Day 28 - My Elf
This outfit was a hand-me-down that my nephew and maybe niece wore first. Then Mira wore it. But Patrick wore it best. He was so stinking photogenic that even with a tube taped to his face and coming out of his nose, he looked like the cutest elf on earth. He would have made even Eeyore smile.
Day 23 - In Motion
Pictures are great, but sometimes only video will do. Here is Patrick making sweet cooing noises, grinning big behind his paci, and being the light of the PICU.
Day 20 - The Whole Package
This next picture is one of my favorites from when we brought him home. He has his floof of hair, a grin that shows behind the paci in him mouth, and his mischievous eye twinkle. He's wearing black watch plaid and snuggled in my arms. It's just perfection.
Photo Credit: Rachael Richard
Day 18 - Kermit
The summer of 2014, Patrick was in the hospital three-and-a-half months. During that time, hospital staff wrote me a prescription to leave the hospital and partake in self-care. One of the things I did was attend a conference in Chicago by an author I admire. I spent one evening at the nearby mall buying Halloween costumes for my kiddos. For Patrick, I chose Kermit. He already had a Kermit doll and a frog blanket, and Kermit sings and dances, so it just made sense.
When we brought him home on palliative care, it was clear he wasn't going to make it to Halloween, so he and Mira put on their costumes and we took pictures. This one became one of my favorites. Here is my beautiful Kermit, completely at peace, with his Kermit.
Day 17 - Brotherly Love
After we brought Patrick home on palliative care, our friend Rachael, a photographer, came and spent a day with us, photographing everything as we went about normal everyday things as well as special time with family, an early birthday party for Patrick, and a community vigil held on our lawn.
She took the most amazing pictures, and we have many of them up around the house. But one picture sort of became "the" picture and we gave copies to everyone, including doctors and nurses who had cared for him. It even became the cover of my book.
And we call it the picture that changed medicine because it changed how doctors saw palliative care and helped them see its value and benefits and collaborate with that department more often.
It also shows the closeness of Mira and Patrick and how much they loved each other. He seems to be saying, "Don't worry. I got you." It's such a special and poignant picture, it still catches my breath when I really stop to look at it. Just perfection.
Photo Credit: Rachael Richard
Day 16 - The Froggy Blanket
When I originally planned this series, it was going to showcase favorite moments or images from Patrick's life. And though I've been doing more traits and characteristics with multiple photos, there are some great singular images I want to share.
This first one is shortly after he was given this great froggy fleece blanket. As I mentioned before, with the exception of trips, I have slept under this blanket every night for the more than five years since he passed. It keeps me feeling connected to him and surrounded by his love.
This picture also has his signature grin and eye twinkle, all flirt and joy even when stuck in the hospital. In many ways, this is such a quintessential Patrick picture. I hope you love it as much as I do.
Day 15 - Isaiah’s Bean Dip
Talking about Patrick grabbing faces reminded me of this picture of him with my glasses. So cute! But the best part about this picture is the hand gesture.
First, in my family of origin, we would call this the bean dip picture. It's a long story and not nearly as funny in writing. It needs the hand gestures. Just know that based on a funny story, holding your hand like this and moving it up and down meant "bean dip."
Second, when Phil was serving a church in Texas, we were blessed to twice hear Rev. Dr. Susan Smith preach. The second time, she gave an amazing sermon including a personal story and referenced a passage in Isiah, talking about the need to stay strong. Making this hand gesture, she repeated the plain language message: If you can just hang on.
Flash forward roughly a decade, and I had that scripture verse engraved on the back of the iPad I bought to entertain myself/keep myself sane while Mira was in the hospital for her open-heart surgery and recovery. For me to have capture an image of Patrick making this hand gesture while in the hospital for over three months was a good reminder for me to hang in there. And, ever since he died, it's been helpful to push me out of my hole and keep moving forward because the payoff is coming. If I can just hang on.
Day 8 - Special People, Pt. 1
When I think about Patrick, I think about all of the people who helped us care for him. Their interactions not only made life possible, but brought so much love and joy into the world during his short life.
First up is my friend Duffy. She went with me to the hospital for Patrick's first heart cath. He loved spending time with her, and I remember her saying that they were going to spend lots of time together and get to know each other really well. She spent many days with me in the hospital and many nights at the Ronald McDonald house. This may be the only picture I have of them together, but it is one of my favorites. There is just so much love and joy.
31 Days of Patrick
Later this month, I will be engaging in a project that my counselor and I designed. This post is not only to explain what's coming and why, but to provide advance warning to anyone who might be triggered or otherwise upset by the project.
Get ready for 31 Days of Patrick!
Photo Credit: Rachael Richard
Each day after the anniversary of his death (Sept 27) until his birthday (Oct 29), I will post pictures of Patrick and talk about what I remember, how they make me feel, and why they are some of my favorite memories.
For blog readers/followers, I will be titling each post "Day x" and tagging it "31 Days of Patrick" so that you know generally what the contents are and can avoid opening/viewing/reading them if you so choose.
For those who are curious, the purpose of this project is to start detaching from the cyclical, chronological, calendar-driven grief that culminates every year in Patrick's death in September and rebirth in October. As such, the only rule for this project is that the pictures/memories cannot be in chronological order.
The ultimate goal is to both remember and see Patrick in my mind's eye as a complete person, rather than reexperience his growth, development, and ups and downs every year while living in the anxiety and tension caused by the knowledge that he is "going" to die. The unacknowledged fact in this thinking and experience is that he already died. He lived a complete, if short, life. I need to digest that and integrate all of my/his/our experiences into a complete package that can be loved, mourned, enjoyed, or grieved in its entirety on any given day.
So, that's what's coming up and why. If you have any suggestions for other activities that might help achieve this goal, feel free to share. You are also welcome to share any favorite memories of Patrick you have. Let us work together to recognize, acknowledge, and experience Patrick's continued existence in our lives--through his joy, his love, his smiles, and our memories.
In that vein, here is a quick video of my new car toy. Lil' Dude, named after Patrick, bounces and wiggles with the biggest smile, just like Patrick. Every time I see Lil' Dude, he makes me grin and helps me remember all the joy Patrick brought--and continues to bring--into my world. I hope he makes you smile, too.
Groundhog Year
Photo Credit: Abigail Lynn (@shmabbss)
There's a brilliant movie from the early 90s called Groundhog Day. In it, the main character relives Groundhog Day over and over. He learns and changes from day to day, but when he wakes up each morning, the day has reset. He only wakes up on February 3 when he gets the day right.
Today at counseling, I realized I am living Groundhog Year. My counselor asked how I was doing with the anniversary of Patrick's death coming up. I explained that I was generally doing well, but I knew the emotional kick in the pants was imminent because school was about to start.
I forget exactly how it came up, but I explained that even though this will be the 5th anniversary of his passing, for me, Patrick dies anew every year. She asked why that was, and I explained that I only have 11 months of pictures. Every year in late October, Patrick is born. He is fresh and new, and even though we knew he had CHD before he was born, we had no idea of what was coming.
As the months go by, I relive watching him grow and change and experience the emotional highs and lows. But come August, I am gearing up for what I know is coming. In early September, I watch the bittersweet memories as we bring him home from the hospital and live as a family of four as long as possible. Then I see him die. My ginger sunshine goes behind the clouds, never to return. I get a month of beautiful reminiscences and photos with family from the two services. And then, in late October, Patrick gets reborn again.
Because he died just before 11 months, there are no other memories to watch. It's the same ones, every year. No other ages or years to choose from. Just those. On the other hand, I am unwilling to hide or ignore the memories I do have. His smiles and joy and cute face still bring smiles to my face and joy to my heart. But there's a cost.
I finally looked at my counselor and said: it's like watching the movie Titanic over and over. The beginning is so full of joy. There is excitement for something new and different, wondering about the journey ahead. And there is beauty, elegance, joy, and music throughout the journey. But we know what's coming. The ending isn't going to change, but our emotions still ramp up as we careen toward the end, holding just a tiny piece of useless hope that another outcome is possible.
The stars twinkle. Life is good. And then the ship hits the iceberg. Our whole life shudders along with the ship. Something is about to happen. Then comes the anger. The fear. The sadness. The frustration. The lack of control. And yet, we can't tear our eyes away as the boat goes down.
Now comes the grief. The world is dark, cold, and quiet. Miraculously, I find a raft to cling to and float on. After a while, muted sounds of life touch my ears. I wake myself from my shock long enough to get rescued, but once I get wrapped in a blanket, I set myself apart and retreat back into myself. After what feels like forever, the rescue ship reaches land. Feeling both stunned and grateful, I walk down the gangway, and return to the rest of the world. I'm numb, but it's over. Time will heal me, I think to myself. I disappear to my bed, completely exhausted, hoping the next day will look brighter. And when I wake up, the sun is brightly shining. For a brief moment, I feel like today will be better. Until I step outside, and there, in front of me, sits the Titanic, getting ready for its maiden voyage.
Repeat. Repeat. Repeat.
Like the character Phil in Groundhog Day, through each of the repetitions, I learn more about myself and my feelings as well as those of the people around me. But until I do whatever it is I need to do and learn what I need to learn, the year starts over again.
When I talked to my Phil about it, he described it as having my own personal liturgical calendar. A cycle of death and rebirth that lasts exactly 12 months and repeats every year. I experience the summer warmth of his smile, the winter coldness of the hospital, the spring hope of being home and getting better, and the fall descent of palliative care mixed with beautiful leaves of memories of all four of us together. These are my yearly seasons of Patrick.
Obviously, it's too soon to have any solutions yet, but I think it's moving me in the right direction. Right now, I'm tossing around in my head how I might remember Patrick and enjoy my memories without the yearly Easter emotional sacrifice.
When Phil and I were brainstorming titles for the post, he recommended "Calendar Boy" as a nod to the song "Calendar Girl." It wasn't my title, but it's rattled around in my head. Maybe I need a Patrick calendar. It would list anniversaries of procedures, hospitalizations, and what not, but I would pick the images so I reinforce what I want to feel and remember. Maybe even a page-a-day, using my favorite photos. I need to think more about it, but something is percolating in my head.
Emotional Improvement
A few weeks ago, I was working my way through one of the 50 books I've read so far this year, and I found myself somewhat overly emotionally-invested in a book. My chest hurt, and I was feeling all the feelings. When Phil or Mira would ask me a question, I had extreme difficulty returning to the real world and clearing my head to give them an answer. I also found myself tearing up and crying at various points.
After it happened with two books in a row, I mentioned it to Phil and expressed some concern about how I wasn't sure this was a good thing. "I've never done this before," I lamented. "Sure you did," Phil said. "Don't you remember when you refused to read any more books in that series because the girl married the wrong man?" He was right. It wasn't until my sister let me in on a secret I had missed because I failed to read the whole book that I went back and finished the book, felt better, and continued the series. But it had been forever ago. Heck, I really only returned to reading for pleasure five months ago.
Photo Credit: freestocks
I was talking about it with my counselor a while later, and we agreed that it was actually a good sign. I had spent so much time making quick, life and death decisions, I had nothing left. The fact that I had started reading again, after being a television junkie, was the first sign I was improving because reading is a more active pursuit. The fact that I could get emotionally invested in characters was a good indicator that I had extra emotional energy to burn. My life no longer consumed every bit, so I had leftover I could invest in fictional characters. I was ultimately intrigued and amused that what I thought was a sign I was doing worse was actually an indicator was getting better.
Now, I still shy away from authors that I know don't do happy endings, and if a story is getting too emotional for me, I sometimes skip to the end to make sure I get a happy ending before I am willing to invest my time and energy further in the story. But, hey, progress is progress, and I'll take it!!