You can’t do this alone.

The other day I was in the pharmacy room at work when my favorite co-worker burst through the door, wrapped her arms around me and exclaimed “So how’s the embryo?!” As I burst out laughing I couldn’t help but think about how far I’ve come on this journey…

A year ago, when I first found out Dan and I were going to have to do IVF I made him promise he wouldn’t tell anyone. We told our parents and our siblings, but that was it. I remember thinking ‘this is our journey and I don’t need anyone else’s opinions or judgement as we go through it.’ The idea of keeping this to ourselves seemed noble (I argued it was better if I didn’t share with people who would worry about me), but it is also completely impractical. When you’re going through IVF it is the biggest part of your life (honestly sometimes if feels as if it is your entire life), it becomes a burden not sharing that with the people around you.

As time passed and this infertility journey began to control our lives I struggled with my decision to stay silent. Slowly, I began distancing myself from the majority of people in my life. I stopped going out with girlfriends, I skipped family parties and I declined invitations to have dinner with co-workers after long shifts. It was exhausting to publicly pretend I was living this perfect life, so instead I avoided the people who could (and eventually would) support me the most.

But, as almost every relationship in my life started to suffer (the few I shared our struggles with felt the burden of being the only people I turned to while those I chose to leave in the dark felt the wrath of my emotions, but had no understanding as to why) I decided enough was enough. If I was going to survive this (and still have a husband who loved me and sisters who wanted to be around me) I needed to start talking.

I started off by telling a few friends and co-workers, then I told my grandmother, after almost a year I told my great aunts, and now I’m here, telling anyone who can read.

And you know what? Nothing bad happened. People didn’t turn in disgust when I told them we were doing IVF. No one forced their opinions or beliefs upon us. I did not get the sense that everyone was ‘walking on eggshells’ around me because they pitied us. The primary reaction we received was one of acceptance and love.

It’s important to let people in on what’s happening with you. It’s important to build a network of individuals you can turn to when you need to cry, laugh or be reminded that you will survive this. I have one friend with whom I have an unspoken rule: I can call her anytime someone we went to high school with announces their pregnancy (even if it’s the only time I call all month) and she will always answer and find a way to make me laugh. I have a co-worker who unlocks our manager’s office for me every single time I need to take a phone call privately and she has never once asked for details when I walk out red-eyed and with tear stained cheeks. My older sister patiently reads every one of these posts before I make them public, even though I know reading these brings up mixed emotions for her. (She’s pregnant and I’m not, it’s a road we’re both still trying to navigate). You need people who support you.

I thought it would annoy me to talk about this with people who could not relate. How was my mother, who never struggled to conceive any of her four children, supposed to comfort me? How could the friend who has always said she would rather be the ‘cool aunt’ than a mom or the friend who is so far away from settling down with one guy, let alone imagine children, sympathize with me? Easy. Because they love me. I do not need to surround myself with a group of women who understand this process (although having a few infertility friends is nice) it’s just good to feel supported and cared for.

So, find some friends. Share your troubles (even if they’re nothing like mine). Tell your story to as many or as few people as you would like. But, do not drown yourself in your own sorrows by failing to realize there are more people than you could ever imagine waiting to toss you a life vest. (And I’ll be honest: on a bad day when I’m beyond hormonal and feeling overwhelmed it’s nice to have a friend give me a hug and ask about our embryo…)

WordsWednesday

“Life cracks us into unrecognizable shards of former incarnations. Slivers of our hurt, and our pain, and our shame nestle next to fragments of our truths, our divinity, our fierce reclamation of power. It is in this very brokenness that allows us to knit together, kaleidoscope style. And we spin and shift and turn to the light until we appear brilliant, lit from within. Suddenly we are revealed; unexpected beauty born directly from brokenness. We have to be willing to break in order to become.”- Jeanette Leblanc

“You’re just not the person I met a year ago”

Sometimes my job is hard…truthfully most of the time my job is hard. I spend 12 hours almost completely on my feet, in the ICU nurses do the majority of patient care (turning, bathing, getting patients out of bed) and hours of charting. It’s not uncommon to look up at the clock and realize I’m eight hours into a shift and haven’t had time to sit-down, go to the bathroom or take a drink of water. I love my job, I feel lucky to be able to do the work I do, but it’s difficult. Last Wednesday was a particularly difficult day. I was working my 3rd of 4 shifts in a row. We were understaffed, I had to switch assignments halfway through the day (any nurse knows this is an irritating thing) and tensions were high in the unit as we cared for one patient who was doing very poorly. It was 7:30 at night, I was tired, hungry, hormonal and more than ready to go home when a co-worker stopped me and asked if we could talk quickly. Truthfully, I wanted to say no, but instead I said yes and followed her into an empty supply room.

She started the conversation thanking me for helping her with a difficult patient, complementing me on a decision I had made and praising my persistence with a doctor who was not listening to another nurse (3 compliments in a row and I knew I was in for it, this conversation was going to go downhill fast). And then she said why she really wanted to talk “But what did I do to offend you, because you have not been the same to me lately.” I do not do well with confrontation so as she listed off the reasons she felt I was being cold to her and referenced a specific occasion I seemed annoyed to have her around I felt the hives popping out on my chest and my cheeks turning red and then she said “you’re just not the person I met a year ago” and I broke down crying. And I do not mean a single tear trickled down my cheek, I mean I whole body sobbed/ugly cried (hormonal hysterics if you will). I composed myself enough to apologize to her for offending/upsetting her, we agreed we both respected one another as professionals and liked one another as people, promised to not speak of my ugly crying and went our separate ways. I do not know what she did when she walked out of the hospital, but what I did was cry the entire car ride home to my mother and then my best friend on the phone, cried some more in the shower, cried as I texted my older sister and then cried myself to sleep.

Truthfully, if we had this conversation a year ago (even six months ago) I probably would have laughed it off. I honestly do not think I’ve been particularly cold to this nurse, but I would have apologized that she felt I had not been my warm self, hugged her and let it go. I know when we started the conversation that is exactly how she thought the conversation was going to go.

What made me cry for four hours was the phrase “You’re just not the person I met a year ago.” Because I know that I’m not. A year ago I was someone else entirely…a year ago I was still “Gold dress Meghan.” This time last year ago I had just found out I was a carrier for SMA. We had no idea about Dan’s carrier status, I still believed we would be fine. I still believed we could conceive naturally. A year ago I would lose track of time creating my future nursery on Pinterest, I would spend hours researching top baby gear (a sock that monitors your infants oxygen saturation while their sleeping?! Genius!) I would scribble possible baby names in a notebook (always after writing Dan and Meghan, I needed to see how they would look listed on a card!). A year ago I ordered my bridesmaids dress for my sister’s wedding a size up because I was that sure I would be pregnant at her wedding. This co-worker was right, I am not the same person I was… and sometimes I do not like the version of myself I am today.

Recognizing the negative changes I see in myself is not nearly as enjoyable as describing the positive changes I’ve seen in myself. Over the past year I have become a little harder (this is honestly the adjective I feel is most appropriate). For all the growth I’ve seen in myself, for the strength I’ve discovered, the compassion I’ve found, I know I have not simply changed for the better. (I’m not Glinda, this isn’t WICKED.)

I find I can get ugly quicker than before. (Sadly, Dan and my mother can attest to this the most, we’re always meanest to the people we love). Sometimes I hear an insult coming out of my mouth and think ‘did I really just say that?!’ I used to adore being around children, plop me in a room of toddlers and I was your designated babysitter. This November my nephew turned 1 and while all his little daycare friends and their parents crawled around the family room playing my husband and I hung-out in the kitchen, drinking wine with the other childless couples, wondering how in the world so much noise could come from such tiny humans and I thought ‘is this who I am now?’ Last month Dan and I went on vacation and our resort was over-run with families (it was a Disney Beach resort, what did I expect!) But as I laughed along with the crowd as the children had a limbo contest, inside I was thinking ‘Enough already. You smug parents with your adorable children. I’m here to relax.’ And I hated myself for it. I listen as family members talk about the exciting things happening in their lives (buying a new home, having a baby, re-locating across the country) and I fight the urge to breakdown crying, not because I’m unhappy for them, but because it’s really hard to feel as if everyone else is moving forward and I’m just sitting here, waiting for the go-ahead to take our chances with our one warrior embryo. It’s hard to not be disappointed at times with the hand life dealt us.  It’s even more disappointing to listen as someone else tells me they’ve noticed the change.

So I’ve decided to make more of an effort to bring a little “Gold Dress Meghan” back into my life. (Even though I said I didn’t like her…I think she had some good traits). I’m not going to start shopping for maternity clothes or pinning nursery ideas, that’s too hard, but I need to watch myself. I do not want to become the version of myself who hates noisy kids and crowded pools. I do not want to become the version of myself who resents my loved ones for moving on with their lives. I do not want to become the version of myself who is so hurt and disappointed by my own struggles I fail to recognize how my behavior affects people around me. So I’ll take “Gold Dress Meghan’s” optimism, her generosity when it comes to giving out gifts and complements and unrelenting hope for the future. And I’ll mix that with “IVF Meghan’s” strength, self-acceptance, compassion and level-headedness. Maybe I won’t be so offended by not being the person I was a year ago if I can focus on making the person I am today better.

 

And now we’re here

I read a book a few weeks ago called “What Alice Forgot” about a woman who falls down at the gym and forgets ten years of her life. (I thought it was great, my mother found if very sad, I recommend you read it.) But anyway, Alice has a sister, Elizabeth, who for the past 10 years has struggled to have a child… obviously Elizabeth was my favorite character. At one point she is talking about her miscarriage and she says “Just because you’re pregnant doesn’t mean you get a baby.” I think about those words often lately, a year ago Dan and I sat in a two hour IVF education session, we listened to success rates and statistics, but I really wish someone had said “Oh and guys just so you know: just because you do IVF doesn’t mean you get a baby.”

A year ago Dan and I made a decision to pursue IVF with PGD because we wanted to bring healthy children into the world. We decided to accept the physical, financial and emotional burdens that go along with in-vitro because we assumed those were nothing compared to the struggle of raising a child with SMA. We made a decision we were proud of and felt confident in.

And now we are here.

Here is a very interesting place. After waiting over eight months for our PGD to be finalized (it’s a lot of information, for another post) I finally got the go ahead to start hormones. Now some people share horror stories about hormones, I’ve talked to women who said they didn’t affect them at all, I was kind of in the middle. The injections did not bother me (nurse perk!) but after day 6 I was going to our fertility clinic daily for bloodwork and ultrasounds and by day 10 I was abnormally bloated, beyond tired and basically a ticking time-bomb of emotion. But it was all bearable.

The egg retrieval was on a Sunday. It was a dream, a little Propofol, a little Toradol, and a lot of sleep. I went back to work the next day and felt fine… that is until my doctor’s office called me Monday evening and the nurse exclaimed “Meghan! You have 13 fertilized embryos!” I cannot remember a time in my life recently when I have been so happy. In my mind 13 embryos was basically the IVF jackpot… better yet, the IVF powerball!

I celebrated those 13 embryos as if they were 13 tiny rewards for all we had been through over the past year. I met up with my mom and some friends and one of the ladies jokingly yelled “You get an embryo, and you get an embryo” like she was Oprah giving away cars. Dan and I sat at our kitchen table and talked about having 4 children (like I’ve always wanted) as if it could truly be a possibility. I looked back into the notebook where I keep a list of baby names and thought “I may need a few of you!” 13 embryos!

My fertility clinic called me the following Saturday as I sat on the couch with Dan watching Luther on Netflix (this is how we spend most weekends). I cannot remember the entire conversation, but it was something along the lines of “So we sent the DNA on 4 embryos for PGD testing, the other 9 embryos did not mature.” Um what?! No lady, this is Meghan. I had 13 embryos. What do you mean I have 4? It was never truly explained to me that because of the PGD the embryologist needs the embryos to mature further than standard IVF in order to extract the DNA for testing and that many fail to do so. I didn’t know that when I celebrated 13 embryos, but I know that now.

I waited 6 agonizing weeks for the results of our 4 embryos. And then my fertility nurse called and standing in an empty patient room at work I listened as she told me we had one healthy, carrier embryo. Two of the embryos had SMA and the other had degraded DNA (so they could not tell me what the SMA status was) and they would not safely tell us to use that embryo.

So now we’re here. With one embryo.

Do not get me wrong. One is better than none. One is a possibility. One could be everything I’ve ever dreamed of. I know I should be on my knees thanking any higher power that exists for this one embryo and I have. I am so overwhelming thankful we have this one embryo. But having one embryo also means we only have one shot at this working, statistically this embryo has about a 50% chance of resulting in a live birth. Seems like a lot of pressure to put on one little embryo.

I know many people will not understand why I mourn the loss of those 12 embryos, to them they were just cells, a science experiment, ‘they weren’t babies’. You’re right, they were not. But they were promises, they were our hopes and our dreams. They were the possibility of having little blonde toddlers in the backseat fighting over what Disney song we should listen to. They were a Christmas card I’ve always imagined with angelic faces smiling at you on the front and their ‘true selves’ pulling each other’s hair and pinching on the back. (‘Gold dress Meghan’ spent a lot of time thinking about Christmas cards). They were after school chaos, built in best friends and family car trips in an SUV bursting with beach gear. I know they were just cells, I understand that, but I allowed myself to dream of what those embryos could mean in our life, so I have to allow myself to mourn what they are not.

And now we’re here. Planning to transfer our one embryo. Praying and wishing this transfer works and we will be blessed with one, healthy child who I promise to spend the rest of my life being eternally grateful for. But I also have to keep reminding myself that IVF does not mean we get a baby. I’m walking a fine line of dreaming of all the possibilities this embryo offers, but also accepting that this journey may not be taking the path we expected and being okay with that.

Like I said: now we’re here and here is a very interesting place.

WordsWednesday

 

“The English language lacks the words to mourn an absence. For the loss of a parent, grandparent, spouse, child or friend we have all manner of words and phrases, some helpful, some not. Still we are conditioned to say something, even if it is only “I’m sorry for your loss.” But for an absence, for someone who was never there at all, we are wordless to capture that particular emptiness. For those who deeply want children and are denied them, those missing babies hover like silent ephemeral shadows over their lives. Who can describe the feel of a tiny hand that is never held?” Laura Bush

“You’re so lucky”

When we first met our fertility doctor I liked him immediately: he had kind eyes, a messy desk and wore scrubs to the office; he seemed like the type of doctor who was good at his job, but didn’t take himself too seriously. Working as a nurse I meet a lot of physicians and I’ve become pretty good at figuring out what type of doctor they’re going to be rather quickly- the eyes, the desk and the scrubs were signs he and I were going to get along just fine. That is until he calmly stated “You two are so lucky you’re carriers for SMA.” And I instantly thought ‘Wrong call Meghan, this guys a moron.’

Obviously Dan and I both feel tremendously blessed and lucky we discovered our SMA carrier status prior to conceiving, but lucky to be carriers, I wasn’t so sure about that. That is until my doctor explained after reviewing my medical history and both of our physical exams he could say with almost 100% certainty Dan and I would never have been able to conceive naturally. Without going into medical details (let’s be honest, I’ve shared enough) he told us, in his professional opinion, that we would always have had to do in-vitro.

What he meant by his comment is that our carrier status saved us from what would have probably been years of trying, and failing, to conceive.

Dan and I had been trying naturally for 10 months prior to me meeting with my physician and every month that passed without a positive pregnancy test was disappointing for me. (Full disclosure: I took a pregnancy test 7 of those 10 months, if my period was 2 days late I was convinced I was pregnant.) I remember vividly a trip to Target where I anxiously called my older sister from the parking lot, I was 100% sure I was pregnant and I was worried because a few weeks prior I had a little too much to drink at a family party. I was hysterical because I was sure I foolishly harmed the hypothetical baby growing inside of me. She calmed me down as I walked through the store telling me everything was going to be fine and then cheered me up when, once again, the test was negative. It seems irrational now to think I had actually been in tears because I was convinced I was already failing as a mother, but wanting something so badly and failing to have it makes you a little neurotic.

I think I speak for a lot of women when I say there is nothing more disappointing than wanting to conceive and not being able to do so. Every negative pregnancy test feels like a personal failure. Every single pregnant woman you see feels like the enemy. Where I work they play a lullaby through the entire hospital when a baby is born, those 15 seconds of music feel like a personal taunt. You become so obsessed that it feels like you cannot go anywhere without seeing someone who’s pregnant and another person asking when you’re going to start a family. (One thing you never notice is someone else walking around with the same sad eyes and bloated belly of infertility.)

After receiving our diagnosis as SMA carriers we still had to wait almost a year to begin our first IVF cycle, mostly due to the complexity of PGD testing. To date we have been unable to do an embryo transfer (that’s for another post). So this has been two years of my life and it feels as if I been struggling with infertility forever.  Now I understand what my messy, scrub wearing physician meant: our carrier status saved us a lot of time, stress, money and what would have inevitably probably been heartbreak and disappointment.

Now here is something I need to say: if you’re someone who was not as lucky, if you’re someone who suffered years of failed attempts at conception whether naturally, or with interventions like Clomid or IUI’s I cannot speak to your pain. My heart hurts for you, but I have no idea what that suffering feels like. Our carrier status gave us a quick answer and sure it was not the ideal answer, but I think any answer is better than the unknown. I’ve spoken to other patients in the waiting room at the fertility clinic, I’ve nodded sympathetically as they shared their horror stories of the years they’ve spent, the medications they’ve tried and the countless number of failed pregnancy tests they took before starting in-vitro, but I will never understand their pain. If you’re one of those people, I consider you a warrior and you have my utmost respect and love.

So now, I (mostly) agree with our physician: Dan and I are lucky to be carriers of SMA. Being carriers put us on the IVF fast-track, and although it caused its own share of disappointments, it’s given us a plan, and being the Type-A person I am, I appreciate a clear plan. I am thankful we had answers after less than a year of trying to conceive. So in a weird way (and on a bad day) it’s helpful to remind myself that maybe we are “So lucky”.

It’s my party and I’ll cry if I want to

Today is my 29th birthday…to be honest I’ve never been a big fan of birthdays, too much hype over one day. (I’m also not a big fan of New Year’s). But this year hit me hard. I woke up this morning and kept thinking…this is not where I imagined I would be at 29. So I did what any mature, 29 year old does: I threw myself a pity party. I sat down on my bedroom floor and cried…I cried for everything I did not have in my life (a baby) and a few things I did (specifically hormones: I’m back on Lupron injections and I really hate these things). And truthfully, I planned on going through my day feeling sorry for myself…The phrase “it’s my party and I’ll cry if I want to” was going to be my birthday anthem.

And then my phone started buzzing. Text messages from old and new friends wishing me happiness. My siblings posting sweet messages on Instagram. My best friend leaving me a voicemail filled with so much love and kindness I cried happy tears. And I realized I need to get a grip.

Yes, my life is not where I thought it would be. Yes, I threw away my birth control exactly 2 years ago because Dan and I decided 27 was going to be our year. Yes, it stinks that I do not have a child. And it is completely okay that I cried my eyes out this morning. But I have a husband who knows the way to my heart is coconut mounds ice cream and has a pint waiting for me in the freezer. I have a ridiculous number of friends who took the time out of their busy days to reach out to me. I have a healthy, 78 year old grandmother who took me out to lunch and told me “nothing bad will happen in 2016.” I have a tan because I just spent 4 days in Florida with my parents.  (If you’re thinking a tan isn’t really something to be thankful for I’ll imagine you’ve never been of fair complexion and living in New England). I do not have everything I thought I was going to have, but I need to take the time to recognize and be thankful for what I do have.

So today I threw myself a pity party. It was a good one too, filled with lots of tears, chips & salsa (so what if it was 9 am, salsa is good any time of the day!) and genuine sadness over the gifts I do not have in my life. And then I left said pity party and decided to be thankful for all the gifts I do have: an incredibly kind, loving (and I must admit, ridiculously handsome when he has a suntan) husband, amazingly thoughtful, genuine friends and the most supportive family in the universe. So a little advice (because I’m 29 now, which makes me significantly smarter): feel free to throw yourself a pity party, but take the time to enjoy the real party (your amazing life).

 

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25 years later and this is still exactly how I look at cake!