Beauty is in the eyes of the beholder, and even as the Hemangiomas grew, to me Janelle was absolutely gorgeous.... But others weren't so kind.
Song of Solomans 4:7 - You are altogether beautiful, my darling, there is no flaw in you.
Over the next months Janelle's features did change drastically. Her eye started protruding, along with the surrounding skin. Her cheek also got fuller on the right side, therefore drooping that side of her mouth. The external birthmark on her nose became raised and bright red and her breathing got heavier. Our church congregation would see her when we weren't in the hospital and they were praying for her all the time, but it seemed like the harder they prayed the worse she got. I was isolated in the hospital as mobile phones weren't around and it was over an hours travel for friends to visit. I often had to make decisions on my own on what to do, so I just followed what the doctors said - after all they were the experts.
The length of time we stayed in the hospital was getting longer and I missed my other children.... they also wanted and needed their mummy. Their dad would drop Janelle's older brother Ben off at prep and her sister Katie at daycare. He would then go to work and pick them up later that day. Every few days they all made the trip to come and see us. I recall one day standing on the hospital flight of stairs, between the floors, and looking out the window. Down below was the city with hundreds of people going about their business, unaware of the families going through torment within the walls of this old building. I felt like no one cared, like we were living in a different world.
We now had a entourage of doctors and specialists that would visit Janelle. Our two main ones were Dr Kemp, Janelle's paediatrician, and Dr Elder, her eye doctor. Funny how I can still remember their names, all these years later. We also had doctors come from other hospitals to see this rare baby with the birthmarks. One day, there must have been eight doctors circling Janelle's little cot, she loved the attention! I would sleep in that cot every night. The nurses would put Janelle in a medium size one so I could fit too, if I wanted to stretch my legs out, I had to bend at the hips.
The first approach of attack on Janelle's Hemangiomas was oral steroids, however this caused terrible ulcers in her throat and mouth. These were extremely painful and before feeding Janelle, I had to put numbing gel in the back of her throat with a big, long cotton bud. However the ulcers got worse and her crying was constant. I would walk, and walk, and walk Janelle at night in the corridor, trying to comfort her, I was so tired and felt hopeless not being able to soothe my baby. Watching the clock became a habit, as I was praying the time would past quickly so the nurses could give her the next lot of painkillers. Soon after that, they stopped the oral steroids. Janelle also wasn't coping with the lactose in my breast milk, so at 3 months old they recommend I bottle feed her.... to say I was devastated was an understatement, I loved breastfeeding. It was just another blow to an already terrible situation.
When we did get to go home people were starting to stare at my baby, even going to the supermarket was never pleasant. Some would make comments, jokes or just steer their children away. Unbeknown to me, word was getting around Ben's school that I bashed her. One time, an older lady approached us to look at Janelle in her pram, and asked what was wrong with her. After me going to all the trouble of explaining her medical condition, she went on to say that she thought my boyfriend had bashed her.... she didn't even credit me with being married. I faced a lot of that over the early years of Janelle's life, but God always gave me the tolerance to never snap back at people. I understood that they were shocked to see a baby so disfigured and spoke before they had time to think, I can't blame them for that. I found it fascinating though that Janelle's brother and sister never saw that she was different, they had always known her like that, so it was normal for them.
The worst blow about Janelle's appearance came from someone who should have known better, a relieving doctor. While visiting in the hospital on his rounds, and after discussing her condition with me, his comment was, 'you think she looks ugly now, wait until she is older!' He had an English accent, so thinking I had misheard him, I asked him to repeat himself, and word for word he said it again! In what must have been micro seconds, three things went through my mind. First, I wondered if I could punch his face from across the cot. Then I thought I might start screaming and put on such a scene, that everyone would come running. But finally I decided to tell him that the top doctors in the country had assured me that with cosmetic help, she would look fine. However, I later reported him to my doctor, who was very mad and promised he wouldn't get away with upsetting me. Looking back now by this stage I was getting depressed and little things like that were not helping.... in fact nothing was helping. Living on the fifth floor of the hospital was not the most uplifting place to be and each day was a struggle to not suffocate in the grief that floated in and out of each ward. Yet God had me in His arms, it was the Lord who held me together.
Read part 5 here