Restart in the fall

“Autumn is performing a revue outside the hospital window. Sunshine against a park bench. Small breezes in the trees. Thick scarves. Autumn leaves that float softly through the air. I want to be out there. Be my usual me. It’s been a week since the surgery. Nothing as a whole, but an eon of time right now. As if autumn is passing me by. I’m stuck in here. Will it take another week? Two? Nobody knows.

I’m shaking constantly. The whole body is rebelling against medicines and the invasion of it. Have no energy left. Were we wrong? Was all this just a stupid idea? It’s hard to get distance from everything when you’re in the middle of it. The days before. Now that it is done. What to expect in the future. “It’s important that you focus on something else,” the doctors say. Don’t shut myself in. 

The autumn tree outside the window becomes my focal point. I see it age day by day. Pretend to feel the crisp autumn air in my lungs. Listen to Anders’s words in my heart. That we made the right decision. That we would have regretted if we had not done the surgery. I trust in those words. They calm me. He just repeats what I have said.

If the tree out there can let go of all its leaves, so can I. Let go of the control. Stand bare and skinless for the coming winter. Await my time. It’s all gonna be just fine. This is just a short moment in eons of time.”

***

Autumn has always been my favourite season. A rebirth. As if after a long warm summer I can finally breathe and look up and ahead. A time of clear perspectives and a new drive. But also serenity and thoughtfulness. A much needed break from everything that is shorthold and stressful, to embrace the familiar. Unwind. Peel off. Prepare for the oncoming.

The fall of 2012 was the start to a one big preparation. Up until September 15, most of everything had revolved around the operation. The four meter high wall in a long obstacle course. From there, there were tiny little ditches to cross. Slow de-escalations of medicines. Clear goals for when some of them would be completely excluded. Uterine and blood flow checks that went from weekly to monthly…

Coming home to a warm and embedded apartment was a nice step into the familiar. Something firm and reliable in the overthrow. (Putting on your shoes when going home felt literally like being on land again after a long time at sea.) Walk barefoot on a creaky wooden floor. Light lots of scented candles. Take a long hot shower. All over sudden, all the anxiety disappeared. And the sharp scent of antiseptic. Shaving your legs has never felt so liberating. It is hard to feel like a vibrant woman wearing only a shabby hospital gown and knee-long compression stocking with shaggy legs underneath.

I had a big need to cook in the beginning (not so fond of it usually). A tremendous craving for familiar flavours. Longed for rich stews and creamy pasta sauces. The shaking of the legs made it difficult to remain still. So I kept me busy tidying out and cleaning every inch of the home. (As good as possible with bent back and sore stomach.) Tried to get in place. The psychologist of the team once said that I “restored the fluff in the brain”. Soon enough, the shaking faded. To return again when I got pregnant. The shaking in my legs has become a significant expression of when my body is extremely stressed.

The soul played several tricks on me, autumn 2012. As if I was in the middle of some kind of catharsis. For instance, I had difficulty being outdoors and among large crowds. Looked over my shoulder once and twice before crossing the street, well aware of all the dangers. Physically and mentally I carried a precious cargo. I who normally get caught up in every hospital series, had to turn off every time there was a surgical procedure on the TV. When the movie Avatar went one night, I couldn’t watch it. Panicked a little because the main character was strapped into an incubator-like box. (Also, that he was chairbound was too synonymous with my own unreliable legs.) Strange it was. 

Slowly along the autumn, however, I returned to normal. On the other side of the cleansing. Like the season, my soul changed one tiny shade at a time. Prepared itself. Colors got a wider spectrum. Smells and flavours got an additional ingredient. Reassurance.

This autumn I’m going through something similar. A heavy blanket of weariness, compounded by feelings such as inadequacy and frustration (becoming a parent has been the toughest challenge of my life – for several reasons) has been lifted and the struggle to get to know your child and your new self have matured into a confidence and optimism. It’ll be fine. We are a family now. We find our own way.

(Speaking of reboot, I’m looking for new exciting freelance assignments. Feel free to tip me if you know anyone who needs a Swedish writer or virtual assistant ;))

If someone had told my younger self that it would be long before I became a mother and that the road to it would be a long tangled trail, I probably would have been very unhappy. Now I wouldn’t want it any other way. Today, in addition to a time of recovery, autumn is also a stamp of everything wonderful that has happened to me and our family. In the autumn, we think about the day my husband and I once became a couple, and the day we got married. In the autumn, we notice the day my mother and I were operated on and remember the disappointed embryo transfer the year after. In the autumn we celebrate our son’s birthday.

And that I became a mother (almost) in the autumn of age has become a sign of how much I love autumn.

“Mom, why do the trees lose their leaves?”
“They are preparing for what’s coming”

Things that bloom again. Another thing I’ve come to appreciate as I’ve gotten older.

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Mother of Life

2013. In the starting of the new womb life

”Sometimes I think I can feel it. Not so much physical. More spiritual. In the sense that I feel it lives inside me. Like talking to me. It immediately told me that something was wrong when I got sick after the surgery. I hardly got used to being at home before I was back in the hospital. Now it’s different. Now it says “I am fine in here. I’m ready for my purpose. We can do wonders, you and I.”

Mom calls it our uterus. The organ that once was hers and who shaped me and my two younger sisters. My first home. Now it’s my uterus. I didn’t know it then, in the early 2013, but the same uterus would also give life to my two children. Having been useless for a woman for over 20 years, it could be given to another woman – her daughter – and be reused to create a fourth and fifth child. One womb – three generations.

On the outside, there is not so much difference. Apart from a scar on the stomach, I look and behave as I did before the transplant. On the inside it is a profound difference. I’ve got my fertility back, the one who was brutally taken away from me 10 years ago. I’m like other women – again. With the same opportunity and chance of having children. A family of my own. I want to shout it out loud from the roof top. But I keep it quiet to myself. As a secret. Just me and my womb who know. We have our own language. Our own alliance.

I have tried to imagine what she looks like. The uterus. Mother of life. The anatomical images do not really make her justice. For me, she is more of a big warm heart that gives the rest of the body a spiritual peace and harmony. Places that were hibernated, thoughts and feelings that were buried – everything is brought back to life again. By this heart. Symbolically, our son was born with a heart in his forehead. A stork bite that fades over time but which will always have a great significance for us.

(In swedish, the word for ”uterus” is ”livmoder”. Directly translated it means ”lifemother”. Many years ago, before transplantation became real, I wrote an article about my story. The editor of the magazine gave it the title Mother of Life. I liked that expression. Carried it with me and wrote it several years later in my diary.)

The ways we connect

A dull November morning when I left the children at the day care, I meet with one of the teachers. She has been on sick leave for a long time and the staff has been quite secretive about why she is absent. I had my suspicions though.

I see it in her eyes when she comes out of the personnel entrance. Somehow I just know. She starts to tell. About the bleeding from nowhere and the doctors who thought it could be cancer. About the scare. About the anxiety. The fear of perhaps having to leave her children. She was operated on and the doctors could thankfully say that it was a false alarm. There was no cancer.

Now she is without a womb. Puzzled. But incredibly grateful to be alive. Not having cancer. Shaken by the experience, she can continue to be a mother. I’m listening. Recognize so well what she tells me. The frighten. To no longer take anything for granted. The terrible in not having control over your life and your body. Much of what I have experienced, I have put behind me, of course thanks to the children. But also because I didn’t want to be someone who identifies herself with cancer. Surprisingly, however, much will come back when you have reason to be reminded of it.

It feels good to tell

She is only a few years older than I am. She could have been my sister, my friend. At this precise moment when we stand at the gate to the day care, it feels like I´m very close to her. There is so much I want to tell her. That I know what it is like to go from “deadly ill” to healthy again from one moment to another. What it does to you. That I know how it feels when something big within one has changed but everyone else live their lives as usual. How frustrating it sometimes is. And that I understand the need to talk, talk, talk. Let the world know what you have been through.

So I tell her. My story. That I also got my uterus removed. She is puzzled. How does that work? “I saw you when you were pregnant”. So I tell her that too. That I got my mother’s womb. She gets tears in her eyes. Obviously, I affect her. I try to convey her though that I am not telling her to overtake her story. But for her to know that I understand her. 

Because in fact she affects me. Although our stories are relatively similar, there is a big difference. She is a mom when all the terrible things happen. I have touched on the thought a couple of times. Now it becomes more difficult to defend myself against it. What if it had been the other way around? That the children came first and the cancer afterwards. What if it hadn’t been possible to remove it? I feel it in a completely different way now. The fear. The power of it is merciless.

She tells. I tell. It feels good.

Not a day too soon
First baby born to woman with uterus transplanted from deceased donor

Not a day too soon

The first time they transplant an organ successfully, it´s said to have have been in 1954. The first time they try to transplant a uterus is far later, in year 2000. Still, most people in the field say that the attempt is done way too early and without sufficient knowledge. This because the attempt fails. In 2007, the Sahlgrenska Academy in Sweden invites researchers and experts worldwide to “The First International Symposium on Uterine Transplantation”. I’m there. During the meeting, they discuss all possible aspects of uterine transplantation – rejection mechanisms, immunosuppression, surgical technique, pregnancy and everything there in between. It is clear that there is a lot of research that remains before a human transplant can be carried out.

After more than ten years of research, the Swedish team feels ready. In September 2012, they operate for the first time on a woman. Me. The unique thing in their research project is that the transplanted uterus comes from a living donor. My mom. The operation is followed by a further eight. In total, there are nine transplant cases in their study, all involving living donors. The majority of the world’s scientists would rather see that a uterine transplant is done using a deceased donor. The operation is simpler and does not need to take the donor into account. It also makes more wombs available to women who need them. The disadvantage is that it is impossible to get a complete overview and history of both the donor and uterus.

A race within the race

Sweden is the first to report on the first successful uterine transplant. However, it could have been Turkey. A Turkish plastic surgeon wants to try to make the historic breakthrough and operate a few years before Sweden. He uses a deceased donor. An American transplant surgeon who participates in the Swedish operations also decides to operate with a deceased donor. None of them has so far succeeded. For the thing with uterine transplant (and quite different from any other transplant), is that the surgery is not successful until the patient becomes pregnant and gives birth to a child.

At a medical congress in 2017, scientists gather again to share their worldwide experience of uterine transplants. This time they are significantly more. It’s a loaded and somewhat secretive atmosphere in the room. Several countries have made attempts with transplants and rumors say that some of the women may even be pregnant. It’s a lot of prestige. A race. Everyone wants to be the one who is first across the finish line and with results that impress the others. Nobody wants to be the one who makes a fool of himself. 

Another team in the United States has done operations. So even countries such as Mexico, Brazil, China, Germany, the Czech Republic and Serbia. In addition to Turkey, which only transplanted one woman, most seem to have followed on Sweden’s example and involved a series of women in the study. It is a little too much by chance that it would be successful in one single woman. Some have used live donors, some deceased. Some have even done both. In order to really compare. To the research group in the United States, Dr. Liza from Sweden have been handpicked to maximize their chances. They do not become the first in the world to succeed in having a child after a uterine transplant, but later on the first in the United States. That´s not too bad. They are very quick to announce the news.

> Learn more: First U.S baby born after a uterus transplant

Brazil and several others do their homework before their surgery and do a study visit at the Swedish doctors. They, in return, gladly share their experiences. It’s nice. In Serbia, they are even included in the operation. The donated uterus comes from the patient’s twin sister and the transplant is unique in that way that no rejection medicine is required, since the twins have completely identical tissue antigens. Serbia becomes the country reporting the world’s first child after a uterine transplant between identical twins.

It’s good that it is done

The 21st century seems undeniable be the century when uterine transplant is finally on the agenda. I wish the treatment had come earlier. Listening to the doctors’ successes, I can not help getting a little sad for all the women who have not got the chance. Where the dream of children died because there was no uterus. But I’m also glad. I am glad that in those cases where research has taken time, it has also been well done. I’m glad that uterine transplants are done today. Happy for the future and all women who will be able to get a completely different starting point when their own womb fails them.

And right… At the 2017 Congress, Brazil announced that they, in fact, have a pregnancy. They have succeeded with what three before them failed. They have done the first uterine transplant, with a deceased donor, where the woman has become pregnant. They have been so busy concentrating on their research that they have not communicated it to the world until now. It honors them.

> Learn more: First baby born to woman with uterus transplanted from deceased donor

4 years of love, happiness and togetherness

(“Togetherness” is not a word, I know. It should be though :))

It’s our son’s birthday. For birthday present he has wished for a red racing car. Unclear what kind.  After a half-hearted searching, he instead got a Super Mario game and two floorball sticks. It was also ok. For his birthday party this weekend he wants to have balloons and an ice-cream cake of the King brand, because his friend had this on his party. Of course he gets it.

The big 4-year-old-day could not come fast enough, according to the son. I myself begin to experience what all parents are talking about, that the life with children goes by so fast. Up to now, everyday life has advanced so quickly that we sometimes have difficulty keeping ourselves above the water level. Between sleeplessness and diaper changes, there is no time for rest or reflection. It is nice to now approach some kind of calm, with more room for afterthoughts.

***

Miranda Hobbes in Sex and the City explains it well when she holds her baby after birth: “It’s like an elephant walked into the room”. It’s a very weird feeling to see your child for the first time. It’s not possible to take in. It’s also strange that the experience of me giving birth is happening in a room full of spectators, but I myself am staring into a green sheet on an operating table, with little ability to move.

Four years ago today at 09.38 he was placed 46 centimeters long on my chest. Henry. There and then we were parents. I cried. Not the rampant cry of happiness. But a trembling cry of relief when a giant tension lets go in the body. For my husband, there were a couple of tumultuous first days at the hospital by taking care of both of us, leaping back and forth between the wards. I was treated for my Caesarean section but also a nasty spinal leakage that made the whole environment feel like a crowded pounding engine room. Henry was treated for two not fully developed lungs that made it difficult for him to breathe. Skin against skin, with a lot of tubes around them, my husband sat for hours and held our son. Promised to always protect him.

It took me a few weeks before I really felt the bond. He lay next to me on the couch and I could not stop looking at him. My very own baby. His steady eyes looked deep into me and opened a stream of emotional feelings. After all we had been through – transplantation, IVF, embryo insertion, a 35-week-long pregnancy (which I did not really dare to believe) – it finally hit me. I am mom now. Tears of happiness ran down my cheeks and I whispered over and over again, “you are mine.”

It´s been four eventful years. Intense. Challenging. Joyful. Henry is, to say the least, a determined and persistent little guy. Stubborn. Emotional. Born with the greatest integrity and sense of right and wrong I have ever met with a child. He is careful, thoughtful, wise and incredibly loving – when he wants to be. Early we discovered that simply telling him what to do did not work, he needs to be in control of everything he does. He loves pasta, Super Mario and dressing up nicely in a shirt and tie. What he does not like are pushy people or when something differs from the ordinary. Most things of his everyday life must therefore be prepared and foreseen. Or encouraged. He requires a lot. But he also gives incredible much. In many ways Henry is completely unique – and in others he is just like any other child. Most is he … Henry. An amazing guy with a great mind of his own.

The little we knew about parenting when he was born, we were soon reassessed. Methods that work on most children simply failed to apply on Henry. In the beginning we were stumped, but today I am grateful. He has taught me patience. He has taught me about humility and respect even to the little people. Strengths and weaknesses in myself. Things I did not even think I would learn. Still, he makes me question everything I’ve ever believed in – in a good way. Being a mom to him is by far the best thing that has happened to me.

Today it’s hard to imagine what life would look like without him. Gone are mornings sleeping in and a relatively carefree life. Taking care of yourself. Gone, on the other hand, is also the void in the soul, the life as infertil. The anxiety about not become a parent. The twoness and being one with your partner have been replaced by a constant sacrificing of yourself. At dinner, he gets the last of everything although I’m still hungry and at tea time he gets the biggest cinnamon buns. When I’m tired or sick and the body wants nothing else but to lie flat on the couch, I’m sitting on the floor and playing with cars. Because he asks me to.

The same is with his little sister. The two are my world. My meaning. My love for them is unconditional and infinite. And my task as a mother is to always back them up. That and to fix balloons and ice-cream cake with candles, though I hate birthday parties. But I know it’s worthwhile when I see the happiness in my 4-year-old son’s eyes.

Happy birthday, my beloved heart <3 

This expected gratitude

I wrote that I’m grateful. Which is true. I have a lot to be grateful for. Survival of the cancer. The transplantation. My family. But I do not go around and feel particularly unique or special. It’s just not me. I´m not one of the coolest or smartest on this earth, but it’s okay. I’m happy if I get to be an average Joe. Just ordinary.

There is some kind of expectation (conscious or unconscious, what do I know) of someone who recovers from a fatal disease (or something else traumatic) that you should be so grateful to be alive. To live every day like it’s the last and not take anything for granted. In a relatively short period of my life, I tried to live up to it. Grab hold of my dreams and try to make sure my life was as eventful and meaningful as possible. Tried to enjoy every single moment. Eventually, I landed in that it just made me more stressed. So I stopped pushing myself. Stopped doing what others thought I should do. I realized that I´m the happiest when I have no demands or expectations on me. Quality of life for me is being able to do nothing. Regardless of cancer.

Going from infertile to having a greatly desired child holds the same idea of ​​gratitude. I’ve heard so many involuntary childless women say “If I had a child, I would never complain or whine over it’s hard”. I was the same. Until I had children. I can not answer how mothers in a similar situation live their lives, but I myself can not live up to the picture that, as (formerly) involuntarily childless must be grateful all the time. I get angry at my children. I am sometimes tired, sad or something else that makes everything feel overwhelming. Then I whine. That does not mean I’m not grateful for what I have.

The entire process from start to where we are now, we have gone through by taking one step at a time. Tried to keep us on earth and done what makes sense to us. I’m not going to start doing anything else now. This blog is not a long song of praise and neither is one of those mom blogs where everything is portrayed so idyllically. I want to write my story as it is, not what it suppose to be. Apart from we have gone through a uterine transplant, our life is very ordinary. Just as we want it to be.

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