Mia's Story

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Mia's Story Mr Seizure And Uncle Hospital

Mia, Mr Seizure And Uncle Hospital.

Mia's story is heartfelt and often we as parents with children with disabilities and chronic illness are living on the edge with their limited life span. These kind of stories are a reminder that life is short and that they should not be forgotten. R.I.P Beautiful Angel Mia. - Tanya Dennis.

My story started in March 2002, just over 10 years ago, when my beautiful little girl Mia was born.  A textbook pregnancy, the birth went without a hiccup. I was taken to my room while Mia went for her shots.  

However, it was not long after that I was taken to another room and isolated from the other mums. I was informed that Mia was doing funny things with her eyes and failing to thrive. Mia's heart was not working correctly and within the hour we would be air lifted to another hospital. The hospital staff thought it best to have a photo taken with her right away, as they were unsure she would survive the trip.

Thank god though, she made it there safe. The doctors diagnosed her with Tetralogy of Fallot; a congenital heart defect. Encouragingly, we were told that a simple operation would fix her and we could be home in 2 weeks. However, the real nightmare was only days away.

After a week of tests, the doctors booked an appointment with us and social workers to reveal that Mia had important genetic information missing from chromosome number 1. Her syndrome was so rare, that they didn’t even have a name for it.  It was referred to as 1P36 (One P Three Six) deletion syndrome and that the diagnosis for our little baby was that she would never hold a cup, walk or talk.  With her heart the way it was, she was probably unlikely to survive the next 2 months. They strongly urged us to think hard about the decision to give her the operation she needed for her heart as quality of life would never be that of a normal child.

We spent a further 3 months in the Sydney hospital and Mia started having her first seizures. I tried to hide my fear of something else being wrong.  Our medication journey also began. A procession of drugs such as phenobarbital, sabril, lamictal, frizium and epilim. Mia was having about 50 myclonic spasms and 30 tonic clonic seizures a day.  This resulted in a lack of development and ongoing fear that her heart would not cope.

By this stage we had come to the decision that we would not give her the heart surgery but instead allow her to live out her life, comfortable, loved and happy. We still had no idea what that would really entail.

There were many more hospital stays to come.  On two occasions at home I revived Mia from cardiac arrest.  At a loss, I would walk my hallway at night crying and wondering if Mia ever smile at me and how I could stop this pain for her.

As Mia’s seizures had forced her to stop feeding, I had become accustomed to the old NG (nasogastric tube). However, I never gave up on teaching her to eat normally when we had the seizures under control. It was worth the persistence just to see the look on her face when I would give her something yummy.

The years seemed to pass so quickly. The days were full of specialists, physicians and occupational therapy. Support from family and friends waned over the years; Mia’s high dependency scared a lot of people. I lost friendships. I found it too hard to watch as their child developed and Mia never did. A wonderful blessing in knowing Mia was that she filtered the real people in my life.

So many times I asked why?  Sometimes I would call the hospital late at night and ask if it was because I drank tap water or laid in the sun. I desperately wanted a reason or an answer or somebody to blame. I was grieving the loss of a child but I still had my child in my arms. The pressure and responsibilities eventuated in a relationship breakdown.  Things were now about to get harder.

I found myself secluded as I did not trust strangers to care for Mia and she could not communicate her needs to anyone else. As she got older and heavier, it got even harder to bath her and do our daily chores. Mia was still regularly in hospital; my sadness seemed so deep and unfixable.

As Mia reached 3 and a half, I found that I had completed my five stages of grief (shock and denial, anger, bargaining and minimising, despair, and finally acceptance). One morning, not sure exactly when, I woke up and brought Mia into my bed for our morning cuddle. I realised in that moment what it was that we had been through together and that it didn’t matter that she couldn't talk, walk or even smile. What mattered was that she trusted me for everything and she had chosen me.

Before having Mia I had no belief in myself.  Despite the fact the she was not expected to make it through the night every time she went to hospital, I challenged this and kept her alive. What mattered was that I had her in my life and had so many opportunities to see the little things that not many others get to see and I was grateful for that.

Mia and I spent the next 12 months together very happy. Sure we still dealt with Mr. Seizure and Uncle Hospital, but by this stage we had a wonderful network of special people in our lives like Tanya Dennis and Jaden Dennis-Marler. That made me feel like I had found the family that I belonged in.

Mia was also given a gastrostomy during this time which made life so much easier. At her 4th birthday and beyond, as the winter months crept in, Mia encountered yet another chest infection. She also required an urgent nissan funder application due to her peg leaking and causing other difficulties.

Sadly, Mia never recovered from the operation.  She spent three weeks on life support and then her liver and kidneys shut down and we were forced to make the final decision to turn off her life support.

Six years have passed since my gorgeous little girl became an angel and I am finally living a happy life again. Life after Mia was a new journey all together. A journey that without the courage and strength and dignity that little girl had taught me would never have been possible.

Reading this, you may have only just started your journey and may not yet realize just how lucky you are. In time, once all the shock and fear settle and you grow into your new roles you too will feel the gratitude that I have allowed to flood into my life.

One of the ways that my counsellor helped me with my grieving was to teach me a new way of thinking about Mia’s life. I am not sure how spiritual you are, but I was told that special children choose their life and their surroundings. They have no lessons to learn this life time, they choose to donate their souls to the people of their choice in order to teach them something. Possibly Mia and I were together in a past form of life and she could see I needed some guidance, so she placed herself into my life, blessed me and then got back to doing what she was doing. Mia had no voice because she had nothing to say, she could not use her legs because she had nowhere to go. The day that I had her I promised to do it all for her and I did.

My life today is filled with love, compassion and patience.  Most of all I believe in myself.

Thank you Mia for the four and a half years you gave to me.

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