The long road – Part 2


I was jolted back to reality this morning by the screams emanating from the bed beside me. I felt a bit dazed as I collected my thoughts and remembered why I was lying on this bed …yet again. Every effort had gone into the construction of this bed. However, no matter what it looked like, it did not stop it being the narrow, hard and uncomfortable bed that it was. Well, I couldn’t really complain as this room had come to be my home for a few weeks now and counting.

struggle

That ear-splitting sound was the cry of a little boy one who to my knowledge was born three years earlier. He was unwell from birth with literally one thing after the other going wrong with one system or another in his body. Doctors had painstakingly spent hours, days, weeks and at times months trying on end to keep him stable and comfortable.

He was fed food orally and after a while nasally via a tube. A naso-gastric tube was stuck to his face because there was no other way of securing it on his anatomy. While very uncomfortable to insert, it also looked like a signboard on his person that greeted people with the fact about his feeding abnormality. His body kept rejecting it and he was constantly sick with it.

His body just seemed to reject every attempt by the doctors to keep it thriving nutritionally. After a while a tube inserted directly into his stomach seemed like the only option left. However, like with the earlier device used, his body seemed to be rejecting this latest high-tech medical device inserted in his stomach to feed him. He was supposed to have a better quality of life with it. In fact, the main consolation had been that having the device will offer faster and more precise feeding. It was even supposed to be more concealed and give him some privacy in terms of his feeding arrangements.

The arrival of the tube in the stomach couldn’t have been more perfectly timed. It initially was hitch free. It delivered on every promise. All went well for months and everyone was excited. He was happy and stable. Hospital days seemed well and truly over. However recently, a host of problems gradually started creeping in. The happy boy slowly became constantly upset and crippled with pain. He was constantly arching his back or curling up like a ball. It was definitely coming from his stomach. So once more like every other device before this one, his body did not want it any more.

Every attempt to make his body cope with the pain failed. No home remedy could provide comfort. In no time, he was back on the hospital bed and this time it seemed like he was in for the long haul.

As I lay there, deep in thought, I was helpless and could do nothing to reduce his pain and constant suffering. I just muttered my prayers and mantras hoping for strength to carry on looking after him as I had done since he was born. I was one of the constant things in his life so I had to stand rock solid to allow the strength in me flow somehow into him amidst his hard painful life.

“it’s okay baby’’, I muttered as I approached his bed to comfort him hoping this episode of pain will pass from him as quickly as it had taken hold. His tiny nails dug into my skin as he gripped me tightly and looked up to me with eyes that said ‘save me from this pain’. I just carried on rocking him, singing to him as I had always done and reassuring him that all will be well.’ Don’t worry’, I said,’ hold on tight and it will pass’.

…………………………………………….

I squeezed him close and planted a kiss on his forehead.

‘shhhhh…..shhhhhhhh….’ I whispered.

Suddenly, his grip loosened. His cries lessened to a shriek and he gestured for me to put him back in his bed. As I lay him down, he wriggled, tossed and turned until he found a comfortable position to keep himself. He stayed glued to that spot for fear that any sudden movements might trigger another bout of pain.

Despite his suffering, as I looked down at him, I still felt hopeful. I reaffirmed within myself the belief that although he was suffering, I could not bear anything happening to him. He was my boy.

little muffin

Yes! I had one like him before but fate erected a permanent wall between us and we were separated for ever. Like Fred, he had been afflicted with the same disease but sadly, managed to survive for less than a week. Nothing could be done to save him. He was too feeble to survive. At times, I couldn’t really tell if walking away in death was a better fate. Fred only seemed to spend every breathing moment struggling for dear life.

Since birth, Fred had been unwell. From the moment I held him I knew something was not right – mother’s instinct. We tried to balance normal family life with the new hospital life we acquired with his birth. We found a pattern that worked for us. However, this did not eliminate the strain on us as a family. At times the cracks could be seen through our perpetual exhaustion, tiredness and stress levels. We soldiered on daily, determined to make it work.

Karl and I took turns looking after each child. He was rock solid and as supportive as they come. He had been there through it all with me. It was hard having a child with complex health needs. Psychologically it was draining. If we had a wand we would have spared Fred all the suffering and pain. We did not seem to be without a chore related to him. His medications, feeds and care had to be done by the clock to buy him some ‘well days’. We seized every opportunity to take the kids out for walks, equip our home with every toy and kiddy amusement gadgets we could fit in. My older son was all the merrier for it. He also had us both to himself most times which he really loved.

We enjoyed every moment to the fullest while out of hospital. I remembered our walks in the park, picnics, outings, counting mini beasts and our arts and crafts activities. They really made these long hospital days more bearable. I smiled as I appreciated how we all still enjoyed a normal family life with Fred against all odds.

……………………………………………

I furrowed my brows as I let my thoughts sweep through me.  I remembered how everything started. We decided to have Fred when we realised that having Mark as an only child meant he was going to be without a sibling, a companion and a partner in crime. All our lives we always wanted just one child. We both thought of it as a culmination of our love. It was our own fulfilment of the procreation command from God. We even joked about not wanting to have a hand in making the world population explode. One child was just enough. We never lost sight of our big dreams and careers. We constantly bore in mind the implications and costs of having a large family.

cry

Interestingly, all those thoughts melted away as soon as Mark was born. Suddenly as parents we felt an overwhelming love and need to do absolutely anything to make every living moment as fun and exciting as possible for our boy.

As he grew older and toddled about, it became more glaring that there was something missing in our home. He looked so lonely at times as he played by himself. Also worrying was the fact that he was developing an inability to share anything at all whenever he came in contact with other children. Mark was very young at the time but we did worry that he was being robbed of the love and companionship of a sibling. Surely he deserved to have someone else to love and show affection to.

Karl and I both came from large families and appreciated the fun, joy and excitement of having lots of siblings. Perhaps seeing our son on his own made us both appreciate what a different kind of life he was set to have. Our son had the two of us but he was still deprived in a sense. Suddenly we felt we had to rectify this. It was after all within our control. It was meant to be as simple as that. Become pregnant, have the baby and live happily ever after.

However what we had not envisaged was everything that happened as a result of that singular decision. It was very sad that we could do absolutely nothing to alleviate Fred’s challenges. He was so poorly at birth. Sometimes I blame myself for that decision. If I did not start talking so much about Mark’s sibling deprivation, I would have spared Fred all this pain. It was my fault and for me as a mum it was a shock to my whole being. I am not sure that I have even completely digested all the ramifications of his illness.

I allowed myself sink into self-pity. I rarely did but somehow my first thoughts flowed naturally into it. Self-pity was not really my cup of tea but at times it was inevitable. In a sense I felt very selfish every time I thought about the implications of Fred’s health for me as a person. I knew my son was my priority and my needs were not of much significance in the scheme of things. However, it did not stop me feeling stuck in a sense. I could neither go back to work nor socialise with people (not that I did a lot of that before any way).

I had this baby who depended on me for everything and his needs just kept getting more and more dynamic with each passing day. It felt overwhelmingly exhausting sometimes.  My main consolation and strength was that at least this time all my boys were alive. We could do the head count at Christmas or birthdays and still be complete around the dinner table .That suddenly meant more to me than any sense of loss or regret I felt. Every aspect of my struggle suddenly paled in significance.

I seemed to be thinking a lot these days. I seldom indulged in the habit. However being here in the hospital meant I had so much time on my hands. Thinking was not really bad for me as long as I kept my focus on the important stuff like life especially. I had lost a lot and was not ready to lose my mind as well. One source of comfort to me was the old ibo1 name“Ndubuisi”, meaning – Life comes first.

  1. Ibo my mother tongue, a language spoken in Nigeria.

………………………………………………………..

I let the relief of being in hospital sip through me. Well, looking on the brighter side, here, I could get my well-deserved sleep. That was a luxury at home because I looked after Fred round-the-clock. I did not have to worry about missing the timing of his feeds and medication. Hospital unfortunately, had become my new idea of a ‘holiday’. That word had become very alien to me since Fred was born. I was grateful for the rest in however shape or form it took. At the end of the day it was a location away from home like any other destination I could have flown to.

Respite

“Hello Fred’s mum… “, I could hear a lady’s voice.

It sounded distant but not before crash landing me back to reality. I found myself staring down into Fred’s bed as he lay awkwardly in this one comfortable position he had found.

“Hello Fred’s mum… “, She said again.

So I turned around with a polite smile plastered across my face

Then she said “Hi”.

It was one of  Fred’s nurses.

“Here please, these are Fred’s medicines for you to give him”, She said, a bit too sharply for my liking.

I looked sternly at her instead. She then placed a little tray on the table. It had medicines  drawn up in purple syringes.

“Here is some water to flush the medicines with”, she continued.

I had not even responded to her before she left. As soon as the door was shut, I had tears in my eyes.

“There goes my holiday” I thought.

I flicked through my phone and looked for anything on guidelines for patient medicine administration. I scanned through all the search engines I knew. I did not want to give him the medicines and was sure that it was the nurse’s duty to do so.

“If I start to give them to him now, they would keep dumping the medicines on me”, I thought.

I know I should have spoken up for myself but I was tongue-tied. I felt anger mixed with exhaustion which for me was always a recipe for overreaction.

So, I did what I do best. I shut out the incident from my mind. I did not react. I pretended that the event did not just occur. I packed up my toiletries and headed towards the bathroom for a well-deserved and hopefully relaxing bath.

“Don’t they say time heals all?” I thought.

I always trusted things to settle down with the passage of time. Even when one chose to do nothing, things always had a way of sorting themselves out.

I came back to my son’s bedside to find another nurse administering the medication.

“Job done!” I thought.

Later in the day,when I felt calmer, I discussed the incident with the nurse in charge. She listened attentively and later apologised. She also encouraged me to decline in future insisting that there was no pawn intended. She emphasised that some parents preferred to carry on their home routines while in hospital. However, she agreed that the nurse should have asked me first before leaving the medication on the table for me to administer.

As I approached my son’s room again, I was happy I cleared this up. You see, when parents come in to hospital especially those like me who have children with long-term illnesses, it is the only time they can rest. Nurses and doctors get to look after the kids too. But it is their job. They get paid to do it. They go on breaks during the course of their daily schedule with the kids. The kids are their patients, but they are our children. Health Care providers can take days off but we cannot. Even when we do, we still endlessly worry and fuss over our kids.

So while the parents may appear to be annoying, lazing around, doing nothing and at times chatting and fraternizing  with other parents in the hospital, you cannot even begin to imagine how well deserved that break can be for them.

 

Photo credits: Pixabay

 

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