Being a Parent!

It’s hard sometimes as parents of children with disabilities and special needs to feel we are doing all we can to help our children. Our day to day lives are all different, what works for one person may not work for another, we are after all, all unique individuals who deal with things in our own way. I think the most paramount thing is to always put our child’s needs above our own. It’s hard for many of us I know with all the specialist appointments, physio therapy, school needs, government department dealings and all those annoying appointments that most of us at one time or another complain about or dread having to do, the thing is we do them; no matter how annoying these things may be to our lives, they are facts of our lives and as parents who owe it to our precious children to give them the best quality life we possibly can. For me being a parent I feel is one of the most self-sacrificing experiences in life; sacrificing our own selfish wants and needs to give our children unconditional love and support; yes at times I have complained and often wish I could just have some me time; and I think it’s important that we get that too, because if we get bogged down and run down in the end it’s our kids that will suffer, a happy wife makes a happy life so I’ve heard, and I have to agree, when mum is unhappy and sad the whole family know about it – especially when they go looking for their dirty washing or something they have lost lol.

I know my husband and myself will go out of our way and turn over the ends of the earth to make sure all our children are safe and taken care of; and I’m not talking about making sure they have designer clothes or the latest technological device, those things are unimportant; but making sure they have clothes on their back, a roof over their heads and food in their bellies is our top priority, but most of all we want them to feel loved and supported no matter what life throws at them, we will never abandon them and always be there. We especially never want our little man Kye to feel he’s a burden or any different to our other kids just because of DMD.

I love each and every one of my children equally, I see them all as unique individuals all with different needs, they are all completely different, sure they share some character traits and prominent features they get from both myself and my husband, but they have such different personalities; for instance our eldest son has so much of me in him, he sees the world straight up as it is, and will tell you so I’d have to say he is very opinionated like his mother; then take our eldest daughter she has parts of me in her, but has much more of her father in her with her state of mind and how she perceives the world, she is more positive and much less opinionated like her father. Our second born daughter is such a mixture of us both, she’s artistic and musical like her mum, but has more of her dads’ serene temperament, less inclined to confront people or cause any waves. Then we get to Kye, he is such a kind little boy who really has his dad’s temperament, but has very OCD tendencies which come from mum and requires a lot of patience (which mum doesn’t have lol) and well our youngest Jack he is cheeky and witty, full-on and lets you know when he’s not happy (like mum), but is the spitting image of his father, the only one of our 5 kids to get his dad’s blue eyes and blonde hair; my point is they are all different and require different levels or care etc. It’s up to us as parents to ensure our children don’t feel segregated and if they do feel left out or let down we as parents need to do something to rectify that situation, they take their insecurities out into the world and I feel it’s important they don’t take our insecurities and inhibitions with them too.

There is no such thing as a perfect parent, as there is no such thing as a perfect human (maybe captain jack sparrow or Iron Man come close lol ;) )…. Children do not come with instruction manuals, they don’t turn on and off at the push of a button we as parents do the best job we know how to, we all make mistakes and question our decisions and what is best for them, we all do things in different ways (even though society is so stereotypical of how children should be raised); as far as I’m concerned there is no certain way, who made those rules, who said bed time had to be at 8pm or breakfast needed to be eaten in the morning, or sleeping in is bad etc., those things are all fabrics of society, and yes a routine works for some, not so good for others. I think as long as there is unconditional love and the ability to put our children’s need’s first it’s a good start.

Having a child with special needs I know is hard, it’s hard and seems so unfair to have to deal with all these extra appointments and things that are necessary, and many of us at times just don’t want to do them, we just want to have normal lives…. Well these are normal lives, these are the lives we were handed, the life we were given to live; we don’t get a second chance it’s not a dress rehearsal, we get one shot at it (as far as we know). I get so annoyed with society and its views on what is normal and what is not. We are not lives creator, we just follow along these stereotypical patterns of life and continue on this perpetual cycle of judgment and ridicule or what is right, what is seen as normal, abnormal etc. it’s mad! I say follow your own pattern of life, not a single one of us is identical, even identical twins have different persona’s and their own feelings and thoughts if we were all meant to follow the exact pattern of life we would all be born the same, think the same and look the same, uniqueness if what we all have in common; be your own unique self and don’t let others make you feel insecure for being you.

The world has become so stereotypical about everything, I am sick of people saying oh your too fat or oh your too skinny, ugly or beautiful NO we are who we are and our body image should never define who we are or let others define who we are, beauty comes from within, you can’t make an ugly heart beautiful no matter how beautiful the outer shell may appear to be. I tell everyone life is precious, spend every moment you can being happy, remove toxic people from your lives and surround yourself and your family with kind and beautiful souls, people who nurture and bring the best qualities out in you, those who make you smile and brighten you day, those who show unwavering support even in the darkest of moments, life can’t be free from bad, there is always an element of bad, but that bad really should highlight what is good in our lives without experiencing heartbreaks and hardships we couldn’t ever appreciate joys and triumphs.

Be thankful for the air that we breathe, and remember those appointments may seem so overwhelming and not what you had planned in life, but those appointments can make the difference to how much time and the quality of that time we have with our precious children, we have to do things we don’t want to in life and how we perceive those tasks influences our happiness.

I love being a parent, it’s the hardest and most challenging aspect of my life, but also the most rewarding and joyful aspect, I feel blessed to have 5 beautiful children and 4 beautiful angel babies (I wish they were here, but have no control over it, they were sent to us for a reason, part of our journey), yes DMD is part of our life but it’s not going to be the most important part of our lives, living and loving is going to be….. Love to you all