Showing posts with label heart defect. Show all posts
Showing posts with label heart defect. Show all posts

Monday, 15 August 2011

Middle Child Syndrome doesn't exist in our house...

My husband is a 'middle child' and so is his mother. I always worried my Mr Middle aka Jack would suffer the "Middle Child Syndrome", because I can see it does happen to some extent. The eldest gets the attention for being the first, 'paving the way' and so on. The youngest gets the attention because they are the 'baby' and are allowed to get away with murder. Then there's the middle child, who can often get somewhat forgotten about....
Of course with our eldest, Liam, having such a severe physical disability there was always that worry of focussing much more attention on Liam than his siblings. So it was something I was aware of.
My husband still suffers from it a bit. And I remember my mother in law saying "poor Jack will suffer the middle child syndrome too". My inner monologue response was: "Not if I have anything to do with it!", and on the outside I did my usual nod and smile, because I am  a wuss polite.
Funny thing is, Jack had his own thoughts of: "Not if I have anything to do with it!" He went and got himself a Congenital Heart Defect, thus major attention seeking ensued with Open Heart Surgery. Then when we had a sigh of relief after it was all over, he must've thought "Damn I ain't getting this middle child syndrome thing" and it was revealed he has Autism.  Now that's a great way to not be ignored!!
Looking at my blog, so far Jack and his Autism have reigned supreme. But ask most families who have a child on the spectrum and they will say that a lot of the focus, planning and decisions are around the child with ASD. It isn't spoiling them, it is making life much easier and less of an uphill battle for the entire family. This is not to say Jack is more difficult than his brother or sister. He is just very different.. in a good way (and sometimes in a not so good way).
The ironic thing is, is that Jack wouldn't even notice if there was a bit of "middle child syndrome" going on. Well not at this stage. Although he does have an extremely close relationship with me and does show signs of jealousy if I am focussing on Liam or Evangeline. But overall he is happy doing his own thing and doesn't want attention from anyone else.
I am extremely aware of sharing myself around the three. I do spend a lot more time and energy on Jack and I do feel guilty about that, but at the same time I know the effort I put in with Jack over the next few years will be the greatest investment ever for not only him, but the whole family. And besides Liam thinks the sun shines out of Jack's butt! So Liam doesn't get too jealous when I spend time playing with Jack. Instead he just laughs at all the antics, which in turn makes me smile. Then there is Evangeline... all she will ever know is two brothers with special needs Superhero powers! I often worry what kind of life she will experience in her position. How it will affect her. I am hoping it will make her one of the world's most understanding and empathetic humans. I do take out time for her, so we can have our 'girly' days, but she will definately have a lot more on her plate than most girls.
So there you have it. There is no "Middle Child Syndrome" in my house. But I may have to come up with the syndrome name for youngest sibling with exceptional brothers... we shall call it Evangeline Syndrome for the time being *insert winky face*. I will try to feature my dear daughter a bit more in my blog*, because I don't want her reading this when she's older and having a bitch fit about how little she featured adore her to pieces and she needs to be celebrated too, as all our children do, whether they have additional needs or not.

*next post will be an Evangeline special edition

Wednesday, 11 May 2011

Where to start???

Okay so I have no idea how this will pan out, or play out... sounds like my life really lol. Oh dear I promised myself there'd be no 'lol'ing.
It's probably best I start with who I am...
Purely and simply... I am a 31 year old woman, married to my Knight in Shining Armour, with whom I have three beautiful and amazing children. The 'stranger than fiction' part? Oh well that's here, there and everywhere. Some of my life has been 'the norm' but I would have to say majority of it has been a wicked rollercoaster ride. The ride I think began in my teens when I suffered from Eating Disorders (ok that's probably more the norm thing these days eeek), and got the shock of my life at 15 when I was diagnosed with Type 1 Diabetes. My mum actually thought that the diabetes saved my life (from the anorexia and bulimia) but I did have relapses over the years. After the Diabetes diagnosis at 15, my whole family got the worse news ever when my mum was diagnosed with Pancreatic Cancer. I was 18, my mum was (ok I won't disclose her age, mum would not be impressed, she liked to keep that one 'mum'). Before I got to graduate from High school my mum passed away. She never got to see me graduate, go to uni, get married, have kids... something a lot of people tend to take for granted. I distinctly remember her saying to me as she was wasting away "The saddest thing is- I will never meet my grandchildren"... that has rung in my ears everyday of my life and has become louder since having my children.
After I graduated from High school I went on to university to study teaching. I partied extremely hard, which 90% of that partying I do regret, but I think that was my way of escaping the pain I felt from the loss of my mum. I suffered great bouts of depression, not knowing what I wanted in life, feeling lost and hopeless. I transferred degrees, then went back again to finish what I started. In that final year of uni I met a much younger man (I was 24, he was 18) and fell head over heels in love. We planned to be together for ever and so I decided to propose to him. Lucky for me, he accepted. Two months later we got a huge surprise... we were expecting a baby (to be born in Sept 2005)!
This was the start of the more major journey we weren't expecting...
The birth was traumatic and had complications. Our first born, Liam started having seizures and apneas after the emergency c-section. Months later we were to discover that the trauma at birth had caused a lifelong disability, severe Spastic Quadraplegic Cerebral Palsy. And so the beginning of an entirely new road... a road only the minority of people will experience.
We thought that our bad luck and traumatising experiences were over. Hmmm not bloody likely.. We wanted a sibling for Liam and fell pregnant in 2007. Half way through the pregnancy my waters broke and I had to give birth to my little boy Dylan, who was too young to survive outside the womb. My heart was broken. What had I done in a past life to get all this bad luck??? Ha! Well that was just the beginning. We became pregnant again in 2008. I was very worried but the pregnancy seemed to go well. Jack made an early appearance at 35 weeks, but he seemed healthy and happy. And we were extremely happy. Until we found out at 4 months old he had a congenital heart defect called Tetralogy of Fallot. The only way to fix it was with Open Heart Surgery. I couldn't believe it! So at 5 months old little Jacky had his OHS.
Now for another surprise... this time a good one lol. We were expecting another baby! Jack was only 9 months and we were in shock to say the least. As I neared the end of the pregnancy we started to worry about Jack's development... So he started Speech therapy at 15 months old.
Evangeline was born September 2010 and she was and is perfect! But I think my two boys are perfect too! Just a different kind of perfect. As Evy was blending well into our family, it became more obvious Jack was the 'black sheep'. Now we are on the journey of Jack being diagnosed with Autism Spectrum Disorder.
I know this is a heap of info to read in a first blog entry. My apologies. But I needed a kind of nutshell thing to keep you up to speed as a blog further. I will hopefully have entries organised in themes etc. So you don't have to pour through each individual entry if there is only one or two things you are interested in reading such as info on Cerebral palsy or Depression or Open heart Surgery or... you get the idea.