Things – 3

Everything happened so fast. Too fast. 

Now everything keeps repeating. 

Every day…

Every night…

In my sleep…

The nightmares change, but the fear is the same.

**********

**********

I’m walking through a store with my dear sister, casually browsing aisles. She asks, more to herself than to me, how do I manage to not fall apart. 

Oh but dear sister I do. I fall apart in a million times a day. And night. 

And in a million crazy little ways. 

I stop and look at her and tell her to look at me and just listen. I ask her to isolate the beeping sound of the scanners at the registers scanning merchandise from the shopping carts. 

I ask her what does that sound like, she says it sounds like people shopping. I tell her, to me, that is the sound of the heart monitors beeping to the tune of my daughters heart when she was in PICU (pediatric intensive care unit) and NICU.

Beep, beep, beep, beep, silence… I catch my breath. I focus on the sound of my own heart beat. The words keep ringing in my ears “Strain on heart”; “Patient presents Tachycardic.” A fast heartbeat that is persistent, usually over 100 beats per minutes is called Tachycardia. Her heartbeats were into the 130’s. Then the rhythm starts again…beep, beep, beep.

Her eyes fill with tears.

No, no, no dear sissy. We do not waste mascara on tears. Have you see the price of mascara??  

I do not tell her how my stomach clenches when my phone rings and I see its one of my daughter’s doctors.  Or the school calling.  Or my daughter. 

I do not tell her how I am startled awake in the middle of the night roused by the sudden, faint sound of my daughter calling out to me “Mom!”  

Only to realize she is sound asleep in the next room.  Sometimes the sound is not faint. It is crisp and loud and with a tone of urgency.  “MOM!!” But, alas, she is alseep.

Dear sister sees that I barely touch my dinner some nights.  Other nights I eat like I am eating for two, but then I disappear into the bathroom doubled over with stomach cramps and nausea.  

She notices the bags under my eyes and the puffy eyelids.  We do not speak about how some nights I might collapse into bed at 8:30pm, but awaken at 4am. But she knows. Many times the exact time is 4:18am.  My brain swirling. 

Other nights I am wide awake until almost 2:30 in the morning and my alarm goes off at 5:30am.

She watches silently.  I pretend to not notice her.  She is watching with tears in her eyes and in her heart. 

Things – 2

Things 2

Strange times indeed, Mr. Lennon.

Pandemic madness – June 2020 was The Boy’s emergency appendectomy in a COVID world.

Mid-summer 2020

CEO of my job announced permanent closure of the 100+ year old business that serviced the community.

I worked for that employer for more almost 25 years.

Late Fall 2020

The final weeks leading up to my last day of work were fraught with frustration. I was humiliated, gas-lighted and berated by Administration during the last 3 months of operations. I walked away from that job bitter, angry and not one ounce sad. But I was also satisfied that I am able to lay my head on my pillow at night knowing that I stood up for my co-workers and did right by them.

I was unemployed for a brief time.

And it felt wonderful!!

I got to spend quality, I mean, deep down quality time with my family. The kind of time that was of worthy a Hallmark or LifeTime movie.

New Year 2021

And then January came. Another surgery for my daughter.

I regret going forward with her undergoing another surgery. Not to sound like Cher, but “If I could turn back time…”

Every day…

Every night…

In my sleep…

It keeps repeating.

The ambulance ride….

The beeping monitors….

The strained look on the doctors faces….

The fear in her eyes….

The fear in mine….

The wonderful, encouraging nurses….

The other sick children….

I need to remind myself of my favorite NICU nurse. She should tell me… your daughter is something else. She is spitfire! She is the boss!

My children are my life. ❤️

Things – 1

I thought the emergency appendectomy during Covid was bad. Well, once again, the universe proved me wrong. Things got way worse. 

So much worse. So much so, that I cannot even think of a title for the next series of postings. It was so bad that I didn’t have time to come back post my last post. Apparently it had been sitting as a draft since June 2020!

I am working toward getting my act together. Throughout it all we are extremely lucky and grateful to have experienced beautiful blessings along the way. I have to remember to count them.

Thankfully we are all currently doing well, but we are all forever impacted. Finding our way back to a different kind of normal has been challenging, but we are managing.

You may be asking yourself, what the heck is she talking about? Yeah I’m not so sure I can start writing about it just yet. I can still barely breathe from the trauma we experienced in the last 9 months, more specifically, since the start of the new year, so I am taking it slow.

I’ve just started therapy because of what we went through. The  PTSD has hit me hard. Real hard. It’s the worst it’s ever been. 

I’ve only had 4 sessions so far. My therapist has shed tears during 2 of the 4 sessions with me. I’m thinking I may need a new therapist. One who is not a parent. One who is not sensitive. I think my trauma hits her too hard.

Or maybe my next therapist should be a drill instructor. Someone who will help me:

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PTSD – You Can Run, But You Can’t Hide – part 2

Holding back my tears and holding my breath, I reluctantly signed all the consent forms allowing the doctors to remove my son’s deteriorating appendix. I surprisingly, and coherently answer all the questions and list out what the anesthesiologist needs to know: sleep apnea, hearing loss, tinnitus, asthma.

I kiss my brave boy on his forehead right before they wheel him away.

Tears are flowing before I leave the pre-op area.

While it is true that I have witnessed my children be put under anesthesia 26 times before. IT DOES NOT GET EASIER. It gets familiar, but does not get easier. My feet get heavy as I walk away. Have you ever stood at the end of a shoreline and felt the tide wash sand on your feet? And as you stand there, and the tide ebbs and flows, your feet sink deeper and deeper into the sand. And soon, your feet are buried, almost up to your ankles and you try to lift your foot, but it is so heavy. And you feel unbalanced. But on the beach, the unbalanced feeling is fun. This is not. It’s just heavy.

I need a hug. I desperately need a hug. My husband cannot be by my side because, you know, “COVID rules”.

I tearfully text my family in one group text and then copy and paste the exact info to another chat group for my husband’s family.

I decided that maybe I could find the high risk specialist who cared for me when I was pregnant with the twins. Whenever I am at the hospital we unintentionally bump into one another. I thought I would surprise her and find her this time.

The surprise was on me! Her office relocated to a new location.

I am a glutton for punishment. I realized that I was on the same floor as the nursery and NICU. I ask the unit clerk if I could be allowed to visit “the wall” of the NICU. She tells me that unfortunately, they are not allowing visitors to the NICU, only parents. Stupid “COVID rules.” Tears. Tears I cannot control start rolling down my cheeks again. In between sobs I try to explain that I am not here to visit any babies. I just want to see “the wall”. I try to explain that my son is a NICU graduate. And I need to find his tile. I explain that he was in surgery. And I need to find comfort and hope. And if I could just touch his tile, it would mean so much to me.

Now she has tears in her eyes. She bows her head and whispers “follow me”.

She brings me to “the wall”. I stand there in awe. Inspiring amazement. So many children that are alive because of the phenomenal men and women who dedicate themselves and their lives to saving the tiniest of lives. And there are so many more who did not make it to the reunion, but are living and thriving because of these doctors and nurses. It was just beautifully overwhelming. This is the first time I had visited “the wall”. After the 2016 reunion, I never went back to see the final product. Too many painful memories. But such a beautiful tribute.

I find my niece’s tile. She too is a graduate of the very same NICU. My lips start to quiver trying to stifle my emotions.

I find my daughter’s tile. Now come more tears.

I find my friend’s son’s tile. We met when our boys were in middle school and she and I quickly realized that we, as well as our sons, had so much in common. Both boys had the same rough start.

My eyes finally fall on my son’s tile. And I smile. And I cry. And I know how many times he was near death, but always pulled through. I know that he will be fine. I say all this to the unit clerk, who now needs to touch up her mascara. She allows me to take pictures.

As we head back toward the elevators, I thank her for not calling security on me and for having the compassion to allow me this moment. And before I knew it, I was kissing my groggy and loopy son in the recovery room. And now I cry tears of joy and relief.

The Wall

PTSD – You Can Run, But You Can’t Hide

After 9 hours in the emergency room, the kind ER doctor informed us that the cat scan revealed that my Boy has a mild case of appendicitis. It was now 1:30 in the morning. They injected an antibiotic into his IV and informed us that he would be staying “overnight” (it was already almost 2 in the morning).

They said that the antibiotic should keep the infection at bay and the surgeon will evaluate the need for surgery in the morning. Evaluate. …

As they were wheeling him to his room, by heart rate started to quicken. I could swear the beating of my heart was louder that the hum of the elevator as we approached the 4th floor.

“Look down. Look down at your feet. Don’t look around. There are too many memories here. If you look up, you are going to see something familiar. Something you will remember from the last time you were here. Don’t do it. Don’t look up. Don’t cry….don’t cry…whatever you do, don’t let your son see you crying.”

The room seemed so dark. And sad. It was sadder than I remembered. Even my son said, “this room seems so dark and sad”. I held back my words and emotions. I helped settle him into bed. He tossed and turned trying to get comfortable without pulling on the IV.

I tossed and turned on the foldable vinyl loveseat/bed. I did not want to unfold it to open to a bed, but it is not comfortable enough to snuggle into, especially when you stand at 5’10. Maybe if I was shorter I could have curled into it. I remember having that same thought all those years ago. The last time I was up on this unit, my son’s little body was ravaged by an unrelenting fever of 105º. He was lethargic and had multiple IV’s inserted into both his arms. One IV was an IVIg transfusion that replaced his platelets. He was 11 months old. I slept with him in the metal crib that looks and feels like a small jail cell.

I tried to push away those awful memories.

But my mind was racing. I was trying hard to process everything that was happening.

We have spent over three months cloistered in our home trying so hard to minimize our risk of exposure to Covid. I have been working from home up to 10 hours a day. The kids have not ventured out unless absolutely necessary. We have tried to do everything to stay healthy.

And yet, we are in a hospital. The germiest of germy places. And now my son may need suregery. During a pandemic.

We both tossed and turned until at least 3:30am.

The nurse said the doctor will be in around 7am to do rounds, so I set my alarm for 6:30am. With a stiff neck, and achy lower back, I groggily turned off my alarm. I sat trying to stretch out my stiff and sore body, casually drifting in and out of a light doze.

At 7:05am, the overhead paging system started playing “Here Comes the Sun” by The Beatles. At that moment, the music and lyrics were so comforting and I felt peace:

Here comes the sun
Here comes the sun, and I say
It’s all right. It’s all right

It was such a nice way to wake up.

At 7:25am, the nurse pops her head in and announces “Transportation is here to take you up to the OR.” My son and I immediately stare at one another, eyes wide open! “Um, excuse me, but like what happened here? I thought the surgeon was going to come and evaluate him for surgery. What happened to the evaluation? Are you sure you have the right patient?”

She cheerfully replied, “Oh yes. He is on the schedule for surgery. He is up next!”

“Well, ummm, I would like to meet the surgeon who is about to cut open my son.”

“Oh dear. I am not sure you will be allowed up to the OR.”

She saw my eyes widen and my face redden. Before I could find the words she blurted “COVID rules, I am so sorry.”

I muster our “But he is still a minor! He is not 18 years old just yet. For the next 6 months he is still a minor. There is so much the doctor and anesthesiologist need to know about his conditions. More importantly I would like to see the whites of the eyes of the individual who is doing the surgery. For Pete’s sake, I don’t even know the surgeon’s name!”

The charge nurse came in and assured me that I would be allowed to accompany my son to the OR and meet the doctors performing the surgery.

Thank goodness!

I Can’t Get the Words Out

I sat, for nine hours in the emergency room with my son, hoping, wishing and praying to get out of there and get home ASAP. I was trying hard to not remember the details of the last time we were in there. Thankfully, we are not frequent flyers of the ER. All but one of my kid’s surgeries were planned in advance. The only surgery done under emergent conditions was my son’s chest tube surgery when he was three days old. As a baby born 9 weeks early, his lungs were underdeveloped and he needed to surgery to save his life.

To this day, I cannot thank the doctor who saved my Boy’s life. This neonatologist saved my son’s life when he was only 3 days old. I had an opportunity to thank him again at a NICU reunion in the fall of 2016. I went up to him to shake his hand. It has been 13 years since I had last seen him. All I wanted to do was to convey my eternal and extreme gratitude for his skill and talent in saving the live of my child and so many more countless others. When I had to opportunity to speak, I sounded like a wounded, high pitched, alien. All I did was sob, uncontrollably. My son had to explain who we were. It was beyond embarrassing.

Fast forward to 2020. Once again, I found myself in the same, familiar situation.

After my son’s emergency appendectomy, as we were being transported from the recovery room back to his room in the PACU, I glanced at a room door with a sign on it. The signed announced that it was the office of Director of the unit. I immediately recognized the name of another doctor who, under a different set of circumstances, saved my son’s life when she diagnosed and treated him for Kawasaki Syndrome when he was 11 months old.

I asked the charge nurse if the doctor was on duty that day, and to my delight, she was. Within 10 minutes, this exuberant woman, standing about 5’4, bounced into our room and announced “Someone asked to see me?”

I immediately burst into tears. If it wasn’t for Covid, I would have hugged her!

I started out strong, “I am sure you don’t remember us, but back in 2004, you…you.. waaaahhhhhh.” Once again, my son saved the day for me! He spoke up and said “My mom gets like this whenever she sees a doctor who saved my life.”

I felt like such a hysterical mess. Crying to this poor woman. I caught myself and gathered enough words to tell her how grateful I was for her efforts to save my son’s life. She was humbled. She said that it is not everyday that she gets to follow up on her patients after so many years after treatment. She was so proud of how much he has grown. And I am sure she realizes that she is responsible that! If she didn’t do what she did, and if she didn’t do it as well as she does, he may have not lived to see her again.

I cannot thank these doctors enough!

When the Universe Makes You Face Your Fears

There is a meme that says “I just don’t have time for the nervous breakdown that I deserve.” That. Meme. Is. Me…..

I admit that I have been experiencing anxiety and panic attacks whenever I go out to the market and start trying to embrace and live in the “new normal”. Our governor has been opening the state in phases and I am having trouble with the “new normal”. The new normal that includes me continuing to work from home; wearing a mask whenever I go out; trying to leave the house as little as possible.

With that being said, you can imagine the abject horror when my pediatrician instructed me to take my child, to all places, the emergency room.

Let me set the stage:

11am, The Boy: “Mom, my stomach hurts.”

3:15pm: Conversation my child hears me have with his pediatrician:

“My Boy has had stomach pains since 11am. I told him to go fart, poop, and drink Mylanta. He did all three, but the pain has not gone away, actually it has gotten a bit worse. The pain is at the top of his stomach, above his belly button. Nope, no fever, no vomiting, no diarrhea. Are you fucking out of your mind??? Are you absolutely sure??? What if I don’t want to? Why can’t I just bring him to you? ARRRRGGGGGGG. Fine!

Nine. Three. Two. Twenty Seven. One.

NINE: We spent nine hours in the emergency room.

THREE: Three COVID positive patients that needed a Cat Scan before my son needed his. Which means they too were in the ER.

TWO: 2am my boy gets admitted into the hospital.

TWENTY SEVEN: This is the 27th time one of my children has needed to be under general anesthesia for surgery. I only have TWO children.

ONE: I am One Stressed Out Hot Mess Express.

April 19, 2020 C19 Expectations

Tomorrow is the beginning of the 5th week of me working from home; and the start of 6th week of the kids distance learning from home.

The challenges we are facing are not unique. But they are OUR challenges.

I thought this shelter in place would allow me more time to do the things I never have time to do. I want to bake bread with the kids, spend more time developing my photography skills, participate in more virtual college tours with and for the twins. But most importantly, I want spend more time with my kids (and less time getting frustrated with them).

But we are all less motivated to do more because we are all still so overwhelmed with school and work.

I just want more quality time together with my kids. God willing, next year, they will be committing to their college of choice. If all goes well, we will be preparing for prom, graduation and hopefully many more celebrations.

It’s kind of hard to think that far ahead given these uncertain times, but I want to hold on to them a little while longer. And I want to worry less.

I worry about the malformed veins and clots my daughters body keeps developing. I am anxious and scared as heck about scheduling that MRI to see if the veins have grown up her back.

I worry about my son’s asthma. He has been needing to use the nebulizer every night for the past 4 nights.

I try to not get too ahead of myself. But I’m a mom. It’s my job.

As the government is moving toward reopening the economy , I hold my breath and try to let my hope for the future outweigh the worry and fear.

April 13, 2020 C19 The Food Shopping Challenge

Fri, March 20 was the last day I was physically in my office. Today is the start of week 4 working from home. It’s been a blessing! It’s been a bit challenging at times, but overall, it’s been more of a blessing.

I work in healthcare and almost all my coworkers, who are direct care staff, have mostly tested positive for Covid-19. I am so grateful to be able to work from home.

I have been very good about staying home. I wear my gloves and mask if I need to go out. Keeping the kids home has not been too much of a challenge. We got this social distancing down to a science.

But grocery shopping has been my biggest challenge. Two weeks ago, during the height of my anxiety/panic attacks about grocery shopping, I desperately swore I would arrange weekly grocery delivery services through a large supermarket chain near my home. I tearfully loaded my virtual shopping cart.

I have been modifying my virtual cart up until last night. As of 8:00 this morning, my estimated shopping bill was $243.66. I was excited that I was dodging a trip to the market.

I heard the delivery truck pull into my driveway and I scrambled for cash so I could give the driver a healthy tip. After all he was preventing another anxiety ridden episode of me crying. And he was helping me practice social distancing by bringing my groceries to my door.

I opened my garage door and waited for him like a puppy waiting for a treat. I could here him sorting through the truck, gathering my order. I could hear him. He was coughing. And he was not wearing a mask. Uuuggghhhh.

After two quick trips into his delivery truck, he dropped off my treasures. I cannot explain the expression on my face when the delivery man dropped off only 7 bags (all 1/2 empty) and handed me my receipt. My total bill was reduced to exactly $115.00.

From $243.66, my bill was only $115. I am repeating myself because I still can’t believe it.

My jaw literally dropped when he told me that more than half the items on my list was out of stock! I placed my order two weeks ago and more than half of it was out of stock. Incomprehensible.

Panic set in with the realization that I will need to go to the market after all. Not cool. Not cool at all.

Easter 2020

The days have been flying by. The kids last day of school was March 13. They haven’t seen their friends or really have left the house since then. It’s starting to wear on my social butterfly the most.

Today was a very different Easter celebration. We tried to watch Easter Sunday Mass on tv, but the kids couldn’t get into it. We video chatted with family, instead of sharing dinner with them. And while it’s cute and fun, it’s not the same.

I pulled a muscle in my back so the kids helped prep dinner. I asked them to dress up a little since today is still a celebration. My daughter came out of her room still dressed in her pajamas.

At least they were not the same pajamas from yesterday, but I was not having it. She went back into her room and returned dressed nicely, but still not in a celebratory mood.

This social distancing is hard on everyone. But for kids like my daughter she is missing the social interactions. She has been video chatting with her friends…and texting…and using different social media platforms, but there is so much more that she is missing.

We were lucky that my husband didn’t have to work this weekend. That’s 2 days less being surrounded by positive cases in a closed environment.

We are praying that the curve is flattening and hopefully we will be able to start functioning as a society and community again. We are praying for those who are recovering. And we are praying for those who have lost their lives.