My Family.

I have asked my family to write a few things down on what it was like for them individually when I was born and growing up... Here is what they have said. 



Dad

My name is Barry Aliis dad. A small snippet about how I felt at Aliis birth.

In 1989 my job changed & in turn offered far more security for the family unit. It also ensured we could move to Basingstoke. At the same time Julie and I really yearned for a baby girl.Throughout this 4th pregnancy Julie kept saying she felt very different to the previous 3 pregnancies which were boys.

Alii arrived on 29th April 1991 after a very difficult birth. We soon realised something was very wrong as there was a lot of commotion in the delivery suite.

When I first saw Alii I noticed she had no roof other mouth and when she cried there was no sound. I tried to reassure Julie that it would be fine. Alii was taken to SCBU where she was placed in an incubator.

I had to return home to look after the 3 boys.I had somehow kept it together in the hospital but as soon as I got to the cari burst into tears. I’ll always remember the song that played on the CD on the way home was ‘someone saved my life tonight’ by Elton John. That moment was the start of a lot of difficult times. A lot of time in hospitals and numerous big operations.

After a lot of trials and tribulations the end result is a beautiful brave well adjusted/ all young lady of whom I’m extremely proud

Well done Alii love you Dad



Phillip

I had just turned 9 years old when Alii joined our family, having 2 younger brothers I was happy as Larry to be having a sister join the ranks.

The last couple of months of the pregnancy I realised all was not what it was supposed to be, the word breach was bandied about all to frequently and Mum and Dad tried to explain what was going on. Mum laying in funny angles on the couch, Dad rubbing her belly trying to entice the about turn needed.....alas to no avail.

Alii arrives - Even with the preparation of our parents I do not think it dawned on me exactly what was going on nor how serious it was, Adam (my younger brother and second in line, 7 at the time) obviously did. I remember him not going to school the day of Alii’s arrival....

Friends and family rallying around - All I remember of the first week or two (or month or 6) was the amount of friends and family that rallied around us. I was 9 years old, I was kind of old enough to know what was going on but was all to easily sidetracked with different games and days away that kept my little mind occupied. 

Fragile - I cannot explain in words just how fragile Alii was, She was tiny! She had a little face that I had never seen before and I remember Mum and Dad explaining why this was. I remember going into SCBU week in, week out. Other children would come in and then leave after a few weeks or so, not Alii. She’d gone from Basingstoke to Southampton and back and spent what felt like what was an eternity there, slowly building up the strength and weight to be able to be allowed home. I remember how I felt, I can only really imagine what Mum and Dad were feeling!

Home life - quickly it became apparent that Alii’s care was going to become all consuming for the foreseeable future, I remember being taught how to do mouth to mouth, mouth to nose and how to correctly use the suction machine if the worst was to happen. I have never forgotten those moments and could comfortably give that care now should I need to. I had to grow up and quickly! I did but I was also happy to regress in to being a rebellious child at the drop of a hat, something that a 9/10year old can not control it would seem.

Feisty sod! - The reasoning Alii has gotten were she has is because of this, she is a feisty sod! Adam and I (being young and 18months apart in age) would often have little ruckus’s, I remember more often than not Alii being 2-3years old coming in between us and telling us off in her broken English as she could not speak properly......you do over there, you do over there OTAY! OTAY! For someone that struggled with her speech she couldn’t have put it more eloquently at times! For the record whenever I am being a bit silly with my partner I still now say OTAY when we are having conversations, it makes me smile thinking of her telling us off almost 30 years after the fact! 

Childhood - I have had many conversations with many people about this but the cold hard truth of this is Alii had this stolen from her, she didn’t have the childhood I or 99% of folk had. With that said It also needs to be said that she also very nearly did not have a childhood, let alone an adulthood. The fact she is here is a testament to every single one of the nursing and doctors on Mr Whitaker’s team. A childhood stolen? A life saved many times...... long live the NHS!

Reflection - Now a Mum herself to a beautiful and healthy daughter, Alii has reflected upon what she has been through and asked her family to put their thoughts into words. This in order to perhaps help people cope going through the same as we did when she was younger. 

Memories - I can only imagine some of the memories she has, what I hope is that she thinks back to when she wasn’t Ill and how we tried to treat her like a normal young lady (other than swimming) She had 3 older brothers and although she was fragile she wasn’t shy! She would actively seek out some rough (and WWE staged) tumble!

Her eldest brother Phil xxx

Neil

Hi, I'm Alii's brother Neil, Alii has asked me what it was like growing up with a disabled sister like her.I will be honest this is something that worried me, to open some of the things / memories that i had put to the back of my mind, locked in a box that i didnt want to open...haha

I am 4 years older that Alii so was very young when she was born. Growing up with her was always fun, but also very challenging. Alii wasnt normal but as a brother/ family we did out best to make her feel normal. we knew as a family what her limits were so we created games that would make her have fun. Like nits (Alii will know what this means).

Obviously Alii was poorly alot and we spent alot of time at the hospital, it felt like a second home.My memories bring back some really hard times, Alii has had close calls a few times... Thank god for the NHS. I don't want to dwell on these moments as no words can describe your feelings. Even at a young age but just feel thankful in the end.

My nature growing up was to try and stay out of trouble, as I could see that my mum and dad had enough on their plate. A release for me in stressful moments was playing with my micro machines, it was Also a coping measure through the stressful periods, which there were a few.

My mum and dad tried very hard to do everything as normal, football matches cricket matches and so on. When we had a break from the hospital we all made the most of it. P.S Christmas in hospital, is still Christmas just with a twist. 

When growing up, at points I did feel left out. A lot of my parent's time was spent looking after my little sister. She needed the attention more than i did. I loved her so much I didn't really care about me, even at a young age you understand.

My mum and dad were very strong through the difficult periods, being a parent myself no I can appreciate how tough it must have been. 

I am writing a small snippet to help parents understand that kids understand a lot more than you think.Keep the fun where possible and cuddle when you can't keep it fun. 

Stay strong for yourself and your children just remember its not forever and cherish all the moments, you only live once.