Dear April,
You’re doing it. You are changing the world. It seems so crazy that a life lived so short can be so big and so impactful. Your 11 minutes have touched so many. You’re doing it, though. You are touching lives and your legacy will live on forever.
So many people know your name. So many people know your story. Those people are going to tell more people. Your story will have a ripple effect. It is already.
April, yesterday I had the honor to tell your story to a room full of genetic counselors. Yesterday I had the honor of speaking to the people that can take your story to the people that need to hear it.
These genetic counselors are the ones that help parents like your father and me. They walk us through the worst times of our lives. They are there and often speaking the words to tell us that our babies won’t live. They are there when we realize our worst fears have come true. And they are there to explain what our choices are.
Parents often sit in front of them in disbelief, terrified, and broken. And then these parents think about how they can best honor their baby. How they can spare their baby pain and suffering.
Parents search everywhere for answers. Never are there any answers to be found. There’s no guide. It’s not black and white. But they search anyways. They search for meaning. They search for stories. They search for connection and understanding.
Parents that are considering inducing their pregnancies early to spare their baby pain, walk the road in silence and alone.
April, you are changing that. You now get to be a voice for those parents. Your story gets to be heard. And while your story can’t take their heartache away, it can make their journey less isolating. Your story is going to speak to so many and help parents navigate their way through such a difficult time in their lives.
When I was first invited to come and tell your story, I was beyond honored. And then I was taken back a bit. You see, they’d asked me to speak at the National Society of Genetic Counselors conference, and they’d specifically asked me to speak in a session that was dedicated to discussion about palliative care.
I fully view the path that we chose as a form of palliative care. Palliative care, is comfort care- the idea of living well and comfortably.
Thinking about palliative care when it comes to babies that have a diagnosis like yours, it is often viewed upon as a mother carrying a pregnancy to term, and then providing only comfort measures when the baby is born. It means not taking any measures to keep the baby alive.
And often when people hear of stories like ours, where parents chose to induce the pregnancy early, it is given another term- termination.
We chose to induce the pregnancy early for a very simple reason- to spare you any pain. And not only that, I feared that if we carried to term to then do palliative care, that we’d be in reaction mode. Perhaps we’d allow more measures to be taken than we initially intended. And perhaps we would cause you unnecessary pain as a result.
April, we were 100% focused on you with our choice.
These incredible women that invited me to this conference honored that choice. They didn’t just view it as a termination. They viewed it as palliative care. I felt validated and heard and seen. And they gave me a platform to speak. They made it possible to share your story with the people that can really make a difference with it.
I hadn’t yet met the woman that was organizing this amazing session, but I knew of her. As I approached her and introduced myself, I wasn’t expecting to hear what I heard. She knew us too. She remembered. Our story had resonated with her.
Our genetic counselor had talked with her when we were there for your birth. She’d told her that we wanted to honor your life and give your life meaning. They’d talked about how to help us find a way to do that. When we were hitting roadblocks with ways we could donate your body to science and research, they were figuring it out.
She remembered our cause. She remembered our family’s story. And my heart just felt so amazing to hear that. How incredible.
And then I saw our genetic counselor. The memories came rushing back. In fact, the day I was traveling to give this speech, it felt like I was back in that room saying hello and goodbye to you. The flood of emotion was so unexpected. I cried almost my entire 4 hour flight to Salt Lake City. I hurt so badly.
And then I showed up. I saw the convention center. There were signs- tons of signs in front of the building with random words and sayings on them. The very first sign I read said “Loved and Lost.” It felt like such a perfect sign from you. I knew you were there with me.
And I walked. I walked and spent some time with you.
I practiced my speech over and over. I never felt like it was good enough. I didn’t feel like I could sum up your story in 15 minutes. I tried to fix it, shorten it to fit in my time slot, and make it more meaningful each time I practiced.
And when I introduced myself, I told this woman that my speech was too long and that I’d do my best to be brief. She didn’t even hesitate when she told me not to worry about the time it took.
And so I didn’t. I think I even talked longer than I’d practiced. I just let it flow. And it all came out perfectly.
The stress went away with the time limit removed. I felt the weight of it just lift immediately.
I sat and listened to the first two speakers. I cried a few tears here and there as they talked about the background of perinatal palliative care, and interdisciplinary teams and how the teams are beneficial for parents going through this.
When it was my turn to speak, I surprisingly didn’t feel nervous. It felt so right to be speaking of you. I felt strong and confident. I felt you as you gave me the strength to tell your story.
I talked for 30 minutes instead of 15. I used up all of the question and answer time. But as I looked around the room I saw such an engaged audience. They were nodding, and understanding. Their faces showed that they saw my pain. They were even taking pictures of slides to take back with them to their workplace.
And so I spoke. I showed them your pictures. I shared our journey. I let them enter that raw emotional space with me that I’ve shared so many times on this blog.
I told them of my worst fears, and let them really see the harsh reality of what it’s like to go through this as a parent. I told them as much as I could.
As I went through my slides, I saw how perfectly it all fit together. The presentations that were laid out for this day fit as though we’d all sat in a room and brainstormed together about topics.
The speaker before me spoke about teams, and here I was with slides about the amazing team we had for your birth. Each presentation built on the next in that way, and it all came together flawlessly.
As I listened to the remainder of the presentations I felt like I was in the right place. It felt good to be speaking of you. It felt good to be giving a presentation and not just in “stay at home mom mode.” I felt a sense of accomplishment and inclusion into the workplace again. I felt like I had value to bring to an adult setting- it’s been awhile since I’ve felt that!
The last presentation was about self-care. It was directed at genetic counselors taking care of themselves after all of the hard stories they immerse themselves in day after day. Of course, self-care translates to all, and the messages spoke to me as well.
Tiny little ceramic hearts were handed out during this presentation. These hearts have cuts in them- some so deep it looks as though the heart can’t be healed. But these hearts are whole. Each heart unique.
I ran my fingers across the heart and felt the deep grooves and the pain. And then we all cupped the hearts in in our hand, and felt the wholeness of them.
I brought a heart home for everyone in the family. I grabbed our favorite colors- teal for Mama, yellow for Daddy, purple for Caroline, and orange for William.
When I was talking to your Daddy later, he told me something I hadn’t even noticed. He said the first thing he noticed was how deep the cuts were in my teal heart, and Caroline’s purple heart. How they looked as though they couldn’t be repaired.
April, the scars are deep. The pain is hard and real and so bad at times. I let myself really feel it on this trip, and I could hardly function for a full 24 hours. I was a mess. Some days I mask that pain more than others, but the pain is always there and you are always missed so much.
The pain doesn’t go away. It doesn’t hurt less over time. We learn to manage the pain differently as time goes by. And in moments like these where I get to share your story, more healing takes place. My heart feels the cut more intensely in these moments, and then becomes stronger with each moment as well.
April, thank you for being my daughter and giving me a voice. Thank you for giving me the strength to share your story. I love you so much and I’ll continue to tell your story for as long as I live.
Kisses for a lifetime. I love you.
-Mama
