I don’t have any amazing tips on how to deal with losing your nephew. Or how to handle your own grief and your sister’s grief. And I don’t have any fabulous insight or how tos on dealing with the days, weeks, months, and years after. I can only tell you the truth about how I dealt with it, how I’m dealing with it, and how sometimes I feel like I have or am falling short.
When my sister told me she had to go to the doctor again because some test didn’t turn out right, I was like most people. I had a sliver of a nagging thought in the back of my brain that basically read as an “Oh no, I have a feeling that something really is wrong.” But that happens all the time doesn’t it? My main thought and what I said was, “Everything’s going to be all right. It can’t be anything serious. Our family’s been through enough. Can’t happen to us.” I was wrong. Bad news like this could happen to us, to my sister, and it did. Genetic defects; Trisomy 13, and a congenital diaphragmatic hernia.
I dealt with this news like most calm rational people would. Google. I looked for every single piece of information I could find. I searched for worse case scenarios and I hunted for the best cases. The bad news was I didn’t find much that dealt with my sister’s exact situation. It was really, really, rare. At the end of the day, it was going to take a miracle for my nephew to live. And I’m not talking about a small percent chance that he’d make it or we could cross our fingers and pray and everyone and their aunt could send all the good juju our way and maybe he’d make it kind of a deal. It was going to have to be a literal miracle. Aside from the information my sister had been given, I’d also heard from a colleague of someone working with her pregnancy. They said he wasn’t going to make it. There were no chances. He couldn’t. As soon as he was born, he wouldn’t be able to breathe and there was nothing you could repair or create to make that happen. It was a devastating, cold, hard punch in the face.
I tried to be there for my sister, I really did. And I’m sure she’d tell you I was a great and supportive big sister. She even gave me a locket after everything happened that said so. But I felt like I didn’t deserve it. I’ll always feel like I failed a little bit in those days. Like, I asked my sister if she was sure she wanted to go through with the pregnancy. Could she handle it and what if there was that miracle, could she handle all that would entail? How would it affect my niece and nephew who already needed so much from her? I remember sending out invitations to my sister’s baby shower. I put a little note at the end, reminding my sister’s friends of the most likely outcome and please do not gift her with anything that’ll make things harder in the end. In other words, DO NOT give my sister any baby clothes or cutesy toys because it’ll make her cry and after everything’s over, no one wants a pile of presents to return, unopened, unused. No one wants to have to explain to the lady at Baby Gap that “it just didn’t work out this time.”
When my sister went into labor, I went to their house first to watch the kids, and as soon as my mother-in-law got there, I bolted for the hospital. I’d been there for my niece and nephew’s births and always had a great laugh with them later telling them “I practically caught you coming out,” and then gradually stretching the story to “I totally caught you when you flew out of your Mom!” But this time I wasn’t going to have a fun story to laugh with my nephew about. As much as I’d wanted to have my usual mindset of “everything will work out,” my heart said it wouldn’t. And I hated that. For my sister, for my brother in law, for the kids, and for me. And I felt guilty for being as prepared as I was for the worst. I’ll be honest; I’m not good with death. And I just wanted to be able to handle it with the grace and strength my sister would need. But who is good at dealing with death anyway?
Orion was born on June 30, 2008. My sister held him briefly and he was snatched away and hooked up to ALL THE WIRES and EVERYTHING was on and lit up and EVERYONE WAS RUNNING AROUND. AND IT WAS INSANE. AND MY NEPHEW WAS THERE AND ALIVE, BUT HE WAS DYING.
I wanted to hold him, to help him, for there to be that crazy miracle I knew my sister had been hoping and praying for behind closed doors and her brave face. But there wasn’t. The machines blared and pounded at full capacity and there was nothing to be done. You could almost reach out and grab the thick wave of despair that coated the air. And I could almost hear my nephew whispering with a tiny smile and sparkle in his eyes, “Hey guys, I’m here, but I’m slipping, my mom and dad got to hold me and see me, but I’ve got to go, please let me go.” And they didn’t want to. But they did. And it wasn’t fair. And it was worse than anything EVER. I hated it. Did I mention that it wasn’t fair? It left me sad and lost and angry for split seconds but it made me go numb for most of the other time. I felt like I had to. I had to be tough and make calls and give hugs. I had to put on a forced, fake, frowny smile through scattered tears. Choke back sobs as I told my boss, my friends, and family.
And then I had to be in and out of my sister’s recovery room. If you’ve been in this situation, you know what I’m talking about. If you haven’t, I hope you never know. Ya know how exciting it is when you rush to the hospital and down the baby section hall to get to the room to see a mom and her new baby? That cute little baby that pulls your heart in all kinds of crazy directions and you try not to cry because they’re just so cute and tiny and everyone’s so stinkin’ happy? There’s none of that when your nephew passes away on his birthday. I had a sister, ragged and run down, with a swollen, tear stained face and an occasional painted on smile. Her heart had been broken a billion times harder than any of those jerks from high school ever did. And it was smashed and shattered into a million sharp and jagged pieces that were flying around the room as she teetered the edge of madness.
And then there was my nephew. My sweet, innocent, gorgeous new little nephew. He was still there. His body. The shell of his soul–left behind so my sister and her husband could say goodbye. I was scared my sister had lost it. I didn’t know a thing about dealing with this kind of grief. She even asked me to hold him a few times. She almost begged me to. Sometimes I did and sometimes I found a way to leave the room so I wouldn’t lose it. I asked the nurse if it was normal for people to keep the baby in their room after they’d passed. She said, yes and some moms would even bring the baby home until they were ready to let it go. I was relieved, but confused. It was scary and uncomfortable and HOW THE HECK DO YOU DEAL WHEN YOUR SISTER’S BABY DIES?
And then something clicked as I remembered that I’m a mom too. Oh yeah, I have a son and if something ever happened to him—.” And that’s about as far as I thought about that. This whole time I’d been looking at it the wrong way. I’d been focused on the right thing to do, to feel, to act, and the very best way for my sister to go through everything without having to FEEL ANY PAIN. Now, I got it. It just wasn’t possible. Or healthy. And I was really naïve and selfish to think it was.
When someone loses a child during pregnancy, or right after birth, or months or years after, they are most definitely dealing with something, unless you’ve been through it too, that you will never know the depths of. Because you just can’t. As a parent, I can only start to imagine what that kind of loss would be like before it gets too uncomfortable. I imagine it must be close to that feeling times infinity.
I’ll never forget being able to be there for my nephew’s birth. And how he left the same day. Just getting to spend those brief, fleeting moments–that was the miracle. I’ll always remember. And that leads me to the most important thing I’ve learned about what to do when someone loses a child. Don’t ever forget. My sister’s never going to forget and I know she doesn’t want anyone else to either. Just because her kids are running around laughing and healthy, just because she had another baby afterwards, and just because you see her smiling. Just because you see her dancing, or working, or making jokes, doesn’t mean that her heart was put back together again. As Orion’s birthdays come and go, with balloons and cake at his resting place, there’s always the dreams, the nightmares, the what ifs, the sight of a mom and a baby bump, or the sound of baby cries piercing the air, or a child playing that would be his age, there’ll always be those reminders. Not that she needs them. But, I think I need reminders sometimes. I’d like to make sure more often that she knows that I didn’t forget.
Orion was here and he was real. He changed me, and the way I see people and their losses. And the way I see my sister. She was brave and strong. She still is. But her heart has a hole in it and I know she’ll never breathe the same again.
And you know what else? I didn’t get to know Orion, but I could never forget him. I sure miss that little guy. I really do.
Ami with an I 