The Realisation…

I will never forget the day when everything made sense. It was a Wednesday. Amelia had been out of hospital for just under a week, and we had our cleft nurse coming over to check up on her.
I remember talking to the nurse about Amelia’s cleft operation and when it would happen. She said that it probably wouldn’t be until after she was one as they wouldn’t want Amelia to be in hospital during the winter for fear of her picking up something.

This all felt really strange but then I realised the feeding issue had nothing to do with her cleft palate, it was her condition. She looked at me as if a light bulb had just gone off above my head.

I just knew what I had to do. I needed to be alone with Amelia and finally read about the condition that is making my baby’s body fail her. My mum took Penelope and I sat there on a dark winter’s afternoon and allowed myself to google.

One of the first things all doctors and specialists tell you is to not google anything. Its true. Don’t do it until you are completely ready and almost at that acceptance stage.
I sat there with my phone and googled Nemaline Myopathy. I found some genetic research, but I didn’t understand it. Next I came across the NM support group. The founder of the group, who also has the condition, is very well educated on all things nemaline.

Then I saw it… the Severe Newborn Onset, with all of the symptoms listed.

It hit me hard, I felt like I was reading Amelia’s discharge papers and write ups, everything I was reading was Amelia. It was like an epiphany, suddenly everything came rushing back, all the comments and the looks started to make sense. I remember saying oh I know she will walk, and it was met with silence and glances. Its crazy when I look back now, it’s all there screaming at me. At the time I couldn’t see it at all I was in the complete denial stage, I wasn’t ready.

I read on to diagnosis and life expectancy, and there it was, the ‘up to two years old’

I burst into tears. It was like a puzzle before my eyes piecing itself together. Two years! Now it all made sense. The shock of the hospital stay, the hospice, the looks of all the nurses and doctors we had seen, the constant I’m so sorry when any professional spoke to us. How had I not seen this?

I kept reading and looking through Amelia’s notes and trying to compare. I was a woman on a mission and I wanted answers, I wanted someone to tell me how long I had with my daughter.

I held her and cried. I couldn’t believe it, everything since the birth and all of the trauma afterwards. I thought we were over the worst of it but it felt like it was happening again.

Paul came home and I wasn’t sure if I wanted to tell him what I had read or been told from the nurse. He could see it in my face that something was up. I told him everything and he said that it was what he read the day of the diagnosis, on the sheet that the geneticists gave to us. It gave us this clarity. Finally being on the same page, the elephant in the room had been addressed. We both needed this confirmation, albeit it wasn’t from our specialist, but it was pretty clear to us. We just sat there remembering all the moments and everything that led to us seeing it now.
In some way it was like a weight had been lifted, like a big breath out and finally I felt I was above the water again, rather than just keeping my head up.

I called our community nurse that next morning and explained what I had figured out or finally realised, I think if she was able to hug me down the phone she would have. She knew all along that this wasn’t a great prognosis for Amelia but she could see we were no where near ready. We Still had the innocent hope of a miracle. She is amazing and I don’t really know what we would do without her. She told me to call Keech and she would call them too. It was time to face it and they had the help we needed. I was on the phone straight away and they were over the next morning. If I had known how much I would grow to love these women I wouldn’t have believed it. My community and my Keech nurse are walking angels, they are honest with me and caring and tell me straight (because they know that’s how I work). They have helped me so much to become this strong medical Mumma.

Keech are amazing, they do everything they can to help. That morning they came over was a day I will never forget, for many reasons but mainly good. I was open and asked a lot of questions, very dark questions that I needed the answers to. I needed to know as much as I could. It felt good to have that level of support, 24/hr support should we need it. We were also introduced to the centre and how it could help us especially with the siblings play. Siblings play is where you can go to keech with all your children. The siblings of other children with life limiting conditions can all play together and also have a break from helping with the care.

I just remember thinking I can do this; I can be the mum that both my girls need me to be. Don’t get me wrong it’s bloody tough, and the days after that were a mix of emotions but we got through it. Sometimes it feels like your whole world is crumbling around you, but it’s not, its rebuilding itself  even stronger than before.