped at my brother and said, “She’s a smart girl. She just needs someone to answer her questions.” It seems like an insignificant moment to remember. However, it was the only time someone called me smart or helped me with my homework as a child.

The last time I saw my grandpa outside of a healthcare setting was during a visit from where I lived in Florida at the time. I remember how I enthusiastically described a seasonal position I accepted teaching rock climbing in Colorado. He said he was excited for me. But, he pleaded, “Please hurry up and finish college so I can die knowing you will be all right.”

Grandpa died two years before my long over due college graduation. I thought about him on my graduation day as I shifted uncomfortably on a stadium folding chair in the burning sun.

Last weekend, I wished he was around when I needed some tactical guidance and the friend I usually discuss these things with was out of the country. Fortunately, after a brief panic, I was able to figure things out on my own. However, I often wish he was around to answer questions.

At yesterday’s rally, I watched my daughter enthusiastically chant and wave her sign during the march and thought of Grandpa. I wondered if us being there was because of him. I wondered if he planted a seed. As I carried my daughter through the march, I thought, “You know what, Grandpa? I’m going to be all right. And, finishing college has nothing to do with it. She’s going to be all right, too.”