Heartbroken

Happy Birthday ....

2010-06-10T18:40:00.001+10:00

Happy birthday, Sweetheart. Couldn’t help but to feel sad last night. My heart just longed to hold you. How can I explain that I still miss you after all these years? Easy. You are still a very part of me. Will always be. You changed my life in so many ways. I started a new job just about three months ago and give it my all. You know I am passionate in all I do. I love helping others but most of all I love putting a smile on their faces. Reaching out and just being kind makes me happy. Sometimes I am intensely aware that you are near me. I love that. The thought of us being together someday brings peace to my heart. I love you. Love Mommy.

A new year

2010-01-10T20:55:00.000+10:00

A fresh start. I need a fresh start and I am working on it. So much has happened inside me and believe me when the ‘time’ is right I am sharing it right here.

Anger, frustration and on top of it feeling depressed most of the time… Yes I have been terribly depressed too. I am saying “have been” because I am getting better. I of all people should know better – I always reach out to those around me give advice here and there but was unable to help myself.

So once I have my feelings on paper I want your two cents. Seriously. Talk soon.

The word is heavy…

2009-10-28T08:23:00.001+10:00

I feel really, really heavy this morning. Heavily pregnant with a truck load of mixed emotions. This morning we took mum to the airport. Instead of tears I felt numb. Maybe it was because I am so used to suppress my true feelings. Why? Why do I do this to myself? I ask myself that question many times. Anyway amongst other reasons I do this not to upset my darling husband. He can’t handle it when I cry. I am writing this hoping it will make me feel better.

Mom’s visit did not turn out the way we all hoped it to be. Her ‘illness’ had a lot to do with it. In a way I feel we both didn’t appreciate each other. I so wanted to spoil her with little things but I couldn’t get myself to do it. I feel so sorry for her. Honestly. I couldn’t get myself to go in her room. When I did I felt sick. I wanted to throw up! Deep in my heart I know I might not ever see her again. It is just as if reality struck me then. I know I shouldn’t feel guilty but I do! Blood is thicker than water. I so wish for her to be happy and healthy. She deserves it. Everybody does. I wanted to tell her that although we don’t see eye to eye that I still love her and that she will always be my mother. God knows.

I am beginning to feel like a hollow log… Am I beating myself up over what could have been? Ugh I feel lost! I need to find myself. Why is it that when I feel suffocated by feelings that I want to go home? I just want to give up on life itself? Has anyone had the same experience over and over again… as well?

How am I going to face that room? Her perfume still hangs around. I feel her there. It reminds me of many years ago. How do you face these things without cracking up inside? Please say a little prayer for me today. Thank you.

Some more insight after the storm

2009-09-25T13:44:00.001+10:00

May I start by just saying what sparked last nights fight. JJ and I had a different opinion about an incident that happened with one of the neighbours. We didn’t fight but disagreed on how it should be resolved. Mum then just jumped in from another angle accusing me of handling the so called incident “aggressively” and all of a sudden I am aggressive in all I do and say … I couldn’t believe what I was hearing.

This morning when I woke up, I was angry. Anger is a symptom of hurt, I know. My husband worked late in his study room and ‘surprisingly’ wasn’t upset with me. (I mean after the lies she had told him about me and my life so far. As if he knows nothing about me. Just for the record: I have no skeletons in my closet) We got up early as usual and went for our morning walk. Our time to share and talk about whatever’s in our hearts and minds. When he started talking about last night I interrupted him and told him not to even expect me to apologise to my mother. I am not going to, not now not ever. She has always forced her ways on me and she doesn’t have that power anymore. She did that when I was little but still tries to get away with it. Even with the small things like how I should wear my hear and what I should dress… rah rah rah.

She is indeed a tortured spirit. I tried (many times) to help her and to be precise: for the last eighteen years. I felt compassion towards her but right now I pity her. Let me try and tell it all in a nutshell.

She knew before she even married my step father that he had an alcohol problem and that he was a psychopath. He was a kind and super intelligent human being WHEN he was sober. He was a professor at University and a well respected one too. He had a very dark side which revealed itself when he took one glass of whiskey. He would start by having one glass of whiskey before lunch go to uni and finish the bottle from 4pm. During the evening he would start his verbal abuse. Sometimes that could even carry on till early morning. Even being a little girl I knew that that was the lowest a person could go. He always started by telling her she has a placebo brain and then he would go below the belt…

It was so bad that I couldn’t wait to get out of the house. Three days after my year 12 exam I moved out, got a job and started working. I could have gone to study anything my heart desired (for FREE) but I couldn’t bear the thought of living in a monsters house. (I was only in boarding school till year 10) There was a time mum left him but he would go after her begging and the empty promises lured her back.

We had a game farm too, so after he semi retired they moved there permanently. They had to improve their lifestyle there which meant the house was rebuilt while they lived in a caravan. This is where the vicious cycle continued - she worked like a slave to escape his abuse. She would fix about everything in and around the house, help build a stone wall with a servant they had …. I could go on and on. My stepdad couldn’t do anything with his hands – he was all brain. Nothing wrong with that. Instead of getting professionals to do these jobs, mum did it. She had to cook all meals on an open fire -no electricity or gas stoves, not even phones. She even started a huge veggie garden.

Mum has had 4 back surgeries and 3 neck surgeries of which the last one was a total failure. She has a steel plate in front of her neck which causes her terrible discomfort. She has since seen numerous specialists and everybody tells her it is too risky to remove it. Although not unbearable she endures a lot of pain some days. Where does the psychosomatic illness come in? Well it started many years ago. She has been abused for so long and she started ‘enjoying’ the sympathy she got from some family and friends. One minute she would complain about having a sore neck and when you address it she would then say she thinks her lungs are going to give in. only hours after she would say she thinks her heart is going to fail because of ‘high blood pressure’ … Many things go ‘wrong’ in a single day. All in the mind. She would sit here and complain about how awful she feels only to be up and about the next moment we are out shopping.

What does one have to expect if you think and talk negatively all day?

I remember how she tied to manipulate me when we were living together. After I got divorced from the father of all my children I made the biggest mistake by moving in with her. She sold the game farm and bought ‘me’ a beautiful house. (I say me because it was registered in here name) She would ‘mother’ me and my children. When I went out to visit friends for a day, she would be ‘gravely ill’ when I return. I always asked her why she didn’t call the ambulance if she thought she was going to die. Why wait for me to return only to take her to the ER? We would get there only to hear she is fine. This happened many times.

Eventually I got fed up and moved out. That is where the small rift between us got bigger.

Before I moved out I confronted her in a loving way about her so called illness. Her girlfriend was there together with her husband. I wanted them there so she could not go and spread lies about me. She always ran to her family. Her sisters. They are dear people but by now I am not sure what they think of me. Don’t care anyway ‘because I know the TRUTH. I told her straight forward that if she continues to pretend to be violently ill, the day would come when she really needs an ambulance – won’t take it seriously and she might die.

She needs help! Of all the doctors she has seen not one of them has the guts to say to her she needs a mental health check up. Maybe they just love the money they get from her or maybe she hides all those symptoms cleverly?

I have told the family and they agree her illness is psychosomatic BUT it’s because of all the abuse and hard work. Yeah but what do we do about it? NOTHING.

If I tell her she will twist and turn it so she looks like the victim. I have told her before (many times) that when doctors can’t help we need to look further. We have to remember that we are first and foremost SPIRITUAL beings. We have to treat the spirit and it will manifest in the body.

There is so much more and I am getting tired of typing. So what has happened this morning? JJ is off to see his clients and I cleaned the house, did the laundry and moved in front of my pc… All I got from her this morning was a forced “G’morning” and a dirty look… I saw her writing post cards then putting them in envelopes. Letters to the family?

Her original plan was to go home on November 12^th…. I’m praying it will be much sooner. Am I willing to talk to her? Sure, but it stops the minute she starts yelling or talking to me as if I am 11 years old. Only time will tell what will happen next. I’ll let the dust settle and go as I am guided.

This post shouldn’t even be on my baby’s blog. It’s like polluting something pure.

I need a bandaid...

2009-09-24T19:12:00.003+10:00

It is out of pure desperation that I do this post... secretly hoping no one would read it. I just have to vent! God knows! Most of my life I tried to be so strong, to put up a face! It all boils down to control! I hate being out of control... it makes one feel useless! That is the last thing I EVER want to be. I am so sick of pretending everything is fine. It's not! I am under so much stress and I feel so depressed at the same time! Yeah such is life, I know! Sometimes it just gets too much! Tonight is one of those nights.... I miss him!!!! I miss him so much that I want to be with him. Right now! My life is miserable! Just when I thought things are really working out in my life something stirs it. Is this a pity party? Maybe but I have to say what's in my heart.

I have never really been close to my mom. Yeah I know in My Story she did break the sad news in a wonderful way and I am grateful for that. But other than that the world revolved around her. Her unhappy childhood and the fact that she has been verbally abused, in the worst way may I add, by my step father. For twenty three long years! She kept up with it! His death more than ten years ago ended it. Why do I have to pay for her misfortune? She chose to stay with him all those years. She had all the help in the world to get rid of him - meaning divorce... but she didn't. He left her psychosomatically sick....aaargh it drives me nuts! She came for a visit which I thought was going to do her the world of good. Just the opposite happened.

We had such a fight tonight and she blames all her misery on me! All the stress etc in her life she says was because of me... Don't worry I don't take that on. She is in a vicious cycle of self destruction and to my opinion her own worst enemy. I did everything to help her ease her pain but she prefers to be the matyr . She accused me of silly things which I think is too childish to mention. I am beyond hurt. Is it a sin to say I feel nothing but pity for her? Am I being to hard?

I am so over everything! Why can't I just go home? My children are big enough to make a good life here without me. Look I am not being suicidal. I am just over life here on earth. I want to cry my heart in pieces but the tears is all stuck in my throat! I am so dissapointed! She always belittles me when I least expect it. Look, I felt the rejection long before I was even born. According to a family member she didn't even wanted children but to please my dad she had me. When they got divorced (when I was barely five years old) she let me live with him. He insisted. He loved me deeply.

To make a long story short, we sort of patched things up. She wanted me back and when she got me back she married my step father and sent me to boarding school! I hated her for doing that. I was barely 9 years old and I had to do my own laundry... I remembered how hungry I was on weekends when everybody else had gone home. Too painful to get into. I want to go home.

Where I am loved and cared forever. Unconditionally.

She is homesick and when she said (weeks ago) she wanted to go home we had to show her the tickets for André Rieu's show. I thought she is going to do wagon wheels but instead she just said we should't have bought it in these tough times... I was totally shocked and didn't expect such a reaction because she adores André Rieu.

To top the cake she even told my husband lies. Oh and she dug deep! That's right when she leaves she must just remember to take the knife in my back with her. I am not bitter. I am so sad. I were so happy to be a million miles away from her and the family but how am I going to manage the rest of her holiday?

She is such an unhappy person. She choose to be. She is always negative. She talks negative and bags others she doesn't even know. You can't watch any program or movie with her because you'll hear everything about the actors' looks, etc I even tried to cheer her up with a funny movie the other day but she made me stop it halfway through, saying it's not funny.

Because of her 'illness' I made an appointment with a qualified massage therapist - a wonderful session of 1½ hours! Hmm the 'happiness' only lasted a couple of hours.

How am I going to get through this night? I know I shouldn't be offended. But I am. I know what the truth is. I am just so very tired of this crap. I don't deserve it. I want to go home. My heart is there anyway.

Prayer Request

2009-09-16T16:12:00.001+10:00

This request is long overdue. Fellow DBM’s please take time to pray for Jen Jen who has been hospitalized for the last 10 weeks of her pregnancy. Jen Jen is a mommy to an Angel baby, Lily Angeline (http://lilyangelinesmommy.blogspot.com/) now expecting a miracle baby boy: Cooper. Please pray and trust our Lord for Jen to maintain a healthy uterus so Cooper may be born full term and super healthy. Read about her journey at http://asurpriserainbow.blogspot.com/ and don’t forget to encourage her daily by leaving your comments. Bless you all.

Being honest

2009-08-31T15:52:00.003+10:00

It wasn’t too long after I have said goodbye to my angel baby that I began to think about having another. How he will look like and most importantly, how he would fill the horrible emptiness inside me. I know I was horrified when someone said right after he died I should go ahead and have another, but maybe they were right. Maybe I could ‘replace’ him. Call me selfish. I agree with Holli (http://lifewithoutbrenna.blogspot.com ) there were times when I pitied myself. I felt like an empty shell. Worse: A cracked one. I thought that having another boy would soothe my wound and make it heal. How wrong could I have been! When Marlize was born I was happy, honestly, but it didn’t do anything for the hole in my heart. Even after Vanessa was born you know I fell in a deep hole of depression. Yeah there were other factors contributing to it too. When my son was born afterwards I must admit the wound started to heal. Please don’t ever think that I love my girls less! I adore them.( I always wanted a boy and a girl. Now I have both of each.) Over time I started to have a peace in my heart that I could not explain.

I still had my days where I missed him and yes, I still do. I soon realized that his place in my heart could never be filled by another. Having three others and especially a boy afterwards shifted my focus. Instead of having that heavy sadness in me I moved on to another ‘level’. Reaching another level I hear you ask. Well, it’s just my way of conveying what I experienced. Just as much as I love each of my children in a different way, they have their own special place in my heart….

I just wonder how other DBM’s cope losing a baby after they had other living children? What makes it ‘better’ for them? God knows, if I didn’t have any children after losing Johan, my life would have been meaningless. So how do other momma’s and siblings cope when their youngest dies? Which scenario is the worst? I once asked Katherine (http://expectanthearts.blogspot.com/) that same question. I don’t think one ever stop missing them. Not in this live time.

Regrets

2009-08-30T16:49:00.000+10:00

Don’t we all have them? When I read the post on JenJen’s blog ’22 weeks”(http://lilyangelinesmommy.blogspot.com/ ) I couldn’t help myself thinking back… You know, it seems like all DBM’s* experience the same feelings, thoughts etc, sometimes just in a different way. Just for how long did I punish myself having regrets about a lot of things I could have done differently? The answer is for many, many years. It wouldn’t have changed the outcome. I think in most cases we were all in a state of shock, or denial perhaps? Could that be why we have regrets? None of us think the unthinkable when we are/were pregnant. All of us are too excited and in awe just thinking that there is a little miracle growing in us. We have baby showers, buy the cutest clothes, not even mentioning preparing the nursery in the finest detail…

If and I say, if I could have gone back in time I would have held him most of the time. Showered, smothered and drowned him in my love. Told him how much I love him, all the time. He was a winner. The first sperm to reach mommy's egg. He was a little fighter. He was a little miracle… with a broken heart. He was his mommy’s apple of her eye, the core of my heart – her long awaited Gift from God.

The question is, would I have then be more prepared to let him go? My heart goes out to each of you. Love

* Dead baby momma's

My thoughts are with you

2009-06-24T17:15:00.001+10:00

Lately I am finding it so hard put down in words what I feel… I mean the ‘right’ words. Anyway I was following up on Lynda’s blog (http://johnnygiovanni.blogspot.com/) and yeah, I got really emotional. She is so heartbroken. I told my eldest daughter about her (Lynda) also that I honestly wish I could just be there for any dead baby mommy in need. I mean be there physically. I would just hug all the dbm’s and let them be… I would heal all the heartache, pain and emptiness. (If only I could!!) It saddens me when I read or hear about dbm’s because I know in my heart what road lies ahead. I am so thankful that I have come so far… honestly. There were times when people would say: time heals ….. I would just want to fast-forward TIME!!!! So here I am… and thank God for that. I then also told Marlize that I would want to tell everybody that the sun would shine… again. Extreme sadness won’t hang around forever! I also said that having them made me heal too… I had to focus on them and spend all energy I had on them. I remember on baby Johan’s funeral my dearest god mother gave me a beautiful bouquet: all the flowers were pure white and it had a bright yellow ribbon in it…. She told me: Sweetheart, although it doesn’t feel that way, this is to let you know the sun still shines. Well out of the blue I got all teary and the words got stuck in my throat. After a minute I gained back control. Yeah I was the one who thought just a moment ago that I was made whole again after all these years. Just shows the crack or scar will always be there. But how sweet was that of my dear aunt Rita? I love her; she is such a beautiful person. I wonder if she knows what that meant for me. All of you reading this: a beautiful bouquet of white lilies with a bright yellow ribbon especially for you. J

The other three ..

2009-06-20T18:02:00.001+10:00

I couldn’t resist posting photo’s of baby J’s siblings. Aren’t they gorgeous? I am sure he is very proud of them. It’s not the best photos but you know how it goes: when you want a specific photo you can’t lay your hands on it… So instead I used these. (Not sure if they’ll approve but they won’t know! LOL) Remember there weren’t digital cameras around in those days; most of them are scanned images.

Just a small note ...

2009-06-18T20:32:00.000+10:00

I can hardly believe that today, 27 years ago you left us. It doesn’t feel like it has been that long ago, it happened just the other day… I am not sad but there’s stillness in my heart. I haven’t spoken a lot either simply because I don’t have much to say. I find it extremely hard to express what I feel in words, apart from the inner peace. I lit a candle, a white one, to acknowledge that I feel you close to my heart. I love you. I miss you. Mommy

My Story

2009-06-10T12:28:00.000+10:00

When I became pregnant with my first child, I was engulfed with both excitement and fear not knowing what really to expect. Either way, this baby was more than welcome! I did all the "right" things a mom to be had to do.

Once the news was out someone recommended I become a patient at the local State Hospital. They had the best Maternity Section. I don’t know why I have ever listened to that person because we already had great medical insurance in place with better options. Although the local State Hospital had an excellent reputation, my experience would have been less traumatic if I had gone to my then known General Practitioner. Do I still regret it? Yes but unfortunately it still wouldn’t have changed the outcome.

Although a bit nauseous and tired in the first three months I was perfectly healthy and fit. I normally had low blood pressure and later became a little anemic but even that was considered not too serious. I had my visits on time till my weekly ones approached. Everything seemed to be quiet normal. I only had three ultrasounds of about 2 minutes, which was the average then. The last one was at 36 weeks on June 2^nd. The only thing out of the ordinary was that the baby was in breech position. We couldn’t even see what the gender was. All seemed normal. Instinctively I knew the baby wasn’t going to turn around, there was not enough space. I didn’t worry about that because I was in safe hands, right? I was uncomfortable with my ‘big’ belly but what else could one expect having a short upper body and being petite. So far I have only gained a 12kg (± 26lbs) and was considered very healthy.

I had a surprised baby shower and about everything was ready for that much awaited bundle of joy! Boy and was it going to be spoilt rotten! It was the first grandchild on my mothers’ side and the 7^th on my husband’s. If this was going to be a boy it was going to be the first to bear the family name. We were ticking the days and excitement was building. I had to quit my job because of an internal legislation which permitted staff only to work up until 32weeks. I was perfectly happy with that because by then I have become too tired and needed to rest. (What a great excuse it was!) I could do the normal house work and then have time to myself too. I read all about babies, having them and all about parenthood. I was prepared! Instinct would kick in so to speak and I was relaxed about the demands a baby have. I wasn’t stressed about the birth itself – millions of mums around the globe had babies for centuries and most of them survived. Right? Why should I then fear this wonderful experience? I hadn’t missed any pre-natal classes and informed my husband in detail. He could remind me what to do and also go through the stages with me. Besides he was very supportive and a lovely person.

Thursday 10 June 1982 – The day* that changed my life forever

Then it happened: Unexpectedly on Thursday June 10^th at 5am my waters broke. I must have been dreaming but the next minute I came to my senses I was standing right beside our bed. I was only starting my 37^th week. We got ready to go to the hospital. I only had to slip a cozy gown on. I had my husband open my suitcase so I could quickly check if I had everything packed. Funny how things turn out when you had months to prepare for the event in the finest detail, only to have to make sure that everything is still in place. The most important thing was clothes for the newborn when we are discharged, right? How exciting!

As we left our apartment we got into the elevator and I vividly remember when I asked my husband to give ‘us’ a hug as this was the last time that he would do so with me still pregnant. That meant so much to me. We drove slowly to the maternity hospital – after all we were only 10 minutes away. We thought it was funny when the song on the radio had a chore with the words ‘free me’ … I was both excited and a little bit scared.

Arriving there I was made comfortable in one of the delivery rooms. I was given a quick internal by the nurse to see how far I was dilated. Contractions were about 20 minutes apart. After a while the doctor on duty came to see me. (Till this day I don’t know who he was) I told him about having an ultra sound only a few days ago and that the baby was according to me, still in breech position. He was very abrupt and the next minute he had his hand in my you know what reaching as far as he could. It hurt badly and it reminded me of a Vet doing 'what you call it" on a cow. I was angry and upset with this. Dr Jerk left and after a while returned only to tell us that he needs to send me for x-rays. So there I was: off to x-rays with a big belly and having strong contractions 15 minutes apart. The x-rays confirmed what I already knew and the contractions started getting much stronger. Dr Jerk explained to my husband that he is now going to give me an epidural for the pain and also wants me to dilate completely. If the baby’s head got stuck they will be on stand by for a C-section. Instinctively I knew this was horribly wrong but felt helpless. After all I was supposed to be in the best hands? I was so disheartened and started crying. By now my baby’s feet was ‘hanging out’ and I was told not to push at all. All my husband could do was to hold my hand and comfort me. The worst has not even begun. The needle of the epidural was inserted and I found it so hard to bend my body forward – my short upper body made it even harder. Every now and again a nurse would come to check on my progress. After a few minutes my lower body was supposed to start feeling numb but instead I had an allergic reaction and I felt as if I had been pushed into earth… It was so weird because I remember telling my husband it felt like I can’t breathe and that it feels like they have put a ton of bricks on me… it was a heaviness I couldn’t explain. I could still feel the contractions and I found it even harder to withhold the urge to push. Tears now flowed uncontrollably and although my husband tried his best to comfort me, I just snapped at him. The best he could do was to give me a towel to bite onto.

It was just unbearable to try and not give way to the heavy contractions. Dr Jerk came back only to ask whether a couple of students may join us to witness a breech birth. I was very upset and just refused. That was very insensitive and it made me feel like an Experiment. I was vulnerable. At this stage the nurse showed my husband our baby’s feet… and I could barely keep myself together. I still cried a lot and I learnt firsthand what the true meaning of distress was. Then when I thought that I was going to give up the team walked in and I was given the all clear. One push and he announced himself with small cries. This was the best experience of relief one could ever have had. It was 11H26 am. He weighed 2.555kg (5 pounds 6 ounces) and was 47cm long (18.5 inches).

They whisked him away and I asked my husband what the sex of our baby was. Then they wrapped him and handed him to my husband. After a while I held him for a few seconds. They took him away and served me with lunch right there. I wasn’t hungry at all but in euphoria of happiness!

My husband kissed me and said he was now going to call everybody with the good news and that he will see me soon. When I was put in my bed I felt how numb my body has become… I had little feeling in my lower body. Was this the epidural only now kicking in? Who cares because I must have been the happiest new mom on earth!

At about 4pm I had my first visitors – my dearest mother-in-law came to see me together with my husband. Apart from receiving flowers she gave me a small yellow jersey and a card that matched just that! She was thrilled for us. My mom had been away on our game farm about 5½ hours drive from Pretoria. With no telephones in that area my step dad was going to drive there on Friday, so they would be back on Sunday.

Later the nurse came to remove the epidural from my back. At 7pm dad came to visit together with my step mom. He was upset and shocked to see my face swollen and asked what had happened. Step mom quickly told him that he shouldn’t be asking me because it was clear that I did not give birth easily. He was very concerned and I told him that I was alright. I couldn’t wait for visitors to leave because I wanted to go see my precious little angel again. He was so beautiful and had long, straight black hair. I was amazed at just how perfect he was. We decided to give him his Daddy’s names.

The next day I got up early, had another great shower and went to see my precious baby before I had to have my breakfast. He was still in his incubator and I saw he had a tube through his nose. He was sleeping peacefully. Thinking about it now I realized how odd everything was. No one informed us that they suspected something wrong or even talked to us openly about his state of health. No one even gave us an indication of how long he was going to spend in NICU. I on the other hand assumed that it was going to be a few days up and until he gains weight and feeds well. Question I ask now was why didn’t I demand the truth? Simply because I did not suspect anything wrong. After breakfast I went to see him again. This time I tried to breastfed him. He would suckle a while and just doze off again. We decided it was best to express my breast milk so he at least gets a chance to build his immune system. This would become my routine for the next few days. I would only go up to my room to have something to eat or rest a bit and then go back to sit beside my precious bundle of joy. I would become so familiar with two songs in particular which played on the radio in NICU: Elton John’s ‘Blue Eyes’ and Simply Red’s “Holding back the years”. Every time I laid eyes on my little boy I couldn’t help myself but to fall in love all over again. One morning a father would rush in NICU with the doctor holding their newborn – the doctor had him on the examination table and they tried to revive him but they couldn’t. It was upset and thought about him all day. I couldn't imagine losing my baby.

By now I got to know some of the nurses and even a little about the babies as well. Next to J was a beautiful timid baby girl born with Trisomy 18 and the outcome did not look good. I knew so little about it then. Amongst others there has been a tiny boy who had been born at 26 weeks gestation. He had been there for just over 2 months and was well on his way making good progress. It must have been quite an ordeal for his parents. I couldn’t wait for my boy to be out of NCIU and for us to go home! His feet wasn’t so swollen and looked perfectly normal. After the birth it looked like Noddy’s feet. My poor darling – it must have been hard for him too. I love him. For the first time in my life I had something no one could ever take from me. I was an only child and I am going to make sure he’s not! I would love to have a little sister for him too! Phew am I crazy? After all I have been through here I was thinking of doing it all over again! Okay so maybe when the time is right he will have a sister. Only this time I will make sure I am in genuine good hands. I want the best gynecologist…. I was dreaming big time … I was so happy and it had never felt so good! Apart from being tube fed he looked great! His tiny hand held onto my finger as if to show me he knew I was there.

Every day I got more excited knowing I was a mommy with a beautiful little boy! My favorite sister-in-law A came to visit with her husband and two small children. Because they weren’t allowed inside we sat in the garden. I was also looking forward to see my mom who was now on her way back to Pretoria. Yeah this little Rascal of mine surely surprised us by being born 3 weeks earlier! Who cares, I was never more ready for him in my life! Mom couldn’t wait to come and see us so when she finally arrived late afternoon I was too eager to show off her first grandchild. I took my little one carefully from his incubator, wrapped him up and showed him to mom, looking through the glass. A while after that the test results came back and my little one had to spend some time under the lights – he had jaundice. Another setback I thought but I was assured that they normally only spend 3 days under the lights.

As the days went by I spent more time with my baby and talked to him. The NCIU were busy as usual more babies came in and more were discharged. Only a few stayed behind. The others were mostly just there as a routine observation as they were born by C-section.

One morning just after I had my breakfast I went down to see my boy. I was so shocked to see that they had what looked like a movable x-ray machine over my baby’s incubator! I asked what was going on. The staff just said that he is a very sick baby and they are running some tests and that they would talk to us soon. I should in the meantime wait in my hospital room. That was the first time anyone said something like that about my baby’s health! I couldn’t understand and my head started spinning, all of a sudden a million things went through my mind. Why? How? I couldn’t get hold of my husband and panicked then called my mom. (If I remember correctly my husband was sent away for the day to do some road tests for his work). By now I sobbed and told her what I had seen and what I was told. Why weren’t we informed before they ran the ‘tests’? At least we would then have been prepared for whatever the outcome would have been. My step dad had lots of contacts in the medical world. One of his cousins was Pediatrician. I asked mom to contact him to see if he could get more info from the hospital. Maybe he could even see if he can have a look at our son first hand. I spent the rest of the day sobbing and praying that my baby would be okay. I did go and see my baby later but I didn’t question the staff about anything. I was angry, felt betrayed and shocked. I know NICU is not a place for chit chat and that they had a huge responsibility but the least they could do was to treat us as humans with feelings. Nothing could have prepared me for the roller coaster and enormity of the stress I was about to go through. The waiting game began…

With a sleepless night behind me and still very upset and sad I asked to be discharged from hospital. The staff didn’t want me to hang around in the NICU and I could rather come and see my son than sit there waiting anxiously. (I don’t know why because I wasn’t in their way at all!!) By this time my step dad must have spoken to the Hospital Pediatrician. He must have informed him that they suspected that our son had a fatal heart defect. Hypoplastic Left Heart Syndrome. Because my husband was still away for work I decided to spend the day with mom. Looking back this was one of the days I treasured because in my fragile status of mind, mom explained to me the full extent of our baby’s illness. She was a nurse herself years before and broke the news as gentle as she could. She explained that his left chamber of his heart was under developed also that the heart was the mirror image of what it was supposed to be. Oxygen rich blood didn’t reach his body and his heart was going to fail eventually. Vital organs fail first and then ultimately his tiny heart. There is nothing they could do for him. I remember vividly my reaction: ‘So it is just going to be a matter of time when he dies?’ I was heartbroken but not without hope. Hope. Yeah I prayed and hoped for a miracle. That night we went to see him again and took more photos without disturbing him. I noticed that he was getting oxygen: 45% my husband and I didn’t talk much about his illness – we mutually just instinctively knew what our thoughts were. Maybe we were in denial too… this only happened to other people right? He was 7 days old and the signs of stress on his little body were showing.

I can’t recall how the following day went. I think I spent the day with mom. I would have loved to sit by my baby’s side but could only do so strictly during visitor’s hours. Finally we went to visit him in NCIU that afternoon. I was very upset when I saw the oxygen levels were increased to 65%. I knew that this was surely not a good sign but just kept it to myself. He looked pretty pink and healthy but I could see his heart was struggling. His eyes were puffy and I was later told that this is a sign of heart failure. Both of us just stood there and just gazed upon this fragile little boy hanging in there. We had nothing to say to each other. Neither did the staff that was on duty on that night. I wanted to grab him and run away. I couldn’t stand him suffering. After a few minutes we left quietly. My only desire was for us not to go home but to spend more time with him. I then asked my husband not to drive home straight away but to go to the Union Buildings. We parked the car at the top terrace and just stared into the night at all the stars and city lights… when all of a sudden I started feeling anxious and wanted to go home immediately. Without saying a word, my husband just started the car. We were barely parked there for 2 minutes… Upon unlocking the front door I heard the phone rang. I instinctively ran towards it and answered. A stranger on the other side asked to speak to my husband. I went stone cold. I just knew. The moment I dreaded the most was here. It was the hospital and they wanted us to come as quickly as we could because they feared our little boy was not going to make it through the night. My husband then quickly called his parents who then called mine. We rushed to hospital. Neither of us said anything.

Upon arriving there we rushed through the NICU doors without even scrubbing and putting on sterilized coats. Our precious baby boy was now connected to a heart monitor. Soon both our parents were there together with my god parents. I can’t even remember what was being said because I was on a different planet. His Pediatrician was there I think and a senior nurse. In an instant she scooped up my baby to transfer him onto a bigger open incubator. He uttered a cry and she apologized for her hands being so cold. (I could never forget that cry) All of us were just standing there too shocked to do or say anything. I just couldn’t help but stare at the heart monitor only to see how his heartbeat becomes slower …. Until it became a straight line ...A continuous beep! As a last resort she gave him an injection in his arm to try to revive him. To no avail. I could have died right there because my heart just sank to my feet. I looked at the clock…. It was 7:25pm. June 18^th. No words could ever describe the emotions that followed. Obviously our families were very concerned for us but instead of turning around to walk away I begged softly if I could hold my son one more last time. Tears started streaming from my eyes. I wanted to love him, cuddle him and tell him how much I wanted him with us. They refused. Their excuse was that it was going to be too traumatic for me and that I would never forget it. The world crumbled around me. Devastated and so intense at that point that I couldn't string a sentence together without pausing for long moments. Our family wanted us to stay over with them for the night but both of us declined. We wanted to be alone, together. The staff gave us each sleeping tablets and said we should head straight home and try and get some sleep. (Thinking about that today horrifies me…) All we could do was to find comfort in each other arms. We broke down together. Every now and again we would wake up only to start crying all over again, hoping that this is actually a nightmare. We were heartbroken. Devastated is an understatement. This couldn’t be happening to us.

When the morning came reality still hasn’t sunk in. I tried very hard to be strong and I decided that we should immediately pack our entire baby’s stuff and store it away from home. I thought by not having it around might ease the heartache. Kind of forcing myself to move on… So the family helped my husband to put everything away and also started arranging the funeral. We were very fortunate to have a loving, caring family. Still it was as if I had a nightmare. Ever since I learned of my baby’s illness it was as if I lost track of time and reality. I felt lost in myself. Every now and again I had to remind myself that he was gone. But I needed the evidence. I wanted confirmation so to speak. I know it might be hard to understand this now. Maybe you do.

I wanted to go to the morgue myself and take him to the funeral undertaker myself. (We had requested a post mortem report so we had to wait for his little body to be released first.) The family was concerned and thought I had lost my marbles completely but arranged for a permit anyway. I just knew I had to do it. I wanted to see my little baby angel one more last time and just maybe then I would accept that he is no longer here on earth with us.

Love and support in many ways came from all over. People I didn’t even know sent flowers. They were all over in the place even on the floor. I couldn’t feel anything else but emptiness as if draped around me.

The day before the funeral my husband and I went to the morgue. My dearest mother in law wanted to come with us but I declined her offer. I let my husband go in while I waited in the car. He came back with our baby wrapped in a sheet. He gave him to me. His little face was covered and I just held him. He was cold. It felt incredibly weird. It was like I was looking in from a distance…

Upon arriving at the Undertaker I saw my mom in law as well as my husband’s sister A together with her husband, G. They came to support us – how sweet. I put my baby on the table and took out clothes I brought him to wear. When I unwrapped him everything inside me died. I felt so strong and distant… he did not look like the baby I knew. He was very pale and his toe- and fingernails were blue. It felt as if it was someone else’s precious boy. Everybody thought I was going to have a meltdown and there I was: totally emotionless. G offered to go buy him a beanie to cover the scar from the post mortem. I haven’t thought about that. He came back with a beautiful striped blue one.

The day of the funeral was somber. I had moments where the tears flowed but overall I felt completely distant. Friends/family didn’t know what to say. They didn’t have the right words. Does anyone ever have them? I guess it was very uncomfortable for them. Just being there for us was enough to me. This was June 22^nd.

Life goes on.

At least for those who attended the funeral? A Chapter closes and a new one unfolds… supposedly. The following days were filled with nothing but emptiness. I was amazed that my body was still functioning because I didn’t even want to breathe. I remember first how much I hated seeing someone pregnant, I wanted to scream and shout! I wanted to stop the world. I wanted everyone to suffer the enormity of pain that I had. At least I wanted the world to acknowledge mine. I was a heavily wounded soul. No one spoke about my boy again. Did people think they were going to upset me by just talking about him? Quite the opposite but this was the 1980’s. You didn’t talk about such things. No counseling was offered. The Pediatrician just made a courtesy call to say that he wasn’t even going to run tests (genetically) on us because this only happens 1 in 5 million. He is positive that we will have normal healthy babies in future. That was it.

I wanted to get back to a ‘normal’ life… if you can call it that. I started looking for a job so I could focus on something else but my grief. I started a new career in the Insurance Industry on July 1^st. Nine days after I buried my son. Nine days. People were kind but no one took the time to talk to me about my son. I did my job well but the rest of ‘me’ was reserved for myself. Have you ever cried from your heart? No tears and not a sound or any other visible sign that you were hurting so badly? I built a huge wall around myself. We would try to go to his grave every Sunday. It gave me some kind of comfort although I knew he wasn’t there. I could cry if I wanted to right there and no one would question me. I lost so much weight that I looked like an anorexic. I could not only feel my ribs but I could see them too. I guess I didn’t eat much. I wanted to die. There was nothing for me to live for. Selfish of me? I knew my husband was devastated too but he didn’t talk about it. I became a new person to myself, the only feeling I had was called grief. Raw and incomparable in truth. The old spontaneous woman full of laughter was left behind somewhere. Life didn’t have meaning without my son. I was wounded with an open scar. No painkiller available. I learnt that there are stages of grief too.

I wondered that the person who took the time to study, identify these stages experienced what I have? Do people know where we come from? When in grief are feelings unpredictable, unexplainable, out of control? To me, yes. There was no one who I could have turned to. Who would have understood me? One of my sisters in law’s said I should be angry at someone. Blame someone. Aargh, would it bring my baby back? Where is the comfort? Someone said have another baby. Oh, so you just replace them?

Angry? Yes I was. I was angry at the hospital staff for not telling us anything about my son’s illness. For making we feel like another number. For not letting me hold my son for the last time, saying our goodbyes. The moment when he took his last breath seeing him lying there ever so still is forever engraved in my soul. Why did he have to die lonely? He could have been in my loving arms!!! That was the infection in the wound so to speak. How could they have been so heartless? I am sure some of them must have had their own children …. I had only one last chance to love him when he was still in the world. I chance I was denied. I don’t even have hand or footprints. No photo of me cradling him in my arms.

Over the course of the days I could feel anger, denial the next minute with a flash of acceptance and then depression all over again. A vicious cycle of self destruction. Sometimes I wished I could just turn the clock back so I could just love him, have him in my arms, and kiss him. At least he would have died smothered in pure love. I missed out on all the milestones he would have had. I compared all babies of the same age and wondered how he would have looked having chubby cheeks... smiling… etc.

Two years, 11 months and 27days* after the day that changed my life.

I started working for a new company and met two other lovely ladies. The three of us were the only female staff in a group of about twenty. I don’t know how it happened but we discovered that each of us had lost a baby. Finally I was able to talk to someone who understood. Jeanette had a miscarriage at about 20 weeks and Amanda’s little boy was stillborn full term. That brought some healing. How absurd, that someone else’s heartache can bring comfort? It did. We had something special in common. Angels in heaven. Soon afterwards I fell pregnant again. Everybody was super excited and treated me super special. It was a ‘normal’ pregnancy and I had a great doctor. I was confident in him to take good care of us. My due date was June 12^th, two days after my son’s 3^rd birthday. It turns out that this baby was also in breech position and because it was a bit smaller doctor was going to let me go into labor first then perform a emergency C-section. So it happened that ‘M’ was born at 05H40 on June 7^th by c-section weighing 2.550kg. (5 pounds 6 ounces) She was a healthy pink bundle of joy. The first time I saw her was around 11am. Yeah, that was when I finally came around. Didn’t even know what the gender was. The ward nurse was kind enough to bring her to me: with a blanked wrapped around her she looked like a parcel! She opened her eyes and looked at me when she heard my voice. I was ecstatic and instantly, madly in love with her.

She was perfectly healthy and we were both discharged after 7 days. Then it hit me again. With all the joy there was sadness too. I bawled my eyes out when I looked at her because I could have had the same joy with Baby J… It just struck me on just how much I have missed out. I had my eyes on her the whole time and I couldn’t go to her crib a million times too many. I had to make sure she was okay. I would sometimes shake her gently just to make sure she was still breathing! It took some time and the depression disappeared slowly. I thought of J often but I still reserved my feelings to myself.

Four years, 10 months and 14 days after the day that changed my life* my children had welcomed a new sister. Baby V was born at 10H40 on April 25^th.weighing 2.700kg. (5 pounds 9 ounces) Another healthy bundle of joy! I admit I wanted a boy but that the two sisters would be great mates. I hadn’t had a sister whom I have grown up with so at least they have what I had missed out on. The birth was a horrible experience of which I don’t want to get into. She was also born by an emergency C-section. Almost a full twelve hours after I had gone into labor. I begun to sank into a terrible depression. On top of that my beloved dog died: the one I was given shortly after Baby J’s death. He was super precious to me and I couldn’t stand losing him too. He was my doggie boy who enriched my life and other’s too. Baby V was gorgeous but we couldn’t bond the way I wanted. I tried to seek answers within me but failed to do so. One night we watched a program about post natal depression and I realized that this was me. I made plans to see a psychologist. I needed help and I needed it fast. Here I was with two beautiful children and I was miserable as ever. Baby V was a true model baby: she did everything to make life easier for her mommy. She slept through at just 6 weeks old! She was just what some mommies only dream of. She laughed out loud when she was only 3 weeks old! Believe it or not! Apart from some a milk allergies she started thriving at only 3 months old.

I had a wonderful psychologist. He was a calm and kind person. He briefly asked me about the history I had, starting at the time I was able to recall my childhood till then. He then asked me to write a ‘book’ on everything, absolutely all that I can remember; I had to put all my feelings on paper. He wanted me to spare no detail. Only after I have done that, handed him the ‘book’ he would then call me to make an appointment to discuss his findings.

After three, long, terrible weeks I was done. I was emotionally drained. I cried oceans. My family was great putting up with me. After my psychologist read it he called me. At his office he explained to me why he asked me to write all and he suggested what he thought I should do. I don’t have to go into detail about that because I would need to reveal my biography so to speak and this is Baby J’s page, not mine. Bottom line is that I got rid of all those negative experiences/emotions and I could put the past behind me and live on to be a great mum to my children. In writing I worked through my childhood issues as well as my incomprehensible grief. It took awhile for it all to sink in. I realized that life does go on. I could see it. Baby J would have wanted me to move on and live life fullest. To do the best I could. I must admit I was on Prozac for 3 months. To me that was a ‘wonder’ drug. It worked great for me. It not only helped me take care of the daily demands a baby and a toddler had but also gave me a supernatural peace. If I say you could have dropped a bomb beside me without me blinking an eye, I wasn’t lying. It was great and honestly did just the thing for me. After 3 repeats of courses I did not wean myself off it, I just went cold turkey without any nasty side effects.

I could smell the roses again. I had excelled in my job and I was in control of my life again. Although the empty space Baby J left was still there, I enjoyed my little girls more. Only this time I had some kind of understanding and ultimately handle it better.

Eight years, 7months and 4 days* later my children welcomed a beautiful baby brother into their world. Baby G was born at 23H45 on January 14^th weighing 3.000kg.(6 pounds 6 ounces) I went into labor 3 weeks prematurely but thanks to my OB he was only born 2 weeks early! It was as if the boys were more in a hurry than the girls. It was another emergency C-section but only this time ‘perfect’. He was beautiful! My favorite sister in law A was there at dawn, 7 hours after he was born. She had sneaked in and she saw him before he had his first bath. She said she wanted to see him just in case…. It didn’t upset me at all. It was super sweet of her to drive a couple of hours only to be the first to see him. She blessed me. There had been no doubt in my mind that my new born son wasn’t anything else but perfectly healthy. I had only laid eyes on him briefly at 1:30am and couldn’t focus properly. (Without my contact lenses and still heavily drugged the nurse could only giggle at me trying to get to see my son.) I had the most wonderful Gynecologist and he took care of me in a very special way. He made up for all the bad experiences I had giving birth. God bless him too. The girls were so thrilled. So was their father. I couldn’t get enough of him; I smothered him with pure love and could hold him forever. We were both discharged 33 hours and 15 minutes after he was born! How good is that!

I still get days where I could get teary and miss Baby J. I remember on his 10^th birthday was one of those. I missed him terribly. It was also the day I had to give him back to God. I had (still do) a wonderful girlfriend that helped me deal with the underlying pain and at one of our Bible study groups we had something like a ceremony. Like I said I then gave him back to God. Sometimes I still wonder how life would have been if he was still with us. As babies he and his baby sister V looked very alike when born. Baby M and G looked more alike, not like all of them bare a very strong resemblance to each other. Still today when people see them it’s obvious that they are siblings.

I have never hid the fact from my children that they had an elder brother. They would talk about him and sometimes would say they miss having him around. I remember one specific day where G came running towards me, crying. He was about 3 years old. When I asked him why he was so upset he said that he misses J. I was surprised because up to then I haven’t told him about his brother. I wanted to wait a bit till he could fully understand. It so happened that his sisters told him. I comforted him and try to explain that J is still around and watching over us. It was okay for him to miss him, ‘cause Mommy misses him too. One day we would all be together again.

As the years go by I found comfort in knowing we could never be apart forever. Some days I feel his presence very strong. How do I know that? A mother just knows doesn’t she? I still have his winter blanket and his first toy. I am at peace now. I have learned to live with it. I don’t dwell on my grief anymore. I do however bawl my eyes out when I read of others who experienced a loss of a child. I feel what they feel and it hurts me just as much. I want to hug them. I want to make all the heartache and emptiness disappear. No one has to go through this. No one.

About HLHS:

None of the doctors we asked afterwards were able to give us a reason as to what caused Baby J’s heart defect. It is not a hereditary condition. The only explanation they could give is that the foetal heart forms within the first few weeks after conception and it was during this time that his heart did not form correctly. About 6 months after my baby died another boy, Matthew Ash was born. His case was widely published in the papers. They had flown him to the USA from South Africa but he lived only for a couple of weeks. Then I remember Baby Faye whom had received a baboon heart. Of course when everything was done to try and save them I thought why couldn’t they tried to save my baby? Prof Christian Barnard made a comment then which made me think. He said there is nothing anyone can do to save babies that were born with such a fatal heart disease. He was the best Heart Specialist in the world at that stage. I don’t judge any parent today trying everything to save their child because technology changes by the day. If it were available then I would have grabbed any opportunity given to save my baby.