Bruno - My Baby's Journey to Heaven E-Book

Martina Anger

• Herausgeber: Books on Demand
• Kategorie: Geisteswissenschaft
• Sprache: Englisch

Seitenzahl: 147

Veröffentlichungsjahr: 2024

Beschreibung

Bruno was the first child of author Martina Anger At the age of two months the family learned about Bruno's diagnosis: spinal muscular atrophy. His estimated time to live: a few months. In this book the author tells her story and their way to live with this diagnosis and all the changes that came along. By telling her story she wants to show other families with similiar stories, that they are not alone.

Leseprobe

Content

Introduction

New job, new house, new life

The pregnancy

It’s time

Hernia and abnormalities

The day of the diagnosis

The grandparents are informed

My first reflection after the diagnosis

Human and spiritual support

Change of scenery

The challenges of our environment

Reunion

A novena for Bruno

Helplessness of the grandparents

Hospice support

Bruno’s baptism

Who is comforting who?

The first health effects of the sickness

Equipped for more trips

With the new stroller in the Alps

Going to Lake Balaton!

Bruno gets a nasogastric tube

First effects upon breathing

Our new companion: morphine

Anniversary

The trips are over

Last rites

Day of death

The last night with Bruno at home

The first days after Bruno’s passing away

The funeral

Reading

Martin’s funeral speech

Bruno’s coffin on its last path

The burial

Reactivate social contacts

The thin line between happiness and sadness

A quick trip to Germany

Companions

Colleagues from work

Conversations with friends versus large gatherings of people

New volunteer work

A new destination: South East Asia

Nepal

Travelling through Cambodia and Vietnam with a group

Back at home

Bruno fulfills our wish

Valuable support for the following period of time

Five years later - What would the diagnosis look like now?

Telling our story

Timeline

Information to help affected families

Introduction

Since November 2016 I am also a member of a club which no one voluntarily joins: I am the mother of a baby that died.

After living this experience myself I got to know many other club members. Every single one of their stories is unique and touching. These stories are shared, sometimes just quickly along the way, sometimes in detail, sometimes on a stage in front of a room full of people listening to you, sometimes from one person to another while sitting and enjoying a cup of tea. Now I’m telling my story in form of this book. This is a chance to tell the true and entire story of my son without the need to shorten it or leaving out important details.

With this approach I hope to encourage other people and show those families who are in grief of a beloved child: you are not alone.

A story like this one is sad, of course. But I want to focus on all those things that helped and supported our family.

When telling such a personal story it is important to me to be honest and sincere. This is why I couldn’t leave out some incidents that caused pain due to some wrongdoing, and those affected might feel blamed. But mistakes happen and mistakes are just human. By writing honestly about these problems others get the chance to learn from these mistakes.

There are so many people who are indirectly affected when facing such an early death. They can feel helpless, be at a loss for words and might not have any idea of how to react.

I hope that by telling my story and the situation I was put in I can make a step towards making it easier to understand.

Especially important to me is the message: everything you feel is okay and right. What matters is the way you handle your feelings: are you falling apart? Or do you make the decision to accept your destiny, give in to the sadness you are feeling and become stronger through this experience.

Until I was able to say something like this in a confident way I had to travel quite a long journey. I will now walk you through this journey step by step. Once upon a time there was a surprising positive pregnancy test ...

New job, new house, new life

My husband Martin and I got married in September 2014 after more than four and a half years of being in a relationship. At that time, we lived in Graz and I was quite pleased with everything concerning my job and family. In springtime 2015, however, I had to face some challenges at my job. It turned into a terrible place to work at. I faced the problems and tried really hard to solve them but it cost me a lot of strength.

At the same time, Martin and I started to reconsider our plans for the future. Originally we wanted to wait a little while until we would have children, but then we decided to bring our wish to have children forward and to give it a try. In the end we realized that we wanted me to get pregnant so desperately that it just did not work. At the same time, I ran into a dead end at my job and saw myself forced to find a new one.

I was lucky to find a new suitable job quite fast. The first day of my new job was September 1st, 2015. Since we did not succeed right away with our wish to have children and with a new job in sight we decided to put these plans on hold again. Meanwhile, summer came and we planned to go on holiday to Iceland in July 2015. We love to go to countries further up north to escape the heat for a few days during summertime. And in 2015 there was quite a heatwave in Austria while we enjoyed our two-week vacation in Iceland. Glaciers, wind, waterfalls and the raw power of nature, even a little snowstorm made our trip very enjoyable.

I returned back home from this trip full of vim and vigor. At this time, we lived in a little rental apartment in the city of Graz. We had already talked about settling in Graz or the area around it, therefore we had decided earlier that year to stop paying rent and rather pay back a loan for a home of our own. We bought a house in the south of Graz in a town called Premstätten. We moved into our new home right after our holiday.

We had plenty of time to furnish our new home. I even had the entire month of August available to do whatever I wanted before I started my new job in September. Unfortunately, I lost my drive and felt sluggish. In the middle of August, I even realized that I had a weird stomachache every now and then. I went to the doctor and got some medicine against overacidification. But it didn’t help. I waited a few more days but it just didn’t get better.

August 30th was a Sunday and on that day the stomachache was quite intense. Since I didn’t want to risk to go to the doctor on Monday and having to take a sick day on my first day on the job I wanted to clear things up on Sunday. We drove to the hospital. After we arrived there the nurses first thing sent me to the bathroom with a pregnancy test. That was all that was necessary to find out what was going on with me: the test was positive. Martin was smiling from ear to ear because he was so happy. I was in shock and couldn’t wrap my mind around the news. Instead I was focused on a new chapter of my professional life. Having to deal with a baby overwhelmed me and my thoughts completely at this moment. Overall I started to worry a lot about the impression I would make: starting a new job and telling right away that I’m pregnant. But my colleagues and my boss surprised me with their positive attitude. After all the trouble I had to go through in my previous job this experience was heartwarming to me. I found myself in a very pleasant environment with wonderful colleagues who congratulated me and gave me the chance to show them that I was responsible and hardworking until maternity leave. I was so relieved.

The pregnancy

After I had assimilated the surprise of a positive pregnancy test and got comfortable at my new working place I was able to embrace the fact that I was pregnant.

The pregnancy itself was easy and I didn’t experience any problems. I am not that kind of woman who proudly presents her body all the time and I never liked to reveal myself. I always rather kept in the background. The pregnancy obviously changed my body. All the change made me even more insecure. I admire other women who are happy and able to proudly show their beautifully growing tummy. But I am a little different and rather hide, especially when I feel insecure.

Anyway: healthwise I was doing great and my baby was developing perfectly fine. During the ultrasound we learned that we were expecting a boy. And concerning his character we and the gynecologist suspected that he was an unhurried little boy. He was anything but feisty and rather slept through the ECG examinations. Therefore, he often had to be woken up by shaking my belly. I refused any additional ultrasound or the organ screening. I had enough faith and confidence that everything was going to be okay. I did not want to experience any additional pressure by undergoing more examinations than necessary. I rather wanted to stay relaxed during the remaining time of my pregnancy.

In preparation of the birth, Martin and I participated in a HypnoBirthing® class, held by a wonderful midwife. The class helped me gain more trust in my own body and together with our baby, overall I felt well prepared for the birth. I actually started to get excited and any doubts of the first days were finally and completely gone. This kind of self-confidence helped me during my doctor appointments, especially at my gynecologist. Every time she told me that my child was too big for a natural birth and that I should prepare myself for a C-section. But at this point I was already aware that the estimated size and weight of my baby did not indicate anything about the delivery. Plus: my son had a long slender body and he was in the right position (head down) for a natural birth. Even in the hospital in Deutschlandsberg, where we planned the delivery, I was told not to worry. During examinations there my plans for a natural birth were fully and without a doubt supported. After this experience I switched to another gynecologist. It is a great relief to know that you have the option for a C-section in case of an emergency but as long as a natural birth is possible I would always choose a natural birth.

For the time after the birth we chose a midwife to support us during the first days at home. We planned to have the delivery in the hospital but for the first days at home we wanted to be supported by a midwife. This way we were also allowed to go home earlier from the hospital. To talk about everything necessary we met the midwife beforehand, while I was still pregnant. During those conversations, she recommended a very helpful book about breastfeeding. While reading this book, once again I felt encouraged to follow our own vision.

To make sure that my environment would not put pressure on me by constant phone calls and questions in case the actual date of birth were much later than the calculated date, my husband and I didn’t tell anyone the due date (except for our employers). The due date was April 16th and when anyone asked me I just said May. Until May 1st we were sure that our child would be born and we would be able to enjoy our time until then.

Two months before the calculated date of birth I started maternity leave. At the beginning of my maternity leave Martin and I spent a relaxing weekend in Trieste, Italy. Two weeks later a friend of mine from Stuttgart, Germany, who I had not seen for quite a while, came to visit me. This way the time until the birth of my son was filled with very happy moments.

At the beginning of my maternity leave with Martin in Trieste.

One month before Bruno’s birth, a friend from Stuttgart came for a visit (here together at the Zotter chocolate factory in Bergl).

It’s time

On Monday, April 11th, 2016, I had a checkup at the hospital in Deutschlandsberg. Everything seemed to look good and the ECG-recording showed a few contractions but I didn’t feel them yet. On the next day in the morning I told Martin that I started noticing the contractions. Therefore, I asked him to have his cell phone ready at work in case the feeling was getting more intense. The contractions actually did get more intense. After two hours I called my husband to come back home because the contractions became more and more intense and I didn’t want to be alone anymore. We decided to drive to the hospital right away. Around noon we arrived at the hospital in Deutschlandsberg. The examination there showed that my cervix was dilated one centimeter. So it looked like it was going to be a while. Until 4 p.m. we were sent for a walk outside around the hospital. Then I finally got into the delivery room. We had the impression that the process was too slow for our midwife. Thanks to the HypnoBirthing® class and preparation I stayed very calm and we could also see clearly on the ECG that our baby was calm as well. Nevertheless, our midwife consulted a doctor. Luckily, the doctor evaluated the birthing process and encouraged us to take our time. At this point she had no intention to interfere.

The birthing process was getting along well and it was already midnight when the cervix was finally at ten centimeters. With a little push with her hands, the doctor finally helped me through the last contraction. Our boy was born.

It was a few minutes after midnight, therefore already April 13th. We couldn‘t stop looking at him. He was finally here. Our son.

His face was not wrinkled but round and soft. His big, dark eyes looked around curiously and soaked up all the new impressions. I have a distinct memory of his beautiful, perfect, long fingernails. The feeling to suddenly have a little person in your arms was unbelievable.

My belly looked funny and sunken. It was all I could see while the episiotomy, that had been made during the birth, was stitched up again. My husband sat right next to me, holding our son. I captured this moment by taking a picture with my cell phone. I can still look at this picture full of joy and pride.

I could hardly wait to hold my baby in my arms again. As soon as my wound was stitched up and we were alone with only our midwife in the delivery room we discussed our baby’s name. We already knew that we would have a boy and we had three names in mind to choose from. We wanted to make our final decision once the baby was born and we could see him. I looked at him and instantly knew: this is Bruno. Martin needed a little more time to think about it but was also happy with our decision.

Bruno and I were well cared for in the hospital during the first days. Three days later Martin and I took Bruno home. We still had to get familiar with everything like handling the babyseat or just stepping into our home. We just weren’t used to having a little baby around that needed our help 24/7. It was so funny that we did not even know where to put the babyseat with our little one sleeping when coming home. The quick development we had made to make our home nice and comfortable for the three of us seems even more amazing to me. We spent most of the time in the living room on our pull-out couch. I already changed the name of our couch to “my puerperal couch”. The midwife we had hired to support us at home during the first few days cared for us very professionally and lovingly. She had a friendly ear for all our questions and issues concerning breastfeeding, baby’s gain of weight or involution of my uterus. We lived in a wonderful happy bubble. But the bubble lasted only for a little while.

Moments after being born: father and son.

Cuddling at home with mom.

First picture with mom and dad.

Photo that I made of Bruno in a bear costume for the thank you notes our friends and relatives received.

Hernia and abnormalities

The midwife who visited us at home during the first few days one day noticed a little lump in Bruno’s inguinal region. She sent me to the pediatrician who diagnosed an inguinal hernia. From a medical point of view this is no big deal and happens very often. Later I learned that my husband had also had inguinal hernia when he was a baby. Therefore, Bruno had inherited a higher chance to have this problem.