As a child, we grow up watching and knowing our parents are doing everything they can to make sure we have a good start and are well taken care of. To say my first year here was a little rocky is a huge understatement, and it hasn't been until becoming a mother myself that I finally have a small understanding of the fear and torment my parents went through that first 12 months. 

Ive heard my mother tell the story of what happened to me as a baby a million times over. So when I asked her if she would write a little Blog about my childhood, I expected a few paragraphs stating the facts, some brief stories and a little into how it must have felt going through the rollercoaster. When mum sent me the first few chapters, I read it with a lump in my throat and a whole new perspective of what living with a sick child must have felt like. 

 Whether you're reading for something to do, curious to know what happened or maybe you're looking for a little bit of hope in a world that can sometimes feel pretty dark. I really hope you enjoy it. 

- Janelle xx 

The Expectant hope:

PART TWO:

Some days it really is a sacrifice to offer praise and thanks for our present situation. When we are stumbling, tired, and scared, God seems distant, and a grateful heart is the last thing on our mind.

1 Chronicles 16:34 - Give thanks to the Lord, for He is good, His love endures forever.

Upon leaving the hospital after the birth of my third baby, I found myself sitting on a bucket in a small kitchen, surrounded by ladies from our local church.... It was moving day. The loss of our idyllic property had been stressful but I tried to stay positive knowing that family was way more important than possessions and as long as we had each other and our health, things would be fine. I have to admit it was hard though, going home to a tiny two bedroom cottage with an open fire place for heating and just a 1/4 of an acre of yard for our children and animals to play. 

However, we settled in and about three weeks after Janelle was born I noticed that she had what I thought was conjunctivitis and a tiny lump in her right cheek the size of a small pea. So off we went to our local doctor who told me not to be concerned, gave me some eye cream and said the lump was a small cyst that would disappear in time. The next Sunday during church I was still concerned and a friend said I should take her to the doctor immediately. I saw a different doctor this time and to my surprise he told me the take her to the Children's Hospital in the city! It was kind of surreal because I actually double checked with him the importance of it, mainly because it was 'once a month' Family Fellowship Sunday at church. This was where we all brought meals and dessert to share it after the service in a wonderful time of fellowship and food.... I really loved Fellowship Sunday!! I can't remember the name of the Doctor, however I remember his words, he said 'if she was my baby, I would be taking her now, I have never seen this before.'

Upon arriving at the hospital we were sent to the casualty department, where there were lots of people waiting - being that it was school holidays. Every kid and his friend had a broken arm, leg or a temperature. After a long wait we got to see the doctor, the lowly intern, then we saw another doctor, then another, then another, then another!!! Eventually we had a world renowned paediatrician ordering catscans, X-rays and a bed on the fifth floor. This was actually the burns unit but because beds were scarce, that was the doctors only choice. Sitting in that ward was one of the most confusing, surreal times of my life, my friend that had traveled in with me had gone home and I felt so alone. As I had walked down the corridor to get to our room, I saw severely burnt children floating on water beds in isolation wards, seen the faces of their distressed parents and the hard working nurses dressed in white gowns and masks changing bandages. Now I sat next to a little metal cot staring around the room holding my precious baby girl tightly in my arms. Opposite me was a five month old little boy who had three rows of stitches that stretched from one side of his head to the other. He also had a paralyzed voice box, so when he cried he sounded like a duck squawking. His cot was covered in plastic to keep things sterile to give him a chance to recover. The next bed had a young girl in it who had been thrown through the windscreen during a car accident with her mother. Next to her was a child having her third cleft palate operation, and next to our cot was a girl that I couldn't look at for very long, yet kept looking back a minute later. She was disabled, about 12 years old, and had her neck bandaged with tubes draining from it. Blood and pus oozed out from under those bandages and she was distressed and crying most of the time.

No one really spoke to me that night, or maybe they did but that feeling of being scared and alone now overshadows it.My thoughts at the time was, 'this is a mistake, my baby isn't sick, she's perfect, we don't belong here'. Yet the paediatrician words kept ringing in my ears, he had said, 'your babies condition is going to get a lot worse'.....and it did. My grateful heart was about to be tested.

PART THREE:

You know how sometimes you start on a journey of perils and trials, yet you are oblivious that it has even begun..... That was the denial I was facing, sitting in that hospital ward.

Isaiah 41:13 - For I am the Lord your God who takes hold of your right hand and says to you, do not fear, I will help you.

After a rough first night, what I was hoping would be our only night in the Children's Hospital, many tests were done the next day to confirm the doctors suspicions. I remained at my precious baby's side, determined to be with her for whatever they needed to do. I remember one procedure, that even now, 27 years later, brings tears to my eyes at the helplessness I felt at the time. Janelle had to have blood drawn for multiple testing and we were taken to a small room at the end of the ward, I distinctly remember it was the last room on the left hand side. It basically just had a steel surgical table and a few trolleys, cupboards and benches, stacked with needles, syringes, bandages etc. From memory it also had oxygen and CPR equipment. I placed Janelle on the table and the nurse strapped her arm down so she would keep still.... she started to cry. I tried talking to her hoping to soothe her but as the the needle broke through Janelle's delicate skin, her crying became worse. I could have coped with just that but the nurse couldn't find a vein, so she tried again only to be unsuccessful. Another nurse was then called and they tried twice more, by this stage Janelle's screams could be heard out in the corridor and I was starting to get distressed as well. Still no vein was found. I was beginning to panic but I was a bit shy and insecure back then and easily bossed around by others. The nurse refused my request to pick Janelle up and comfort her and after the fourth attempt she just abruptly said 'well we will just have to try the other arm!'... I ran from the room crying. It was the only time I ever left Janelle during a procedure and I later found out that nurses are only allowed three attempts at collecting blood and then they must call a doctor. Afterwards, I regretted running from that room and not standing up to those women, but in their defence they were just doing something they dealt with everyday and had become numb to. I, on the other hand, was in a world I knew nothing about, facing my baby having an illness I knew less about and still going through the raw emotions, a mother of a three week old baby feels.

So later that day, after the results came back, the doctors told me the devastating news that Janelle had four Hemangioma- 3 of them being internal. One in her throat, one in her cheek, one behind her eye and an external one on the side of her nose.  Shell shocked, I tried to understand this big medical word that they said would get a lot worse before it got better.... if it got better! Hemangioma is the medical term for birthmarks, which are a group of multiplying blood vessels that look like a tangle of fishing line. The have no easy border, so removing them is hard and Janelle would have haemorrhaged and died if they tried. Also the risk of her going blind was very real and depending on their growth in her throat, she was facing the possibility of a tracheotomy. I remember the doctor repeating that it was going to get worse, as if he was preparing me for what he knew would come. The disfigurement, the long term hospital stays and the possibility of it being life threatening... yet still, in my mind it didn't sink in. He explained that this was extremely rare, especially the position of the Hemangioma, and they were dealing in unknown territory. There were treatments they could try but no guarantee of success. Essentially...... Janelle was an experimental guinea pig.Multiple doctors appointments were booked before we were sent home, all of them at the hospital, so traveling was going to be a big part of our routine. I was bewildered, scared and yet still needing to function and look after our family of five. Most of all though, we needed a miracle!