Have you ever wondered what it must be like for a parent to be told that their child has an illness from which they cannot recover? That the child may live but have a very low quality of life? That the prognosis is so dire that their life span cannot even be guaranteed? I never had to ever have these thoughts before I had my sick child. It was a random portion of misfortune that had been apportioned to me by nature. Suddenly the lottery of birth had dealt me this very devastating blow. There are many like me who now have to live with the problems associated with this type of news about their children. There are so many aspects to becoming a parent of a sick child that I daresay, not even a single book on the subject will cover. In fact looking back now, the things I thought were problems were actually not problems and its funny also how my definition of worry has changed with time.
On a daily basis many parents in my new world have to deal with these sorts of information. I pray that you never have to because when hit with these possibilities and probabilities, your life changes forever. Some of us have been living on the edge not really knowing from one day to the next what the future holds for our children. What their quality of life will be and how they would cope with their disabilities long term. Some of us even add the worries about our own life expectancies to it. Oh! What if I die? What will become of my child? Who will look after him/her?
I will stop you there please. The brain is not made to cope with information overload. So how then can it deal with question over load? That line of questioning only leads to despair. There are too many unknowns to deal with. Even in mathematics, equations are used to get values or answers for unknown variables. As the unknowns increase, we need more equations to help substitute and solve them. Also, as unknowns increase we just generally stop and give up on any hope of a solution.
Life is filled with unknowns. Sometimes we just need to breathe because there is also something beautiful that life is also filled with…Hope! I will give you an example. Who knew some 20-30 years ago that there will be such medical advancements and prowess as there are today? In the past a diagnosis of diabetes or HIV would have been a life sentence. However, fast forward 20-30years later, today, that is no longer the case. There are better outcomes, management plans and treatment options for those patients. In the past, amputees did not get the care and support that are now readily available to many of them. So many have now gone on to become olympians and actively enjoy their lives to the fullest.
So there is still hope. Some rare conditions are being researched into daily leaving tomorrow pregnant with hope for better outcomes. The effects of particular illnesses can also vary from patient to patient. This means that there are very different outcomes for different patients even with the same illness. Even amongst the healthy still lie life’s uncertainties. Who said that healthy people do not die in different ways? We will all get to answer the clarion call somehow. That is also part of the unpredictability of life which we have no control over. What we can control however, is how we choose to live our lives. We can choose to be happy by spending as much quality time as we can with our children- healthy or sick. We can make every living moment count. Worrying too much about death and the impending end of our sick children can rob us of all ability to enjoy life with them.
These different situations we find ourselves in, make us stronger people, better people. Only if we allow ourselves power through our challenges. There is so much strength deposited in everyone. They only become available to us on a need-to-use basis. Many parent carers are gurus at multitasking and joggling. Most of them are very resilient. The sad thing is that because they are so busy getting on with their challenges that they never notice how strong they are.
The act of caring for your sick child means that you learn to be a more patient person. Can you count how many hours you have sat staring into space waiting for a blood test, or a result, or an operation or just waiting for your child to get better. Did you ever imagine that you had it in you to sit still? Sometimes you find yourself praying for days and weeks for your child to feel better. You find that you possess some form of faith or strong will (which you never realised that you possessed) to help you stay focussed through a stormy bout of deterioration. Did you ever know that you could be as prudent as you have become with your finances? You suddenly find that you are able to find ways to make your finances stretch through your demanding circumstance.
So although problems differ, they all have stress, frustration and uncertainty in common. We can however, control how we allow those problems affect us by adopting a different approach to them. So look inside of you and draw from the strength that lies within. Do not focus on the problem at hand but on the hope that it will get better. Keep taking baby steps in the night directions. Stop over thinking about the future, it is so unpredictable that it seems a waste to allow it weigh us down. Take it one day at a time. One hour at a time and one moment at a time. Deal with each step that lies before you. After then ask yourself what the next step is. Deal with that and then the next step after that. Work through your circumstance little by little, one step at a time then after a while you can look back at all the steps you have managed to accomplish. When you look back, you will then see how far you have come.
I find this method very helpful for me. It is less overwhelming. I don’t think too far ahead. Just here and now. I only love looking back. That’s just because, it gives me personally more sense of accomplishment when I look back at the journey so far. However, whenever I look too far ahead, all the unknowns just pile up endlessly before me and leave me lightheaded, despondent and anxious. I consciously choose to leave that future alone. I leave it to God (since I am one of those who believe in him).
I may not even live too long or maybe I will. Who knows? So I always remind myself that the here and now is what matters the most. I hope you never lose sight of it too. Always remember that worrying will only make you sick. If you get sick then you can no longer enjoy the moment. So take a stand against every uncertainty you are faced with and resolve to live by the minute.
Thank you for reading.
If you enjoyed reading this, you may also enjoy some other topics we have discussed in this series.
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