Is there a great divide happening amongst special needs parents?

I have a special needs child and I wouldn’t change it for the world

or

i have a special needs child and it’s hard work, If I could I would change it! 

I’ve been looking around on social media lately at blogs, interesting tweeters and pretty much anything that has to do with special needs, I have to say… I’m pretty shocked. I don’t know about you but I’ve noticed there seems to be a divide amongst us.

I mean a real, “I’m going to give you my opinion” divide! If the first statement above rings true to you, be aware of the carers in the second statement. They have a point to prove and it’s basically going to prove you are full of crap. How could you say you wouldn’t change your child’s special needs, if you actually had the power to? If you are the second statement type of person, don’t worry you’re not safe, the happy police are on their way!

In preparation for a potential comment war next time I posted on Facebook or Twitter, I decided to think about which statement rings true for me and why. There I was with my pen, and a piece of blank paper…..which is still blank today. I will tell you why

I thought of 5 years ago. It was the year before Billy was to start school and I was on a mission to find the right school for Billy, the one that would skyrocket him into “mainstream”. Billy had just been diagnosed with Autism and although I welcomed the diagnosis as it gave me something to go off, I also struggled with some of the behaviours that came with it. Then early morning on a Monday in May, Billy became ill. So ill I took him to the Children’s Hospital to have him examined. He was showing gastro like symptoms but because he has hydrocephalus and a shunt I thought I should take him. We had never had an issue with his shunt so I wasn’t sure what to expect, however I was reassured by the Doctor after the scans were clear. Two days later I was back at the hospital. Thank goodness I made the decision to go back, because it was that day Billy’s heart stopped. As the Doctors shocked Billy back to life, everything I had been feeling about autism left me and I felt totally blessed.

Although I still feel lucky to have Billy with me, would I call it blessed? I mean we now know Billy will not show the regular symptoms of a blocked shunt. It won’t be detected from a CT scan, only by inserting a needle into his brain to measure the amount of fluid. I also have to keep in mind, a blocked shunt for Billy will be fatal if he is not receiving medical attention within approximately ninety minutes. Blessed pfft, it is torture!

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So my blank piece of paper represents how I feel about having a child with special needs and complex medical issues. Here is my message to the divided parents, the parents struggling with the why me’s and the new parents who may feel totally overwhelmed.

Shit happens. This is life. No human being goes through life without feeling heartbroken, grief, fearful or angry, the list goes on. Yeah sure some of us may be handed a bit more shit than others (literally) but if you happen to be the one wiping the poo that is smeared all over the floor, remember you have a choice. You can be bitter and miserable or you can focus on the great things and be happy and loving.

My life isn’t easy. It is demanding, never about me, scary at times and very restricting. I close the fridge door on average, every 6 minutes (I’ve counted). I clean poo every 2 days from somewhere it shouldn’t be. I wake up at least twice a week at 3am and don’t go back to sleep until the following night. But seeing it is mine, I choose to be happy and enjoy all the great little things that happen in my family many times a day. It is truly amazing how much you will laugh when you start to look for the good instead of the bad. Since my beautiful boy does have these medical issues, I am so blessed to have my eyes wide open because I am enjoying him and that is the BIGGEST BLESSING of all

How do you feel about parenting your special needs child, blessed or wishing for a different life? Let us know in the comments.

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