Never before has my faith been tested as it is at this time. It feels like a rubber band, stretched to capacity and it’s about to start severing, breaking away until it finally gives way. I’m severing right now.

The news I received yesterday Monday 22nd January 2018 around 4.50pm was the worst news of entire life. I’m struggling right now and I’m not sure if I can honestly cope.

Jermiah Moses was born at 8:31am on Wednesday 10th January 2018.

I started loosing my mucus plug the day before which came away completely on the morning of the 10th January. I had plans to meet a beautiful family and their Trisomy 13 baby that morning and I was determined to still go. I had a bit of period type pain but nothing more than that.

After a lovely day meeting this amazing family. I arrived home around 3pm and felt very irritable. By 7:30pm I started to have contractions that were fairly mild every 20 minutes. They then started to come every 10 minutes but by 9:40pm they had completely stopped.

Around 11:25pm I got up and went to the toilet, took some Gaviscon for my terrible heartburn and made my way back to bed. Just as I stepped into my room I heart a ‘pop’ and water splashed onto the carpet beneath my legs. I knew that it was my waters especially as I had just gone to the toilet so there was no confusion.

Immediately, panic set in as I knew it meant finally meeting my son and just not knowing what condition he would present with was enough to raise my anxiety levels. I wondered if he’d be able to breath independently, would he survive the birth and what other issues might be revealed?

The very first person I called was my first born aka child #1, thankfully she lives only a 2 minute drive away and so she came over to stay with her younger siblings. Hubby called the ambulance and the paramedics arrived within 6 minutes. They did some preliminary checks in the ambulance and bought me straight into the hospital.

I was thoroughly checked over by the day assessment unit midwives. They confirmed my waters had gone and then wheeled around to the birth centre. My contractions had started again but were very mild. During each contraction baby Jermiah’s heart was constantly monitored and despite my contractions being bearable for me, with each one his heart rate dipped considerably.

Thankfully, my birth plan was very clear and the preparation for an epidural in case a cesarian section was needed had already begun. The anaesthetist had been called and we watched and waited with anticipation how baby responded with each contraction.

I was given the choice to either wait an hour to see how I well contracted and if baby could be born naturally or to go straight ahead with a c-section. My hearts desire was for a natural birth because I knew that I’d be required to be mobile for Jermiah and I didn’t want anything to hinder my ability to attend to him.

I decided I’d like to wait a while and have Jermiah monitored consistently. At that point the doctor decided to assessed me, I was only 3cm dilated and she took the opportunity to ‘sensitively’ remind me not to have high expectations ‘as these babies are not really compatible with life you know’. I had heard it all before and was quite agitated that just as I was about to meet my son, she reminded me again. I refuted her statement and focused on being positive and hopeful.

unfortunately Jermiah’s heart rate just wouldn’t tolerate the contractions so I made an informed decision to go ahead with a c-section. I considered the situation, only 3cm dilated, the contractions were not very strong and would only get stronger putting more strain on Jermiah’s heart. It just wasn’t worth the risk. I knew that as this was my second c-section in only 14 months, it posed significant risk to my life also. Especially as I had a serious postpartum haemorrhage, loosing over 4 litres of blood, an amniotic fluid embolism and developed heart failure following the previous c-section, but I was faithful and knew that God would take us through safely.

The epidural was the worst experience ever, I’d never had one before. My previous c-section was an emergency and I was conducted over a local anaesthetic. Apparently, the space between each bone in my spine is very small and so the pain I experienced wasn’t normal for most. It felt as though my bones were being crunched and crushed like nuts in a nutcracker. At the time I described the pain and sensation as though I was at the dentist and having teeth crushed but in my back. If you can make any sense of that! My poor mum who was in the room and standing behind me watching every action almost passed out. Luckily for hubby, he was in front of me pulling me forward and downwards to create an easily accessible arch in my back.

After about 20 minutes I was ready to be taken around for my operation. My heart beat with anxiety. I didn’t actually understand where the time had gone! It was already morning, we arrive at the hospital just before or after midnight, it was now something to 8am.

I was sprayed with a ‘cold spray’ and asked to say at what point it was cold, it mostly felt warm and before I knew it, it I was unable to actually feel any warmth or cold, just the sensation of the spray. Hubby was sat beside me and I could see that he was equally nervous.

I felt every cut, pull and tug. It felt like a pizza cutter was used to slice into my abdomen and it took sometime to actually get to through the layers of skin and fat. I felt when they finally pulled Jermiah out and we heard a tiny, pitiful little squeal. My heart filled with a magnitude of elation and great joy, he was alive!

He was quickly taken away, wrapped in a towel, suctioned and briefly shown to us. I touched his cheek and then he was gone.

I was also sterilised at the same time, I think I’ve contributed enough to society now with 6 beautiful children. I am happy with my decision and have no regrets.

It was 6 hours later that I was able to see Jermiah.

I had been given photos of him which I looked at continually throughout my 6 hours. I was finally wheeled across the corridor to the neonatal unit and into the Neonatal Intensive Care Unit (NICU). Jermiah was covered in tubes and breathing equipment. He looked so small for 6lbs and very fragile. His skin was very fair and I counted his 6 fingers and 6 toes on each hand and foot, his eyes were tightly shut and his little face looked squashed beneath the breathing tubes. My precious baby was finally here.

we met with the doctors on the Friday, 2 days after his birth, we were told that if he couldn’t breath independently over he next few days it meant it was down to his condition and he’d never breath independently. This was something the hospital couldn’t and wouldn’t sustain. I looked at the doctor and said “days?” But he might need weeks, he just might need a bit of time to learn. I told him that some parents take breathing equipment home, he said that wouldn’t happen in our case. I burst into tears and the meeting ended.

We called our pastor and asked him if he could conduct a blessing for Jermiah the following morning, it was difficult but it was beautiful.

Jermiah progressed very quickly, after 5 days he was breathing independently. This was the most joyous and amazing blessings to see. That morning I had spent praying for a miracle. I put it in my Facebook status that something great was going to happen, I spoke it into existence through faith in God that Jermiah would learn to breath independently. I walked into the NICU to find all breathing apparatus gone! Jermiah’s face was revealed and my miracle had taken place. I praised God, I rejoiced and was in awe of His goodness and mercy.

Jermiah had also received a transfusion of platelets, wasn’t maintaining his blood sugar levels but was otherwise doing well and tolerating small amounts of expressed breast milk. His progression was amazing to see.

After 8 days he moved from NICU to the High Dependency Unit (HDU) and After 2 days there, he moved to Special Care Baby Unit (SCUBU).

Today Tuesday 23rd January, Jermiah is 13 days old. He remains a miracle in our lives.

Yesterday, my journey with Jermiah took a plummet. A serious nose dive. I’m struggling right now. On day 2 of Jermiah’s life I noticed that he hadn’t opened his eyes. I queried this and was told it was normal for some babies. As I held him I gently ran my index finger across his eyelids and they felt smooth and empty. All I could feel was soft skin beneath. In that moment I knew that my son was born without eyes. I ran my finger across his other eyelid and found the same thing, just soft skin.

I raised this with the nurse and she said she’d share my concerns with the doctors.

Speaking of nurses, I have to acknowledge every single nurse that has taken care of Jermiah, they are the most beautiful, loving, caring, professional and amazing people on this planet. They give of themselves selflessly caring for vulnerable and helpless babies, their professionalism is commendable and they’re not given enough value or credit for the outstanding work that they do. I will forever be thankful to them, they amaze me and will forever remain imprinted in my heart.

The following morning, when I saw Jermiah his eyelids were bruised and puffy. I was quite angry because I instinctively knew what had happened, his eyelids had been prized open, it was confirmed that nothing but an empty space was was present where his eyes should have developed. I was crushed, but had already in my heart accepted it, but was still hurt and upset for my baby boy who would live in a world of complete darkness for the rest of his life.

In addition to Trisomy 13 Jermiah has Anopthalmia.

I prayed that his hearing wasn’t affected and I began planning all the ways we’d be able to communicate with Jermiah.

I immediately stated singing songs to him and at every nappy change I’d sing the same song to help him to know what was taking place. I started talking to him more than ever, describing things to him, telling him about his siblings, grandparents, aunts, uncles, Godparents.

Until yesterday.

Yesterday a lovely lady came in to do a hearing screening. Unfortunately, the SCBU was undergoing some maintenance work and having blinds fitted. The noise was too much and she couldn’t get an accurate reading. She promised to come back by 3:50pm. I was anxious and really wanted her to complete the test. Knowing my son could hear meant more to me than anything else in the world. I was desperate. We had seen him jump at loud noises, respond to bangs etc so I just needed confirmation.

The lady arrived back at 4:20pm and commenced the test. It took about 30 minutes in total, her results, no response in either ear.

My son is blind and deaf.

She told me this was just an initial screening and further testing will take place in 10 days. She asked if I had any questions and all I could do was shake my head ‘no’ through my sobs and rivers of tears. I’ve not stopped crying since.

I’m angry, angry with God, angry with myself. I’m questioning whether or not we made the right decision. I’m questioning everything, my faith, my hope, everything. I’m broken beyond measure. My innocent, precious boy is living in a dark and silent world.

I stood in my bathroom this morning, closed the door and experienced the total darkness and silence. I was enraged, filled with hurt, why should he suffer? What quality of life will he have. The doctors were right, incompatible with life they said, incompatible with life he is, he appears. I’m lost. I’m trying to bounce back, to regain my strength and hope. To find the silver lining and the Godly rainbow.

I’ve tried to talk to God, I’ve tried looking for the glimmer of sunshine through the dark dismal grey clouds. I’m still trying even now as I write this to focus on the possibilities and not the challenges. I’m praying the screening test is wrong. I’ve prayed that God will reverse it and give him hearing.

I feel guilty, I feel like I’ve bought a child into the world to suffer. I remember seeing a student at work who was deaf and blind, with severe learning disabilities and in a wheelchair. I went into the toilets and cried uncontrollably, I questioned God and asked why He’d bring a child in this world to suffer like that.

Here I am with a baby exactly the same.

Just as I was writing this, someone in my bible network created a verse image that popped up on my phone screen. Is God taking liberties now? What is He saying to me?

“However, as it is written: “What no eye has seen, what no ear has heard, and what no human mind has conceived” — the things God has prepared for those who love him—”

‭‭1 Corinthians‬ ‭2:9‬ ‭NIV‬‬

Perhaps I need to continue to hold in to my faith during this time. The pain is immense, I’ve never hurt like this before and I’ve been through many testing situations in my life. Too many bad situations to list but of all of them, this is the most painful ever.

We know that Jermiah is surrounded by love, he has so many amazing people in his life, siblings, grandparents, aunties, uncles, godparents and more. He is lived beyond measure but it doesn’t take away the pain I fed for him. I know he doesn’t know any different, but I wish he did, I wish he could see our faces and hear our voices. I wish he could experience the beauty of flowers and the sound of music. My heart is pierced and I don’t know how I’ll get through this time. I am faithful that the sun will shine will again.

Please pray for my husband and I. Please pray for our other children. We are on a journey that will continue to test us beyond limits, I really feel like Job in the bible right now. He held on.

We need to hold on too.

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