The Patient's Perspective: Notes From My Diary - by Kara DeRose (Fall 2010)

NOTES FROM MY DIARY

by Kara Kok-DeRose
Fall 2010

Month after month, here’s what goes through my mind. For the professional photographer that I am, these are some snapshots of what my life has been like lately.

March 26th

My life is so full. Overflowing with the things I have packed into it. I keep adding things to stay busy so that I don't notice what's missing. My life is so full and yet it’s so empty all at the same time.

April 2nd

When I miscarried in November I was devastated. It feels surreal to ache for something that was there but that you never got to hold or see or feel. I have to admit that I feel like I have lost something every month for the last 61 months that we have been trying to conceive. 61 times I have had to admit that I failed, that I was unable to hold on to any child we might have created. After going through IVF we now know that our embryos are great. So after 61 months of trying to create our child I feel like every month I lose pieces. Pieces of myself. Pieces that I feel like I will never get back. Pieces of my life and time and faith and love. Pieces that leave me feeling empty and lonely and cold. Some people think it’s silly to mourn something that was never “really” here. The baby was real to me, to us. We made plans and dreamed of the person that baby would become. The baby we loved, from even before the first second that we knew that baby was on its way. Then with one phone call we lost that baby and the dreams and the plans and the life we thought we would have together. 61 times is too many times to fail at something and still ask for more, but I am still asking. They say the third time’s the charm; now I am praying that the 62nd, 63rd or 64th time is the charm.

April 15th

I believe that words are powerful. That we as individuals are given the right to choose our words and to reflect upon our thoughts and feelings. I believe that, although actions can speak louder than words, that choosing words is an action. I know that as a writer I think about my words and the effect they have on people. I personally feel that there are certain things people should never say. I was at a gathering recently where one guest’s wife was expecting their first boy. Their son would be the youngest of three children; he would have two older sisters to play with. When the father of this unborn baby boy was asked if he was excited about his son’s birth he replied, “I couldn’t care less.” I had expected an enthusiastic response and so with this remark I almost fell off my chair. I looked around at everyone else and noticed that they were laughing too. My face was on fire. I am sure it was bright red and I felt like my blood was boiling with the amount of rage I was holding in. Had I been in a cartoon you would have seen two identical smoke stacks coming out of my head. I didn't want to make a scene and so I didn't reply to his comment. I was doing okay by not answering him (this isn't a strong suit for me) and then the other shoe dropped when he repeated it twice. At that point I had to stop myself from breaking down screaming and sobbing because of how angry I was and how unfair it is that I can’t have a child and someone else is saying they couldn’t care less. So instead, I told him, in what I thought was as nice a way as I possibly could, that babies are a miracle and he should be proud because not everyone has what he has. I didn't sleep for a week after that and his words still haunt me.

April 20th

A few years ago if you had asked me what TV show my life could be themed after it would have been “The Bold and the Beautiful” but now, five years later, I would have to admit I feel more like my life models are something like “The Old and the Barren.”

April 28th

Do you know anyone who is happy – truly happy and fulfilled? I look around and so often you see people who are missing one piece to their puzzle, whether it’s the guy or the ring or the house or the job or the baby. There is always one piece missing. It seems as if life were telling us you can’t have everything – something has to give. There has to be some sort of sacrifice. I talked about this with my cousin once, as her life mirrors mine. She has the guy, Steve, who is just awesome and who would do anything for her. He gave her “the ring”, a really good ring. Their marriage is solid; they built their house and she worked really hard to get the job she always wanted. She had it all except the baby and, after she had some really hard times she asked me one day “is this the one thing that I don’t get to have because everything else is so good?” I thought about it for a minute and understood completely where she was coming from and I couldn’t lie to her. I told her I hoped not but that I didn’t know. Not too long after that we found out she was expecting Ethan. Her pregnancy wasn’t easy, however, and her birth story is horrific. When the baby finally came there were some concerns with his health. She didn’t get a minute to just be a happy new mother. There was too much pain and she was terrified, but now my gorgeous new little cousin is here and he is cute and fat and cuddly. Now she has it all and that, probably more than anything else, is what gives me hope. I can have it all too, maybe? I will not be punished for having everything else and just like my cousin Stephie, the pain and the hard times will change; they will get better and I know that I will be a better mother because of it … just like she is.

May 1st

I was in my office the other day signing up a client to shoot her wedding. She asked me what day it was so that she could write out the cheque for the deposit. I was distracted while filling out some paperwork for her and said, “It’s day 11.” Then there was a long pause as she tried to figure out what I meant and then I realized what I had just said. I could feel my face flushing and I felt so embarrassed that I almost started laughing. I stammered out that it was actually the 29th. My client wrote the date in and handed me the deposit. Afterwards, I felt so stupid. Literally, without thinking, I had told her that it was day 11, as in day 11 of my cycle. I have no idea what the date is today if you ask me. I think it’s Wednesday, maybe, yeah, it’s Wednesday. To verify that though, I would have to glance at a calendar, but ask me what day it is in my cycle and I know immediately. Ask me what my temperature was today and I can certainly tell you. What did I have for breakfast? I have no clue; it’s like anything that isn't pertinent to remember is siphoned out of my brain, leaving only enough room for the most important things. My life revolves around the cycle and this cycle is driving me crazy. So crazy that I ended up telling my client it’s day 11 when it’s really the 29th. I looked at my husband that same day and asked him, “Hey, what day is it today?” He didn’t even look up at me as he replied, “It’s day 11.” All I can do is laugh. Obviously we are both ruled by my fertility cycle.

May 15th and 16th

Portraits in the Park came and went in a flash. It was so busy and bright and amazing, like a strike of lightning or the flash of my camera. Fresh Look Decorations, a company in Kitchener, had decorated our space and everything looked welcoming and, well, fresh. The panels of fabric draped from the ceiling, the branches and the nests enveloping our theme. I looked around and everywhere I turned there were beautiful couples, laughing families having their pictures taken, their memories captured. I was again overwhelmed. Every time I thought about our situation too much many tears started. My family surrounded us, volunteering help in any way they could and our friends Jason and Kim stayed with us all day as well. I met so many amazing people who told me stories of how they created their families, how they never gave up. I was finally able to meet Bev Hanck with whom I had had so many phone conversations, but never met in person, and then Jocelyn Smith who I had heard so much about. I hugged complete strangers with tears in my eyes and joy in my heart. I put my camera down to hold babies and to hold my husband’s hand while we took a minute out to just take it all in. Creating memory after memory to help support IAAC. People had come from all over. Toronto, Brantford, Burlington, Cambridge… even my cousins had come from as far away as Bowmanville, Whitby and Ajax. They drove all that way (an hour or more) just to support me. When I saw my cousins walk up with their little ones Jack and Ethan I almost lost it completely. To know how much they care about me and understand me and want to be there for me is what family true, real and loving, really means and what all families are supposed to be, and I am so glad that I am a part of this one. Friends, family and complete strangers all came together for one purpose: to increase infertility awareness and support those going through this heartbreaking condition. We raised $4,000.00 for IAAC that day. We are so excited about it that we are planning even bigger and better things for next year. So I say thank you to everyone who donated appointment time and talent, and to those of you who made an appointment or just walked in and donated money to have your portrait taken. Without all of you this wouldn't have been possible. I told people if you want to be a part of this event next year in 2011 or have an idea you think we should try out, please contact us at: pitp2009@yahoo.com .

May 17th

I woke up early today and my brother and husband drove me to where I was to undergo surgery in Toronto. We were getting closer and closer and to distract myself I buried myself in my book. I never used to be scared of anything. Now I was riddled with fear. I was literally afraid that I wouldn't come out of this surgery. It was a laparoscopy and a rather common procedure. I just don’t like being put under. It seems like with any drug I have had in the past I had the most uncommon reaction or symptoms. I made my mom promise to take care of Nathan if anything happened to me. I know it probably sounds ridiculous. Anyway, finally, the narcosis was no big deal. I just couldn't get over the feeling that it was not going to go well. I am a pretty good actress (all of my drama classes and arts backgrounds pay off in these situations) and I fended off any signs of fear so that my husband wouldn't be too scared. However, I kissed him goodbye before walking down the long hospital hallway. My heart was tripping over itself as I walked into the operating room; I looked up at all the lights and medical stuff in the room and wanted to run screaming back down the hall to the family waiting room and beg Nathan to take me home. I am stronger than my fear, I guess, because I calmly got up on the table and breathed in the gas while tears streamed down my face. There wasn't anyone I knew to be brave for anymore, and while I knew there was no going back, I was terrified. I knew I needed to have this done to see if I had endometriosis and a part of me hoped I did. I know it doesn't make sense that I want something to be wrong, but I just want an answer so that we could fix it. When I came out of surgery the results showed that I don't have endometriosis. The doctor told me so and I immediately started crying. I am still in the dark as to why this is happening to us. Back to the drawing board, I guess.

June 1st

I have to admit that sometimes I wonder, when I finally do become a mom, is it going to be what I think it’s going to be like? Or, after all this pain, will I be so damaged that my expectations will be completely different from reality? I can’t tell you how many times in a week I hear parents complaining about their children or going on about how their kids are driving them nuts. I listen and I think to myself, “Yeah, I wish I had your problems,” and then I think, “Do I?” All these people I meet are moaning and groaning about sleepless nights, babies puking on their favorite dress and never getting any alone time. These are experienced parents here. Maybe my dream of being a parent is just a figment of my imagination? Do I really want that? Is there something wrong with me when I dream about all of that? I have to ask myself whether I really want this life of diapers, throwing up and nights awake with a screaming baby?” Yet the answer, every time I ask myself, is without hesitation: YES. Today I spent time with one of my favorite babies. Her name is Hunter. My friends Jessie and Tim are not the kind of parents I spoke of earlier. They are thrilled to be parents. You never hear them complain. Tim is a great dad and Jessie literally glows with how much love she has for her daughter. I took Hunter for a walk in the park. When she woke up from a nap she was super cuddly and as I sat in my backyard with her chubby little body cuddled up to me all I could think was, without a doubt, absolutely, I would give up sleep and my favorite dress and I would change a million diapers just to spend another 15 minutes like this - a peaceful chubby baby curled up and all smiles. This is what I am missing out on.