Every Week is Infertility Awareness Week
Josh and I were sitting at Starbucks when this dad paused by the milk and sugar area with his toddler son. The boy caught me looking at him and he gave me a huge grin before burying his face in his father’s legs. He peeked out at me, saw that I was still looking, and dove back into the jeans. And we continued like this for a good two minutes; dad obliviously fussing with his coffee, me staring at the little boy, and the little boy grinning back at me.
I wish everyone in that Starbucks could have known what was going on in my head at that moment. But I guess it’s not socially acceptable to stand up and announce the state of my uterus to all the other coffee drinkers. You know, decorum and that shit.
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We were playing a board game; and I was asked the question what is my favourite part of my day. I knew the answer instantly, but it took me a while to start speaking because I didn’t want to cry. Tuck in is my favourite time because it’s the only time that resembles their babyhood. Breakfast no longer contains high chairs or bottles, and play time no longer consists of playmats or board books. I don’t see them for long stretches of time in the day; our afternoons are spent doing math homework or baseball games or girl scouts. But I still sing the same songs at tuck in that I’ve sang since they were in the NICU. I say the same sleep terms that we set while using Elizabeth Pantley’s No Cry Sleep Solution. And they still cradle their long bodies best they can in my arms while we rock in the glider.
It’s as close as I can get to still having a baby.
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I am not the biggest fan of awareness weeks, even though I think they are a very necessary part of our culture. I feel the same way about holidays in general; I find them useful in theory, but don’t always embrace them properly in practice. Every week is Infertility Awareness Week in my world. I don’t have weeks where I’m not aware of infertility; where it fades into the background. It is still something that I think about on a weekly (if not daily) basis. Maybe I’ll feel differently down the road and will be grateful for this yearly kick in the ass to talk about infertility. But right now, it’s still the lens through which I see the world. It is so present that it is like a third person at our table having coffee with us, someone tangible who can turn my head and point my eyes towards a toddler boy hiding behind his father’s legs.
But this week is NIAW — National Infertility Awareness Week — and we are asked to write about infertility; even if we have spent the whole year writing about infertility. Some years, it is exactly what I need. The awareness week almost serves to recharge me. And then you have years like this year where through no fault of its own, I am not feeling the energy. Though the theme is a very apt Don’t Ignore. And I can’t ignore NIAW even if my heart isn’t feeling it this year.
Because I owe it to everyone who is affected by infertility to speak about it as best I can. Because I am comfortable speaking about it (whereas I know that many people are not, and I don’t fault them for that). Because I agree with Resolve — no good can come if we’re going to ignore the problem; the problem being not just infertility itself but how the world perceives infertility and family building options.
I can’t think of a problem that has been solved by not talking about it. By not slogging through it with words. Seriously, name me one.
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Every once in a while, we have a discussion in the ALI blogosphere that touches on this idea of whether infertility is a momentary period of darkness that ends when a match is struck (or a child is born), or a disease that makes you don a new pair of spectacles that you’ll wear the rest of your life. We recently had this discussion in regards to life after infertility: Some see infertility as having an end point. Others carry infertility with them into parenthood or living child-free, even once their family is complete, or as complete as it will come. Neither, of course, is correct. And maybe your reality is somewhere between those two extremes; not something that is thought about often nor ignored; just something that is and isn’t with you, like a magic trick. Now you see it, now you don’t.
And maybe the way you think about your experience with infertility changes over time as well, becomes heavier or lighter depending on other circumstances in your life. Maybe sometimes you can ignore it, and then I disagree with this year’s NIAW topic: do ignore it; there are plenty of us still here who are still feeling it who will continue to fight the good fight. Don’t feel guilty: go where your heart needs to go.
But the opposite is true too: there is no guilt, no shame, no apologies in still having infertility affect you — whether you are in the trenches or done with family building. And then I wholeheartedly implore you to listen to that NIAW theme: don’t ignore what you feel. Your reaction to your infertility; to what is taken from you or held out of reach; to the hope you have felt as well as the despair; to the myriad of emotions that leave a residue over parts of your life completely unconnected to your uterus — your relationships with others and events that you missed — all these things are yours. You need to own them not just in the sense of having responsibility over your words and deeds, but own them because they are yours to own, almost tangible items in a jewelry box.
That hurt is real, those fears are real, that grief is yours and it is very very real. Don’t ignore them and don’t allow others to guilt you into ignoring them. Let your heart set your timetable; not someone else who doesn’t need to live your life. To experience your infertility.
29 comments
The story with the little boy made me tear up. How I long for that.
I’m in agreement with you about awareness weeks. But I tend to look at them as a way for others who may have been in the shadows to have an excuse to step out into the light. My first NIAW was last year and I did the minimum by posting on Facebook a symbol of infertility awareness and posting videos about infertility. I remember how nervous I was outting myself to the world. Now it’s second nature, as I’m more than happy to talk with anyone about my journey and my losses. But I still remember how scary it was to take that first step.
Finally, I think once we resolve that I will be somewhere in between. I hope to find peace with a decision to pursue adoption or to finally be able to conceive. But I know I will always identify as being infertile. I’ve changed too much during this journey. But you’re right, some will go to the other extreme. I honestly don’t understand it, but as long as they don’t hurt me or those I love I can respect their decision.
I love this- while I am still deep in the trenches of infertility, I know that I will always be wearing my infertility glasses because it’s become a part of me and I see the world differently because of it. For better or worse.
Perfect. I love the part about unapologetically living whatever our experience is right now, wherever we are emotionally and physically. I feel guilty not “representing” the IF community sometimes, but then I also know that when it counts, like when one of my friends posts something stupid on FB, I’m there to stand up. My “EI” (as smartness would put it) is somewhere in the middle … some days I feel like I am whole, and some days, there is just a hole. I need to make peace with that.
As an aside, I love bedtime, too. Tonight, I told my son that I feel both happy and sad about his independence … that I’m glad he can do things on his own, but sad that he doesn’t need me in that way any more. His response? “I will always need you, mom.” Sometimes his five year old mind and heart blow me away.
I still mourn my fertility. Some don’t “get” why – since we (finally) were able to get (and stay) pregnant. My infertility is still with me. I recall my desperation and eventual elation every day, but to myself. I’ll make an effort to do that a bit more publicly this week.
I agree on bedtime, as well. When we snuggle in, I drift back to when my little was a teeny little and we would fall asleep, faces inches apart. It’s very easy to superimpose the bitty baby on the big toddler and smile. 🙂
(ICLW)
Having those moments with strangers’ kids are so beautiful…they instantly light me up…one of the best I had was on a train in Singapore…this little girl was watching me, and she began to imitate everything I did, including sticking my tongue out…her mum and aunt saw that her attention was on me, and my hubby signalled me to not continue…but we had crossed the boundaries of culture and connected. She continued giggling till we got off at the next station…
#24 (Ah well, you know…)
I always carry my infertlity with me, and probably always will. It didn’t end for me when I became a mother. This morning I was reminded of the feeling I had before I became a mother, When I was heavy into the throws of treatments and depression, and despair. My daughter stayed overnight at my mom’s last night, and on the way home (15 mins after we dropped her off) My husband said ” I miss her already”. The house was so quiet when we got home without her, and while sleeping uninterrupted was blissful, I woke up this morning feeling as though part of me was missing. I could not hear her beautiful breathing over the monitor, and could peak into her room but she wasn’t there. My house was empty, lonely. QUIET. Evidence of her is all around of course, so I know it’s temporary, but the feeling that I had this morning was so eerie. It felt as though I was in a fog, waiting for her to come home, and I thought, this is what is was like before her, our lives were paused, and we were waiting.
I would love to tell people that, but I am of the mind that if people haven’t been through it, they don’t really get it. I kind of feel the same way about awareness weeks, and in my experience sometimes speaking out just gets you nowhere, because people will believe what they want to believe.
I love the experience you had with a strangers child, very sweet.
While I use my blog to talk about my infertility (I am anon), I can’t bring myself to post anything on Facebook. I don’t necessarily want to keep it hidden, but I also don’t think that it is anyone’s business what is going on. I don’t know if this feeling will change if we ever can have kids- almost like I don’t want to talk about it because I am worried about putting it out there and then never having kids. Then all of my Facebook friends will know that we have “failed.” That our bodies have failed us. Sigh….
I didn’t even start my blog until we were almost 10 years out from infertility treatment… and almost five years later, I still have lots to say on the subject. I sometimes wondered if there was something weird about me, that I am still carrying my infertility with me, thinking about it or some aspect of it every.single.day. And then I read Kym/J.W. Moxie (The Smartness)’s series on emotional infertility, and it all made so much sense (thank you, Kym).
I am kind of like KT, above, in that I am happy writing about ALI subjects on my blog for other people in ALI boat — but not so much talking about it openly with friends & family, or on Facebook. Unfortunately — as a few of you know, and as posted on today’s LFCA — over the weekend, a family member stumbled onto my blog & posted a link to one of my posts on our family FB group (!!). I am an admin there, so I took down her post & the one response it got, messaged both people to say this was my infertility blog & I was not keen to have family members reading the other content that was on there, and made my blog private for the time being. (The relative in question did apologize.) I’m hoping to resurrect it again soon, once the dust settles. Dh pointed out that maybe they SHOULD read it and learn something. I have mixed feelings on that subject, but my gut feeling is, although I don’t especially think it’s their business and I don’t WANT them finding it & reading it, it’s also not the end of the world if they do. I guess this was my own little (unwitting) contribution to infertility awareness this week. ; )
Thanks for a great post Mel. My journey was “easy” when compared to others but awareness (as this week is all about) has been bestowed upon me in a unique way, through the ups and downs of the people I care about. Whether in the trenches, holding hands of those who are, or remembering when we were, I think its important to take a moment and acknowledge our common enemy. Your post did that more effectively than an entire week of awareness would have.
I am so sorry you are going through this. I know how painful it is. My wife and I don’t have fertility issues, but after 2 she decided she was done. I really want more. I get a little choked up when I hold an infant or my wife want to get rid of some of our baby stuff. It really is a grieving process for me.
“And then you have years like this year where through no fault of its own, I am not feeling the energy.”
Gosh, I’m right there with you on this. And I’m feeling guilty about it. Think MORE about infertility this week than I do every other week of my life? I’d sooner have a lobotomy.
I carry it with me always. Sometimes IF is a louder voice than the others in my head, some days it’s just one of the dull buzzes, but it’s still there.
When rocking R to sleep last night, I thought of G, the child we lost, and paraphrasing Diana Gabaldon, that while R takes a huge part of my heart, I know that there’s a piece of my heart that fits G exactly.
I feel like that’s what IF is to me, this ache that will always be with me.
Your story about bedtime made me cry. That is something I am very much looking forward to. Reading a story, cuddling and singing my child to sleep. My Hubby and I have said goodnight the same way for 9 years and I can’t wait to pass it along to our children.
IF is constantly in my head and unfortunately NIAW landed in a time where I want it out of my head completely. I am pretty open with my IF to friends and family, but for the past few days I just don’t want to talk about it.
Thanks for this. My IVF baby will be three on friday and this year is the first I’ve ever heard of NIAW. I’ve been feeling guilty because I think I should to do my part and write a post about infertility but I just don’t want to. This week I want to focus on my daughter’s birthday and all the beauty that came after the battle. Your post was exactly what I needed to hear today. I will continue to write and talk about infertility but this week I will follow your advice and go where my heart needs to go.
I am pretty open to my IF, when people ask about it. Now, I blog about it with no problem, but to talk about it face to face, well, that just seems so much more personal. So, if someone asks about it, then I’ll answer. But to just bring the subject up on my own, not so much. Although I did at work the other day (I work at an Emergency Dept) and it was received with uncomfortable silence. And that, I reminded myself, is why I don’t bring it up more often.
I, too, long for newborn and infancy and cherish the times when I am ‘needed’ as my son’s mommy. As I type this, he is in his room with a friend from school, singing songs, playing with Legos and iPlay Build-a-Road and it melts my heart. Even though we have had friends over with their parents since my son was an infant, this is his first honest to goodness after school friend over without the friend’s parent (my son is 5 and his friend will soon be 5). If not for the glorious science of ART, this scene would not be playing out in my life, nor would the weeks old pregnancy I am now carrying.
I owe my life’s joy to infertility and I think of the countless friends, irl and url, and strangers that are struggling each and every day to be able to have their own firsts with their child.
May we all stand strong together during this week and every week until each of us finds our way to the family we are meant to have or makes peace with the alternate paths that may present themselves.
I wanted to comment, because I try not to think about being infertile. I’m too hurt, I’m pissed off, I want to be happy yet I can’t and won’t be fully happy in my life until i have a child of my own. In my mind I’m 29-I have time I tell myself, it will happen after we buy a house, when we can afford treatments. But I’m not 29, I’m 35 and time means age. 3 unsuccessful IUI’s and officially being called infertile by my RE, I’m an IVF candidate. A very expensive candidate, where I may not be able to handle the hormones due to other medical issues. I feel lost and deflated. I feel this everytime i see a mommy and her baby. A father and his child at the park. a pregnant woman waddling down the aisle in our supermarket. But I don’t want to feel it, because I feel 29 I have to keep on going. I’ll allow myself to cry and feel the agony, but i have to pick myself right back up and remind myself that I’m ok. I feel this on a daily, weekly, monthly and yearly basis. Thanks for the week, Resolve I hope people learn about this, because it’s making a lot of women believe less in themselves when they need to realize that they are some of the strongest women on the planet. lots of love, Jacky
You put into words what I was thinking: When am I not aware of my infertility? I haven’t even addressed the topic of NIAW this year on my blog, and I’m not sure I will, mostly because it’s all fellow infertiles that read it. I’m not ready to publicly declare my fertility status on facebook or other social media so it is difficult to share awareness.
I’m not good at sharing in general. I’ll probably share something of someone else’s on FB, though.
I do love playing with the little ones – even when it’s making me crave another one of my own. I’ve finally managed to reach my daughter on the topic, though. Once she figured out the whole sharing thing that she doesn’t have to do, she now says “I would like a sister or brother, but I wouldn’t like sharing, so it’s OK that I don’t have one.”
I am a blogger with a cause this week. While I don’t blog about infertility often I did decide to dedicate this week to it. In the chaos of life, one week does seem to remind me where I’ve been and how far I’ve come and how far I’d still like to go. Trite I know. Since this is one of my favorite blogs just wanted to say thanks for being you!
You are awesome! Thank you for representing! 🙂
I had the same thought, too. When do I not think about infertility? But I do think it’s important to make others aware that we are hurting and that we’re suffering from a medical condition. And that we just want our families, like everybody else.
Yes, every day is infertility awareness day. For me I find increasingly though that even when I’m aware of it, I don’t feel the pain anymore (well, only occasionally), which is nice.
And yes, the community is guilting me into thinking think about blogging about infertility – this week and this week only – on my everyday blog, as it reaches more fertiles than my infertility blog.
Bedtime is very hard for me right now. I also sing my kids the lullabies from their babyhood and cuddle them. When they curl up in their beds with their lovies they look like their baby selves and smell like baby shampoo. I am wiping tears away just about every night when I leave their rooms nowadays.
Infertility will never leave me. It’s been about 12 years of my life now. Losing infertility would be like losing my 20’s. It’s a whole decade of my life.
I linked to this post here: http://mylifeafterloss.blogspot.com/2012/04/scar-remains.html
Excellent by the way. Just excellent.
This entire post was so powerful for me; most especially the final two paragraphs. We are done with our family building, and I have struggled greatly with this sense that everyone else seems to think I should just “get over it” now that we have our child. I have found this “infertility after baby” phase to be far more lonely feeling than I ever did while we were going through treatments. Thank you for your perspective. It’s good, sometimes, to just have another person say “It’s okay.”
I don’t think IF is a phase you experience. That pain will always stay with you even if you are successful in building a family. I created a video and a blog post for NIAW. It was really scary to put out there but I’ve gotten positive response and far more views than I ever expected. The video’s on my blog but here’s the separate youtube link if you don’t want to read my “don’t ignore…” post. http://youtu.be/Yn440_UeOmc
Mel, this is why I love your blog. This is what got me fired up in this community. This is just a wonderful, wonderful post.
And the shy game of peekaboo? I’ve done that too. What gets me more now is when I catch Larry doing it, when we’re out and about. G-d, I just want to make him a dad already.
Even though I’m side on this side, this seemingly endless side, I know that when (not if!) I become a parent, it’s not going to magically disappear. In one sense, there’s the very physical implications of life with POF: heart disease, bone loss, stroke. But this infertility piece? It’s marked me, scarred me. And that’s not a bad thing either – it’s just a part of me now.
And it’s things like NIAW that remind me of those 7.3 million who share that same mark, so I will write, advocate and do what I need to do to help them. And to let others know what this experience is like.
Gorgeous post, Mel. Thank you.
I love your post.