Heather, tell me the nights get easier. Every single night is hard. I yearn for him the most at this time and it’s taking over me.
That’s the message I sent to a new friend, Heather, in the early morning hours just a few nights ago. Her situation is as close to mine as I’ve found; she and her husband uprooted from Atlanta to Philadelphia when her son’s CDH was discovered so that his care could be received at CHOP. Her son did not survive. And three years later, almost to the day, she gave birth to a healthy little boy. I had reached out to her when we were trying to decide on if we should pack up and head to CHOP, back when we thought there was a chance of his survival. She said absolutely.
I wanted her to tell me it gets easier. I wanted to hear that one day, it won’t hurt so much – even though I know it isn’t true.
Nighttime is the worst part of mourning. Sometimes it gets so strong that I can’t breathe. Thoughts of Benjamin are running through my mind all the time, but when I try to shut down and go to sleep, he’s the one thing I can’t turn off. Turning off thoughts of him means moving on, and I don’t want to do that yet. I don’t even think I should. I don’t even know if I can.
I think about how different things would be if he had made it. I think about what he’d look like, what he’d be doing, what he’d sound like. Sometimes I can almost hear him, even though he never made a noise. I can almost feel his skin again. So soft. So perfect.
You were so beautiful, baby.
Time for some brutal honesty: It took me a while to learn to love this baby as her own person, and not as someone who is here because Benjamin isn’t. I can’t begin to tell you how awful it feels to say that, let alone feel it. For the first few weeks, it almost felt as if there was an intruder inhabiting what was so recently Ben’s home. The truth is that if everything hadn’t gone exactly as it had, she wouldn’t exist. In a perfect world, I’d have them both. I think about that at night, too – having them both.
She does exist. She is a miracle in so many ways. Another thing I do at night is allow myself to think about her as an “outside” baby, then as a toddler, a child, a teenager, an adult. But even that brings me back to Ben. I did that with him. I fell in love with who he could have been, at every age. I even loved the thought of him going against every single one of those dreams I had for him because if he’d had his own dreams and went after them, that would have meant that we’d done something right as parents. And it was all wiped away that night when we got the amniocentesis results. There was nothing but darkness outside of that room; darkness was all there was at the time, all there had ever been, and all there would ever be. The rest of the world could have crumbled to the ground and my mood would not have changed.
That moment of devastation has caused me to hesitate when it comes to throwing myself into the joy of this pregnancy. I have to consciously tell myself that it’s okay to dream again. That’s what most people do at this point in a pregnancy and we are now on a normal pregnancy track. It’s okay, I tell my heart. There’s no logical reason to have fear. We can talk to her, we can make plans for her, we can say “when” and put away the “if.”
I’m still struggling with that last thing.
The way I see it, there are three options as far as how the rest of our “family-building” experience is going to go: 1) Adoption, 2) Pre-implantation Genetic Testing (like IVF, but with a twist – they check the chromosomes prior to implantation), 3) Paisley will be an only child. So there is a chance I will never be pregnant again. I’m trying to take it all in and enjoy it. Once I’m able to shake the “if,” it will be much better.
And most importantly, to dream about Paisley, to love her as her own person, to give her everything I gave to Ben and everything I wanted to give him is not to be confused with betraying Ben’s memory, which is one of my greatest fears. In fact, I’d like to believe that by giving Paisley all of those things, it only adds to his memory.
I would have been overjoyed with either gender as long as the baby was healthy, but I am glad she is a girl. I have a hard enough time remembering to look at dresses and not shirts with baseballs on them. We went to Target to start our registry/shopping list (as I have been informed that a baby shower is happening whether I like it or not, but if I go along with it I get to help with the guest list) and I kept seeing things that I’d looked everywhere for for Ben. Everywhere. I think, “Finally! I found it!” But then…it’s not quite right for this baby because she is a girl. She is different. And because she is different, the lines don’t have to cross any more than they should.
Heather responded the next morning:
It does get easier. There is something to that saying that time heals. I personally think part of the battle is accepting that you will always have that pain. That pain will push you. It will push you to be better. A better mom, a better friend, a better spouse. Everything. You can thank Ben for that. Your daughter’s arrival will help too. You will not take one moment fore granted. Really, you will be eternally grateful to Ben for teaching you something that no one else could communicate. Life is beautiful. No matter how long or unfortunately how short. It is full of pain and celebration. All of our lives are really full of both. You and I can see it more clearly because our pain and joy have both been magnified. We have stared down our greatest fear. We have survived. Keep your chin up Eva. Finally, when all else fails – one foot in front of the other. I cannot tell you how many days that has been the chant in my head. If I ever write a book – that will be the title.
The pain will always be there. I will always wonder what it would have been like if they were both here, if Paisley had an older brother that she could see and talk to. But he isn’t here, and that’s something that no matter how many times I accept it, at some point I’ll have to accept it again. Paisley will get the kind of parents who can stare down their worst nightmare, walk right through it, and come out stronger. It doesn’t make it easier, but that way of thinking makes it easier to accept.
(Heather’s blog about her son, William, can be found here.)
Thought I’d share Benjamin’s Memorial Tree. It’s just about finished now. We’re just waiting on a few fingerprints, including Paisley’s. Then it will go up in her room.