I just stumbled upon this amazing post by Life with Tyler, this sums up our life EXACTLY! Every little aspect of this defines us.
THIS is why I want to share our story, I want people to understand we are different and Lyla is disabled and that is ok. We have an amazing life and amazing friends and family, and just because we are up in our hot air balloon doesn't mean we, or Lyla, deserve to be treated any differently, or looked at weirdly, or be asked those questions or hear those comments, because I hear them on an everyday basis, and I don't need any ones sympathy.
I just want everyone to accept us, and be happy and grateful for what they have, instead of worrying about what they think we don't have.
OUR WORLD FROM ABOVE…
Being a parent of a disabled child makes you feel like you are on a completely different boat to everyone else. A boat way up in the sky…..
Actually its more like a hot air balloon ride.
You start off standing in the basket all alone, wondering why you have been put there.
Then you set off onto your life long journey not knowing what to expect.You get scared and you can’t get out. You cant talk to all your normal friends they dont understand, they are not coming with you. You slowly fly away from them. You can still see them on the ground but they cannot help you, you have to go up into the sky on your own with your child. The ascent upwards is very scary, all your emotions are tested to the limit. The wind pushes you from side to side and you can’t get comfortable. Fear sets in. Eventually the weather settles and the journey becomes easier. You become used to this new atmosphere over time, and you start to realise the view is quite amazing up here. It gets lonely at times, but you bump into more people in air balloons along the way, and you see that their balloons are just as brightly coloured as yours. You tie yourselves together and face the journey head on with your new friends.
You can see everything and everyone a lot more clearly up here…
People sometimes say “oh I’m so sorry to hear your child is disabled.. Or I wouldn’t wish that on anyone… Or how do you do it your amazing!… Ohhh that’s so sad…that’s awful”
Well the truth is it isn’t sad. You shouldn’t pity me or my son. And being depressed about it is not going to make anything better. We have a lovely life. It’s not a bad thing, having a disabled child. Its not a curse of any kind, a punishment or karma, it’s a gift. A valuable journey that makes you a better person. But the majority of people just don’t see that.
You won’t realise this unless you are a parent of disabled child. They don’t bring you any misery at all. They change your life for the better. They give you a new kind of confidence. You don’t get it straight away, it builds over time, but it makes you gradually stronger and stronger. It makes you grow as a person, makes you more resilient. You get what a lot of others don’t have.
Your unique journey shows you what truely matters and what is most important. My son has shown me life in and out of hospitals, and we have seen some really ill children. Some that have a very short life. We watch tv programmes about disabilities and children’s hospitals as it is all familiar to us. In return this has taught us to appreciate our health. We would never do anything to jeopardise it. No amount of money can buy you a new body. We appreciate every little thing we have in life. I take a lot of things with a pinch of salt now because it really doesn’t matter anymore, little things dont usually get me down. What matters is your health, the love of your family and happiness.
Things in a way become more clear. Each day has a purpose, you think ahead and of what you want your future to hold. You have been given a higher knowledge, a perspective on life. You truly appreciate everything when you have seen and felt the worst. You look at people that complain about trivial things and think “you should know how lucky you really are!”
If people stare at your child it annoys you, but on the other hand you don’t care, you have the confidence to say something if you have to. Ive heard someone say “shes too much with him she carries him absolutely everywhere!” But this showed me that some people (not everyone) don’t even have the common sense to think of the bigger picture, they dont sit and think “what if that child is disabled?” They are naive. They think all that disabled children have to look different to be disabled, this isn’t the case. We shouldn’t stare at people who are different we should smile and admire them. They are the ones who struggle and fight the most.
You are in a different world to “normal” people, but your worlds will always collide. You feel the need to educate them about your world but some of them just plainly don’t listen. You can tell they are not interested. You know then that you ARE a better person BECAUSE of the journey you have been on with your special child. You always listen to other peoples stories, and they think their whole world is upside down when really it isnt. They havent got a clue.
When you hear stupid comments from people, it makes you stop and realise you think better than them. You know not to say certain things, or to think twice before doing so. You have moved on from the normal persons state of mind. You don’t think like they do anymore, your mind and way of thinking has become more educated. You have a special gift not many other people have, you see life very differently to others around you.
You are not judgemental anymore. You think of peoples feelings. You don’t ever pick on anyone or take the mickey out of someone for being different. Because your shoe is now on the other foot, you can see everything from all angles. You have a birds eye view from above. You know when comments are wrong and you don’t laugh at jokes. Being different is something that should be valued, if everyone were the same it would be boring.
The most annoying of all is when someone just doesn’t believe just how disabled your child actually is. Oh but can’t he even do this?? Can’t he do that? Why doesn’t he wave or clap hands? Why isnt he talking to me? surely a bit of common sense would say “hmm maybe there is something wrong with him or hes a bit behind?” But it doesn’t.
Truth is we forget about milestones, they are out the window. It would be wrong of me to compare my son to a normally developed child. I don’t dwell on what he can’t do and what he “should” be doing. And it’s annoying when other people bring it up. He is DISABLED. He is unique and he will learn whatever he wants to when he is good and ready. He is happy being the way he is and people need to learn that he is who he is and he is amazing just the way he is. He will never be “normal” so please don’t compare him. He’s not in the same box as them.
Some times people say “I don’t know how you cope” we’ll I don’t know how you cope with your child! My son is the best behaved child I could ask for. He doesn’t complain, he doesn’t shout, he doesn’t ignore me, he doesn’t run around doing things that he shouldn’t. I never have to tell him off. Where he is always with me he will always be safe.
I can go out with him and know he won’t have a tantrum in front of everyone. He will happily sit in his pram and play with things around him. He is content and happy. He may not walk or talk, but the smile on his face speaks a thousand words. It lights up my world. Just knowing he is happy at that point in time. I appreciate all the little things he does do.
People who are disabled aren’t disadvantaged. Them and the people around them have an advantage, they learn much more than an average person and are given a new perspective and appreciation of life. They are enlightened. Being different IS a good thing, you learn more being that way. All the challenges you face will only make you a better person at the end of it all. The more challenges you overcome the better.
I sometimes wish I could touch people and let them walk in our shoes for a bit. See what we have seen. Then maybe then they would realise that when we see a disabled child they make us smile. We feel normal then. We dont pitty them, they make us happy.
They are part of our world from above.