Ways of living on and enjoying life with a chronically ill child

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Close Up Of Mother Cuddling Baby Daughter At Home

Having a healthy baby and seeing them get through all their milestones is something a lot of people take for granted. If you have a child now that was born with all their body parts and organs working perfectly, give thanks daily and never take it for granted. If your child, like mine, was born with health challenges we never really know what tomorrow will bring so the best thing to do is to learn and find ways to manage because it can get very unmanageable very easily. I spent the past 3 months in hospital with my son and so that had to change my life quite drastically in terms of when we cook, when I do home work with my older daughter, when I work and heck even when I sleep. It can be quite overwhelming but the first thing I do when I start to feel panicky is to breathe and give thanks for all the other things in my life that are going right because I never want to give energy to what is going wrong.

Here are some emotional tips, my 2 cents, and coping mechanisms I have used that worked for me and kept me sane over these trying times

  1. Do not compare your child with anyone else’s. In the movie Mulan, her father Fa Zou says “the flower that blooms in adversity is the rarest and most beautiful of all.” So though your child hasn’t walked/ crawled yet even though their time has passed, putting yourself under pressure and having sleepless nights about it because your neighbour’s child who is a year younger is doing all those things will not solve the issue. Instead let it be and wait for the time when your child blooms. I’ll bet that when they eventually bloom  – they will be the rarest, one of a kind and most beautiful of all
  2. Do not “drown in your misery”. Happiness is a choice. So when your child is in hospital you can sit there and feel sorry for your self or you can find ways to keep on living and be happy regardless! I was exercising in the hospital parking lot, cooking food at home and bringing it to the hospital to enjoy a family dinner around my son’s hospital bed, I was doing physical therapy with him, watching Teletubbies and music videos with him – we just had the most fun possible in that circumstance and this helped us to stop counting the days.
  3. Celebrate every little thing and pronounce good health and positive words to your child verbally. Do not be made bitter by the situation even though it’s so easy to do that with nurses pricking your child to draw blood, drips running everywhere and doctors manhandling your child who would rather not be touched by them. Fight all the negative urges and greet your baby with a smile every day and say out loud, “you are doing so well”, “you looks so healthy”, “you are so happy”, “you are perfect”, “you will do amazing things in this world”. Say it out loud all the time even if you are not convinced, with time you will also get conviction and with time you will actually start to see that your baby is indeed well, healthy and perfect and you can start to enjoy them

When life throws such massive challenges at your direction just know that you are highly respected and God actually sees you a strong conqueror who can overcome anything. Only the best soldiers are sent to battle and therefore such challenges are not meant for siesies. Hold your head up, wake up, show up and FIGHT. Life will be Lived and it will be enjoyed NO matter what! So help you God!