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 22 - Fighter
This picture is of Patrick at roughly an hour or so old. He's on oxygen, intubated, and hooked up to all kinds of wires. The hospital I was at was getting ready to send him by ambulance to the NICU at the children's hospital around the corner. Phil went with Patrick while my friend stayed with me. This was when I began to learn just how strong both of us were. Patrick looked so healthy for the most part that these early pictures are always a shocking reminder of just how fragile he was. We both fought the good fight. He's still one of my greatest inspirations.
Day 21 - Grown Up
I love this picture because Patrick looks so grown up. I see it, and I think he was much older than he was. Sometimes it helps me imagine what he might have looked like if he had lived a little longer. Plus his face! So cute! And wearing plaid. Be still my heart.
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 19 - Happy
Patrick knew how to rock a smile. And his smiles were contagious. Whether he lit up when he saw you, or was just having too much fun to contain his delight, he brightened the room just by being in it. Nurses came to see him before starting their shifts to get a smile before going off to help their assigned patients. He brought so much joy and delight to the hospital, a place that never has enough of either.
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 14 - Snuggles & Faces
Patrick was a snuggle bug who loved to be held. When he wasn't bouncing up a storm, grinning his head off, or flirting relentlessly, he was content to snuggle up next to someone and just chill quietly (or to music). But woe be unto you if you stopped paying attention. You had to look out because he loved to grab noses and glasses on people's faces!
Day 13 - Special People, Pt. 6
I met Mary when I was pregnant with Patrick. She and I had kiddos who were only 4 months apart and they became fast friends. Mary made several trips to the hospital to visit Patrick, and she watched him overnight several days a week for us when he was home. They had a very special relationship. I am forever grateful for all she did for him and for us.
Day 12 - Special People, Pt. 5
As Mira's Godmother, Kate was always a big part of our goings on, but with Patrick, she went above and beyond. She was at his birth, with us in the hospital for both of his open-heart surgeries, rode with me to Detroit once or twice in the middle of the night, visited as often as she could when home or away, helped reassure us about many a question or issue, stayed with him overnight at least once after he came home on palliative care, knitted him clothes, embroidered him a Stormagedden bib, made us a quilt from his clothes, and sat vigil with us at the end. We were truly beneficiaries of her abundant giving. She loved her Pac-Man, and he loved his Katy.
Day 11 - Special People, Pt. 4
Next up is Mandi. (If you're keeping track, you'll discover all but two of Patrick's caregivers have M names. Because Ms are awesome. Anyway). Mandi is a nurse and she generously gave of her time to watch Patrick multiple days every week. When he was in the hospital, she cane out and watched him to give me respite time, even staying in Detroit overnight many weekends.
She loved Patrick like he was her own, talked with the nurses, advocated for him, and shared all the information with me. She held dance parties with him, snuggled him, played with him, and comforted him. When her son was born, I gave her one of Patrick's outfits for him to wear because they were brothers of a kind. Mandi was generous, kind, giving, loving, and amazing. Both Patrick and we were lucky to have her in our lives. You could see by his grins and eye twinkles that he loved her so much. He was a very lucky boy.
Day 10 - Special People, Pt. 3
Even when Patrick was home, he needed caregivers because he couldn't go to regular daycare. We were lucky to have several different people who came to our house to watch him so I could go to work. One of them was Mackenzie. From a family of people dedicating their lives to helping others by providing emergency services--firefighters, police officers, EMTs, etc.--I knew she was comfortable handling Patrick's special needs and that if she needed help, she knew where to get it. I am so grateful for all the love and snuggles she provided to Patrick and all the time she helped give me.
Day 9 - Special People, Pt. 2
Our friend Maria, better known in our family as M, and her husband, T, were a huge part of our lives for many years. We spent every Sunday and most holidays together for a long time. When it came time to pick godparents for Patrick, they were our first choice.
When he was home, M would watch him and hold him during church as well. One time, the two of us carried him and his feeding pump while we took communion through intinction.
When Patrick was in the hospital, M came out and sang to him, brought books to read to him (that he could also chew. Bonus!), and took me out for food. Their time together made me smile, and I know Patrick loved her very much.
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.
Day 7 - Curious
Babies are always curious, trying to figure out the world, and Patrick was no different. But it can be hard to entertain a baby in the hospital. We would use not only toys, but whatever we could find that was available. The coolest thing, though, was that Patrick stayed curious to the very end, finally learning learning to eat by mouth (not NG- or G-tube) in his last week of life. The look on his face when he first tasted chocolate cake was priceless. It reminds me that we can always stay curious, no matter what.
Day 6 - Music
Patrick loved music. His entire life had a musical soundtrack of one kind or another. He loved toys that made music. He loved guitars--real or plastic. Mira would sing to him to make him smile. We would sing him to sleep. We would have dance parties in his hospital room to Happy and Everything Is Awesome. I love hearing songs that remind me of him.
Day 5 - The Consummate Flirt
Patrick was an unrepentant flirt. It was hardwired into his DNA. He had a twinkle in his eye and a smile that reached his toes. When people passed by his room, he would smile and coo at them. He could get a whole group of people gathered outside his door to watch him. Some days I would get to his room and find it empty. Looking around for his nurse, I would find Patrick sitting at the nurses' station keeping them all entertained. Even the most hardened, grumpy doctors could be reduced to goo during rounds, getting distracted by his sly smile and responding by smiling and wiggling their fingers at him.
Day 4 - Books
Obviously, Patrick was too young to read. But he loved to chew books, look at the pictures, and sit in people's laps and be read to. Coming from a long line of readers and marrying into a family of readers, I loved that he was following in our footsteps.