Saturday, February 15, 2014

Hope, Alternative Family Planning and Daring to Look Forward

It does not feel good, looking forward. That pull in my chest happens. I remind myself that I do not intend to, and in fact cannot, replace Maggie and Patrick. They are, and will always me my children. But, I still want more. I want to have this house filled with the foot steps and laughter - and even occasional tantrum or slamming door - of children. My children. 

It is scary to look forward and sometimes hope is hard to find. We are essentially unable to conceive a child naturally. I have been pregnant twice in my life: once through Intra-uterine insemination (IUI) and once through in vitro fertilization (IVF). I was pregnant with EllaGrace after only one round of IUI, but we tried four rounds of IUI before progressing to IVF which brought us Maggie and Patrick. 

Facts in my mind relating to fertility and family planning include: our fertility requirements have become more complicated over time, fertility decreases as age increases, I have approximately a 30% chance of pPROM reoccurring, our embryos did not fare well in vitro, which meant that we could not freeze any. For all the optimists out there, I will acknowledge that I have been able to get pregnant (but for the record, staying pregnant is key).

Our solution is two pronged:
1) I will attempt to carry a pregnancy one more time. If I pPROM, I will do it all over again and hope that something is different. 
2) We will not count on this. Surrogacy is our next best option and needs to happen simultaneously. 

IVF is expensive and, more than anything, it is emotionally and physically exhausting. I may get pregnant. And if I do, I certainly might pPROM again. So, I cannot count on that. I cannot put all my eggs in that basket, so to speak, no pun intended. It seems like too much of a gamble to plan to go through all of IVF again and have me as the only person to carry those embryos. Especially since a full round of IVF may only provide one opportunity to attempt pregnancy because the embryos are not of high enough quality to be frozen and stored. 

We want to find a surrogate who would be willing to undergo an embryo transfer on the same day as myself. This serves several ends:
If we both become pregnant, if there is a complication, there is still hope being carried in the other person. I truly believe that this could save my sanity. The anxiety of being pregnant on my own, trying to grow our family, knowing what the worst possible outcome could be, would be barely tolerable. I need hope. Or at the very least, to know we tried our best. 
If we both become pregnant and give birth to living babies, then I will be able to breastfeed my child born by another woman. This is possible without having been pregnant, however, women are often unable to produce enough milk to exclusively breastfeed. 
If we both become pregnant and give birth to living babies, than I have not lost as much time in 'fertility years'. My family is growing fast because there is more than one baby being added. 
This also means that if IVF only provides us with embryos that have a chance during a 'fresh' cycle, that we have optimized our chances, rather than seeing how I do and hoping for frozen embryos if I rupture again. In truth, this is all about optimizing changes, optimizing hope - if I can do that, then maybe moving forward will not be so painful.

BUT, who and how and what are the chances of finding a surrogate? Sometimes I imagine that a generous, altruistic, lovely person that we know will come out of the woodwork and offer to help us in growing our family. It would be such an amazing thing to do for someone else. And truly, anyone who even considers it deserves some kind of prize for greatness. This gives me hope. Let's me look forward and still see the future we have always planned.

My hope stumbles and I sometimes lose it altogether when I reach this step of the equation. There are agencies that can help us to connect with a stranger, but that would change our pregnancy budget from $10,000 to $50,000 or $60,000. (For the record, in Canada it is illegal to pay a person to be a surrogate, but you can refund receiptable costs, which add up quickly, evidently). 

Some days are better than others, as I hope that our luck will change and we will figure this out. That one day my blog-writing will be positive again.... but then, I give myself a negatively-toned, reality check because - what are the chances?

Shoulda', Woulda', Coulda'

I have already given an account of some of my experience in Mexico, but I want to write about the thoughts that consumed me so much while we were there. 

We had run away for my due date. And, perhaps naively so, I did not think that my due date would have been that difficult. Twins are born, on average, around 35 weeks gestation. And what are the chances they would be born on their due date in particular anyways? So, it is an arbitrary date... meaningless. And yet, its existence practically killed me. 

Here are the basics, the core of my thoughts - my shoulda', woulda', coulda's:

Maggie and Patrick should have been born, just today, or yesterday. They should have been, healthy babies. They should have been in my arms, nursing. I should be sore, complaining and exhausted. I should be perfecting the art of nursing two babies while not neglecting my first-born. We should not be here. 

Maggie and Patrick would have been 15 weeks old. Our NICU stay would have been winding down. We would have been sad to have had such a difficult start to life for them, but thankful and joyful that they were both still with us. We would have been enjoying every moment of cuddles and parenting, finally able to do it ourselves without tubes and nurses.

At the very least, Patrick could have been home. Is it too much to ask that we not be struck with so much bad luck that Maggie died due to pPROM and Patrick from brain bleeds? Things COULD HAVE BEEN DIFFERENT. 

But they are not. So, I counted down the days to my due date. I should'a, woulda', coulda'ed my days away in Mexico. I saw other women vacationing with toddlers while they were pregnant, I saw twins, I saw infants, I saw families.... I saw baby clothes and tired parents. And every moment gave me a reason to remember Maggie and Patrick and wish that something had been different. 

I cannot believe it. I still cannot fathom that it is me and my life that has lost these two little people. Two children that I fought so damn hard to have, nothing came easy to get pregnant. Pregnancy was not easy, even before the pPROM. How is this my story...? How have my tears, bargaining and wishing not changed that? 

Now I look forward: they would have been 18 weeks.. or, they should have been a couple weeks old.... they should have been learning to sit, or walk, or crawl.. going to college. I will probably always have the shoulds and woulds and coulds I guess...

Running to Mexico

On January 25th, we ran away. We embraced avoidance, packed our bags and settled into a condo for a couple of weeks of sun and sand in Mexico. 

The trip was a long time coming in some regards. In August while we sat and waited for miscarriage to start in the days after I ruptured, I said to Lee that if the babies died then I wanted a dead baby trip. Morbid, I know, but that's where I'm at (and have been for a while...). In response to others' discomfort with this morbidity the raison d'etre of the trip shifted around over time. He originally agreed to it when I suggested that the trip would not be immediately after the loss, but once we had started to heal. The trip would be a marker: we are still a family, we are surviving this and we will thrive. But, for me, as much as I wanted this to be true, it was always my dead baby trip. It was an easy decision to decide that the trip should take place surrounding my due date. 

I wish that I could write this post and say that it had been healing, that I looked at my husband and living daughter, found thanks and allowed myself to take a step toward moving on. In reality, Maggie and Patrick were on my mind more often than at home. I wanted so much to be distracted and often actively tried to put them from my mind, swallowing tears and forcing myself to admire the beach and ocean instead. We filled our days with swimming, exploring, meals and visits with Lee's parents who were in the same area. But tears were never far, nor their memory.

We ran all the way to Mexico to avoid sadness, triggers... I left behind their photos, their blankets... their ashes - those tiny tokens that I hope give reality to their tiny lives..... I hoped that leaving them behind and a change in venue would give me a break. But, the truth is, Maggie and Patrick are dead in Mexico too. They are dead. That follows me; it's in me. It's that pull in my chest. It's that truth that still stops me when I laugh or try to joke. I am just not ready to be happy or to be okay. So, I wrote their names in the sand, I cried when my mother-in-law tried to take a 'family' photo - because what kind of family do I have? I broken one. One that is missing two people... 

What did I gain in Mexico? I did enjoy the distractions we chose. And I always appreciate a break from the snow. I had time to sit and snuggle with my family (what remains of it). I began to think about who I am now; I have not wholly learned the answer to that question, but I know that I am not and cannot be that person I once was. For now, I notice that I am missing my ability to feel care-free, happiness-embracing, social... I certainly learned that there is no escaping the awfulness of grief and child loss. No distraction would be big or bright enough to ease that piece of me and my story. Thanks for trying though, Mexico.

Friday, January 3, 2014

Assigning Meaning

Very shortly after the twins' deaths, I began thinking about a piece of jewellery that I could wear to remind myself of them/to have them close to me. As if I might forget them or go out and leave the memory of them behind...

Initially I was planning a necklace that had three rings which all connected. Each ring to be made of a different material, symbolizing each of them and myself. Different, but forever connected. I began to worry that I would feel stuck because one day I did not want to wear that necklace with a particular outfit (sentimentality versus fashion - oh my!). I decided that a ring would be more suitable: something that went with my wedding and engagement rings. A memory, and promise to love and remember, to sit with those of my wedding vows. They do not come off. They are not a fashion statement. No dilemma; I will always have my reminder of them with me.

Interestingly, as I Christmas shopped and thought about various options, I began to think that perhaps a ring and a necklace would be a good idea. Then a bracelet sounded smart. Luckily for my bank account, my Aunt suggested that I might be nearing the line of excessive. I simply wanted to mark their lives and my love for them. How can I express my love to them when they are not hear? I cannot shower them with kisses and snuggles as I do EllaGrace... but I can find ways to carry their symbol with me every day. There is an intense sense of powerlessness that I cannot change what happened to my children, my family and me. Acting felt stronger than not.

My home is now littered with photos of each of them; they are a part of my family and home. And I did buy a ring. I found a platinum ring to match my other rings. In my mind, this connects the story to my family and marriage. The ring has three separate, small diamonds: one for each of them and myself. They are set in a ring, a circle is infinite, as is their memory. We are forever connected and yet each separated. The ring is designed to be beside an engagement ring and so has a curve in it, to surround a larger diamond. I look at this as an imperfection in the circle, a testament to real life. There are bumps in the road: Trials, devastation, loss, but it keeps going despite it all. I know this now, more than ever. Other than the ring I have not purchased anything else, and the desire to do so is waning somewhat.

I noticed when I was thinking of all the items I might use to mark the lives and losses of Patrick and Maggie, that I developed the ability to make anything meaningful. The hospital bracelets, my PICC line, circles, ring designs, numbers, shapes.... I came across several pieces of snowflake jewellery in my shopping and they became a symbol of Patrick and Maggie. I now have a snowflake charm on a necklace Lee gave me. Why the snow flake? Well, they are each unique. They can land in our life and stay for their whole season, but just as easily they can land and melt in the palm of your hand as you admire the intricacies and beauty of their design. Patrick and Maggie were each unique little snowflakes that melted far too quickly. I barely got to see their shape.

I have moved away from meaning-making in the last couple of weeks. But for Christmas I did have ornaments made for each of them. The ornaments are made of wood local to the artist. The trouble is that no matter what I buy, no matter how I mark their lives and deaths, the story never changes. I remain powerless. But, if they can see or hear me, they know that I am doing anything and everything I can to show my love, in include them in our family...

Thursday, January 2, 2014

A Real New Year

I started this blog thinking about Facebook posts. I imagined what my posts would have been if I was willing to be more public than a blog about pPROM and my pregnancy's outcome. Then came Christmas and New Years, Facebook was littered with cheerful greetings: Merry Christmas, Happy New Year and all sorts of reflections upon the happy times of 2013 and those surely to follow in 2014. Anyone on my Facebook might have noticed that I posted no such status.

I would have loved to write those things, but they would not be true. I did enjoy Christmas but not as much as I have previous years. I continue to feel so torn. I am enjoying the present but am carrying around heartbreak. Anything is a reminder, a trigger. Every Thursday is a marker for how pregnant I should be, how long ago since I gave birth and how long ago since Maggie died. Mondays are Patrick's death day. My Christmas tree did not have ornaments for them (long story, but they finally arrived today) - my first Christmas without them. Christmas celebrations themselves - how to incorporate them into our rituals.

In the first days and weeks after Patrick and Maggie died, if I smiled or whistled or laughed I would immediately stop myself. It was abrupt enough that my Aunt even noticed. I felt guilty to behave normally or to genuinely laugh, so I stopped myself. Over the last 10 weeks I have attempted to reconcile these feelings and behaviours: I am allowed to laugh, it does not mean that I do not also cry. Happiness does not mean that I am not devastated by this loss. And, yes, in time, I am allowed to have more ups than downs.

Lying in bed last night, thinking of Patrick and Maggie I pictured their skin, their hair, the shape of their hands. I can always picture Patrick more clearly, I had more time and was far less ill with him - something that saddens me greatly - not being able to remember Maggie so well. In remembering Patrick's movements and features especially, I heard myself declaring "they were real."

This is something that I have been stuck on, though perhaps it has evolved slightly. During my pregnancy I recall declaring in conversation with loved ones, that if I lost the babies now it would not be a miscarriage. My intention in this was not to imply that a miscarriage is somehow easy or fine, but that as a pregnancy progresses the creature growing inside becomes more tangible and there is more hope for life. When I reached 24 weeks I began to really believe that we could have hope and even when Maggie and Patrick were born, I believed that we would come home with baby(ies) in our arms. But their lives, like them, were tiny. And the experience was private, intimate; so very few people met them. Or have even seen photos of them. And so, I have this internal dialogue in which I imagine that others do not believe that their deaths are as significant as I do. I imagine that others dismiss their deaths as predictable or poor luck - like a miscarriage or a pet. I imagine this, and I am stuck. I remind myself over and over, they were real. They had life in them when they were born. Patrick especially, had a life. albeit short and sad. They were both here and surrounded by love. I held them. Sang to them. Told them jokes. even. They were REAL.

To be clear, no one has explicitly said anything that has caused me to think this way. Nevertheless, I look for clues of others' doubt: their expectation that I should be fine by now, their neglect to have offered condolences, comparing it to a miscarriage, dismissing the photos, not crying - anything that I can perceive as insensitive or dismissive. I appreciate that it is difficult to raise the topic with me at (where ever I am) and that I will likely cry, which people generally do not want to cause. (And really, crying sucks, so I don't want the topic raised... which is a total catch 22, because now I am saying I want people to talk about it and not to talk about it!) I know that it is hard to offer sympathies and am sure I have failed to do so in my own life. Yet, I go home and think that others just are not understanding that my children died. My second and third born children died. Dead. Gone. Real babies. Gone. Before I turned 30 I had buried two children. EllaGrace has a brother and sister who she will never play with or boss around.

The idea that others may not imagine the babies as real, and as such, my grief, has impacted how I present in public. For example, EllaGrace, Lee and I were playing with the timer on our camera and being silly recently. One such picture is cute; we look like a happy, silly family. Under normal circumstances I would probably post in on Facebook, but not now. What if it undermines the 'real' of Patrick and Maggie's deaths? What if someone thinks that I'm not sad any more? So, I don't share the photo. Or smile much in public places... 

If I have no real evidence, just my own assumptions and vivid, grieving imagination, then why do I keep getting stuck on this? No one else has said they were not real. Am I doubting their existence myself? Maybe I think that I am moving on too quickly (there's that guilt again) and am trying to pull myself back? Maybe the whole experience has been so surreal that I have to remind myself that I am sad for a legitimate reason?

Grief is such a strange experience. Am I externalizing? Internalizing? Doubting? Over-thinking? For now, I will try to look ahead. Or at least at the present. This does not mean I will ignore the past, it simply means that for the New Year I am going to allow myself to move forward. This is not a resolution, it's simply something that I have no choice but to do if I am going to learn to enjoy life to its fullest again. And maybe by the end of this year I will have reached that stage where I can remember Patrick and Maggie and be thankful for the moments I had with them and know that they were real and that they changed me and the world in their own small ways.

I am not ready to celebrate yet. So I am not going to say Happy New Year! I will say, I acknowledge that it is a new year. And, I really hope this year is better than the last. Such a bittersweet transition - I feel further and further from my babies, and yet, maybe I am moving towards hope? Thinking that way is hopeful in and of itself.

A little touch of humour, but wholly true (language alert):
A Facebook status steal from one of my friends: Well, 2013, you were a colossal dick-face.

Saturday, December 14, 2013

Remember when?

Most people I know like to speak about the past, reminisce, build nostalgia. Every now and then I do the same as it relates to Patrick and Maggie. Remember when things were good? Less awful? I can be sent down memory lane at seemingly nothing, or more in-your-face reminders. For example, we drove past an RV sales location and I found our old shopping list that we started when we learned we were having twins. 

In the summer we camped with my family and then on our own for about a week. Our tent, which is marketed to sleep about 8 people, barely fits the three of us. To be fair, we sleep on a large, queen sized inflatable mattress... but still, we were squished. We went for a walk one day and started to talk, "how will we camp next summer, with three young children?" EllaGrace would be just three and the twins, about 7 months. Lee's answer, as a terrified Dad-of-twins-to-be, said we would no longer camp, or leave the house. We laughed, I reminded him that he would adjust. We agreed that in the long run we would want a tent trailer, something to fit everyone comfortably for sleep and a safe place to hide when it's raining. Not really roughing it, but hey, with three young little people in our family, we were okay with it! 

The day we found out we were having twins, I was thrilled. Ecstatic. I have wanted twins forever. Just ask my cousin - we named our children when we were about 11 years old (my list included boy/girl twins). When I told Lee, he was immediately terrified and I slowly followed. We talked about sleepless nights, strollers, carseats, vehicles, leaving the house, parental leave, daycare for EllaGrace... with twins it was all so much more complicated. My biggest concerns were how to get the second baby to the breast and latched without dropping the first and how I would meet the needs of all three of my children in the way that I felt I had been able to with EllaGrace up to that point. On top of that, we no longer fit into either of our vehicles. And we needed a vehicle wherein it would be easy to manage all three children on my own. We made a list - it was not long, but it was certainly expensive. We even went to look at one van. I maintained that I did not want to be a van-driving parent, but it was so practical given the challenges I was anticipating. If only I knew that I would no longer need a van at 25 weeks, I never would have complained. I wish I needed a van. 

In fact, I wish I was still complaining about the daily appearance of new stretch marks, water retention, possibility of medical interventions in birth,... all those things that I was negative about. 

I think to myself often, "Remember when we were excited?" I had no idea that my pregnancy could go so wrong. I did not even know that one could have ruptured membranes early in a pregnancy. I never prepared myself to be a statistical outlier, having ruptured membranes and no surviving children after such a strong start to the pregnancy. I never, never thought that I would have this level of life experience before I turned 30.