Monday, 1 July 2013

Don't Dismiss The Guilty Feeling Inside - Down Syndrome and Me

The moment that you fall pregnant you have a dream.

You dream of what and who your little bean will grow into.

As that little bean grows, so do your hopes and your dreams as well as the question mark over what that little bean will be like as a big bean.

When that bean arrives you look into that bean, now your beautiful baby's, eyes and you stare deeply and although you now know what they look like and how they have developed whilst inside you, you still wonder what life will bring for them.

When your baby is taken away by the doctors for tests and you have no idea why, you start to worry about your baby and it's health and that becomes the question now on your mind, not who or what they will become.

When the doctor says 'we need to chat to you about baby'... That question mark on your mind grows and begins to throb along with your heartbeat but still, your heart is ever hopeful that all is ok and maybe baby is just a little larger or smaller than normal and so they are being over cautious and want to tell you so...

When the doctor says 'We've run some tests and we suspect that Baby has Down Syndrome' your dreams shatter, they break into more pieces than a jigsaw your nan used to do, then they rise up like ripped up paper in the wind and before your very eyes they drift into the distance unable to be reached.

Your bean, YOUR BEAN, Your perfect little bean, that you thought was going to be a a politician, a famous footballer, a musician, a teacher... whatever you thought up in your head during those long drawn out sleepless nights of pregnancy related discomfort. Whatever you and Daddy had discussed whilst thinking of names. Whatever you wanted... now in the air being blown away by every word and breath that comes out of that doctors mouth.

Those eyes that have just stared longingly into your own babies eyes dreaming of the perfect future ahead, now staring blankly at a doctor of whom you have just met. Staring but not actually registering what is being said, just focusing on the words 'Down Syndrome' and nothing else. Just those words, 'we suspect he has Down Syndrome', over and over and over again.

You suddenly wake up from your daze as you hear the words 'There is always an option of adoption'... 'What?' you say loudly with a slight startled look on your face! 'How dare you say that! He is my baby I will care for him, love him and nurture him and nobody else. Just me!' all said with more of an angry tone to your voice. The doctor goes on to explain that he has to say that as he has to give you all the options available and you feel less angry towards him and your feelings change yet again.

As the tears run down your face that anger turns from being aimed at the doctor, to being aimed at nobody but yourself. What have I done? It is all my fault. What happened whilst my baby was inside me that caused this? What did I do to cause this? I must have done something wrong for this to happen? But What? you ask yourself these questions over and over in your head and feel stupid and almost like you don't want to know if it is your fault, so you don't want to ask.

Of course it isn't your fault. It is in fact just something that was out of your control. Something that nobody can control. You can think of it as just fate or part of God's plan for you. You can think of it as anything you like, but no matter how many times you hear something of that nature deep down you wonder 'Why me? Why him?'.

But where do you go from here, the 'passionate new mum' candle has been put out by your tears and you just find yourself staring blankly at your baby or hugging him tightly and crying more than you've ever cried before. All the time thinking, what have I done? All the time wanting this nightmare to disappear and your baby to be 'normal'.

All the time you are thinking this, on the outside you are smiling sweetly and saying 'It is fine, we are just happy to have him here with us, we will take what comes and smile through it'.

On the outside you are coping.

On the outside you are dealing with things so well.

People Praise you.

Doctors give you more and more information and suggestions that just float around in your head and don't make any sense.

People come and people go, bringing their hope and happiness along with their gifts.

Although on the outside you see them smile and coo at your beautiful new baby, on the inside most will be struggling with what to say to you, whether they should even say the words, whether they should discuss it at all.

Deep down you are praying they don't. Knowing that the moment those words are uttered your eyes will start to leak and again they won't stop.

Time passes.

Everyday rolling into one.

Every single day hoping that you'll soon wake up and realise this is all a dream.

When you are ready, you read up on the diagnosis and you learn a little more about children with Down Syndrome.

One second you are reading a story which is so positive you break down again inside and think 'Please God let that be how he grows up, let our story mirror that family's'

The next thing you read makes you begin to fear the worse, you start to check everything twice and panic that the doctors haven't checked him over properly and they've missed something important.

Nothing seems to make any sense, nothing matches up. How can one family have had so much pain and another so much happiness yet they have the same diagnosis???' How on earth are you supposed to know what to expect if everything is so different and nothing makes sense.

Again your anger turns and it's more of a selfish nature that you are ashamed to speak of. What have I done to deserve this? Is this Karma? Did I do something in my past life to deserve this cruel turn of events? Am I that bad a person? this type of anger creates the basis of depression. This type of anger is silent and mentally kills you off piece by piece inside until you're empty.

All the time your head is going through this, you are still smiling on the outside. You save your tears until nobody is around so not to show your weakness. You don't sleep, you hardly eat and you are exhausted with the act that you portray to others about how well you are coping.

Then all that pent up anger inside you, all that self hate for what you think is all your fault turns, it turns and is aimed at your loved ones, your partner, This is all their fault! Why have they not realised how I am feeling? Why do they not see through my act? Why are they not feeling the same way I do? Do they not care as much?...

It then turns to guilt... Am I a hideous person for feeling this way? does this mean I don't love my baby? Does this mean I am a bad parent?

Life begins to be just one big blur. Hospital appointments seem to drift by, specialists come and go and every day life carries on around you.... but in your head you still feel the same way as you did back then. You still cry when asked about it, you still find yourself exhausted mentally, emotionally and physically. You still haven't fully admitted that you are struggling because you are scared to be seen as a bad mum.

You see other mums with children with disabilities smiling and campaigning for their cause, yet you seem to be just drifting by. You seem to be just, there. Not actually existing, just pottering along no longer in existence as yourself, just this ball of pent up emotion ready to explode at any time. You no longer have a name you are merely 'the mum with the Boy with Down Syndrome'.

Years later you still feel the pain of that diagnosis. You feel it but you've hidden it deep down inside where it can't get you down. Life has moved on so fast and he is now nearly 11. You look back at what life has thrown you and you still think Why? Why us?

Every day you look at him and mixed in with the overwhelming parental pride of how amazing he is, there is this lingering guilt. That guilt that this is causing so much of the bad in their life. The illnesses, the frustration, the pain... and there is nothing you can do about it.

If you could take that pain away you would. If you could take that frustration away you would. If you could relieve him of all his symptoms, illnesses and disabilities just for one day if not forever, YOU WOULD!

To let him live his life pain free, to watch him play with no boundaries, to hear him speak with no issues, to let him see no prejudice or ignorance in his life.... for this, you would give your whole life.

Is it just to see that dream you had all those years ago come to life just so your brain can release the pain of  grieving for that dream? For that 'perfect' child? Yes... No... Maybe? is this selfishness? More than likely but if this made both your lives better and there were no consequences... then no, no it isn't selfish.

This guilt, this grief, this pain, this loss you feel inside, this is also normal human behaviour.

It does not mean you love him any less than any other child.

This does not mean you are any less of a parent to them or him.

It doesn't even mean you've not come to terms with his diagnosis or that you aren't willing to accept it.

This just means that when you look back through all those years you would happily take away the issues that have come up due to the diagnosis that changed your whole world.

Even if you could change that, would you change who he is?

Never. You love him for him.

His disability does not define him. His personality defines him. Even if you could take away his disability you couldn't take away him. Many don't realise this. Many see Down Syndrome and can't see any further.

Sadly there are parents out there that will disagree with you, that will slate you for speaking your mind about the guilt you feel and the deep down hidden pain you feel inside. But that shouldn't worry you. That shouldn't make you feel that you are a bad parent and that you don't love them as much as they love their children.

This just means you are taking one step closer to healing yourself. One step closer to loving yourself and accepting it isn't your fault. To admit to the fear and releasing the guilt is the first step to acceptance.

This denial and amazing act that these parents portray, that everything is all rainbows and butterflies, is a coping mechanism that all parents of children with disabilities develop at some point, some better than others but often it defines the person and the parent they become on the outside. If they searched deep down, they'd admit that it isn't all sunshine. It is hard work bringing up a disabled child, mentally, physically and emotionally and not just on the parents but on the whole family and the child itself. The people who deny any ill feeling for the initial diagnosis, aren't wrong, these are the people who have no doubt been through this life the hardest and have packed those feelings down further and harder than anyone else.

Be careful though, some people who don't agree aren't actually in denial. These people are the people who admit that they have been through the above. These are the people who will stand by anyone who speaks out and who admit their feelings in order to make sense of them. These are the people who do not judge. They do not make light of a comment or speak down to you angrily or aggressively for stating them. These people are who will help you on your journey.

These people do not dismiss their feeling of guilt... As they know it is important to deal with it in order to create a peaceful mental well being for yourself, and in turn your children.

These people have dealt with their guilt and have come through the other side to join the actual butterflies and rainbows with every intention to help others do the same by not making them feel like you are a failure and sharing their story openly.

These are the people who admit to still feeling that sinking feeling whilst watching their child go through something related to their disability.

These are the people you should aspire to be as you carry on with your journey. As they have shown it is actually possible after all.

Just don't slip into denial. Admit your feelings and free some space in that brain of yours to fill it with love and support for yourself and others. It might take a lifetime and it might never happen... BUT...

Being honest with yourself is the most important thing.

All these feelings are normal and people tend to go through them all but not necessarily in any particular order and not necessarily to that extent or in those words. You can't speak for any other parent, or their journey, you couldn't even wish to try and understand how anyone else dealt with their diagnosis. Each story is different. Each choice still worth the same.

You can only wish to inform people that these feelings are normal, they are not on their own in feeling them. They are not a failure, a bad parent or selfish, they are but human.

What people have taught us over the years by being so open, is that there is no right and wrong when it comes to these feelings. Sadly people are hiding them more and more through fear of judgement as we open ourselves up to more and more via social media.

Those who judge others, are only judging themselves.

Always remember that.






The fact that I have tears streaming down my face whilst writing this just goes to show how much this subject means to me and so many other parents out there who share the same fear of judgement over their feelings on diagnosis. I know that these feelings can be translated to anyone dealing with this. It can be translated into every language, every disability and every diagnosis at any time of life. It is in fact a natural feeling that people get. I am nowhere near fully understanding or coping with Kyd's disability and I am nearly 11 years on. If this post helps just one mum or dad realise that their feeling of guilt is not wrong, then I have done my bit. If it helps people understand how people may feel when their child is diagnosed, even better. I don't want to preach to people and I don't think I can change the world or how people view it.... I just want to use my honest opinion and views to help others to come to terms with their feelings without condemning them to hell for something so natural. I hope that comes across. If it doesn't... I'm sorry. Not everybody is perfect.

17 comments:

  1. Samantha Brown1 July 2013 at 03:59

    THANK YOU!!

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  2. What an incredibly honest post, your love for your son shines out of the page. X

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  3. Rebecca English1 July 2013 at 07:44

    A brilliantly heartbreaking honest and beautiful post.

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  4. Sharon Donnelly1 July 2013 at 07:48

    So honest and raw and I also hope it helps some parents who are in your situation. People shouldn't judge you and the way you do things. Xx

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  5. Mary at Keynko1 July 2013 at 08:03

    wow! I have tears running down my face too! Of course every parent would wish for their child to be free of a life chaging condition surely - those who don't are probably in denial as you say, pity them darling - they don't have your strength x x x

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  6. A stunning, awesome post, Alice. Much love to you all x

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  7. Such an emotional and thought-provoking post, I'm sure it will help others who are feeling the same way. Nobody can judge anoter person's feelings or circumstances x

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  8. Wow. Your honesty is an inspiration, beautiful Alice x

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  9. amazing post alice x

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  10. What a honest and well written post, I just only wish that you never had to feel that way and that neither did anyone else. I think the whole acknowledging feelings could also be applied to so many other situations x

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  11. dude, I had tears streaming down my face reading this as well. You are truly epic.

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  12. Jenny @justphotosby.me1 July 2013 at 13:46

    So much of this rings true, so much of it makes me want to reach into the screen and hug you very tightly. So much of it is making me cry. That day of relief for your child - just that day rings so very true with me today after sports day. Much love sweetheart x

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  13. what a wonderful post x

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  14. I hope there are parents who draw strength from your courage and honesty Alice.Kyd is lucky to have such a strong mum who sees him for who he is x

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  15. Oh Alice, this is such an amazingly honest piece covering a very delicate topic! Well done for articulating your feelings. If anyone takes this post the wrong way they should really look at themselves and look deep.

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  16. Such a brave, honest post. So full of absolute adoration, love and determination. Your an inspiring mummy** love this blog, so uplifting!! Xx

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Thank you for your comment xx