Fathers days

Hi everyone! 

I hope all you dads out there had a fantastic Father's Day . I just wanted to share this with you 

My husband (Tony) keeps himself to himself and never reveals his true feelings. Yesterday he put up this status on Facebook marking what Father's Day means to him. Be warned ! You will cry so have your tissues ready

In February 2001 my life changed forever, my first child was born, the most beautiful and perfect baby boy. 

Words could not describe my joy and excitement.

I was already dreaming of all his future achievements….

After a few ours of enjoying my baby boy things changed and didn't go as I hoped and dreamt. In-fact they’re just about as far removed as they could be from those early dream filled days. 

Our son had contracted a deadly blood infection and was given hours to live. The phone calls to and from home to from joy to sorrow.  

What happened that day literally turned our world upside down and changed our lives forever.

We prayed and begged god for forgiveness  if we had done anything wrong. I went to Guru Arjan Dev temple and prayed and prayed to give our son strength to pull through. Our parents went to various temples to do Seva. We brought priests into the hospital to pray. Our family and friends were there by our side, shoulder to shoulder. He started to show signs of getting better and later on in coming weeks was out off danger. 

We named our son Arjan Surjit Singh Dosanjh. It was only right and we believe god saved his life. Guru Arjan Dev Gurdwara was where I prayed so much for his well being. I also believe my dad was looking down on us and gave him strength. Arjan was a fighter and spent 8 weeks in intensive care.

Once home we knew he would have Cerebral Palsy and Delayed Development. Our journey into the unknown world of special needs began......

Looking back, the 28th February 2011 was a defining moment in my life. Things will never be the same again for me or my family.

As it's Fathers Day it seems like a good time to share some of the things that make being a special needs Dad, so difficult and so different, but more importantly so special and so rewarding.

It’s tough on Dads too!

There’s no point glossing over the obvious. Having a profoundly disabled child is hard; it’s hard on the entire family. Just how hard is difficult convey to anyone who hasn’t been in that position.

It’s widely accepted that special needs parents are acutely affected by stress especially around the time of diagnosis. This stress is often compounded by a sense of grief that results from this loss of one’s initial hopes, dreams and expectations.

The journey can be particularly hard on Dads. We males tend to bottle things up, we’re less likely to share our worries and stress with friends or loved ones. Us dads continue to keep our heads down. Pretending instead, that everything is fine so that we can support our family. Added to this is the overwhelming assumption from society that you’re a man, so you’ll be grand. All of these can make it a very isolating journey for a special needs dad.

 

Of course I’d change things if I could

I don’t get people who say they wouldn’t change anything. That doesn’t mean I don’t love my son, I do, more than words can say, but just that I would love to make things better for him.

Its easy to get angry and frustrated

I like to think of myself as a fairly relaxed and chilled out kind of person. However, the last few years have tested this part of my personality to the limit at times.

Whether that’s just from the sheer physical and emotional exhaustion of it all or from the massive sense of injustice that hangs over me.

Injustice in the sense of why us – why our child? Injustice at how our society treats disabled people, regardless of how advanced and accepting most of society sees them self. 

I get unbelievably angry with people  who, continue to complain about minor things or are stressed and haven't got time for this and that!

Nothing prepares you for having a child with special needs, but that’s not an entirely bad thing. I’ve learnt so much in the 3 years since my son was born, I feel genuinely privileged to be his dad.

Our lives our unrecognisable now to what they were, and indeed they are unrecognisable from that of our friends and family who are our age. 

I sometimes feel like I’ve entered a parallel universe, one that lets me view things in an entirely different light. If my son has taught me one thing it’s knowing what is important in life. Different certainly isn’t always a bad thing.

You just have to go with the flow

Like most dads, I like to think of myself as the organiser, the leader of the pack!!

On days out, holidays whatever it happens to be I used to have them sorted long in advance so I knew what to expect, what we needed to do and when we had to be somewhere.

That was before, now I’m just glad if we get out of the house. As our son gets older he’s getting better, but for several years his severe sensory processing disorders meant that no matter how well we planned something, it could be over before it began.

Having a child with special needs helps get things in perspective. Now we just take things as they come, if the day goes to plan then brilliant, if not then there’s always another time!

As Arjan continues to grow and develop, so does his sense of awareness and love towards us. It’s a beautiful thing to see him roll around and smile and laugh at Peppa Pig. He hates Muddy Puddles. Sometimes it's hard to believe what he went through. 

Getting to witness this inbuilt human kindness is something very special and something very few will have the privilege of seeing.

 

It’s not true, you don’t get used to no sleep

I have no idea who came up with this nonsensical idea that parents get used to living with no sleep. I can only guess it was someone who had a child that maybe didn’t sleep that well for the first twelve weeks of their life. Tough as that may be and yes you probably do get by on very little sleep over a short period like that, try doing it over many years, with no end in sight.

Add to that, the fact your child isn’t a 10lb new born that you can carry around in one hand, they are a 2 stone 3 year old with low tone meaning they have no way of supporting them self or of taking their own weight when they are up all night screaming in agony with something associated with their condition.

It’s a love like no other

My son has never said a single solitary word to me apart from a babble of Dada... I'm not sure if he knows what it means but it makes me feel warm. That may be the only word he ever says....We may never go to the pub for a pint together, we’ll probably not manage to get to many sporting events together, certainly not in the ways I’d imagined when he was born. But for all this I love him more than life itself, I think I’m probably over protective of him, but I’ll make no apologies for that. He cant speak for himself, so that’s down to me and his mum to help him I’m a dad on a mission and I’ll do everything I can to make sure his life is as good as it can be.

 

I’m one of the lucky ones

Regardless of everything I still think I’m one of the lucky ones. My little boy brings so much joy and love into our lives, and his smile brightens up the darkest moments. I know that in his own wee way he’s happy and for me that’s all that matters.

So to you all you Dad’s out there – Happy Father’s Day!