Hi guys! Thank you so much for staying hooked to our website. It’s always lovely to know you guys are with us every step of the way. So I have been asking myself this question a lot lately. Career change…. to be or not to be? I honestly do not know what the answer to that question is but I am hoping to find out somehow….and fast!
As some of you may not know (especially those new to this website) Karl and I are…or rather were full time carers to our son Otito until his demise early this year. The whole idea of setting up this website last year was (in addition to many reasons) to create an outlet for us to express the different emotions we were going through while we were resident with him in the hospital. It turned out to be a whole year long!
A year ago what began as a very roller coaster ride led us to finding ways to cope. Our son was hospitalised and there was no hope of a discharge date in sight. With each passing day, he grew more and more fragile. However, we kept our spirits up by spending lots of quality time together as a family amidst our chaotic lives. The journey although tough and almost impossible at times failed to kill us but it sure did make us stronger.
Well, sadly he died…. but such is life….
Tell me about bitter pills. This one was huge and we had to swallow it with every strength we could muster. Till date, the effects of that huge pill of life we swallowed with the passing of our son has left us scarred. With each passing day, the scars are becoming more bearable. It is now taking its place amongst many other scars of life that we bear. Like every warrior, we are proud that we are overcomes by God’s grace. One thing that was apparent when it happened was that we still had to find a way to pull ourselves up and carry on. If not for any reason, for the sake of our son – Mark. Our hero. He had been through the last year living the hospital life with us and although we sadly had the worst outcome since the financial crisis, we still had to find a way to bail ourselves out of the emotional dip we were collectively experiencing as a family.
I remember how the grass looked a duller shade of green. The roses were ugly and the skies seemed too grey to look at through the tears we shed. Thankfully having our boy Mark, gave us every reason to move on. Moving on was a bit difficult to do. At every emotional corner it felt like the ground was being pulled from beneath us. We knew not to dwell on those feelings but to confront each day as it came. We had good days, bad days and everything in between.
One more thing that felt very strange to adapt to was working….
I wished a lot that I had the luxury of a holiday….a year long vacation to take our minds off things. Some time to grieve and even heal for that matter. Sadly, our lottery tickets were yet to yield the kind of fruit that would have guaranteed such a break. We had to soldier-on on that front as well. One thing I knew for sure was that having been through the last 4 years with a sick child, I was changed forever. I acquired a different view of life while walking that road. One I like to think of as a privileged view. I am sure that it was the type of view the elders boasted about. The one that gave them the advantage of seeing beyond what the youthful eyes could not even behold while standing on a mountain. It was a view that only came through experience. What does not kill you not only makes you stronger but also wiser, I say…hear hear!
Now my dear friends… here I am!
I have no idea what this big future holds for us. Hopefully some nicer more positive things to pull us out of the feelings we have experienced in the last few months. I have absolutely no idea what to do next (career-wise ) All I know right now is that whatever I choose to do from now on with the rest of my days must be something that makes a real difference. It has to make a difference in the life of others. It has to be more than just earning a wage. Anyone can do that. What we gave our boy was care, love and affection irrespective of his challenges. It elongated his time on earth. He thrived not only on our love but also on the excellent care he received from lots of medical and non-medical people. Trust me, the list of people to thank for their input in Otito’s life is endless.
Sitting here today, one thing that consoles me is the level of connection we have been able to achieve with loads of people especially within the last year. It was all thanks to that little man. The people who come frequently to mind are his nurses. I will never forget the way they loved and cared for him both in our local hospital and at Great Ormond Street Hospital (GOSH) London. They were like his mums and dads on the ward. They just understood my boy and even though he was hard to please. They knew all his special needs, specifications, demands and still loved and looked after him just as he was.
It was actually a fantastic relationship to witness…filled with true love… never wanting him to change who he was but forever helping him to make the best out of the life that he had. They say “you only live once” he sure had a hell of a ride with every member of his team! My boy did not come into my life for nothing. I did not pass through that road in life for nothing. I am still finding my purpose through it all. Going back to the life I had pre-Otito will be like throwing all I have learnt away. God does not give you lemons for nothing. Even after squeezing the juices out and making the best of them, the whole process creates a learning curve. It can show us strengths that we never knew we possessed which we have to find ways to utilise and respond to as new situations arise.
You can hardly be a carer for as long as I managed without coming out differently on the other side. It changes your life forever. It opens up a whole new world to you that cannot be imagined without some form of experience. You meet new, people, face new challenges, test all your strengths, reach breaking point, feel numb and even stand strong sometimes. It throws everything at you. Since Otito died, I have gone from adjusting to what was my new normal to trying to adjust back into the real things that used to be normal. For example I have had to learn to sleep through the night without needing to wake up to give feeds, medicines etc. I am still learning to try and relax and not be so apprehensive because it just feels wrong to have nothing to worry about. I have learnt to stop looking at the letter box for yet another mail about appointments or check-ups for Otito. Infact even though Otito was non verbal, I can imagine him telling me…mummy please chill out…( trust me, he always looked capable of saying something like that).
All these things I am struggling to adjust to now make me laugh a lot because these were different aspects of the peace I craved when he was alive. I used to long for days when I did not have to do anything. Now I feel very square peg in a round hole-ish. It has made me question a lot of things about what I really want to do next. I have gone through the list of things I like and the list of things I can possibly do and those are endless lists too. It can feel so exhausting sometimes. Life on this side of normal just feels weird. I know I should give it time but I wonder if it’s a sign that it might be time to take up another challenge. We’ll see….
Well ladies and gentlemen, I have to go now. I have to do the school run and then after that I will be hosting a relative who has come all the way from Africa to pay me a not-so-surprise visit. I am sure that it will be a nice distraction. I will keep you posted as per my decision. It will be nice to hear your thoughts too.
Thank you for reading.
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