We are 1 in 8!
Every April one week is designated for National Infertility Awareness Week. Each day I am trying to provide information on what we face daily during and how this invisible disease has in some ways robbed us. I have been thinking back on the long journey we faced as a couple the last few months. Infertility has robbed us of so much over the past 13 years. “Normal” couples meet, fall in love, get married have a baby (or two or three) and live happily ever after with life’s every day issues. Well we are far from normal! We are the 1 in 8 couple that has been given the title infertile. Our 13 years hasn’t followed the “normal” path at all. We went from meeting, falling in love, finding out something was wrong, getting married to having surgery after surgery. Hundreds of pregnancy tests, thousands of pills, 6 surgeries, 3 IUI’s, heartaches and tears too many to count have all lead us to this day. We have been robbed so much during this journey. We have been robbed of being parents in our time not based on tests and meds. We have been robbed of holidays and big accomplishments that come along with having children. We have been robbed of giving our parents a grandchild to spoil. We have been robbed of having a private relationship between the two of us. Instead we live each month in 27 – 30 day cycles that our doctor knows each aspect of hoping for a miracle yet preparing for more heartbreak.
Our story of the past year
On April 30th 2013 we thought our IUI had failed. I had started spotting and was headed to the doctor to begin our second IUI. We had cried over the loss of the cycle and were moving on. A few minutes into the sono we had to stop and I was sent for a beta (blood pregnancy test). I was told that something didn’t look right and we had to rule out pregnancy before we could continue. The word pregnancy stuck in my head for the next 6 hours – the longest 6 hours ever – while we waited for that call to come with what our next step was. It was 1pm when I received news that our first ever IUI worked. I will never forget that phone call. “Mrs. Greenway, how are you doing today” “That depends on what you have to tell me” “Well - you’re pregnant”!!! Those 2 words we had waited so long to hear. All the pain, all the fear, all the sad tears were wiped away in a matter of seconds during that call. I called my husband and told him through happy tears “you’re going to be a daddy”. We work at the same place so he came right to my office and I could see the joy in his eyes from the news. We planned on only telling our parents and those closest to us out until we were further along but when you have wanted this so bad and fought so hard to get there, it wasn’t easy to contain. We spread the word on Facebook and Twitter and the reception was overwhelming. We were going to be parents. We wanted to share the news in case we never got to do it again and because so many had supported us for so long that we had no right to keep it just to us. I didn’t sleep that night thinking about how far and how long we battled to get to say that. I also knew what our reality was and that it could still all be taken away from us. We weren’t out of the woods yet and we needed to survive the next 8 months. Two days later on May 2nd I went back to the doctor for another beta check. We needed the number to double. On April 30th it was 96, on May 2nd it was less than 2. We had lost the pregnancy at 4 weeks and 2 days along. My entire world crashed when I got that call. I remember telling the specialist who called me personally to deliver the news that this was a cruel joke. (I later apologized for that). I remember my boss going to get Rich. I remember seeing that joy was no longer there in his eyes. I remember going home. Everything else was so numbing and painful that I couldn’t stand it. How could a miracle that was there 2 days before now be gone and leave an even bigger space than the one I started with? Why had God left me when I had begged and thanked him over and over for this miracle? Why were we not going to ever get to hold or kiss or hug or count fingers and toes of this miracle that we waited so long for? Why US!! We immediately tried IUI again. We weren’t ready to quit and weren’t ready to sit and let another month pass when we knew we could get pregnant. Our challenge now was keeping the pregnancy. IUI # 2 was a bust. No conception, no baby, no loss. It hurt just as bad as the first one. We took the summer off; partly to heal and partly to raise money for another round. You see infertility treatment isn’t cheap and sure isn’t covered under a majority of insurance companies. To many in the insurance world becoming a mom isn’t medically necessary but to us that live this life - it is. It is our rights for a chance to become parents that has been decided by those that don’t travel this journey. Infertility is an invisible disease that isn’t curable. Many suffer from unknown infertility. I suffer from PCOS and endo (endometriosis). The only cure for endo is pregnancy or hysterectomy and even a hysterectomy isn’t 100% depending on where the location of the endo is. In October of 2013 we tried our third and final IUI. It had all the symptoms of the first one and all the same pains and bleeding issues and delayed start that we knew it was another loss. I called the nurse and she said it appeared to be another chemical. These losses have been called chemicals because they are a loss before the 6th week of pregnancy which is when it can be detected on a sonogram. We decided to wait until after the holiday’s to see the specialist in case we received bad news which was an extremely smart move on our part. We were told at our appointment that IUI would not help us any further. It had only increased our chances from 2% to 10%. We were told we could look into IVF which again isn’t covered by insurance but that would only increase our chances to 14%. (IUI is roughly $1,200 - $1,400 a chance and IVF is roughly $20,000 - $30,000 a chance). With sadness in her eyes our specialist looked at us and said we needed to go back to our regular obgyn doctor in 6 weeks. She was unable to help us any further at this time. I was given medicine to stop my monthly cycles and help control the endo pain. Devastated once again! At my 6 week check up with regular doctor we determined that the endo is too spread to control and the pills weren’t helping. I have another cyst on my right side and possible tube blockage to top it off. I was put back on Femara to regulate my cycles and help me ovulate and given a lot to think about.
Feelings
I tell you our story to raise awareness that this invisible disease is very much real and very much painful. It doesn’t go away even if you have a child. It doesn’t leave just because you no longer want to face it. It isn’t cured by just relaxing or adopting or not thinking about it or putting your feet in the air after sex or any other suggestion that while you think is helpful is only causing more pain. It is real and it hurts!! For me it is also something I don’t need you to tiptoe around. Don’t hide your pregnancy announcement from me or not tell me because you don’t know how it will make me feel. Be up front as you would anyone else. Will I hurt? Maybe. But that is for me to figure out and deal with not you. As a co-admin on a Facebook infertility support group, I have rejoiced with so many on this journey that got their miracles and are either content with one or trying again for another. I have cried with others that were told their dream is over. I take comfort in the fact that God blessed me with this huge fight to be a shoulder for others. Yes I hurt and yes I want it to be us but that doesn’t mean I won’t support and celebrate with you. I have many friends and family not facing infertility that have had children during this battle to be parents ourselves. I was never so upset at any of them conceiving as I was at a news announcement of child abuse or abandonment. If you know me at all you will know that I will be your biggest cheerleader during your pregnancy because it is your time to shine. I have told the 1300 on my support page that I would gladly give up this battle now if they could all get their miracles and this would be cured. Sadly that is never going to be an option.
Our Future
What is in store for Rich and I? Only God knows. I have grown closer to God on this journey then I thought possible. Now don’t get me wrong I have gone from anger to bitterness to why me to understanding and all over again and again. But I know He placed me on this journey for a reason. I also know our time isn’t over just yet. Surgery #7 is scheduled for this Tuesday the 29th at 11am. We will face this surgery and summer once again with the goal of conceiving and carrying to term in mind. We will do all we can to make this happen but we also know this is very possibly our final chance, our final attempt to get my endometriosis under control and to remove a cyst and tube blockages. This is our final attempt to conceive the family we should have been able to start what seems a lifetime ago. And if this attempt should fail we will grieve as we have each of the past 156 months that we have tried for our family. We will wonder why and curse our luck and I’m sure shed a few tears but we will be able to stop knowing we did everything that was within our ability to do. I will be able to close this chapter in my life and move forward to another. I hope I have shared and educated some of you on not only our lives but on infertility as a whole. Please keep us in prayer this coming week and know that I appreciate every one of you that have shared a status, liked a status or just said a kind word to me over this week and journey of trying to become parents.
Thank you for sharing your story. IF is a cruel joke in life. Hope this upcoming surgery helps.
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