WordsWednesday

A fun fact: I love words (other peoples, not my own). In high school I changed my AIM profile daily to some new quote I found online or in a Dashboard Confessional song. (Feel free to judge the fact I just referenced AIM and Dashboard Confessional). A few years ago I started writing down any quote I read in a book (or found online) that spoke to me in some way. (Dan affectionately calls the notebook “my words”). It amazes me that someone can write a few lines that perfectly express how I feel, but that I lack the ability to speak. In honor of my love for words I thought I’d start ‘WordsWednesday’ where I post a quote that has helped me survive this journey (or just life in general, not everything has to be about infertility)… because lets me honest these quotes are far more eloquent than I could ever be.

“No matter what happens, no matter how far you seem to be away from where you want to be, never stop believing that you will somehow make it. Have an unrelenting belief that things will work out, that the long road has a purpose, that the things that you desire may not happen today, but they will happen. Continue to persist and persevere.” –Brad Gast

 

“It cannot paralyze you”

If after my last post you’re thinking I’m a little too positive about this whole situation, I’m going to let you in on a secret, I cry in the shower at least twice a week (and twice means I’m having a particularly good week). See regardless of how positive I spin this, as much as I can appreciate the perspective I’ve gained and the growth I’ve shown, not having a child when all you want to have is a child is still heartbreaking. Logging onto Facebook and Instagram and daily seeing a new pregnancy announcement or gender reveal never gets easier. Being surrounded by co-workers sharing their morning sickness remedies and growing baby bumps has not become something that doesn’t make my heart physically ache. Sitting at a baby shower is still actual torture for me. I have chosen not to live in the dark hole infertility has created in my life, but that does not mean I don’t allow myself to feel all the negative emotions that have come with this.

When I first started working in the hospital as a nursing assistant a patient who had been in our ICU for a few weeks cardiac arrested and we were unable to save her. I remember standing in the room as the doctor pronounced her time of death, it felt surreal that this person who I  had spent countless hours caring for, whose family I knew on a first name basis, who the week before had started to improve, was now gone. It was the first time I saw death happen and it was a little too real and close for me to handle. The doctor must have sensed my emotions because he asked me to step outside with him and he said something that I will never forget “If you’re ever doing this job and death doesn’t affect you, it’s time to walk away. If you’re ever doing this job and death overwhelms you to the point you can’t do the job, it’s time to walk away. This is supposed to upset you, but it cannot paralyze you.”

Those words have dictated my professional practice for the past seven years, but they have also become my own personal philosophy as I go through this process. I don’t ever want to become immune to feeling the disappointment and anger that comes with this, but I recognize I cannot crawl into my bed, hide out and completely stop living life. So I made a decision to allow myself to acknowledge every emotion I feel during this, but I cannot allow those emotions to dictate my life. On bad days I cry in the shower, I cancel plans with girlfriends, I let myself feel disappointed, but only for one day. The next day I force myself to put on a bright colored outfit, I fix my hair and make-up and I go out on a date with my husband.  This works for me.

I’m not the type of person who can fake my emotions, if something is too much for me (like attending a baby shower or helping my mother shop for maternity clothes for my sister) I do not do it. The best thing you can do during this time is put yourself first, be a little selfish, make decisions that are the best for you even if you know this will disappoint others, but do not become so self-involved you cannot see past your own hurt. Find the balance between allowing yourself to grieve for all the loss you’re feeling, but be strong enough to not allow the grief to overwhelm you. In the words of one kind-hearted physician “It cannot paralyze you.”

The bright side of infertility?

So I’m going to fast forward a year here. Dan and I received our diagnosis as carriers for SMA in March of 2015, I’ve started writing about it now because it took me this long to come to terms with my new life. I have privately journaled over the past year, I have cried more tears than I thought I was capable of, I have let go of relationships that did not inspire me and I have grown closer to individuals in my life who have amazed me with their kindness and genuine love. Probably the greatest growth I have seen is within myself. Full disclosure: I have never considered myself a particularly strong person. When people teased me in high school, my older sister fought my battles. When a stranger was rude to me for no apparent reason, I kept my mouth shut. If friends treated me poorly, I accepted it as partially my own doing and forgave first. I am someone who struggles with self-worth, I spent a great deal of time in my youth defining myself based on what other people thought of me. Depending on who I was around I would shift myself into the version I thought they would most enjoy. This is a terrible trait and one I have spent an enormous amount of time trying to improve. But over the past year, as I was forced daily to face this new life in front of me I found myself evolving into this better version of myself.

The amazing thing about this process, while defined by heartbreak and disappointment, is I have also had the opportunity to really gain perspective in life. It’s hard to feel too badly for myself that my hips are a little too wide while talking to the woman sitting next to me at the fertility clinic about how after five failed IVF cycles her husband says this has to be the last one. When a rude co-workers comments that I look especially tired this morning (something that previously would have made me feel terrible about myself, I was vain, forgive me) I just smile and continue on, she doesn’t deserve to know I spent the night dealing with Follistim induced insomnia (I SWEAR this is a real thing!) When friends drop plans at the last minute or fail to return any of my phone calls I decide they’re not worth the effort either and focus on the supportive close-knit group of people who are present in my life. I walk downstairs to a sink filled with dirty dishes and although I want to scream at my husband (sometimes I still do, because leaving dishes in the sink is a really annoying thing Dan does) I also have to recognize that this is the man who has held my hand at every doctor’s appointment, who has rubbed my feet when I’m exhausted, who has forgiven me when the hormones make me a crazy person and who has supported me through every single moment…dishes in the sink are trivial and I cannot waste my energy of such things when there are so many important other aspects of my life.

My older sister and I are obsessed with a book called “The Book of Bright Ideas”. It’s a short book, I think it would probably be classified as a young adult read, but we read it at a time in our lives when we needed to hear the words the characters spoke and it has stayed with us through our lives. There is a line in it that reads “for all those who longed to find a best friend and found it in themselves.” I think about those words often because that is what I think has happened over the past year. Before, when I was constantly defining my own self-worth based on others opinions of myself it was because I failed to recognize my own strengths as an individual, I did not recognize what was “good” in me. But after all of this, after letting go of dreams, after gaining perspective, after genuinely surprising myself with my ability to simply keep going…I admit I do feel slightly thankful for what has happened in my life. I think you can only be your ‘own best friend’ if you genuinely like yourself, and for the first time in my life I truly do. I have grown into a much better version of myself and I am optimistic this version of myself is going to be a much better mother than “gold dress Meghan” ever would have been.

The long and short of how we ended up here

When I was in second grade we had to do an “All about Me” book and under “What do you want to be when you grow up?” I wrote “A mom.” I remember my teacher suggesting I dream a little bigger (which annoyed me tremendously), but I obliged and wrote in “or a Dallas Cowboys Cheerleader” (I’ll assume that teacher wishes she had stuck with the whole mom thing). But, needless to say my entire life I dreamed of becoming a mother. Sure, I forgot the whole cheerleader thing and instead became a registered nurse, but the mom thing was always my ultimate goal.

When I met my now husband Dan I was eighteen, a freshman in college, excited about the new friends I was making and completely infatuated with the blonde hair, blue eyed quiet guy who played guitar and had a cartoon of Dave Matthews Band as his desktop screensaver. Over the next eight years Dan and I both grew into better versions of ourselves, sometimes together and sometimes apart. I worked my way through nursing school as a CNA, graduated and accepted a job as a registered nurse in the Intensive Care Unit of the community hospital I worked in. Dan finished his degree in accounting, started working as a tax accountant and earned a Master’s degree in taxation. We were married on a perfectly sunny day in September surrounded by the people we loved most in the world, spent 13 days being the happiest newlyweds in Greece, and then settled into our life as husband and wife.

Over the first year of our marriage Dan and I learned a lot about ourselves as individuals and as a couple. We learned I should always do the laundry and Dan should always wash the floors. We discovered we prefer going to the grocery store together, we’d rather stay in and order pizza on most weekends than go out and we both have a competitive side which comes out most often while watching Jeopardy. We found a great condo we loved, we enjoyed weekends away, we felt really confident in our life as a couple and we felt ready to bring a child into the world.

Dan was not as motivated to start our family as I was so we didn’t put too much pressure on ourselves the first year, I stopped taking birth control (which I had been on since I was 19 and was diagnosed with endometriosis) and we took our chances. But after seven months off birth control and one ridiculously expensive anniversary weekend away, we both agreed it was time to start really trying for Baby L. (A part of me did wonder why I hadn’t gotten pregnant, but I tried very hard to silence those voices in the back of my head saying there was a problem, mostly because I did not want to face that nagging feeling that something just didn’t feel right.)

So over the next few months Dan and I tried for a baby and I mentioned to my OB-GYN at my annual appointment in December we were actively trying to start our family. My doctor encouraged me start religiously using the ovulation kits I was using and to try to “pay more attention to my body.” I was walking out of the exam room when my physician stopped me in the hallway and casually asked if I was interested in getting some genetic screening done, something many people wait to do until after their pregnant, “just to be prepared, seeing you’re not pregnant yet.” I agreed, had my blood drawn and was on my way.

I should confess I did not think much about this testing, it was a formality in my mind. Dan and I had no family history of any genetic illness, I was only 27 years old and relatively healthy, this testing was a simply a box checked on our way to baby. That is until three weeks later when the doctor’s nurse called me and told me I tested as a carrier for Spinal Muscular Atrophy (SMA) and Dan should get tested. I was shocked by this and even though I told myself not to I found myself googling this genetic illness I had never heard of. What I found scared me: SMA is the leading cause of genetic death in children before the age of 2, 1 in 40 individuals is a carrier for the mutation, there is no treatment and no cure for SMA. And I, was a carrier.

I’ll fast-forward the three stressful weeks that passed between my results and Dan’s bloodwork, to a Monday in March when my doctor called me at 7:30 in the evening while I was finishing report at work, to a moment where I stood in the corner of a hallway in the intensive care unit and listened as my doctor explained my handsome, blonde hair, blue eyed, not quiet anymore husband was also a carrier for SMA and encouraged us to stop trying to conceive a baby naturally.

I’ve heard people say your life can change in an instant and I’m not being overly dramatic when I say ours did. I think one of the hardest thing I have ever done in my life was sit Dan down that evening and talk to him about our diagnosis. I felt an overwhelming sense of loss for something I never even had.

See my entire life I imagined my pregnancy a certain way: it involved joyfully telling my husband we were having a baby, I would create handwritten cards which on the outside would have all the names I’ve called my parents, brothers, sisters, in-laws, and on the inside have what our future child would call them….grandma, poppy, Auntie. (Another example “gold dress Meghan” she thought about things like this.) I imagined creating the nursery, I pictured the joy I would feel as a life grew inside me and the excitement Dan and I would feel over the nine months we would have happily preparing for our child. It took one instant standing in that hallway for me to lose those dreams and that is a loss that is difficult to describe.

The medical fact is SMA is a devastating disease. Dan and I have a 25% chance of having a child with SMA (Dan and I are both the third of four children, statistically if we were our parents us or one of our siblings would have SMA). If we do have a child with SMA they have a 60% chance of having SMA I which gives them an almost 100% chance of dying before the age of two. Children with SMA I and II very rarely live until adolescence, those that do have severe disabilities as SMA attacks the motor nerve cells in the spine taking away the ability to walk, talk, eat, and breath. While the length of life and quality of life varies based on type (SMA 0, I, II, III, or IV) there is currently no treatment and no cure.

Dan and I could take our chances and conceive naturally, but the testing to determine if our child has SMA while pregnant runs a 1 in 100 chance of miscarriage, would be available after I was already 3 months into our pregnancy and only tells us if the child has SMA and not which type. I do not know how someone makes a decision with this information. The testing alone could kill a healthy baby. The testing could not tell us if the child had SMA I and would have a short life filled with suffering or SMA III which means a longer life, but unknown disabilities. There is no way I can prepare myself for the horror of possibly feeling a child kick inside of me (I’ve never been pregnant, I have no idea how this feels) and being asked if I want to continue with my pregnancy. I try, but I cannot conceive how anyone makes these decisions. Dan and I are lucky though because we can conceivably never have to make these choices.

Science is an amazing thing and by using invitro fertilization and pre-genetic diagnosis (IVF with PGD) Dan and I can have healthy children. So after meeting with two genetic counselors, after talking over our options in detail with my OB-GYN, after choosing a fertility specialist who was well versed in IVF and PGD Dan and I decided the best decision we could make for ourselves and our future children would be IVF with PGD.

Let me take a moment to say something here. We made a decision we felt was best for us. I by no means think we made the only right decision. I have family members who upon hearing of our diagnosis said they would have ‘just not had children’, some told me they would have ‘taken their chances’, and my sister told me she would have adopted a child from Africa. Maybe those choices would have been the best for them. Maybe if they were actually in the position Dan and I are in they would have decided something else. I have no idea. What I do know is we chose this path in our journey. For better or for worse.

 

So about the gold dress…

I have a gold dress in the back of my closet with the tag still on it. I bought it two years ago at Anthropologie because it was on a ridiculous sale and I love gold. I was shopping with my mother, I remember when I tried it on she made a face like “um I don’t think so” but then I stuck my stomach out and gestured to how wonderfully the pleats and chiffon would accommodate a baby bump and her eyes lit up “Of course you need that dress!” I walked out with my perfect little purchase and hung it right in the front of my closet, I could not wait to wear that dress and I was sure I would be wearing it proudly within a few short months.

But like I said… that dress is now in the back of my closet.

I have developed a love hate relationship with that dress, or more so with what that dress represents. Because two years ago I was 27, in love with my husband and the type of person who naively, but genuinely believed that because I wanted to be a mother, I would be a mother. I was optimistic and excited. I was a person who bought the gold dress, who argued over baby names with my husband in bed at night and who spent time researching baby strollers and monitors. I was not the type of person who considered things like hormones and IVF, but I’m a different person now.

Now, I’m a few weeks shy of my 29th birthday, I’m still in love with my husband, but I have very little else in common with the version of me who bought the gold dress. (If I’m being honest I do not think I really like ‘gold dress Meghan’). Over the past two years I have been forced to face more challenges than I ever expected. I have had to make decisions that have changed my life. I have had to learn to cope with the loss of dreams and expectations.

But here’s the thing about the gold dress… I refuse to throw it away.

I refuse to give up. I refuse to accept defeat on this path to motherhood. I am on a completely different road than I imagined I would be two years ago, but I’m slowly learning to embrace this new route I’m taking in life.

This journey is difficult, it’s heartbreaking, it’s overwhelming and it’s filled with highs and lows. My journey may be a lot like yours, it may be nothing like yours. But I hope somehow, while you read this you feel a little less alone, you feel a little more inspired and you feel, for even a moment, like you can survive this… because you can, I can…and we will.