Don't you wish you could just stand on the roof somewhere and tell the whole world what you're really thinking and feeling? Dealing with RPL, I feel like I'm supposed to be quiet about it, like it's something to be ashamed of. But I am not one to stay quiet. Face.book makes things so difficult. There's all these people on there who have no idea what we're going through, who know nothing of our pain and anguish. Those who do are pretty good about saying what they need to support us without giving away our "secret". In a moment of utter frustration, I wrote this letter. You should know that I have had every intention of actually posting it on my Face.book profile. Howver this journey isn't a solo one and I had to take into consideration the feelings of my dear husband. In the end, while he really liked what I had written, R wasn't comfortable with me posting it. I can handle that. But I did warn him that I'd post it here. Afterall, it's not like I'm revealing new secrets here. Here's my letter:
To All Our Face.book Friends: A Letter From a Secret Society Member
I feel like I belong to a secret society, or worse yet, a cult. We keep our day-to-day business secret from most people. Why? Because it's not a topic for polite conversation? Because people feel awkward and don't know what to say? I don't think those reasons are valid enough for us to have to stay silent.
Face.book makes it even worse. I feel like a live a double life. I post a status but it's not really what I'm doing or feeling. If I make a random odd comment and someone calls me on it, do I tell them what's really going on? Most of the time. But I'll send them a message instead of writing on their wall in return. So no one else knows what I said, you see. I don't do this because I don't want others to know, but because it's what so many people in our position do, what's expected. It's what we're made to think is normal. It's so very wrong.
Infertility. A strange word that often garners looks of pity and spurs on comments and advice from people who mean well but really have no idea what they're talking about. For us it's worse. We don't have any problems getting pregnant but rather, our issue lies in carrying our babies to term.
We have lost two babies. BABIES, not just pregnancies. Yes, they were with us only for a short while, but they were our children. The first came and went so quickly we didn't even know we were pregnant until it was over. The second, we knew all along and bided our time waiting for that magically moment when you get a heart beat and your chance of miscarriage goes down to 5%. We started to get excited. We never heard the heartbeat. I carried him for over 10 weeks (we found out later from testing that it was a boy) but he had died at 6wks 4 days. We've grieved and grieved and tried to figure out how to make sense of all of this. Test results may indicate a more serious problem that could impact our ability to have healthy children. Or it could be a fluke. We don't know yet.
So how do all of you fit into all of this? Well, you're on the outside looking in trying figure out what to say. What's the ettiquette here? Do you say anything at all? So from all of us who have experienced loss, here are some guidelines:
1. The appropriate response to hearing about someone's loss is ALWAYS "I'm sorry". No more, no less. We want you to acknowledge the brief lives of our babies. They were real and have had an impact on our life. Please respect that.
2. We don't need your pity. Trust me when I say that we've got all the pity we need and it comes from ourselves in our darker sader moments. Please don't add to it.
3. Kindly keep advice to yourself unless we ask for it. We know you mean well and don't mean to be hurtful, but unless you've been through it, you can't really know how we feel or what the best next steps for us. That's for us to decide. In my particular case, it also involves the opinions of medical professionals, who believe it or not, probably know better than you do.
4. It's okay to admit that you don't know what to say. We're okay with that. Words aren't always necessary. But maybe a smile and a hug the next time you see us, would lift our spirits. Sometimes all we need is someone to listen or give us a shoulder to lean and /or cry on.
5. Lastly, a general note about infertility (and yes, recurrent pregnancy loss is a form of infertility). Think about all the couples you know in your life. How many of them do you think want children? Have you gone and asked them recently when they're planning to have kids? Do you realize how hurtful it can be? You see, 1 in 6 couples have some form of infertility. Some require meds to make their bodies work properly. Some will go through very expensive treatments just for the off chance that there will be one magic moment when things actually go their way. Others may be told they can never have kids. Still others will endure loss after loss waiting for the numbers game to roll the dice in their favour.
I bet you know more people in your lives dealing with infertility than you ever imagined. Our secret club tends to hold our cards close to our chests, hoping no one will see the sadness and the desperation. But here's another secret. We also become so very grateful for the things we have in our lives. Everything becomes so much more precious and amazing. It's a perspective that only resilience through difficult times can bring.
I have always been a very open person. If you ask, I'll probably answer. It can be a fault of mine, or simply a part of my charm. Depends on the day. Ryan on the other hand deals with things differently and may or may not want to talk about it (and yes he knows I'm writing ths). At the end of the day, this is a COUPLE'S issue not an indiviual issue. So we'll carry on together hoping for our chance at the amazing journey called parenthood. Meanwhile, we're just trying to move forward with our lives. We're taking it day by day, step by precious step. It's all we can do. It's all any of us in life can do.
Sincerely and lovingly,
The (No-longer Secret) Society Members,
Lindsay and Ryan
P.S. Don't ask us when we're having children. We really don't know. If we do get pregnant again, it's a safe bet that we won't tell you until we know that our child has a chance of making it. Unless of course you want to know and are really willing to take the chance with us of risking having to share potential grief again. We're pretty optimistic about our chances next time though, just so you know.
P.S.S If you're wondering what we truly want for Christmas, I don't think you'll have to use too much imagination to realize that the ultimate gift will never come in a box with a bow. We'll settle for peace of mind and happiness this year.