Friday, 17 October 2014

Down syndrome: A father's perspective.

Tonight I received this surprise email from my husband 
and I thought I'd share his viewpoint with you. 
It is October, after all!

It seems only fitting that the first guest post on this blog should be from Jacinta's Dad....

I am a father under siege – but in a good way. I was born the eldest of three brothers and grew up in a home of transformers, martial arts, cricket and army men. For the past six years Barbie dolls, ballet dresses and My Little Ponies have surrounded me. 

I have three beautiful daughters and the best wife a husband could ask for. So I guess having a son who would want to learn to kick a football, and follow in my footsteps is something I will just have to forget. But, you know what, I wouldn’t have it any other way. There is such a special bond between a father and his daughters. The affection and love we have for each other is certainly something I didn’t expect before my children came along. 

My three most vivid memories, and most emotional, are the days my daughters were born and joined our family. I’m usually not a teary person, but with the birth of each daughter I have blubbered like a child. The love I immediately felt for each daughter was literally timeless. It was like she had always been a part of the family and I couldn’t conceive of a time when she wasn’t a part of my life. Very difficult to explain to someone who hasn’t experienced it, as it isn’t like anything else.

Holding my first two daughters, I knew each time that I would love them forever, regardless of what situations they got themselves into or the scrapes and falls they would experience in life. I have such high hopes for my daughters. They are amazing people, each of them and I know they have the potential to achieve any goals they have.

Almost two years ago Peggy gave birth to our third daughter, Jacinta. I was so excited prior to the birth, I couldn’t wait to welcome another person to our lives and to experience that love for another being. 

A few weeks before the birth there were a few indications that something was wrong. We had declined genetic testing, mainly because it would not have had any impact on our decisions, we were always going to have Jacinta regardless of the situation. So I decided I wouldn’t worry about things that were out of my control and just focused on the excitement of another daughter. 

The day she was born was probably one of the toughest days of my life. The birth was very quick, we made it to the hospital just in time. In previous deliveries I didn’t watch the actual birth as I found that all made me a little queasy. However, this time I was fine and I watched as Jacinta was born. 

I saw it immediately … the joy and excitement were gone and my stomach felt like it had just fallen through the floor. It was clear to me that she had Down syndrome. The doctor, who obviously saw it as well, was very non-committal and uncomfortable talking about it, saying we had to wait for tests. I didn’t have to wait for tests, I knew! All of the hopes and dreams that I had for her were dashed in that instant and at that moment a vision of her life flashed before me and it was not promising. 

My only experience with down syndrome had been my auntie. She has what I would class as the ‘classic’ features and characteristics of down syndrome. Not a future I wished for my daughter.
However, I quickly got my shit together, two of the most important women in my life (Peggy and Jacinta) needed me to be strong and I immediately went into action. We were advised by the senior doctor that she had a myriad of medical conditions, including kidney, liver, heart and blood problems – and oh yes, most likely Down syndrome. I rang our friend Kristen Morrison, whose son Gryffin was also born with Down syndrome. She had spent five years searching the world for a solution to her son’s situation and she had found a number of solutions to overcome a number of the conditions associated with Down syndrome. She told me what I could do immediately and so I started to get it done.

The second hardest moment was telling my parents. It had been two days and I hadn’t really told them what was going on, just that she was in the special care nursery getting help with her breathing. It was that night at my Mother’s birthday that I told them. It was a tough reaction. Mum burst into tears and I think Dad was in shock. Like me, their main experience with Down syndrome was my Mum’s sister. I left that evening with the mood dark.

Two days later at my request, they met with Gryffin’s Grandmother, Glenys, who is a friend of both our families. She was able to share with my parents the love and hope she has for Gryffin and gave a truly positive spin on the situation. When I next saw my parents it was a different story. They were totally on board and ready to do anything they could to ensure Jacinta had every opportunity to achieve her goals in life.

It has been almost two years and a lot has happened in between, including major heart surgery and eight months of chemotherapy for leukaemia. It has been tough and Jacinta and Peggy have spent at least nine of the past 18 months in hospital. There have been days where I have sent our eldest daughter to school in mismatching socks and totally disheveled hair. 

So, almost two years on, what do I think? Would I have done things differently? Should I have insisted on genetic testing? Is my life better or worse?

There are times where it has been tough. I have tried to hold myself strong for the sake of my wife, daughters, friends and extended family. There are times where I wish I could just let it all go and let the emotion wash through me. But there is no time for that and as a father people are counting on you to be a rock and support the family. Of course Peggy is aware of how I feel, and some of my friends have heard bits of it, but I have never really sat down with someone and just poured it all out, and perhaps I will one day. So yes, at times it can be quite difficult. There are days where I watch Jacinta and see the signs of Down syndrome on her and it really pisses me off. Not for me, but for Jacinta. But these moments are few.

But I love Jacinta just as much as my other daughters. It is the same timeless love where I can’t really remember a time without her in our lives. I wouldn’t even want to conceive of not having her. She is such an amazing girl. Despite all that she has been through she has remained optimistic, positive and gives me daddy kisses and cuddles which are very cute.

But I do wish she didn’t have Down syndrome. To me Down syndrome is just like any other physical problem. It means that Jacinta is prone to other medical conditions and illnesses. It means she has to work a hell of a lot harder than anyone else to achieve the same development. I don’t believe in any way that the extra chromosome has any bearing on her personality. I strongly believe that who Jacinta is, is not in any way a byproduct of the Down syndrome. I have seen some families asked, “If you could cure your child of down syndrome would you do it?”, and many say ‘no’, reflecting that their child would not be the same loving daughter/son that they have. Without meaning offence to anyone, I vehemently disagree with this viewpoint. If someone came up with a cure for Down syndrome I would ensure Jacinta received it immediately. In the same way a broken leg does not dictate who a person is, neither does down syndrome. But just like a broken leg, it sure can make life more difficult. 

Now that Jacinta is born and a part of our lives, in retrospect would I have got genetic screening? No, not in an instant! She is my daughter, and despite the difficult times I love her and could not conceive of life without her. I have read stories of families who were pressured by doctors and families into getting an abortion and my heart breaks for those families as I know the guilt and regret they will feel for the rest of their lives.

We have had such incredible support. My parents have been complete stalwart troopers and have gone well above and beyond the call of duty. Do they treat Jacinta any differently from my other two daughters? No, not at all. I have been so blessed to have some of the best parents. This situation has only brought our family closer together. I will be grateful to my parents forever for their support during this time.

I think it is sometimes more difficult for friends than it is for us. There are times when I have been out with friends and I can sense they don’t know what to say and so end up avoiding the subject of Jacinta. This I completely understand. It can be tough. But I know my friends and I know they care. And even when they don’t say anything to me for fear of opening up a difficult conversation, the knowledge that they care has supported me greatly. If you are a friend in a situation like this, don’t underestimate the effect of just caring, you may not realise that what might seem like nothing can make all the difference. I am extremely grateful for my brilliant friends.

They say that adversity is the true revealer of character.  My wife is character all the way. I know it has been very tough at times, but she is the strongest person I know. She is such a fantastic mother to all our children and loves them all incredibly. I cannot praise her enough for what she has done. 

So, overall, despite the difficult times and challenges to overcome, life with Jacinta trumps life without Jacinta any day of the week. I love all of my daughters and wouldn’t trade them for anything. With major advances in neuro-plasticity I know that Jacinta can overcome the conditions brought about by Down syndrome and reach towards her own goals in life. I am optimistic about the future and don’t regret a day of it. Of course I wish Jacinta didn’t have Down syndrome, but it’s life and its full of all sorts of trials and tribulations. But it is our life and I am glad to have such an amazing family.

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