Discovering Madelyn

A year ago today, I discovered my sweet Madelyn. That morning, I took my monthly pregnancy test, expecting it to be negative like every other month. When I saw the test had turned positive, I did a double-take. I couldn’t believe it.

I had an 8-5 class that day, and all the way to school, I contemplated what was happening. I was excited, but scared it wasn’t real or wouldn’t last. I needed more proof.

During my lunch hour, I went to Walgreen’s and bought more tests. I had planned to test again the next morning, but I couldn’t wait. Knowing fully well the test was likely to be negative (since early pregnancy tests work best in the morning), and knowing how disappointed I would be if it was, I lacked the discipline to resist. So I tested, in the upstairs bathroom of January Hall.

To my surprise and relief, it was positive. Yet I still wasn’t convinced. I tested again the next morning, the next afternoon, again and again for a full week until finally, after a trash can overflowing with test sticks and the results of my blood test in my hands, I released the fear I had been carrying. At long last, I thought this baby was here to stay. How could I have known that even giving birth does not guarantee survival?

It has been a year, yet I still remember so much so clearly. I remember being unable to focus in class that morning. I couldn’t think about building an effective mentoring program (the class content) after finding out a baby was going to be in my life. My head was swimming instead with thoughts of baby clothes, nursery decorations, and a little fear about the birthing process.

I remember thinking I didn’t feel different. Morning sickness and all the other first trimester symptoms hadn’t yet chosen me as their companion. I had expected some type of feeling – the feeling so many say they experience, informing them they are pregnant before they get a positive test. Yet there was nothing except the knowledge I was carrying something very precious.

I immediately changed so many habits in an effort to put the baby first. I stopped eating anything I thought might be bad for the baby. I started driving much more carefully. I made every effort to get plenty of sleep each night and drink the right amount of water. I started walking regularly. Even though it isn’t necessary to sleep on one’s side until 16 weeks of pregnancy, I started doing that too. I would have given up anything for this child’s well-being. Yet I learned all too quickly that it didn’t matter. Nothing I did or didn’t do could save her in the end.

A year is such a short amount of time, but I find it difficult to imagine life before her. She quickly turned my world around. Things I thought mattered before quickly faded to the background. I found myself wanting things I thought I’d never care about, all because of one (or 15) little positive test. I’m still amazed at how someone so tiny could make such an impact on me, but I’m so glad she did.

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From OK to Good

For the longest time after losing Madelyn, I could never bring myself to respond to the casual “How are you?” with the words “good” or “fine”. While recognizing the inquirer was merely following the social protocol of greeting me, and not asking me to seat myself on the couch of psychological inquiry, “good” and “fine” seemed much too chipper to describe how I was generally feeling. Instead, I settled for saying I was “ok”, or I would simply avoid answering the question by saying “How are you?” in response without answering their initial query.

Yesterday, I heard myself respond to someone’s “How are you?” with “good”. I don’t know how long I have been doing it, but subconsciously, I must realize I am progressing emotionally. Many days, I really am good. The bad days have not obliterated themselves from my life, but even the bad days are littered with good hours. At first, I resided continually in a chamber of pain I could not escape. Then the pressure slowly began to ease, not in weight, but in frequency. I still remember the first time I truly laughed after my loss: I can tell you exactly where I was and what I was doing. Now, the pain is there, but it is usually muted. I no longer cry on a daily basis. I often even pass through an entire week in which I shed no tears.

I miss Madelyn a lot. In fact, I miss her physical presence in my life more each day. However, there is nothing I can do or undo to change the fact that she only lives on this earth through the words and hearts of those who love her, and I guess I am learning to accept it. This does not mean I am happy about it or would not sacrifice every limb on my body for things to be different. But my arms and legs cannot be given in exchange for her. Even if such a thing were possible, she probably would not want to leave heaven to live on this earth full of pain and suffering. So I am learning to live with her and keep her in my life the only way I know how: by keeping her memory alive, sharing her story, and hopefully by helping others in her honor. As a result, I am moving from “ok” to “good”.

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An appointment & something to consider

I finally heard back from the clinic we are most interested in using for embryo adoption. The doctor is booked until March 15 at 11:00 a.m., which is when my phone consultation is scheduled. I’m also on their cancellation list, so it could be sooner if someone cancels their appointment. After the phone consultation I will officially be their patient, and the next step will be to find a clinic in my area to coordinate with them in getting my blood tests and pre-transfer ultrasounds done. If all is in the clear and they still have plenty of embryos available from which to choose, we would be able to schedule the transfer.

I had another phone call today with the last of the clinics I had contacted. The doctor I spoke with planted a new idea in our minds, and it is something we will consider as we wait for my March appointment. I had mentioned before we were somewhat opposed to sperm/egg donation because we didn’t want one of us to feel left out. However, he suggested we do both. We could start with using a sperm donor, and then when we were ready for another baby we could use an egg donor. In this case, we would have a child that was from my genes, and another child from Nathan’s genes, so we’d each get a chance to contribute genetically to our children. This makes the idea much more appealing to us as an option than sperm or egg donor alone. Sperm/egg donation also have the added benefit of a significantly higher chance at achieving pregnancy. We are not necessarily leaning towards this option (we are actually leaning most towards embryo adoption), it is simply something else we will be contemplating, and it is nice to know the option is there if embryo adoption doesn’t work out.

I will be glad when we have made our decision and are doing whatever it is we decide to do. We will at least know by March 15! There is a fee of $175 for the phone consultation coming out of our pockets, so we would want to cancel that beforehand if we decided to pursue this new option.

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Madelyn’s Butterfly

A butterfly has been released in Madelyn’s honor by Rachel of Triplet Butterfly Wings. Thank you, Rachel!

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The Middle of Nowhere

Sometimes it seems I have said everything I can say in my grief. Does it mean I no longer feel pain? Absolutely not. Yet, how do I find new ways to express this loss inside of me? Do I simply point to posts I have written in the past and say this is how I feel today, or these are the thoughts that play through my mind every single day like the infamous song that never ends?

With so many words at my disposal, why do the ones I need sometimes seem just out of reach? They so often hang ahead of me, barely beyond my line of vision, mocking me, knowing how I want them. Or is it that no language can truly paint the picture of the emotions swirling around inside? Maybe these words I envision are no more than a mirage in this desert of grief in which I’ve been wandering for months now. The desert I sometimes fear will never end. The desert that although has beauty, remains a place I do not want to be.

In the place I am now, I sometimes feel far enough away from the event that brought me here that I find myself asking myself if it was real, or if it was one big nightmare. Other than the pounds I still must lose, the signs of my pregnancy have faded from my body. First it was time that was moving on without me, then the people around me (except those closest to me), and now I feel as though my own body has betrayed me by letting go. And so I stand here, in the middle of this path, while the things behind me slowly lose their vividness (although I still remember that night like yesterday, images do lose their clarity and begin to feel more like colorful shadows), and it is impossible to know what is ahead. I’m in the middle of nowhere.

So I continue wandering. Wandering and wondering. Wandering through this meandering desert in the middle of nowhere, while wondering what lies ahead. Wondering what I will be writing this time next year. Wondering what is left to be written on the many blank pages of my life ahead. Knowing that my wanderings will eventually lead me to Madelyn again, in heaven, the only place where my family will be complete again and my heart will be healed. I cannot wait for that day, when I can introduce her to any siblings we give her (hopefully soon), and tell her face to face how much her mom and dad loved her, and how we would have always chosen this way, simply for the chance to have her and hold her in our arms for the short time we did.

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Still waiting…

…on the clinic to call me back, that is. I called yesterday to make sure they weren’t waiting on me, but they said no, they would call me back. Apparently they are booked into March right now, so they are probably trying to figure out when they can schedule my consultation. March is fine – we wouldn’t have done an FET right away anyway.

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Today marks another year in my life. This time last year I was only about a week away from finding out about Madelyn. I can’t believe it’s been a year. It’s been a little hard the past week or so, for that very reason.

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Yesterday I had my annual “well woman” exam at my OBGYN’s office, and I noticed a bulletin board covered in photos of babies he’d delivered. I’ve been seeing my doctor for about 6 years, and never before had I noticed the board. For some reason, it hit me hard, knowing Madelyn didn’t make it on his board. I thought going back to his office would get easier. Apparently I was wrong.

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We might have a clinic!

I posted a few weeks back that we had opened an account with Miracles Waiting in hopes of finding some embryos we could “adopt”. Within a few days I was contacted twice; however both donors wanted an open relationship, meaning they wanted to be involved in the child’s life.

I soon realized that most of the people who use that site are looking for such a relationship, but it is not what we had in mind. While we plan to be completely honest with our child, we do not want to be seen as “the other parents”.

I grew quickly discouraged by this, and Nathan and I started considering the possibility of trying again naturally. After all, the odds are in our favor. I thought about this and discussed it with several people who are in the same situation as us, and we learned many of them went on to have a healthy baby. However, there were a few that had more than one SLOS baby. There are no guarantees we wouldn’t. In order to try again naturally, we would have to accept this truth. This doesn’t mean we have decided not to do this, but if the embryo adoption door is open, I think we’d both feel more comfortable trying it.

I knew there were other ways to pursue embryo adoption. For example, it is possible to go through an agency. However, doing so is expensive, and it takes nearly a year to go through the approval process. On the other hand, once we were approved, we would be guranteed an embryo at the end of the waiting period. This still doesn’t mean a pregnancy will result.

I was informed by someone who found my blog and who has been through embryo adoption it is also possible to go through a fertility clinic – some of them have embryo adoption programs. I quickly discovered such clinics are few and far between and most have waiting lists of a year or more. I believe I have called almost every clinic in the U.S. that has an embryo donation program! I have spent hours and hours trying to find these clinics.

I had finally started to accept that if this was the route we chose to pursue, I was going to have to wait my turn. On the way to work this morning I told God I have done all I can do to pursue this, including adding myself to several waiting lists, and that it was up to Him from this point forward if this is the path He wants us to take.

I had not heard back from all of the clinics yet, and I had decided that when they called, I would simply request to be put on their waiting list, and I would work with whoever called me first. Most of the clinics I called do not require any payment until after an embryo is accepted, so it doesn’t cost anything to be put on the list.

Well, today I heard back from three more clinics. To my surprise (and extreme happiness) the first one told me they have no waiting list! It was so unexpected. Their success rates are also higher than average at 50%! I am waiting to hear back from them to schedule a phone consultation with one of their doctors. Then we will need to figure out how to coordinate with the clinics in my area for the initial blood tests and ultrasounds.

The second clinic informed me some people have been on their list for 2 years, so I didn’t even ask to be added to that list.

Finally, the third clinic called and informed me they don’t have a waiting list either! This clinic is a little more expensive than the first one that called, and unlike the first clinic, they would require me to have my initial consultation in their office. However, they said things move really quickly after the consultation, and I’d only need to visit their office two times in all: once for the consultation and my second trip would be a few days before the transfer. This clinic’s success rates were about 30%, which is more aligned with the national average.

I am very excited right now, because I was beginning to lose hope. I really feel the phone calls from these two clinics were an answer to prayer, and I am excited to go forward.

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Trusting God after Loss

I would be breaking my vow of total honesty on this blog if I said my faith did not take a blow after my loss. This is something I find hard to admit. I have made minor references to this in various posts, but never opened up completely about my feelings due to my fear of coming across as a “lesser Christian”. However, I feel I must share this part of my journey.

When I lost Madelyn I was angry and hurt, and directed some of these feelings towards God. It was, and still often is, hard to reconcile the fact that God did not heal Madelyn with my faith. I believed with that God could have healed my little girl, but I did not understand why he chose not to do so. I have seen miracles with my own eyes, and I had hoped I would be able to use my story to increase hope in others going through a pregnancy with a poor prognosis. When Madelyn didn’t survive, my thoughts turned toward a few women who had contacted me because their symptoms were strikingly similar. What would my loss do to them? They had not delivered their babies yet, and I was worried my outcome would destroy the hope they had for their own babies. I now realize that God can use any situation, whether it be a story of loss, or one of miraculous healing.

I also began to question the purpose of prayer. What was the point in praying for something if the answer might not come? Did my prayers even matter? I know they do, but I felt let down. These prayers were the most important (to me) I had ever prayed, yet I felt they had been ignored.

Then we found out we are genetic carriers of SLOS, and my faith wavered further. Why did I have to deal with this on top of my loss? Why was this being taken away from me? It seems so many who experience loss have had other battles to face as well, and I was outraged by the injustice of it all.

A couple of months ago, I heard a song (“Whatever You’re Doing” by Sanctus Reel) on the radio, and it seemed to be for me. I searched for it and downloaded it. Part of the lyrics are:

Whatever you’re doing inside of me
It feels like chaos somehow there’s peace
It’s hard to surrender to what I can’t see
but I’m giving in to something heavenly

Time for a milestone
Time to begin again
Revaluate who I really am
Am I doing everything to follow your will
or just climbing aimlessly over these hills
So show me what it is you want from me
I give everything I surrender…

I’ve said this many times before, and I say it again: I’ll never “move on” from losing Madelyn. I move forward, but not “on”. To me there is a big difference. However, I have moved on from my bitterness and resentment. I accept that God knows what is best. That doesn’t mean I don’t question His plan, or that I have the answers to all the questions I have asked, but I am trying to learn to accept what is. My life is not hopeless, and Madelyn’s life had purpose. In addition, I know I will have the opportunity to mother a living child, possibly not in the way I had planned, but it will be the way God had planned from the beginning. This doesn’t always make me feel better, but I believe I am taking steps in the right direction. And one day, as the scripture shared at Madelyn’s memorial states, we will understand all.

I Corinthians 13:12 (NLT) “Now we see things imperfectly as in a cloudy mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.”

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Beautiful Blogger Award

I am finally getting around to doing this – thanks Jess and Sarah for nominating me for The Beautiful Blogger award!

I am to post seven things about myself, and pass the award along to seven beautiful bloggers. However, I cannot remember who has and who has not been nominated, so instead I will ask anyone who reads this to tell me something about yourself in the comment section! In addition, I am going to follow in Holly’s footsteps and write 7 things about my pregnancy with Madelyn instead of 7 random things about me. So I’m breaking all the rules!

7 Random Things About My Pregnancy with Madelyn

1. From the moment I was pregnant I started reading everything I could get my hands on about baby development and pregnancy. I had 2 books I was reading and got weekly email updates from several sites. I loved hearing about how my baby was growing each week. After the mid-pregnancy ultrasound I stopped. It became too painful for me, because I felt none of the information applied to me anymore.

2. For a baby with hardly any amniotic fluid, she moved a LOT, which is not supposed to happen. The ultrasound technicians frequently commented on this, as sometimes it was hard to get good measurements because she was rolling around so much.

3. I started driving the speed limit when I found out I was pregnant. I was never a particularly reckless driver, but I was more cautious for her sake.

4. I didn’t really get any weird cravings. My taste buds only changed in that Q’doba started making me sick. I still get a little queasy thinking about their mild salsa.

5. Most people who read this blog know this, but I spent my last 8 weeks of pregnancy with her in the hospital on the fetal monitors. The nurses told me most people turned their babys’ heart monitor way down during the day, but I liked hearing her, so I kept it on, even if at a low volume. I wish we had thought to record her heartbeat. However, I still hear it very clearly in my head.

6. I didn’t get a single stretch mark on my belly, even though it got huge!

7. I loved being pregnant. In the first trimester I couldn’t wait for my belly to start showing because I wanted other people to know I was pregnant too. I didn’t like morning sickness, but even that was a joy for me because I knew what was causing it.

So, as mentioned above, I would love to hear something about YOU in the comment section. To the other loss mamas who read this, what was your favorite part of your pregnancy with your angel baby?

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Grieve Out Loud

I wanted to announce to all who voted that the name of our loss project is Grieve Out Loud. We are currently in the process of organizing content. I will let everyone know when the site is up and running!

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