Learning about Grief

I have been wanting to write a post about where we find ourselves these days and what we have termed “finding our new normal.” But those words haven’t hit the paper or the screen just yet. They will in good time. For now, I’ll leave you with an article I came across when I googled that phrase. You can find it HERE.

Here are a few points that I really connected with:

  1. “The goal of healing is not a papering-over of changes in an effort to preserve or present things as normal. It is to acknowledge and wear your new life — warts, wisdom, and all — with courage.”
  2. “Healing is seasonal, not linear.”
  3. “Trauma is terrible. What we need in the aftermath is a friend who can swallow her own discomfort and fear, sit beside us, and just let it be terrible for a while.”
  4. “Love shows up in unexpected ways.”
  5. “This is just a fight that has to be won, over and over and over again…….In the end, the hope of life after trauma is simply that you have life after trauma. The days, in their weird and varied richness, go on. So will you.”

Whether you are in a place of finding your new normal or you know someone in that place, I hope the article might be helpful. Continue to show up. Continue to love. In the end, love always wins.

Hold me close young tiny dancer

“Music produces a kind of pleasure which human nature cannot do without.”
—Confucius

From our earliest days with Eisley, it was apparent to us that she loved music. And more than just loving music, it moved her. She felt it in her soul. She couldn’t help but dance and sway whenever she heard a funky beat. One time we were at a restaurant when someone’s ringtone played a song, and Eisley immediately started bobbing her head up and down. In addition to the head bob, her dance moves included the pointer finger bounce, the hands-waving-in-the-air jam, and the body sway. A very serious look of concentration often accompanied these smooth dance moves. You couldn’t help but laugh when you watched her groove to the music.

Here’s a video compilation showing our girl and her love for music. You’ll notice I have a lot to learn from my dancing girl. I could have taken some pointers from her.

 

#Mamasonthepotty

“Behind the need to communicate is the need to share. Behind the need to share is the need to be understood.”
—Leo Rosten

It’s time for a little comedic break. We’ve had several serious posts so now we’ll pause and highlight an especially funny memory of our time with Eisley. She was a sharp girl who loved to laugh and smile. She picked up sign language quickly and eagerly used it whenever she could. In the three months prior to her surgery, she learned the signs for “more,” “water,” “eat,” “help” and several more. We chose to focus on signs that would be helpful in everyday communication since she hadn’t picked up spoken language yet. I imagine transitioning from hearing Mandarin all the time to only hearing English would be challenging for anyone. We believed it was only a matter of time before she spoke, though, as you could see the wheels turning in that bright girl.

 There was one sign though that became hilarious to our family. I learned soon after bringing home our first daughter that the only moment I had to myself (and I didn’t even always have that) was when I went to the restroom. Having a husband who works from home often allowed me the privilege to hand off one or both of our daughters to him briefly while I took a break and had a moment of peace and quiet. Once he thought it would be funny to come up with a saying and sign for this. He began saying “Hash tag Mama’s on the potty” (#mamasonthepotty) and making the hash tag symbol by hitting his pointer finger and middle finger of one hand against the pointer and middle of the other hand. Here’s a good example.

It wasn’t long before I discovered his little trick. Eisley quickly began using the sign as soon as I handed her off to Shawn while I went to the restroom. As he would say, “#Mamasonthepotty,” Eisley would grin knowingly. It made me laugh every time.

 Here are some more videos of Eisley using signs to communicate her needs. (If only we had a video of her using #mamasonthepotty.)

Eisley’s Birthday

Eisley’s Birthday

While we were in the hospital, I was fortunate to be put in touch with a kind and generous photographer, Suha Dabit. Suha understood the hardship of the PCICU first-hand: Her daughter was born with a congenital heart defect (CHD) and had several open-heart surgeries before she received a heart transplant.

Suha’s empathy has compelled this beautiful soul to donate a portion of her time to take photos of heart children and give families beautiful memories in the midst of hard times. The way she draws your focus to the child and not all of the wires, tubes and machines is a gift. Her work is breathtaking.

I was thrilled when Suha took photos of Eisley on her second birthday. I will be forever grateful for the wonderful images she shared with us because they are tangible way for me to remember Eisley’s special day and the way we chose to celebrate her. Suha even compiled a video of all of the photos, and the lyrics of the song she chose to go with the video so accurately describe my feelings for Eisley. Here’s a portion from Matt Hammitt’s song “All of Me”:

“I won’t let sadness steal you from my arms
I won’t let pain keep you from my heart
I’ll trade the fear of all that I could lose
For every moment I’ll share with you

You’re gonna have all of me
You’re gonna have all of me
‘Cause you’re worth every falling tear
You’re worth facing any fear

You’re gonna know all my love
Even if it’s not enough
Enough to mend our broken hearts
But giving you all of me is where I’ll start.”

Here is the video collection of photos from Eisley’s birthday.

You can read more about Suha’s story HERE. And check out her Facebook page HERE. Follow her on Instagram at WOBHEARTS.

Thanks Suha for giving me these glimpses of Eisley that I will treasure forever.

Special Times in the PCICU with Eisley

Special Times in the PCICU with Eisley

“Sometimes you will not know the value of a moment until it becomes a memory.”
—Dr. Seuss

 There were many small, joyful moments from our time in the PCICU with Eisley that I’ll hold on to as long as I can. For example, I won’t forget the few glimpses of her eyes that we were fortunate to see, the shaky finger she offered me one day as she attempted to swipe left and right on my phone to look at pictures, and the times when her heart rate would return to a somewhat normal level as I sang her lullabies. I also wanted to share a few big moments that I’m grateful for and will remember forever:

 Chinese New Year & Baptism – In early February, Eisley’s condition rapidly declined, and we thought we would lose her. True to her fighting ways, she pulled through. A few days after one especially scary time, I decided I wanted to have her baptized. If she didn’t make it out of the hospital, I didn’t want to have any regrets, and our priest graciously honored my last-minute request. As this event also fell during the Chinese New Year, I took the opportunity to dress Eisley in her China silks to honor a tradition that we maintain with our older daughter. I had been debating for weeks whether or not I should bring silks to the hospital and go through the formality of dressing her. It certainly wasn’t the easiest task with all of the tubes and wires connected to her! Thankfully, our wonderful primary nurse didn’t balk at my request and even went so far as to make Eisley’s bed with special blankets and dress her in her finest silks. My darling girl looked so beautiful!

 Valentine’s Day – After 40 days without holding her, on Valentine’s Day, I FINALLY got to hold Eisley. 40 days. No mother should ever have to wait that long to hold her child. I was on cloud 9 for the entire hour and a half that I held her and for the rest of the evening as well. Considering that we almost lost her the week before that, this time with her was especially poignant. Despite the tubes, lines, ventilator and everything else she was connected to that could have made holding her awkward, I didn’t hardly notice them. I concentrated on her face. She snuggled into my arms and it was if time stood still and the problems of the world melted away. Every now and then she would open her eyes, glance at me as if she was thinking, “Oh good, you are still here with me,” and then close her eyes again. I half-jokingly instructed a nurse to hook me up to a catheter and a feeding tube and I would just hold her for the rest of our time together.

 Eisley’s second birthday – As we approached March 8th, I wasn’t sure what to do about her birthday. She certainly wouldn’t even realize the significance of that day as she had probably never celebrated her first birthday. Plus, under such heavy sedation, she wouldn’t know we were celebrating anyway. However, I decided it was still a milestone that required a proper celebration; not to mention, it was an outlet for me to channel all of my energy in a positive way rather than focus on gravity of her deteriorating health condition. I made a special birthday outfit for her, as I wasn’t able to slip a onesie on her. That day, both she and her sister had matching Cinderella tutus and headbands! I crafted decorations for her door and room, and my mom and brother helped me bring in food for both the day shift and night shift nurses. Our family gathered to sing “Happy Birthday” to her. We even had photo booth props on hand and captured some fun photos with the medical professionals who cared for Eisley that day. For an entire day I didn’t once dwell on any of the ups and downs of her vitals, x-rays, new diagnoses, etc. I simply focused on honoring her. I even got some birthday snuggles! I’m forever thankful for everyone who helped make my crazy ideas reality, as it made that day so special and an enduringly happy memory for my family.

 It would be easy to dwell on all of the difficult, scary, and overwhelming times during our hospital stay. We certainly had a lot of those moments. However, perhaps these dark moments were necessary to reveal the value of those special, bright moments and bring an appreciation to those moments that may not have existed otherwise.

blog 8-1

 “Hope is being able to see that there is light despite all of the darkness.”
—Desmond Tutu

Life on the PCICU floor

More machines

“You never know how strong you are
until being strong is your only choice.”
—Bob Marley

During our long stay in the hospital, many people commented that they didn’t understand how we were making it. How could we possibly hold it all together under the stress of the circumstances? It wasn’t something I acknowledged in the midst of our journey. In fact, I don’t think I fully comprehended how difficult things had been until weeks after Eisley had passed. Back then, I didn’t have time to pause or focus on me. My only choice was to be strong for my daughter, who needed me to be present with her for every moment I could. We just took one step at a time and one deep breath at a time, moment by moment, day by day.

Unless you have spent time on a critical care floor with a loved one, it is hard to convey the difficulty of the circumstances—the waiting, the fear, the dread, the confusion. I realize that everyone’s experience is different, but I think it might be valuable to others to share my personal thoughts and experience on our time there.

Here are some glimpses into a day on the floor in the PCICU:

  • When I happened to leave Eisley’s room, I was attached to my cell phone at all times in case the PCICU called. If my phone rang and I recognized the number as the PCICU, my heart momentarily stopped; I feared the worst until I heard differently. The first night after Eisley passed, I turned off my phone for the first time, and it was the most freeing and yet disconcerting feeling.
  • Shortly after shift change, the doctors, nurses, and nurse practitioners made rounds to get everyone up to speed with each patient. I tried to be present for these meetings to hear new information on Eisley and ask any questions in relation to her plan for the day. Understanding all of the information that was conveyed during these rounds was close to impossible, especially since my background isn’t a medical one. Sometimes what they said made sense and I began to understand what all of the little numbers and details meant, but more often than not it was an absolutely overwhelming blur of information.
  • Life became a daily rollercoaster of emotions, as there was a constant stream of encouraging and discouraging news. Things changed quickly and could go from good to bad or bad to good at any given moment.
  • Planning? What planning? For a Type A person like myself, the lack of a plan was a huge adjustment. There was absolutely no sense of schedule—rounds could happen anywhere between 9 am and 1 pm for morning shift and 9 pm to 1 am for evening shift. A surgery could be scheduled for a certain time, but they could get your daughter early or hours later. I was required to learn to live minute-by-minute, hour-by-hour, and day-by-day.
  • Our room became a revolving door of doctors and specialists. I felt the need to advocate for my daughter and speak up for her since she couldn’t speak for herself, and her past was more complicated and unknown as compared to other patients.
  • Children and parents going through similar struggles surrounded us on the PCICU floor, yet we were discouraged from communicating with them. This seemed a shame since who better to understand exactly what we were going through than these other parents?
  • The noise was constant—the beeping of machines in the room, the alarms sounding down the hall as another child needed immediate medical attention, and the various announcements over the intercom. I got nervous when a “Code Yellow” was called during a snowstorm. The alarm was intended for the hospital staff, but it sounded quite intimidating if you didn’t understand it. Even the clock in the sleep room ticked incessantly until I removed the battery.
  • There was an underlying feeling of helplessness because the things you most wanted to do for your child—touch and hold them—happened only occasionally because so many leads and lines and tubes tied them to machines. A loving connection was something you felt only you could give your child, and yet you couldn’t even provide that.
  • As hard as it was, I had to let go of control and place trust in the hands of medical professionals to make the best decisions for my child’s health.
  • I constantly met new caretakers as shifts would change. After being there for 75 days, we met more nurses and doctors then I can recall. I was thankful that faces began to become familiar to me and was elated when a nurse would be with Eisley for more than just a day. We were fortunate to have “primary” nurses and nurse practitioners who would be with us for almost every shift they worked. These people became my friends, counselors, confidants, medical advisors, and my daughter’s best caregiver and my family’s cheerleader. For the short time they spent with me, they impacted my life for eternity. For that I am forever grateful.

Life on the PCICU floor was undoubtedly the hardest thing I have ever done. At the same time, there were many truly beautiful moments—times of laughter, times of beauty, and times of love amid the heartache. While I would prefer not to relive many moments, I wouldn’t go back and change a minute of it. This journey has shaped me and stretched me in ways I didn’t think possible, and through it all I am thankful.

 

The Kindness of Strangers and Friends

“We must find time to stop and thank the people
who make a difference in our lives.”
-John F. Kennedy

I’m still attempting to process what we experienced while Eisley was in the hospital. My husband and I realized early on that we couldn’t handle this monumental burden on our own. Asking for help was not something we were comfortable with; it certainly wasn’t our first inclination. We did occasionally call for help, but more often than not, we didn’t even have to ask—so many people volunteered to help us and provide for our needs. We felt incredibly supported by family, friends, and even strangers. For that, we will always be grateful and unable to fully articulate our deepest thanks.

The actions demonstrated by others have caused me to reflect on gratitude. Robert Emmons in his Greater Good essay, “Why Gratitude is Good,” writes this about gratitude, “… it’s an affirmation of goodness. We affirm that there are good things in this world, gifts and benefits we’ve received.” He describes the importance of this “relationship-strengthening emotion” as it “requires us to see how we’ve been supported and affirmed by other people.”

I’d like to share some examples of the many ways that people supported us during this difficult time. I hope that you will see the goodness in other people and your faith in humanity may be restored as mine was.

  • Eisley required a lot of blood transfusions—so many that I lost count. My sister Brad Giving Bloodrelayed to our Facebook group the suggestion that people donate blood. It wasn’t long before we had more than 40 people contact us to be added to the donation list.
  • When doctors began allowing Eisley to resume feeds, they told me she wasn’t a candidate for donor breast milk because of her age. However, some of the awesome staff on the PCICU floor went to bat for our girl and allowed her to have breast milk for two weeks. Near the end of the two-week period, I mentioned on our Facebook group that we were running out of donor breast milk. Within six hours I had eight people volunteer to bring more.
  • To maintain some sense of normalcy in the midst of all of the chaos, I decided it was essential to eat at least one meal a day with my husband and daughter. My sister spread the word, and we ultimately had more than 70 meals delivered to either the hospital or our home. Sitting down as a family to a warm meal—that we didn’t have to worry about cooking—was a huge blessing to us. Not to mention the fact that the meals were absolutely delicious! Many sent gift cards for restaurants, which was also a tremendous help since grocery shopping was the last thing we wanted to think about or had time to do.

    Dinner at Home
    Playing a game before a yummy meal.
  • In addition to worrying about Eisley, I missed my 5-year-old. A sweet friend invited anyone who was interested to send a care package to our big girl to let her know people were thinking of her, too, during this time. The outpouring of love symbolized by these packages brought me to tears—and made our 5-year-old deliriously happy!
  • Picture from a StudentOn one of Eisley’s sickest days, a friend from Facebook shared with me that 240 children at her school were praying for Eisley. They have continued to do so.
  • Shortly before Eisley passed away, a kind friend communicated a prayer request to his band. That night, 20,000 people joined together in prayer at a David Crowder concert to lift up our baby girl.
  • Shortly after Eisley’s passing, we began to receive anonymous pieces of art at our house. I finally discovered that someone had informed a “Free Art Movement” group of our loss. The group dropped off pieces of art that were reflections of Eisley, bringing us beauty during our time of grief.
  • The number of cards, notes, texts, messages on Facebook, and prayers sent on our behalf are more than I can quantify. Each message and note touched my heart deeply. What a gift to know that we were held so close by so many.
  • A kind friend set up an account that let people make monetary donations to help offset Eisley’s medical expenses. To this day, the generosity extended to us by so many people renders me speechless. We are humbled and grateful that you would give so freely to help in our time of need.

You extended light to us in so many ways during our darkest hours. You brought hope when it seemed hopeless. You held us at times when I didn’t think we could hold on any longer. You loved on us when we were weary, broken, and worn. You encouraged us to find ways to help others, just as this help was so graciously extended to us.

Grace and peace to you today.

“Go out into the world today and love the people you meet.
Let your presence light new light in the hearts of others.”
-Mother Teresa