Dear Nora,
Broken was a word I heard and read a lot on this journey and now, without you, it’s how I feel. In so many places I’d seen HLHS babies referred to as being born broken. When we got the genetic testing results that showed you were entirely perfect that’s what they said, “she’s perfect except for her broken heart.” I remember thinking, “not my baby, she’s not broken. She’s still perfect, her heart just isn’t right. It’s not right, but it’s not broken.” I remember thinking that each of the three separate times we received genetic testing results. How can something break before its ever been allowed to grow? How can someone be broken when they haven’t hardly lived?
As time went on I began to understand that people just didn’t have other words to use. It felt more gentle and less clinical for people to refer to your heart in this way. It didn’t function the same way as a heart healthy baby’s would and so it was broken. Even though it still didn’t feel quite right to me, I know that I used this phrase a couple of times myself. It was easier for people to hear and easier for them to understand.
Missing, now that seemed more fitting to me. You were missing part of your heart. Only the physical heart though, not the metaphorical representation of where our love is stored up. I’m sure that, like the rest of you, was absolutely perfect. I could feel it. I felt it in your wiggles and hiccups and the way you almost hugged me back from inside my womb (something I almost feel guilty for getting to experience). I could see it in your sisters who had some sort of bond with you I don’t think I can ever explain. Rose could barely talk, but when asked where baby Nora was would point on my belly. Not that that in and of itself is earth shattering, but she almost never pointed to the same place twice and nearly always you’d respond back to her, right where she’d pushed or poked you. As if she knew exactly where you were resting and you were saying hello to her. Ellie hugged and kissed you a lot. She even “read” you a story or two and talked to you often. She had big dreams for your lives together and tried many times to fix your big bad heart boo boo with a kiss on a freckle I have on my belly. She struggled understanding why you wouldn’t get big and wear her old clothes or ride her bike with her. She loved you fiercely. I think you almost wiggled more for her than anyone else. You liked showing her you were there; when she would place her hand on you to feel your hiccups (something she last did the day before you were born) it was almost as if it were a way you were showing her you loved her. You never stopped your hiccups before she let go and she had the patience to sit there and feel them for a very long time. Nearly every time she’d snuggle up in a hug around you in my belly and just feel you hiccuping away and nearly every time you’d stop just after she let go. I could feel that you loved them. I know that you loved your Daddy too as you’d wiggle when you heard him or when I’d think about him or when he’d talk to you. You also liked to play a bit of hide and seek with him which made me think you had a fun sense of humor.
The long and short of it is, I don’t think you were ever broken and I think you loved more than we can ever understand. I know for a fact that you are still loved more than words can express. I remember asking your Daddy, through tears as you lay on my chest, how it is even possible to love someone so much when you never really got to meet them? I don’t think I can ever answer that question, but I know that as horrible as the brokenness I feel is, every ounce of it is worth the love I have for you. I imagine none of this will ever go away, but I am sure that with time the sadness and despair will fade and lighten. The love will remain strong forever.
I think that love is really what people were talking about when they told me time and time again how strong, courageous and brave I was. I heard it over and over. Whether it was the “God never gives us more than we can handle, He must know how strong you are.” sentiment or something more simple, I was constantly being told how strong I was and how much I could take. That’s not to say that it ever upset me that someone said anything like that to me. I was simply in awe of how many people thought that of me. Maybe it’s just something you say to someone when they’re faced with a tragic heartbreak. Maybe people thought it would make me feel better. I’m not really sure. I do know that I felt anything but brave, strong and courageous. I felt afraid and weak. Not ready to face what I knew was coming our way. Even less ready to face what actually happened. Less prepared than that to face life without you moving forward. Even so, somehow, everyone seemed to see some sort of strength and bravery in me that I didn’t and still don’t see in myself. I think what they really see is that love. That love that persuaded us to pursue comfort care for you. The love that pushed us to soak up each moment we had with you even though each one was extremely bittersweet. The love that makes us miss you fiercely. The love that will remain as the sadness lightens.
Love, Mommy
Originally written to Nora on March 11, 2021
Dear Nora 