I haven’t written in several days. Because I simply don’t want to tell you. Because if I write it, it makes it real. Painfully real. And I have been struggling to accept what happened last Thursday.
Charlotte died in the arms of her parents. Just days after sweet baby Sterling.
Have you caught your breath yet? Because, when I think of it, I feel I can hardly breathe. So much has happened in the last several days that I haven’t been able to keep up. Or post. Or think.
Sterling’s visitation was last Tuesday. Mom and Dad planned to travel to my nephew’s graduation from Notre Dame. As soon as Mom heard about Sterling’s arrangements, she changed her flight in order to join Greta and me at the Visitation. The three of us walked in to the funeral home together. The room was filled with family and loved ones, most wearing colorful “Sterling Strong” swag. There were photo boards around the room capturing moments from her 8 months of life. Bunches of bright balloons lining the walls. Wonderful videos of Sterling’s life played in the background. Her Beads of Courage were strung throughout the room. Each bead represents a procedure, test, or ordeal in the PCICU or NICU. A visual, tangible memorial of a Sterling’s complicated medical journey.
While we waited in line to pay our respects, my eyes were drawn again and again to the tiny white casket surrounded by beautiful orange and pink flowers. I wanted to run to it, wrap my arms around it, and sob. To remember this precious baby that I only saw from a hospital room door. Or in pictures. That I only knew from the vivid descriptions of her parents. I wanted to scream out the love that I feel for Sterling and her parents. Eventually, it was our turn and Mom, Greta, and I walked to Maddie and Kingsley.
As I walked towards Kingsley, the tears flowed again. It took a moment for him to recognize me without a mask. To place all of us outside of the hospital and in this new environment. Then, he embraced me, reaching his arms around my shoulders, pulling me close. We held each other for a long time. And there was the sound of sadness.
Do you know that sound? When you hold someone close, and you hear the tears forming? Time suspends as you feel the deep breaths. And the sighs. You hear the watering in the eyes and the release of tears. The slow gulps of grief and the rhythmic movement of sorrow spreading throughout the body. We shared that moment of sadness, remembering a beautiful, but too short life.
We visited for a brief time, cognizant of the long line of well wishers behind us. As we left, I promised Maddie that I would never forget her. Or Sterling. That I planned to keep in touch. I embraced both of them one last time. Kingsley looked at us and commented, “I never knew there could be this much love in the world.” What a privilege to a be a part of that love. To share this time in life with these new, but now beloved friends. I can’t imagine their loss.
Before I left the parking lot, I texted Maggie and told her that I would be in the car, fighting traffic and available to talk. We had hoped to connect at the Visitation but we missed each other. A short while later, I received a text that concerned me.
“Sorry we missed you at the funeral home. We needed to get back. I will call you tomorrow. We are sleeping in Charlotte’s room tonight.“
That night, Becky was terribly restless. Normally a solid sleeper, she was fussy and inconsolable. She simply would not be calm unless I held her. I slept with her in my arms but it was a fitful night’s rest. In the morning, Sam asked me what was going on with her. He wondered if we had forgotten one of her feeds. Or some of her medication. I told him that I feared something had happened with Charlotte. I can’t explain it. But, the only times Becky has been fussy at night, I found out the next day, that Charlotte had a bad night. Unfortunately, my instincts were correct.
“Charlotte told us last night she couldn’t fight any longer. God is calling her home. Her lungs have gotten too sick over the last week and there is nothing they can do for her except keep her comfortable. Give us time to hold, love, and say goodbye over the next day.”
I was stunned. I knew that Charlotte was struggling. I knew that Maggie and Tim had had several difficult conversations with the PCICU team. Charlotte was fighting yet another lung infection. And the team was running out of options. But surely they would think of something. Surely there were more medicines. More therapies.
But it was not to be. Maggie and Tim had made the brave decision to place a DNR order for their child. Their only child. They realized that the fight was over and now was the time to turn towards other things. Towards introducing Charlotte to family. Family who had waited long, long months to see her. And to hold her.
Tim’s sister came and took pictures of this family of three. Maggie shared these pictures with me. And allowed me to share them with all of you.
Precious pictures during Charlotte’s last days and hours. Some of their final moments with their daughter before she passed into eternal life.
Charlotte’s end was peaceful. Full of grace. Full of love. Full of family.
“She truly went so peacefully. She did not suffer one moment and we held her so tight in our arms until we were ready to leave. I’ve wanted to hold her like that her whole life and it made me so happy.”
I simply have no words. For the beauty. For the bravery. For the love.
What an incredible honor to know Charlotte’s story. She never left the hospital, never slept a night in her home. Maggie and Tim stayed by her side, constantly since her birth on November 30. Charlotte was the greatest blessing in their life. And she is now their greatest loss. But the faith that sustained them during her life now sustains them in her death. They have planned a Visitation as well as a funeral Mass later this week. Amazingly, Mom will be able to attend the Visitation. She has changed her flight home in order to go with me.
It’s hard to write without crying. Without feeling my own pain, my own confusion at this turn of events. My sadness seems so trivial, so trite. Every time I go to the hospital, I look forward to seeing Maggie. To reconnecting with another mom who understands this strange world of congenital heart disease. On the other side of surgeries and hospitalizations, it is always a reminder to be grateful for each day. For each moment at home. Even in the midst of the mundane and routine. For my child is home. But Maggie will no longer be waiting for me on a bench in the children’s garden. Waiting for her cuddle with Becky. And I feel that loss.
I also mourn the loss of an imagined future. A future I would think of during our time in the PCICU. For a time, Becky’s room was in the middle, Charlotte’s to the left, Sterling’s to the right. But I imagined these three little girls together outside the hospital. Having play dates at a park or by the lake. Surely there would be birthday parties with balloons and sparklers. And heart-shaped cakes. But those were my dreams. And not reality.
I’ve struggled with a range of emotions this week. And I’ve had many questions churning through my mind:
Why did Becky get such a good outcome?
Were our prayers any different than their prayers?
Why would God call both of these babies home?
Before Becky was born, I tried to imagine life with her, tried to comprehend her needs and what it would mean for our family. I never once considered the people I would meet along the way. Or thought of possibly being caught up in the journey of other families. But here I am, mourning the loss of two other babies, who had done nothing wrong, nothing to deserve the pain and suffering befalling their tiny, tiny bodies. And it’s both heartbreaking and awe-inspiring to watch my friends step into the most profound pain a parent can know.
In the days since Charlotte’s death, Maggie and I have texted some. Once again, she allows me a window into her life as she moves forward into an unknown future. She shared with me that she often thinks birds symbolize the presence of a beloved loved one.
“I feel her every day. I’ve always said seeing cardinals represents loved ones watching over you and every day since Charlotte passed we have seen a cardinal on a walk or in the backyard.
I responded to this text by telling her about the bush by our front door. Every spring, cardinals return and build a nest there. We are used to seeing these birds flitting and floating about the yard. So I have named two of them Sterling and Charlotte.
Which seems appropriate and reminds me of these two heart warriors. Who surely are playing together in heaven. And probably wearing matching hairbows.
*Pictures and texts used with permission