The long road – Part 1

It had been another hectic day on the hospital ward. I arrived with my son the previous day. It was meant to be a test at our local hospital to understand why his tummy was hurting so much. But with Fred, nothing was ever straightforward. I had dropped Mark at school that morning and noticed that Fred looked a bit off colour. I decided not to get him ready for nursery. Luckily, he was not bound by law to go every day. To be honest, I let him start nursery at an early age in order to give me some respite amongst many other reasons.

long road

Fred was not the easiest child to care for. He was born with a rare disease that left him having more hospital visits and admissions than you could count on your fingers. He went to a specialist school. By now, every single person who cared for him, or had any dealings with him knew all the warning signs to look out for before his health deteriorated. Everyone had my details on standby and I must confess, I had been called out one too many times and it had got to the point where nearly every other phone call on my cell was ‘Fred’ related.

On this occasion, I decided to avoid doomsday by just keeping him in and letting him rest. However, as the day progressed, he seemed to be getting worse. By the time I took him in to our local hospital, it was decided that he had to be transferred to specialist hospital in the city.

That was never good news. Apart from the meaning that Fred was more unwell than we thought, it also meant, we all had to travel regularly. That in itself was not a problem but for a family with another son in primary school, a dad working out of town, it always took its toll on me psychologically.

All I could see was the road ahead. So all through my journey in the ambulance, these thoughts kept flooding my mind. Each blare from the siren offered me no respite from the throbbing ache that was developing in my head. I had to get him settled into the city hospital which was an hour drive from home. I hoped to get back in time to collect my boy Mark from school. I looked at my watch and panicked. It was nearly the time for his school to close for the day.

I called Mark’s school and advised them of the situation. The lady was very understanding and promised to hold him for an extra hour after school closure. I immediately sent an email to Karl hoping he would see the message early. Poor guy! Surely my message was bound to worry him. I hated sending him such alarming mails. Unfortunately, I had no other choice as I could not be in two places at once.

I received a beep on my phone. Karl wrote “Honey try not to worry, I will sort Mark out, I am leaving the office now”. That was just the kind of message I needed. Wow! The odds of getting such a prompt response from Karl were very slim as he worked in a very busy bank as an executive financial analyst.

I felt a bit settled and looked across the ambulance towards my sedated son who looked so peaceful as he slept. I took a cue from him and did the same. I had no idea how the rest of the day was going to unfold. I felt the tap on my shoulder and was jolted back to reality with the words “Wake up, we are there now”. I am sure that I must have slept for an hour.


I was so worried about Karl’s work. Day and night I constantly worried. He on the other hand always seemed unperturbed. We had a Christian upbringing and had learnt never to doubt the constant care that God has for us as his children.

However, the past few years had taught me how to be more realistic than faithful. We seemed to have been through more upheavals than a tsunami. While I still had faith, my love for God seemed to visit “specsavers” regularly and so it saw very clearly. One thing was for sure, things were going to keep happening to everyone good, bad, faithful or faithless. I also believed strongly that God had no time to descend his throne to do something that was well within our power to achieve.

Karl and Mark came to the hospital the next morning to see us. My husband had tactfully taken the day off work. Tactless because, as far as I was concerned, he needed more than a mere call to this Jimmy Furnace of a boss to do that. I just hope this “Furnace” of a man was not going to get Karl burnt one day in that office of theirs.

Income stream

“I hope you sent an email to your boss” I asked, “before taking the day off”, I added.

“You worry too much”, he retorted sharply in a tone that meant, “can’t you trust that I have sorted it?”

I was glad to see them both. God knows I needed a cuddle after the kind of night I had been through with my son. I had been given more news by the doctors that seemed worse than all gloomy news one had become accustomed to on the telly these days. The doctors and nurses came with all shapes and sizes of instrument to get all kinds of samples from my son. Blood, stool, urine and I thought they would have made him “spit” a sample if they could. It was all so overwhelming. He lay there helpless with tubes, wires, drips and anything they had to offer him.

“Hey mom” Mark said “do they have toys here?”

I just giggled because my poor boy was still a child after all. He could not really understand the gravity of the picture before him.

“That’s ok”, said the specialist nurse very tactfully.

“We have a play specialist here who will sort some toys out for Mark, if that’s okay mum?” She looked at me.

I nodded in consent and felt a bit relieved because she had stepped in just in time.

I know that in the scheme of things Karl’s work should have been the least of my worries. However, unfortunately, it was foremost on my mind. We could not afford to lose the steady flow of income that his job provided. We had never ending unforeseen costs to meet up with. As the days brought new challenges with our son’s treatment, our pocket bore the brunt of it.

I used to work before you see, I dreamt of a nice long career with a lovely retirement pot. Unfortunately, it seemed like a pipe dream now. I went on maternity leave after I fell pregnant with my son and never returned. Having the most difficult pregnancy did not provide my fate with a valid excuse to spare me from the turn of events since my son Fred was born. I give up all that in a heartbeat because, he came first. Unfortunately, that decision came at a cost. The price was a smaller income pot and most importantly the end of my dream.

I decided that whether he wanted it or not, I was going to get a letter from the hospital’s social department for him to submit at work. I did not run it past him since I knew he did not want a fuss.

Getting the letter for work was even easier than I thought. The hospital was familiar with such official documents and in no time the process concluded. To my utmost delight, I returned half an hour later armed with the letter for Karl’s office.

I approached Karl by Fred’s bedside. He just smiled at me when he saw the paper in my hand. “You will never rest, thank you love, what will I do without you”.


“I am leaving now”, I announced to my boss.

“Oh that’s fine”, he said from across the room.

I went to the tray by the copier to drop off all my finished work for the day and then made my way to the corridor which led to the elevator.

”Karl, Karl! He called out

I turned around a bit abruptly as his call had left me a bit startled.

“Please come here a second” he motioned towards the seat in front of him.

I hoped all was well because I spoke to him earlier about needing more time off because of Fred . My first impression was that he was going to dismiss my request. I sat on the chair in front of Jimmy my boss.

Karls boss

“Yes Boss, I said!”

“What time did you sign on the timesheet?” he asked..

” I signed 2:15pm’, I gestured towards the wall clock in the centre of the office.

We had an open plan office and everyone seemed locked away in a glass box. When one looked across my office from the door, we all appeared to have no legs. All our “cubicles” were lined up across each other. There was a wall clock at the end of the central aisle with the water dispenser right beneath it.

“Well that is fine.” he continued, “You have met every target for the day even within this short time. Considering all you are going through, I must commend your efforts. I have now submitted those hospital letters to HR. I want you to let me know if there’s anything else we can do to support you.”

Thank you very much Jimmy, and enjoy the rest of your day  I replied.

With that, I left his desk and finally made my way out of the office. I had to sprint to the rail station. There was a slim possibility of that happening after all the time I had just spent chatting with Jimmy I was barely going to meet it at this rate. I luckily caught up with the train just in time.

“Phew!! thank goodness”, I thought. As the train set off, I sank into the blue seat and remembered the long road so far with Fred, Hope’s feelings , keeping Mark up to speed with real world situation in terms of what is normal living in the eyes of other children his age and I whispered subtly, God is our strength.


Every single time my brother became sick we seemed to live in the hospital. I was five years old and all my life seemed to have been spent in hospital. Hospitals and injections did not have the same scary effects in my ears as it may have had in the ears of any other five-year-old in the country.

I pitied my mommy the most because she had a lot in common with my yo-yo. She was constantly being pulled by everyone. We all needed her attention. She was just a superhero. Both of them were – dad too! I did feel that it would have been easier for them if they watched my fantastic four films about superheroes with me. Perhaps they could learn how to make flying capes to make their lives easier. After all grown-ups could do anything in the whole wide world.

super heroes

My daddy came to pick me up late from school when Fred was in hospital. It was only because he had no ‘cape’ to fly in superfast!!! Maybe he needed to borrow my best toy car McQueen, it was super speedy.

I loved hospitals. First of all, when I was there I could get away with a lot of things. I loved the play areas because they had the most amazing toys! I had some of these toys at home but in hospital they seemed super cooler. I love the food. Mom always bought me all my yummy favourites – chips, burgers, juices, squashes, I even had more ice cream if we stayed long enough.

I always secretly prayed that we stayed longer and longer sometimes. It seemed like the longer we stayed, the more presents, I got from everyone.

The bit I hated most though was staying back at after-school club with the older children. I did not want to worry my parents. That’s why when daddy came to collect me, I always smiled and told him I was fine. I did not want them to worry about me. I really wished everything will go back to normal. I really did not want to put up with these silly kids any longer. They were a bit scared of me. I think it is because I ignored them totally. I did not even laugh at their jokes. I promised myself that I will hit them very hard if they ever came too close.

I knew I had to say my prayers more. So every time I remembered Fred was still in hospital, I said another prayer. Hopefully soon, I would gather enough prayers to bring him home. Mummy said the prayers are a fuel for the angel bringing the answer from God. Mummy even said Fred’s Angel was special because, Fred’s angel only brought enough power to make poorly people better. She said my angel was angel Mark and he delivered the fastest messages to God which I thought was super cool. I smiled and looked forward to seeing my dearest mummy soon.

Photo credits: Pixabay



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