Monday, July 26, 2010

“In complete darkness we are all the same”-Janet Jackson

While I was first trying to get pregnant, I worked as a Campus Minister at a wonderful local Catholic college. As Campus Minister, I mainly focused on organizing service learning trips in the US and abroad for the students. I also occasionally did retreat work with the students. During one of my first weekend retreats I had an extraordinary experience that changed my perspective forever.

I did not feel like going on retreat that weekend. I just received news that my first IUI after my surgery to remove the endometriosis was a failure. Earlier that morning I had gone into my doctor’s office hoping for clearance to immediately start up my second IUI. As I was preparing the retreat house before the students’ arrival, I received a phone call from my doctor’s office saying I have huge cysts (thank you Chlomid) and my blood work was not great. Not only did the first IUI not work, I had to go on the pill for a month in order to relax my system to see if my cysts would go away so that I could try again the following month. That would mean no possible pregnancy for at least two months. What is two months to someone who has been already trying for two years to get pregnant? A lifetime.

Feeling mushy, but determined to be my best self, I welcomed graciously my small group of college students and the priest who had arrived with them to lead the retreat. The priest talked sternly about the “no cell phone or watches rule” to encourage the students not to be distracted by the outside world. As the students filed out to put their stuff away and claim their rooms, one student lingered behind.

This student, whom we will call Polly, was and still is an amazing, determined, giving, selfless young woman. She led a group on campus that organized local community service projects and was involved in many other things. She was a pleasure to be around, a girl with a good head on her shoulders. Unbeknownst to me, she was also terrified, isolated, stressed and overwhelmed. She was 10 weeks pregnant and a junior in college. After the other students and the priest left the room, Polly asked me if she could keep her phone because there was a crisis going on in her family. The social worker in me asked if everything was okay. I thought maybe her grandma was sick or something.

Polly told me she was pregnant. I honestly would have been better prepared for her to tell me she was waiting for a call from NASA to visit the moon. She told me her family and her long term boyfriend already knew and were supporting her in her decision to keep the baby. But her family and her boyfriend were a plane ride away. She wanted the phone for security. I told her of course she could keep the phone with her. I also managed to blurt out that if she needed ANYTHING she could count on me.

The retreat progressed and I kept staring at her belly in wonder, thinking about the little life in there. A lovely nun came in to talk to the students at one point about valuing themselves. She did something really unique in trying to teach my students that they were all special, God’s gifts; she read them, “On The Night You Were Born”, a children’s book about how all the animals on earth celebrated when we all came into existence. It is a beautiful book. There is a hidden line on one illustrated page that says, “You are a miracle.” Tears came rolling down my cheeks looking at this young woman Polly, carrying an even younger life inside of her.

Something really hit me that night as I went outside and looked up at the stars and had a chat with my Creator. My husband thought then and still thinks that these simply random circumstances were cruel and unusual. I kept repeating the same questions in my mind. Why was this happening to me? What is the purpose of this? Then it hit me that Polly was probably asking these same questions herself. We were both “terrified, isolated, stressed and overwhelmed.” Life was not working out like either one of us had hoped or planned. The circumstances we found ourselves in were forcing us to rethink our lives. We both felt alone, like no one could possibly understand. We couldn’t really share with anyone what was going on for fear of being judged. We both were putting on a brave face while inside we were in turmoil. We actually were both trying to make the best of things as best we could.

I suddenly felt overwhelming compassion for Polly. So when she asked me at the end of the retreat if I could accompany her to her first two ultrasounds because her family lived far away, I agreed. I prayed hard the night before her first ultrasound, not just for the baby’s health, but for the grace and the strength to get through it without breaking down. It was a great honor and privilege to be there with her during this special moment, yet it was so difficult with all that I was going through. I sat next to her, marveling her pregnant belly as we both listened to the little heartbeat on the monitor. I am sure Polly was thinking, “With all my boyfriend and I did to prevent this, what were the chances that we would get pregnant?” And at the same moment, I was thinking, “With all we are doing to try to make this happen, what are the chances my husband and I will get pregnant?”

“In complete darkness we are all the same”-Janet Jackson

Monday, July 19, 2010

Say What?

When it comes to infertility I have found that people just don’t know what to say to those going through it. Then when they finally find the words, you kind of wish they hadn’t. My husband and I have had many crazy things said to us throughout our journey. I find these statements mostly come from those closest to us who are having trouble seeing us go through the pain we are going through. The crazy part is people say these things and their words come from a place of love and care(mostly- there are exceptions!). I think our family and friends are trying to be helpful. They just want to make it better.

Listed below are ten unhelpful (and borderline hateful) things people usually say to those of us struggling with infertility. I personally have heard each and every one of these. I have also included what I wanted to respond with and what I actually said.

1) "You are just stressed. If you relax and stop thinking about it, it will happen."
What I want to say: Thank you Captain Obvious for pointing out that I am stressed. Guess what? As long as I am dealing with infertility I am going to be stressed. Makes things pretty bleak for me if I go by your assessment of the situation. By the way, how can I stop thinking about it when I am injecting myself daily and getting vaginal ultrasounds every other day. Also for your information, if stressed people didn’t get pregnant the human race would die.
What I say to end the conversation: Hmmm, maybe I will take a Yoga class or something.

2) "You want it too bad. You just can’t force these things."
What I want to say: What is wanting it too bad when it comes to bringing a life into the world? What does that even mean? Tell my doctor who is pumping the heck out of me with meds he can’t force it, because he feels otherwise. Oh and by the way, I am PAINFULLY aware of my lack of control in this situation, but thanks for the reminder.
What I say to end the conversation: You really can’t.

3) “You are so young. Why are you worrying?”
What I want to say: Yes I am young AND 94% of my eggs are bad AND I have endometriosis. What is there not to worry about? (“Older” women get a lot of grief too I am sure) I feel like commenting on age either way is really dismissive and unhelpful.
What I say to end the conversation: Yup. I am certainly young.

4) “You’re too skinny” or "You’re too fat"
What I want to say: If my weight was the issue, my doctor would have told me day one. Do you think if that was the problem he wouldn’t have caught it? During a fertility cycle, I probably see my doctor and their staff more than I see my husband; it would have been noted. My infertility is not my fault or in my control!
What I say to end the conversation: Hmmm, I will check that out.

5) “You’re working too hard at your job.” or “This fertility stuff is your only focus! You need a distraction.”
What I want to say: My lifestyle is not the cause of my infertility. THIS IS NOT MY FAULT. Honestly, I have a super sized box of drugs that I am pumping into my system through needles, if it was as simple as cutting my work hours or getting a hobby I would be pregnant.
What I say to end the conversation: Who doesn‘t like a vacation?

6) “It will happen when it is meant to be”
What I want to say: Though that may be true, I simply don’t want to hear it right now. What if it isn’t meant to be? If it is meant to be, how do I take all the steps to make it happen? Why wasn’t it meant to be already? It may seem like a wise, reasonable answer, but it just isn’t practical. What if my fertility doctor said that to me when I went to him with my troubles? What I say to end the conversation: Well that is true.

7) “You’ll be pregnant by next year. I‘ll bet you.”
What I want to say: Fine, you want to be a psychic friend? I will accept this answer on one condition. If you are wrong future me gets to come back in a time machine to this very point and smack you, really hard.
What I say to end the conversation: Wow, that would be really nice.

8) “Wow, I never had any trouble at all conceiving.”
What I want to say: Clearly, thanks for sharing.
What I say to end the conversation: That is really good. It’s a tough road. But, we all have our journeys.

9) "I understand what you mean, with our first one it took two months to get pregnant."
What I want to say: (Long sad sigh)
What I say to end the conversation: It IS a scary thing to think you are going to get pregnant right away and then it doesn’t happen.

10) "Maybe you’re pregnant" or "Maybe you will get pregnant on your “infertility break”"
What I want to say: I am not pregnant, though I may look it because I am swollen and full of cysts from a cycle that didn’t work. When I said we were on a break, there is no room for a “Hey you never know it could happen when you least expect it!” I am on a pill to rid myself of those cysts that will prevent pregnancy. Actually, the cysts are so big, I am banned from participating in any “relations” that will get us pregnant. The fact that you are insinuating such a possibility is devastating to me because I know it is not true now or will be true in the near future (unless through immaculate conception).
What I say to end conversation: Maybe!

I am comforted by the fact that most of these people who say these things love me dearly. These are the same people who pray for me, help out with my needs during these tumultuous times and love me when I am whacked out on hormones. So I hope this blog will help not only those who have heard these things, but those who are trying to support loved ones going through this. I look forward to all of your additions to the list.
With Love,
And Happiness,

Saturday, July 10, 2010

Our Journey

In high school, if you asked me what my future held, I probably would have said either doing intense volunteer work in a village in Africa for the rest of my life, or raising a huge family with the love of my life. I remember hearing about fertility treatments in high school. My initial thinking on the subject was, “Oh no. I would never do something like that. I would just adopt.” One laparoscopic surgery, three I.U.I.s, one beautiful baby girl, two I.V.F.s, 12 Embryo Biopsies, 16 little angels lost, countless blood tests, ultrasounds and many other tests that I cannot even pronounce later, my current self is on a journey I could have never imagined nor predicted.

When my husband and I first started casually trying to conceive at the young ages of 26 and 25, we had no idea that my body is, The Money Pit, of fertility. Like the characters in the 1980’s classic, we saw lots of potential in this beautiful dream of our future life and then slowly but surely, things started to unravel! After a year or so of “casually trying“, we upgraded to “really trying“. Then, after 6 months of getting nowhere, I felt in my heart something was terribly wrong. During my first visit to my fertility doctor I just wanted some answers. I just wanted to be pregnant. That day we entered on a journey that, unbeknownst to us, would take us to some of the highest peaks and lowest valleys in our life.

After ruling everything else out through many "pleasant" tests and procedures, our fertility doctor performed a laparoscopic surgery on me that revealed a moderate case of endometriosis( After not being able to get pregnant naturally a few months post-surgery, our doctor recommended we do I.U.I. This led to some complications with cysts and no pregnancy. After the cysts went away, we went through another I.U.I., and we were so incredibly lucky to get pregnant with our little girl.

Before my daughter was born, I secretly scoffed at all of the women lugging their toddlers and older children into the fertility doctor’s office. I looked at them thinking, “I would be SO happy with just one baby. Don’t they know how lucky they are?” Well, six months after my little one was born, before my endometriosis could grow back, I was in my doctor’s office trying my luck again. My first day back my blood test showed I had a biochemical pregnancy (fancy term for early miscarriage). I was shocked and devastated, but my doctor reassured me saying it happens to many women. He recommended we go for another I.U.I. which worked well last time.

The I.U.I. did lead to a pregnancy, only to end in another miscarriage. My doctor again said that was normal, and we were just unlucky. He then suggested I.V.F., which compared to I.U.I. was just a "few more shots and just a little more complicated." He felt the ability to examine our embryos before implanting them would avoid another miscarriage and lead to a quick pregnancy. A textbook perfect embryo, as he called it, was placed in my womb, but ended with our third miscarriage, all in the short span of five months! There were more tests, more discussions and finally an answer followed. I am a carrier of a balanced reciprocal translocation. This means that there is a genetic mutation with the majority of my eggs which causes only one out of every sixteen of my pregnancies to be viable. The rest will miscarry or worse. A baby with this type of translocation would be born without most major organs and would be stillborn or would not survive more than a few moments past birth.

Most people would search other options at this point. Why not adopt? But, my doctor didn‘t give up hope; so we didn’t either . His solution was that we do embryo biopsies so that we could screen the embryos' genetic material to see which ones were viable. Suddenly we were transported into an episode of X-Files. We were assured it is common, it has been done for many years, and our insurance may even cover it! As practicing Catholics, we had, many moons ago, stretched way beyond our initial limits and comfort zones. I looked at my daughter thinking, “How could we not do everything possible to try and bring another life into the world?” One egg retrieval, 12 embryo biopsies later, we were told none of them were viable. They all had the mutation and would not survive. That experience was a year ago this summer.

Like the characters in The Money Pit, we have invested ourselves deeply in a dream of how things could be. Even with “our house” crashing down around us, solutions to our problems indeed exist, though extreme. With solutions comes hope, albeit just a glimmer. Relinquishing all hope doesn’t seem like a viable option for us. Letting go of this dream or “selling the Money Pit” will mean that I take a huge loss after investing so much. Trying to wrap my head around a new, unfamiliar avenue like adoption overwhelms me greatly at this point. As unreliable and taxing as all this infertility stuff is, at least I feel like I know how to navigate it.

Our story is one of faith, one of heartache, one of hope. Surviving it all thus far has taught me that no matter how broken or how bad things are, we adapt, we get up, we go on. Chances are we will not get pregnant again as we try our last IVF with embryo biopsies this fall. Chances were, my daughter should not be here with us now seeing as how the odds were stacked against her on account of my endometriosis AND the genetic mutations in my eggs. Chance may be that our next child will be born to another amazing woman, who will love him so much she will give him up for adoption in hopes of giving him a better life.

I am not sure where our journey will lead us, but I know our journey thus far has been incredible. I hope to share some of my stories with you so that you in turn will share yours with me and the rest of the women who are all taking their chances on creating a family. Society does not like to talk about infertility, but it is so important to do so (though terrifying!). Cheers ladies to a new part of my journey starting this blog, and to you, and all of your journeys!
With Love,
and Happiness,