A few weeks have passed since my last entry and I’ve got to say it’s not getting any easier knowing what to say. I so much want to continue what has been created here but I’m struggling to cope with writing this stuff down. What was difficult to do when Maddie was alive is now becoming impossible now that she’s gone.
Whilst I’m back at work and look relatively composed from the outside, that’s far from the truth. The pain and anguish rips into my stomach, my head, my heart, everywhere, everyday.
Our routines have changed so much. I guess having more than one child you would continue to do a lot of the stuff that you’re used too like bathing, making dinner, playing around. That’s all been taken away from us given Maddie was our only child.
I miss her. We miss her. The whole family misses her. I find reflecting on the good times makes me even more sad because I want her back just that way. Somedays I just want her back in any condition – even if she was dead. Just to hold her once more. I would give anything for one more kiss.
We’ve been trying to keep busy and have been going out a lot and “enjoying” ourselves. It’s all a bit of facade really when I think about it. Nothing will ever be the same anymore.
Georgia and I returned from our time away a couple of days ago. The first thing I did was go in and sit in Maddie’s room and howl my eyes out. Being away almost gave a false sense of what has happened. I expected to see Maddie again when we came home.
It will be 4 weeks on Monday since Maddie died. It seems like yesterday but it also seems such a long time ago. The visions of Maddie’s last few moments are constantly going around in my head. Nightime’s are the worst. The sound of her final breaths seems so vivid every time I put my head on the pillow. I’m sure this will haunt me for the rest of my life.
There are many, many people we want to thank and will do so over the coming weeks. I haven’t yet decided how exactly to do this but I guess we’ll work that out.
I’m not too sure what to do with the website either. I’m not sure if writing more stuff is a helpful thing or not. I do know that I want to keep the site up as a resource for any parents who may have to experience this horrible nightmare we have lived. I know that we were crying out for real life stories when Maddie was originally diagnosed. No amount of medical books and web sites can give you the insight that a real life story can.
I’ve finally decided to sit down and attempt to write something about the last few days. A lot of you who have been keeping tabs with Maddie’s story were present at her funeral yesterday and it was wonderful to see all those faces – many of whom have played major roles in supporting us through Maddie’s illness.
Maddie had a simple, beautiful and very emotional farewell. There were many tears and the occasional smile as we all remembered her in our own special way. I was very apprehensive at the beginning of the day and as the time got closer tried to remain composed and think about how I might feel. I don’t think I could ever have been prepared for how I felt pulling into the church driveway in the funeral car. It was a very surreal feeling like I was dreaming and that all these people waiting were imaginary and this whole thing wasn’t really happening.
Unfortunately it wasn’t a dream and walking into the church was the most difficult part yet. Tears streaming down my face I wanted to turn around and run away. We hadn’t seen Maddie’s coffin before and it was a very big shock to be confronted by it. I just couldn’t get over how small it was and the images of Maddie lying inside were pushing through my head and scaring the hell out of me.
Aunty Caroline reflected upon Maddie’s short life and her impact on everyone around her. We were truly touched that she could firstly, remain so composed, but, secondly, to be able to put together all these words in a matter of days since Maddie’s passing. It was uplifting stuff and we even managed a few smiles along the way.
I so much wanted to carry Maddie’s coffin out of the church by myself – as a final gesture of what Daddy could do for her. In the finish I had to give in to reality and realized it would be a little awkward for me to do it on my own. Grandad and Uncle Paulie helped me carry Maddie out and it will go down as the longest 25 steps of my life. I couldn’t bear to look at anybody as we made our way down the aisle and out to the car. The sense of being in a dream had well and truly vanished by this point. This was reality at its harshest.
We took Maddie off to the crematorium with the family and this is something I’m not comfortable talking about at this point in time.
As we made our way back to Bibby and Papa’s for something to drink it was very much a time of reflection and I couldn’t help asking myself ‘what the hell do we do now ?’. It all seemed so final. I think just then it dawned on me that I would never see Maddie again – not in this lifetime anyway.
We are taking a couple of weeks off ‘our normal life’ ( whatever is normal anymore I’m still trying to work out ) to spend some time together and prepare ourselves for the next few months, which will undoubtedly be very, very hard.
Maddie’s funeral will be held at St Peter’s Anglican Church at Were St, Brighton on Thursday 19th December at 10.00am. Georgia and I would like to see the many people who have been touched by Maddie and her remarkable journey.
I will attempt to write some more words after the funeral. I’m not really in the frame of mind to do much at the moment.
Maddie passed away peacefully at 3.11am this morning. I was so proud to be able to hold her hand and her heart when she left us. She was at home where she belonged and we are forever grateful to the wonderful support we’ve had from our family, our doctors and the Bethlehem Palliative Care team nurses over the past couple of weeks.
Maddie has deteriorated rapidly over the last couple of days. She is still clinging to life by the barest of threads. She continues to defy us all – the doctors and nurses included – with her strength and determination and will to live. We are praying so much she will let go and be at peace.
Her breathing is very shallow and her pulse is very weak. It should only be a matter of hours now.
Maddie is heavily sedated and has been asleep for the last 24 hours. She wakes occasionally for a little drink but not very often. It appears like the tumor has progressed further. The back of Maddie’s head is very blown up with fluid along with a large lump in the middle.
There has been a noticeable difference in her appearance today than from yesterday. She is very pale and looks to have deteriorated further. It’s comforting to know that she is comfortable and not in any visible pain.
The last two days have been a living hell. Maddie has been very restless and agitated and at times seems delirious. We have increased the morphine and midazolan doses but they haven’t had a huge effect. Maddie was awake all of last night and it has now come time to give her a stronger sedative.
It is very distressing to see her so upset and we need to calm her down for her own comfort and for our own sanity. I can’t even begin to describe how difficult this time is. Each day we try to refocus and draw some strength for what lies ahead.
Maddie is still fighting on. She occasionally wakes up for a few minutes and has a little drink. It’s comforting to know she knows we are there. The nurse is going to increase the morphine levels today as Maddie has been complaining of a sore head when she has woken and she also seems very agitated.
Maddie is now almost permanently asleep. Her breathing is very shallow and she can hardly acknowledge that we are there. The doctor agrees that it’s only a little while now.
I am so proud that we have been able to create a peaceful environment for her at home without having to go to hospital again. We so much wanted Maddie to be in her familiar surroundings with all her toys and books and Hi 5 videos and Mummy & Daddy and we’ve managed to achieve that.
Still it is so, so difficult waiting and knowing there will be no reprieve but not knowing when Maddie will fly away.
We have a sign on the front gate to keep people away (except medical people) as it’s been too overwhelming these last few days. I understand the family have their own needs but right now we’re feeling very selfish and do not want to share Maddie with anyone else – not for a single minute. We are scared and frightened and angry and most of all heartbroken. It is not fair that this horrible disease can strike without fear or favour on someone so young. Our daughter.
I’m probably ranting a little by now but I’m just typing without really thinking, just what comes out. I’m terrified to go to bed and turn the light out. Night time we feel so alone and so vulnerable. Aunty Caroline is staying with us and she’s our security I guess in case we lose it altogether.