The Patient's Perspective: How Far We've Come... - by Kara Kok-DeRose (Winter 2011)

PATIENT’S PERSPECTIVE

HOW FAR WE’VE COME – HOW MUCH FURTHER CAN WE GO?

by Kara Kok-DeRose
Winter 2011

Recently, many people have given this advice: "Don’t have any expectations." Hmmm, really? Don’t expect anything? Aren't dreams expectations? So, really, this advice suggests not having any dreams? I can’t see how that’s good advice and I don’t think that I will be taking it. You see, I can’t help being optimistic, always seeing the glass half full. Essentially, I am a dreamer because my parents taught me that anything is possible. I dreamt that my husband and I would have the first baby among his siblings. This hardly seemed unrealistic; we're the oldest so we figured it was a given. We were excited to start a new chapter in our lives and to bring the first baby into the family. We had no idea that five and a half years later we would still be waiting.

When we were hit with the news of twins coming into my husband’s side of the family, we were shocked, and like any couple dealing with infertility, we were happy for them but sad for us. It was difficult for some family members to understand our conflicting emotions and to recognize that you can’t simply put them into separate boxes. On top of everything else, the hormones made matters worse and being injected with extra ones didn’t help. Some people thought that we were annoyed because we weren't having the "First" baby. Yes, we expected to have the first, but we were actually sad – sad and scared that a baby might never come for us. Now we would have to start changing our expectations. I always imagined a blue-eyed, fair-haired baby, reflecting a likeness to my husband and myself. Once again, not unrealistic. Now I know that our family may not come about in the traditional sense and that blue eyes and fair hair may never be a reality. Am I disappointed about this? Yes, no, sort of. In all honesty, the gender, race, hair color, eye color, skin color – these are all things that no longer matter to me, as long as Nathan and I can share our life and our love with a child. It is not a disappointment that my child may not be blue-eyed, it’s just a shifting of dreams and expectations.

Expectations are hard to live up to… especially your own. For more than five years I have been feeling unable to live up to the expectations of the people around me; in turn this lets me down. I feel that I have had to spread my energy across so many areas that I’m falling short in all of them. For example, my life can be broken down into Patient's Perspective writer + part-time student + full-time job + full-time wife + full-time business-owner + full-time infertility = Me. I feel like a pie that has been cut into too many pieces, leaving everyone still hungry, and myself feeling guilty for not being able to give my all.

I can remember one morning two years ago: It’s still dark out, the sun hasn’t even thought of entering the sky. It’s Monday and I am in the car at 5:30 in the morning. The steering wheel feels like ice and my hands stiffen up from trying to grip it. As I drive down the highway to London, the oncoming cars in the opposite lane alternately blind me and then throw me back into darkness, giving me a formidable headache. My head pounds in tune with the windshield wipers as the snow continues to fall. We aren't talking about the pretty Christmas-card kind of snow here – we’re talking the heavy kind of snow that seems angry in its race to earth. I am squinting to see through it and my shoulders are tensed up as I try to avoid the transport trucks that don’t seem to have any regard for the smaller vehicles on the road. I finally pull into the parking lot at the fertility clinic. The car is warm now and the steering wheel has finally thawed out, but I am shaking and can’t seem to stop. My entire focus for the past hour and a half was on pushing back fear – fear of the ice on the road, fear of not being able to see the road because of the snow, and fear of the other drivers. I force the shaking back, take two deep breaths and walk into the clinic. I put a smile on my face and greet the early morning girls at the front desk. I'm in the clinic for all of twenty minutes. Blood work first, then ultrasound. "The follicles look good, come back on Wednesday," the ultrasound technician says. I walk out of the clinic and get back into my car. The steering wheel is frozen again and the snow is still angry. As I drive back down the highway, the radio announces a crash that’s blocking all eastbound lanes. First, I thank God that I wasn’t anywhere near the accident and hope that everyone is all right, and then I put in a call to my manager because I am going to be seriously late for work. I feel that I could crawl faster than the traffic is moving and as I sit there, stuck, my brain kicks into overdrive. I think about having to do this all over again in two days, about the fact that, for the past year, I have done this for two weeks every month, and about how many years I’ve been waiting. I am suddenly exhausted. I wonder how much more of this routine I can take. How many more cycles? How many more trips down this highway before something happens to break the cycle? The only way out of this back and forth and back and forth is to get pregnant or, God forbid, be involved in an accident similar to the one that happened today. Out of nowhere, an unfamiliar thought occurs to me – an entirely separate, yet unexplored option. I could make the choice to just STOP. It surprises me that this thought even appears in my head, as I have been so focused for so long. The thought that I could just stop seems crazy to me, because if I stop then that means that I am giving up... right?

How do I make the decision to give up on my unborn children? There’s the bottom line. The expectation that has been driving me to such immeasurable lengths is that everything I go through will be worth it because I am doing it for my unborn children. So many people who have kids of their own have asked me, "How do you go through this hell every month?" I always answer with a question of my own: "What would you do for your kids?" They almost invariably answer: "I'd go through unthinkable physical and emotional pain" or "I would do anything" or "I'd go to hell and back for my child," and I would reply, "Exactly. That’s why I go through this."

When I reflect further on these parents’ responses, a checklist of my own experiences pops into my mind:

Unimaginable physical pain – Biopsies, IUIs, laparoscopies, egg retrievals, embryo transfers, and miscarriage after miscarriage - yes, I can put a check mark beside that box.

Unimaginable emotional pain – My heart breaking open every month, putting the pieces back together only to rip the wound open wider again, having to watch countless friends and family have their babies while I still feel empty, and having to give my husband the news when we lost our child - yes, check that in red marker.

Anything – Anyone who knows me will tell you that there are three things that I really hate – early mornings, the cold, and highway driving in bad weather. For me to do all three at once every second day for two weeks every month on top of everything else earns me a check mark in that column.

Going to hell and back again – Combine the physical pain, the emotional pain, doing everything and anything you can and still failing every time – this defines my own personal hell.

Will I come back from this hell I find myself in? I hope so but I don’t know. I think at some point something's got to give. It’s true that I could stop it all and resign myself to the fact that I will never have a biological child. I could try to learn to be okay with the fact that I will never be able to experience my dream of having a child growing inside me. I could force myself to be okay with the fact that no matter how much I did or tried, it just wasn’t going to work and that sometimes love simply isn't enough. But the worst thing would be the feeling that I had let my husband down, though he would never say so and would never try to make me feel that I had. He would support whatever I wanted to do and love me all the same. Still, I know his dreams because they are the same as mine. I know that he feels the disappointment and sense of failure just as I do. I love him and I want to give him a child so badly. So how do I give up on my dreams, his dreams, our dreams? How do I make the choice to give up on my unborn children? I don’t think that I am capable of making this kind of decision. So now I am asking God and the universe for some kind of sign. What do I do? Is it time to shift my expectations? Is it time to chase after a new dream?