Our Dream, Other People’s Reality

Sometimes when you start out on a journey, you don’t even know that is what you are doing. And fewer things are more true than saying every journey, no matter how great or small, changes you.

When I took my first “grown-up” job 15 years ago in the industry I still work in today, I didn’t realize I was starting a journey to a good career, which even with its ups & downs has consistently provided for me.

When I met my husband – 11 years ago – it was at a time when it seemed all wrong but something about us just kept “sticking.” I didn’t know then I was beginning a journey to the greatest friendship and even greater love I have ever known and then a marriage unlike any I’ve ever thought possible or witnessed in my friends or family.

And when the time came for us to do what lots of people do after marriage – the thing we were more than excited & ready to do after 7 years together & (literally) getting the house with the white “picket” fence – start a family – I didn’t know that the most exciting…..but heart-wrenching, indescribably difficult, physically tormenting, emotionally crippling and faith destroying journey was only just beginning…..and that it would never end.

The first time we heard the words “infertility” it didn’t fully sink in. My husband and I both will tell you that it seems we have bad luck. That everything we do, we often take the long way around before things work out. I even joke that I like to do things twice, just to be sure I get it right. So when we were told we going to need help getting pregnant and later, that likely our best option would be IVF (In-Vitro Fertilization) to do what teenage girls or couples who are in NO position to raise a child seem to be able to do so easily, to do what our mothers did by “just sneezing!”…we weren’t completely alarmed quite yet. I think, because deep down we always assumed that forging our usual, long, hard way around would eventually lead to us brining home our beautiful, healthy, biological children. It wasn’t until after the first try failed that full panic set in.

Without ALL of the specifics, I can tell you I have recovered from the anxiety & discomfort of exploratory – turned necessary – surgery to correct a birth defect & severe endometriosis. Neither of which I ever knew I had. I’ve outsmarted nausea from an obscene drug regimen and felt the sting of 1,000 needles at the hands of my nurses, my husbands and my own. We put more than 100,000 miles on vehicles visiting specialists in 4 different cities. I ate strange foods, attended yoga, practiced meditation, & underwent acupuncture treatments. We spent an obscene amount of money and paid the price & scrutiny of weeks away from work.

I’ve shed tears until my eyes & eyelids were too swollen to see and carried the burden of countless “what if’s” as I lay in bed, holding & rubbing my belly….talking to microscopic embryo(s) praying, pleading and begging for our child to stay with me. And I’ve taken the phone call from our doctors to present a negative pregnancy test result more times than my heart can bear to tell.

I am here to testify that your heart can be broken & made whole only so many times. Eventually some of those pieces will no longer fit back together and you will live the rest of your days with cracks & holes in the area that used to occupy the space that was your full heart, with occasional sharp pains and with exhausting sorrow.

The first years were full of shame & embarrassment for something I had no control over. Our infertility was generically categorized as “unexplained.” In other words, no one can say exactly why I’ve not been able to give my husband the child he deserves more than anyone I know. Not one physician in a starched-white coat can explain why I’ll never hear our child cry out for me. Never in my life have I wanted to be diagnosed with something so badly…..for if I had an exact diagnosis, wouldn’t we have had a chance of beating it?

As we continued to challenge what we ultimately would not be able to change, time passed and while my naïveté expected people to pick up on the obvious and act/speak “accordingly,” I found – and still find myself – opting out of get-togethers, stomaching hurtful comments, excusing myself mid-conversation and having complete fall-to-my-knees panic attacked breakdowns at awkward times & in very public places.

For reasons I still cannot understand, this medical issue is not spoken of openly. Treatment is not covered by most insurances – the state of California certainly doesn’t mandate it to. As a whole, it is PAINFULLY isolating. During check-in with the reception desk at my regular OB/GYN’s office for a visit very early on in this journey, the clerk explained I would need to pay a non-refundable $2,000 deposit for my “infertility” appointment….because, she said, “infertility” is not covered by insurance (as if I wasn’t aware of this point). The woman must have said the word “infertility” ten or so times when I finally lost it. COMPLETE body shaking, tear flowing, voice cracking, hand pounding on the reception desk lost it. Not only had I not been prepared for the deposit, but the more she said that word, the worse I felt – standing in an open lobby for all the world to hear. The more she said it, the uglier it became. It felt like a punch in the stomach with every syllable.  (I was later told by my physician that the incident had been used as a “teachable moment” with his staff.)

What I know now, is that I was not the only one who ever had – or ever will – go on this journey.  I have since learned there lies a secret society out there of more couples – people you know – who have been struggling in the same ways. In fact, 1 in 8 couples are battling some form of infertility. One in eight!! Look around you….that’s a lot of people you know. Yet, I bet it’s not a topic of conversation at the summer BBQ or around the water cooler. You may not realize some friends of yours are staring infertility in the face….or maybe you do….but do they feel like they can talk openly about it? Every story I hear or read about includes “shame & embarrassment,” but why?

Many of these stories eventually have happy endings. The reproductive science community is making advances every day and they are creating families in ways you can’t even imagine. There are possibilities for positive outcomes for so many…….so many reasons to be hopeful. Which is the tricky thing, isn’t it? When they tell you “there is always hope” or “never, ever give up?”

Because for some, it just won’t work. Some will sit in an office with walls full of beautifully framed degrees and certificates, photos from the last ski trip and of all those “miracle families” their specialist has helped to create and across the desk from that doctor who will say they don’t know why it isn’t working. Some will be told they’ve given the specialists too much credit. That while medicine can do amazing things, it often is NOT a perfect science and they do not have all the answers. Try to exorb THAT from someone who’s seen every inch of your body inside & out and to whom you’ve handed your annual salary to…twice.

On this journey, I’ve trusted the wrong people with my private thoughts & emotions and carried hurt on my sleeve from those who knew our struggle and showed epic lack of compassion after the expiration date for THEIR tolerance had come & gone, down-grading me from being “such a strong woman” to “being such a miserable person” less than 4 months after our Reproductive Endocrinologist called to say that I’ll never be able to carry our biological child.

As if the pain isn’t bad enough, we have felt judged and told that we must not want it badly enough. That if we really wanted to be parents we could “just adopt.” Or that we would “just find a way” to afford other options like gestational surrogacy. As if our deep desire to conceive (and I carry) our biological child is not significant enough or socially or morally correct in some way. That if we truly wanted a baby that we would want it any way, any how. There are amazing and wonderful options outside of being able to conceive & carry our own biological child, but they are not for us and there most certainly isn’t a “just” associated with any of them. There are still risks associated with these options. These options are very expensive. And these options are not obsolete of further heartache.

We know and love dearly many adoptive families and families who were created in amazing other alternative methods. We witness first hand on a very regular basis the love & joy in these families. And yet, for reasons that belong to us only, we still don’t feel it is for us. I never would have imagined we would have to defend our loss in this way, but we do. What people may not realize and I now would encourage them to consider when offering these ideas is A) believe me, we’ve considered & weighed all of our options and B) that by making these comments, you make light of, or invalidate completely the journey we’ve been on.

On one particularly rough day, I was told maybe I need to speak to my pastor, see a doctor or perhaps seek counseling & take meds to help me “get through this bad place I’m in.” Sentiments I am absolutely certain were meant to console or offer light at the end of the tunnel. Trouble is, the only light we wanted at the end of our very dark tunnel, was to see the light in our child’s eyes…..the kind you see on Christmas mornings, the first time we would take them camping at the ocean, or the way a child’s sleepy eyes light up the first time they see you in the morning. No medicine, religious or mental health counselor can change this. You would never ask someone to work through or get over their happiness…..why would you ask someone (unless harmful to themselves, of course) to get over their sadness?  The grief I feel still today is not understood by many and tolerated by less.

The support we received wasn’t all miscalculated or misinterpreted. When we finally shared our struggle, we had wonderful support from those who took phone calls late at night to answer questions about a procedure, medicine or test result or just to listen while I cried. A friend who shared research and positive reinforcements and understanding since she was just a few steps ahead in her own journey.  My sister, who always reminded me during the process that it was okay to be selfish, to take care of myself and now, who provides a constant space in which I am allowed to grieve or laugh or to just “be.” She allows me to be a constant fixture in my nephews life, which admittedly can sometimes difficult but is mostly a huge joy. My best friend, who kept me grounded and constantly checked on me – very aware and admitting of the fact she knew there was nothing she could do otherwise.  A normality and comfort I needed every day.

Even my husband learned he had friends who, as it turns out, had experienced similar journeys and who were able to offer an ear or conversation in the way a man needs to have. There have also been those who have shown support in ways they didn’t even know they were showing. All of it has been appreciated and will never be forgotten. But, at the end of the day, it is still our shattered dream….and is still other people’s reality.

I am disappointed in myself for the honest jealousy I hold for my friends & family – and let’s be honest, perfect strangers – who easily or not, are mothers & fathers. There were women who supported me during my journey I am embarrassed to admit I was mediocre at supporting during their’s – not because I didn’t want to be, but because I couldn’t. Physically or mentally. It was worse, of course when they received the positive results we never did. While we whole-heartedly wanted success for them and truly were happy for them when they got it….there are no words to express the difficulty in watching 100% of the people we knew traveling this road have positive results….100% of the people!!! We are the only people we know who were unsuccessful after multiple attempts at IVF. To be fair, we know other couples who began the journey but opted out in the early stages for various reasons. But every single woman/couple we know who has gone through IVF, IUI or low dose med assisted “natural” attempts are currently able to snuggle with their child(ren).

Celebrities have begun talking more and more about infertility issues. At first, I felt a kinship with and an appreciation for some of these people. I thought it was wonderful that they were sharing their experiences so that people like me would feel like I wasn’t alone. I felt this way until it occurred to me that these people were able to see some of the best doctors in the country. These people did not have to figure out where the next cycle fees were going to come from. Don’t get me wrong – it is not to say that their journey was easy since I am absolutely certain it was heartbreaking. However, the truth is, more money = more options and the financial stresses & strain of infertility just might be equally as difficult as the infertility itself. At some point, you have to make the impossible decision to stop spending based on the information you have and your particular situation details. Which is exactly what we had to do.

We had to choose when enough had been enough.

Let me tell you….knowing the decision of when to stop was our decision, does nothing to ease the pain. In a way, it makes it worse at a time when you think it can’t possibly be worse. Knowing the only thing we had control over was when to stop – in essence, makes you feel more like a failure. More guilty for not continuing to keep the faith.

I fear the consequences for the way I’ve cursed God for not giving us the dream he placed in our hearts and for screaming at Him in rages that He is awful. We are well aware that things could be worse, that many have lives we can’t imagine having to live. Part of what makes our inability to have a biological family of our own more heartbreaking stems from some pretty tough things that have happened in our existing family. As if this or that event wasn’t hard enough…..It’s not that I no longer believe in God….I just believe He’s chosen to leave us out here…empty-handed….refusing to fulfill our dream. When someone tells me that He must have a “bigger plan” for us, all I can think about is screaming. When someone tells me they’ve been praying for us, I can’t help but wonder if they really have…..and if they had, would it have made a difference?

I’ve walked this path NEVER alone but often forgetting that it’s my husbands’ path too. Our marriage has been tested – and will be – as we come to realize each and every day a life not as we planned.

But we are lucky. Our marriage is strong – and even on tough days, it grows stronger still. It is built on all of those good old-fashioned things which provide strong foundations, frames & shelter for marriages. Were it not for my husband today, I wouldn’t have the strength to write this testimony during National Infertility Awareness Week (April 19-25, 2015). Were it not for him, I may not have got back to a place where I could try to start putting myself back together at all. The entire time I felt the guilt and shame for not being able to give him a child and pushed him as far away as I could, he was loving me. He never left me because this wasn’t what he signed up for. He never blamed me or begrudged me. He never took his love away. He got up every day, told me he loved me and carried on – to show me that it was possible.

Does life go on? Of course it does. Do we laugh and smile and enjoy things? Yes. But this will never go away, it can never be changed. The spare bedroom in our home will never be a nursery. Our children’s artwork & finger smudges will never cover the refrigerator. I will never coach our daughters softball team or will my husband teach our son his love of motor sports, how to operate equipment or cook the best ribs in town. There will never be a time when I pick our child up from school and they run across the playground, joyfully screaming “mommy!” And I will never have the opportunity to scold our child saying they are acting just like their father – something deep down I would have smiled about and been insanely proud of.

This journey has changed me. It has changed me physically. It has changed me mentally. And it has irrevocably hardened my heart. It has taken the every day joy of hearing children laughing or a funny story about something a child had said or done and rather than being able to embrace the delight of it, often feeling the sting of the “I’ll never” of it. This journey has left me in a constant state of blocking social media postings, changing television channels & radio stations, not opening Christmas cards and pulling away from friends.

But I no longer feel shame or guilt every day.

Sad? Yes. I am sad Every. Single. Day. that we’ll miss out on the entire experience. On the joy. On the sleepless nights. I am sad knowing we were meant to raise our child together, to pass on my husbands dark eyes, my sense of humor, our childhood toys and classic cars to them. I am sad that my nephew will not have cousins from my sister and I’s side of the family and that my husband is the last to carry on his family name.

People say you can not know true love until you are a parent. You may think I can not argue something I haven’t experienced, but I must say I disagree. I have never in my life loved anyone as much as I loved our embryos – those beautifully divided cells, genetically healthy, microscopic children that weren’t meant to be. I would have and did do everything I could for them. I would have given my life without a blink of the eye for just one of those embryos to have made it….to give them life and to give my husband the gift of fatherhood. I have never wanted so much for another person as I did for them. For them to be healthy and happy. For them to be seamstresses or movie stars or farmers….whatever they wanted, so long as they were happy. I’m not sure how to describe the feeling of realizing the dreams you have for someone you haven’t met – and in our case, never will meet. If that’s not true love, then I suppose I’ve lost the argument.

By writing about it….writing the ugly, sad, raw, gut-aching truth about our path, I hope not for pity or sympathy. I hope by owning it, I will gain the strength to continue to work through our loss and maybe make someone else feel stronger by sharing. I think ALL stories of infertility should be shared. Even the sad ones. Even the ones that don’t result in a baby. Our stories count too.

What I hope, is that someone out there who is frustrated after months or years of trying to no avail, scared by the barrage of tests the doctor has ordered, intimidated the first time they hear the word “infertility,” or terrified after opening their first mail order medical supply box full of mixing needles, syringes, refrigerated vials and feeling like there’s no one to call, will find the strength to pick up the phone and tell someone what they’re up against.

What I hope is for people to have empathy. I hope that if you have a friend who you know is struggling, that you will send them a “hang in there.” Your well-meant suggestions to “just relax” or to “pray about it” probably won’t help them, but making sure they know they are not alone by your being there quietly and without judgement will. And if they decline an invite to your baby shower, your kid’s birthday party or soccer game, I hope you’ll appreciate their anxiety and offer a sincere “maybe next time” or “whenever you’re ready, you are always welcome” and that you never set an expiration date upon which you’ll no longer tolerate their heartbreak. No matter how much you feel like they bring you down, I assure you, they feel much lower. People with broken hearts of all kinds are not trying to bring other people down with them….they are simply trying not to get lost in a world of other people’s happiness.

And to you. Yes, you. The person reading this who really wishes people would stop asking when you are going to have a baby. The person who has a secret Facebook page or email address so you can “like,” follow, or join certain pages with anonymity. YOU…the woman with the secret Pinterest board with all those sweet “in the future” nursery design ideas or the sad infertility quotes. You…who goes into hiding on Mother’s & Father’s Days because it’s unbearable or who walks away from the Monday morning office chit-chat because one more story about so & so’s wonderful weekend with their children may actually stop your heart from beating. You…who told your partner it was okay if they wanted to leave you for the guilt you feel; the husband who kept a small motorcycle for “someday” and doesn’t know how to make things better or the wife who keeps the names you & your husband chose for your never-to-be children tucked in your wallet to carry with you always….

I know your heart is in your stomach.  I know you read these lines and understand.  I hope you will keep trying and exploring your options until you decide you can’t keep trying & have exhausted the options you are open to. I hope you now know that there are other people out there, fighting this fight and those have fought it. I hope you know now that you are not alone. I hope you will be one of the lucky ones and get your baby – however that may come to be.

And if if you don’t, I hope you will remember that you are not alone in that, either.

Hang in there.

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2 thoughts on “Our Dream, Other People’s Reality

  1. You have perfectly summed up everything I’ve ever wanted to say about the journey of infertility. All of the ups and downs… this post captures it all and is truly beautiful. While I wish you never needed to write something like this in the first place, I’m grateful for the comfort this post brings to me and to many others I’m sure. Just wanted to say thank you.

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