What Christine Needed [5 Lessons I Learned From My Terminally Ill Sister]

 TRUTH

Signed, a mom of four lego-loving cleaning-averse kids

People are so astonished when I tell them I have a 17-year-old sister that, I’ll admit it, I kind of like shocking them with that info. (Really I have so very few things I can use to shock people that if I have to rely on my mother’s atypical fecundity then so be it! It’s either that or haul out my extensive collection of creepy porcelain dolls. Don’t ask.) My mother was very young when she had me and I won’t say very old (just older?) when she had my sister K. She and I are 17.5 years apart. I watched her be born (which was seriously cool and not as weird as you’d think it would be) and was even the first to hold her as my dad was still hugging my mom. (That was the day I discovered newborns come out a very alien-esque purple with whiteish slime, not at all pink and cute like on the movies.)

But here’s the real shocker: I had a sister younger than K. My baby sister Christine was born today, fourteen years ago. She was born with Trisomy 18 (also known as Edward’s Syndrome and while it isn’t the same condition my daughter Faith died of, they are similar). Like K, I was there when Christine was born. And I was there when she died. She lived exactly one day.

One day isn’t very long to get to know a person, much less make a whole lifetime of memories – especially when the whole of it happens in a hospital. Yet some of my most beautiful memories – the ones I carry like iridescent bubbles on wet fingertips – are from that one day. And it was a day we weren’t even sure was going to happen. When she was born we already knew that she would have a lot of problems and when we heard her first tiny, weak cry, we got to see the magnitude of problems. It was a lot. A lot for a tiny body to handle. Even more for terrified grown-ups.

At first it was all about trying to figure out what Christine needed. She couldn’t breathe well enough to stay pink so she needed pure oxygen. She couldn’t suck so she needed a feeding tube. She couldn’t stay warm so she needed an incubator. She couldn’t maintain a steady heartbeat so she needed a monitor. She needed special lights, special food, special surgery. I remember following my father who was holding up my mother who was pushing Christine in the incubator while I trailed behind with the oxygen and a bunch of wires like the clown holding the parade float together. Bouncing around me was my three-year-old sister K, who was happily drawing rainbows on every available surface.

Eventually it was decided – and I cannot imagine the pain that went into this decision – that Christine’s needs were so immense and so critical that we would do our best to keep her comfortable but not try to prolong her life by any extreme means. Yes to food, air and warmth. No to surgery and resuscitation. How do you make such a distinction?

But once the decisions were done, we began to realize that what Christine needed was so miniscule compared to what she was giving us. As she stared each of us down with her bright blue eyes, we could see a wisdom and intensity that belied a newborn infant. I knew in that moment that she understood many things I did not. Unfortunately I was too old, too jaded, too distracted to speak her language then so I’ve spent the intervening years trying to learn everything she tried to tell me that day. Tonight, on the eve of the anniversary of her death, I’m finally trying to put it into words.

This is the picture my parents chose to use on her funeral program. I love everything about it.

1. It hurt but it wasn’t wrong. The thing about Christine’s death (and Faith’s) was that while it was excruciatingly painful – I watched my baby sister draw her last breath as my sobbing mother tried to keep her tiny body warm – it didn’t feel wrong. I hesitate to say that the death of a child wasn’t wrong – after all, that seems like the most wrong thing that could ever happen. Life and death are meant to be bookends of a life story, not the story itself! Yet this was a clean pain, like being cut with a perfectly sharp knife – while the wound went deep, there were no jagged edges left to impede the healing.

I’ve since thought a lot about that type of pain. There are plenty of painful experiences in my life that have left deep, infected scars. Take, for instance, when I was sexually assaulted. That’s a bruise that still hurts when I press it and I imagine it always will. So in a way I’m grateful for the painful experiences that just are what they are. No one did anything wrong. There was no evil to be fought, no vengeance to be sought, no one to blame. Sometimes things happen in life – terrible things – that hurt. But just because something hurts doesn’t mean it is wrong. Sometimes I think they happen to teach us a lesson. And sometimes I think that lesson is simply that we can survive pain.

1B. Just because it hurts doesn’t mean you did something wrong. The corollary to #1a is that just because something hurts doesn’t mean you are to blame or that you caused it. I see this second one a lot in other grieving mothers. (I get a lot of e-mails…) We look for any reason to blame ourselves, perhaps looking for the illusion of control. We feel like because they are our children, we should have omnipotent power over their lives and because they died, that must mean we failed them. Not so, my beloved sisters. Sometimes babies just die. Grieve because you love them and they are gone. Don’t punish yourself for something you ultimately have no control over. And never, ever mistake the burn of self-recrimination for the balm of true grief.

2. Don’t be afraid to sit with others in their pain. Pain is not cooties. You can’t contract someone else’s grief from hugging them, like you would get head lice. And yet we’re often so afraid to sit with others as they suffer. Maybe we’re afraid of saying the wrong thing. Maybe we’re afraid of saying nothing. Maybe we’re afraid because we know there is nothing we can do to save them from this. Maybe we’re afraid that their suffering will remind us of our own and we’ll all be swept under a tsunami of pain and tears. That won’t happen. And, at least from my experience, doing anything is better than nothing. Avoidance feels like forgetting and the one thing a suffering person needs to know is that they are not forgotten.

I remember after Faith’s death a friend came over and offered to wash and preserve the little dress she wore in the hospital. I politely declined as I personally liked the fact that it still bore the evidence of the baby who wore it, however briefly. It smelled like her. I needed that comfort. She left confused and sad. I knew I’d hurt her feelings. Yet several days later she returned to say that she understood and instead asked me to tell her about the tiny, pink, smocked dress. Why I chose it. How she looked wearing it. What it meant to me. That conversation was one of the best gifts anyone has ever given me. And it came because she was willing to be uncomfortable to be with me.

3. Breathing can be heroic. Walking away can be the bravest thing you ever do. We talk about the grand gestures but often it’s the ordinary that define our lives. Watching Christine struggle for breath was a lesson in itself. We thought she needed us to breathe for her. It turned out she could breathe on her own. She just needed us to hold her while she fought her own fight. And fight she did. You could see that she was trying so so hard to stay with us. Every breath she took was her saying I love you. I’m here with you. I’m here for you. 

Eventually even she couldn’t keep fighting and we could tell she was in considerable distress. So as my family surrounded her and my father said a prayer giving her permission to go when she need to go, her breath quietly stopped. She was gone, in the space between exhales. I remember my parents gently wrapping her up and rocking her – the same thing they did right before they put her in her casket for the last time. And then walked away.

I can’t say that I know how that feels either. When it came time to do the same for Faith I panicked in the casket room at the mortuary, sobbing that I could not leave my baby who had only known the warmth of my body in the cold, dark earth. Could. Not. Do. It. So we had her cremated. I do not judge any parent for the choice they make in such a situation – there is no wrong answer – but I do think my parents, walking away, were incredibly brave. In my mind, it was symbolic of their choice to continue to embrace life even having just seen the fragility and temporariness of it.

4. Don’t put off life for fear of death. [Or: How my family literally reenacted Four Weddings and a Funeral.] I know, by this point I should just write a country song and be done with it. It would certainly be shorter! But as cliche as it is, death is a part of life. Looking back I think how miserable it was of me to get married a mere three weeks after my sister’s funeral. And yet… everything was planned. Down payments had been made. Dresses fitted. Plane tickets purchased. Should I have postponed my wedding? I still don’t know the right answer to that one. All I know is that my post-partum, grieving mom stood in my wedding reception line that night for hours and smiled and shook people’s hands and posed for pictures. All I know is that my dad told me that my sister would be happy for me, that we could celebrate her life and my marriage in the same breath. It’s all in the circle of eternity.

5. Be there for the big moments; you’ll never regret it. Births. Deaths. Weddings. Everything from the first poop in the bathtub to the last dirty joke, all the Big Life Moments have one thing in common: they’re messy. But don’t let the mess make you miss the moment. Don’t be afraid to get blood on your hands. * You’ll never regret having been there for someone else.

It turns out that what Christine needed most was a family who loved her. And we do, still.

My four young children are amazingly adept at keeping me focused on the here and now (usually by finding new and novel ways to clog my toilets). But today as I sifted through my few memories of my youngest sister and celebrated her birthday, I realized that one day was enough to learn a lifetime of lessons. This feels like one last gift from a little sister who didn’t seem to be able to give anything but instead gave us everything. So thank you for letting me share a little bit of her with you today. (As long-winded as I am!) I appreciate your patience, love and forgiveness more than you know!

What about you – who are you remembering today that makes your heart full of bubble memories??

*For those of you wondering what happened to the man who got conked on the head on the 4th of July causing me to run around in a frantic tizzy while everyone else was helpful, in a miraculous turn of events his wife found me and sent me an update on him!! It turns out he did have a skull fracture and also a burst eardrum from the fall. But he is alive and recovering well, although he still has some pain, headaches and hearing loss that he’s dealing with. He and his family are all coming to terms with the trauma as well. You can read her whole update in the comments on my post but suffice it to say it made me cry ALL the happy tears!