Mina's Story | More stories

Mina's Story

I was born on the 19th November 2001 at Royal Women's Hospital. I was born at 24 weeks gestation and weighed a whopping 604 grams. I spent 1 year and 1 week in Hospital (yes I had to spend my first birthday there!). In that time I was ventilated on and off, on maximum life support, had numerous blood transfusions, suspected seizures multiple infections, C-PAP, an MRI, a hearing test (which showed I was profoundly deaf) and nasal oxygen prongs (which I still need today).

Being in hospital all that time meant that for the majority of the time I was laying down, this meant that I didn't get much exercise. At first the Doctor's thought that this was the reason why I could not hold my head up, sit, roll over etc but then an MRI scan showed that I did have some brain damage and that my brain was small for my age. So I was than diagnosed as being "developmentally delayed" and that I may walk and talk in the future but at the moment there was no way of knowing.

In late November 2002 I was finally allowed to come home and live with my parents (thanks to Dr Colin Robertson!) and boy was I in for a change! No more bright lights, bustling nurses, no more needles (you should see all the scars I have on my hands, arms, feet and legs from all the needles and IV's I had to have) It took us a while to adjust to finally being with each other but we soon got into a routine.

In early 2003 we started to receive therapy from Specialist Children's Services (I received physiotherapy and hearing services). We worked a lot on my head control and I got to play a lot of games. I also got to use a jenx corner chair which was one of the very first pieces of equipment that I got to try and the first time my parents were introduced to how much equipment costs! But at that stage they had decided just to loan the chair and not buy it.

I still could not hold my head up even though I was 1 year old (corrected) and so in December 2003 (when I was 2 years old since birth) it was finally mentioned that I may have Cerebral Palsy and that was the reason for my "developmental delays". My parents went into shock and straightaway went on the internet to investigate. Cerebral palsy? What does that mean? What will it mean for my future? What will it mean for their future? What kind of life will this mean for us? We did not know anyone with Cerebral Palsy and were very naïve about the disability. What it means for us at the moment is that I still cannot hold my head up properly, I cannot roll over, I cannot sit up, I cannot do anything much with my hands (i.e. like pick things up, grip properly). But I can give my parents smiles and laughs; I can reach out and touch their faces (even though sometimes I accidentally give them a good old slap! - maybe sometimes it is on purpose, hehe) I am very cheeky and I have the ability to wrap them around my little finger! Especially my Daddy!

My mum went through "mourning" as she calls it. Mourning for the little girl that she so desperately wanted, mourning for the little girl that she wanted to have chats to, to take to a "normal" school, to take to High School, to see her go off on her first date, to go to University, to see her drive, to see her married and to give her grandchildren. Then my Mum realised that it was no good looking into the future and imagining what could have been but instead to focus on what she had now, and that was me, her little girl who may be disabled but was still so very beautiful and who was hers and who she loved with all her heart! So she had to just take it one minute, one hour and one day at a time and to give me the best life that she could!

Around this time we were finally accepted to receive services from Scope and it was one of the best things to happen to us so far. I am receiving physiotherapy from Ginny (who I really do love to bits and truly apologise for the bad sessions we sometimes have, and I promise to never let my mum and dad dress me in the top that says: "Can't do it, Won't do it" ever again!) I receive my Occupational Therapy from Kath (who does fantastic work with me and who I love to stare at and play with!) Speech Therapy from Enaksha (who put her foot down about me vomiting all the time and has done so much to try to stop it and investigate what has been causing it!) and of course our lovely family services worker Kerrin (who has let my Mum get a lot of things off her chest! And who is happier each day for it)

All of my support groups have informed and opened my parent's eyes to the reality of looking after a child with a disability. For example, my parents had this absurd view that the government fully funded the equipment that I required. Ha-ha, were they in for a big shock! The fact of the matter is that the government fails to even cover half of the costs required for funding my equipment and as a result you either have to put yourself in further debt, beg charities for funding, or just go without. Furthermore you wouldn't believe the long waiting periods before you can receive the funding!

Overall, my support groups have been fantastic. They have greatly helped us through the funding process and I now have a new wheelchair (a Kimba Spring buggy) which I love as it gives me a break from lying on the floor. I am in the process of getting a new standing frame and car seat base for my wheelchair. A lot of this is now being funded through McKillop Family Services which has really taken a lot of pressure off us!

Next for me is a cochlear implant (which should be done on the 20th of June, but it has already been cancelled twice so we are hoping it will happen). The doctors are not expecting me to talk but it is just so that I can hopefully understand a bit better about what is going on around me! I may also be having an operation to have a peg. My parents have only just started to accept the fact that it would be beneficial for me to have this done, though they are still reluctant, but are slowly coming around to the idea. I will also be going to Pre-school next year at Glenroy Specialist School, which my Mum is looking forward to as it will give her a few hours rest each week!

So that is my story, a pretty long one for a girl who is only 3 and still only weighs around nine kilograms! I am sure that it will just get longer and longer (I haven't even mentioned all the hospital stays I have had since coming home from the Royal Women's'!). But I think that the fact that we are all just taking everything as it comes and we accept the fact that I am disabled and that I will probably never be able to sit on my own, let alone walk on my own, helps us get through each day. We still have a lot of things to learn especially now I am having the cochlear implant and going to be peg fed! I know my mum and dad are stressing out about all these procedures and they are only looking out for my best interest, but we will get through it because we have wonderful support, from our families, friends and of course the special people from Scope and other support groups!