So the diagnosis came and good case scenario would be if she lived to ten.
When in the world can that be described as a good case scenario?Thoughts ran through my head.
What would be worse, losing her sooner or losing her later?
What a thing for a parent to think. I felt guilty thinking that. I felt distraught and inconsolable.
I felt guilty thinking of her funeral. I just couldn’t think straight at all.
The doctors said it could be one year, it could be two, and it could be ten. They are all quick to say that they have no time but there will definitely be an earlier end to our sweet Stella.
It’s unfathomable, heart breaking and utterly devastating. How was I meant to go on living life normally?
It was bitter sweet bringing her home. All the while we’re happy to have her home, while secretly we knew her diagnosis and we’re overcome with grief. So we decided to stay positive......
She was already a lot different to any other case. Her liver was still fine, she made it out of ICU, she could recognise us, she did things intently, and she was our “star” and she will be different. She’ll shine through this.
We had to think this way.
We couldn’t let it bring us down. She needed us to be strong and we had to believe in her.
((((Chelsea)))) you know how I feel :(
ReplyDeleteDon't you ever feel guilty for what you are thinking/feeling. There is no right or wrong way to deal with the most devastating, heart breaking news of your life. Something no parent should ever have to go through :( Live it, feel it, do and say whatever you need to, to help you all get through each day the best way you know how.
You are an amazingly strong woman (Stella must take after her Mummy). The fact that you can get yourself out of bed each day and care for your two beautiful children proves this.
Stella is incredibly strong and truly a miracle. For what she has been through and to still be here with you all. Well done Stella Bella x I hope that with each passing week, month, year that she continues to do things differently. And I hope that one day they do find a cure.
Always sending love and hugs your way and we will see you and the darling Stella and Jett soon.
oxo
I'm just reading your blog from the very beginning to present, and I wanted to wait until the end to comment but I had to stop here and say something.
ReplyDeleteI am so mad at the world for this. Your daughter is beautiful and this isn't fair. I'm praying that things get better from here. I will keep reading (and crying, no doubt).
You are a beautiful mama. xx
I have just come across your blog and am still reading through here but had to comment. As you say here, this sort of news is just unfathonabe, and totally and utterly devastating. This was me over a year ago - my seemingly healthy newborn daughter stopped breathing and was moved to ICU. The way you descibe the diagnosis is so similar. I was being so positive, that the tests would find something and it would be okay. The thought of her dying never entered my mind! I feel for you with the stays in ICU as it is not an easy place to be in, and seeing your baby with all that equipment while they look different too, its not easy.
ReplyDeleteMy daughter had a different mito condition but they also suspect the POLG gene. It was such an anxious time, being told she had a serious condition in all her body cells, where she may live a few years, months, weeks if we were lucky.... how is one suppose to accept that? We had to say goodbye to her a week later, her little body couldnt keep up the fight.
My heart goes out to you and your family. This is a truly dreadful disease.
Marina
You are truly amazing and my heart sinks that Stella fought so hard and it is so so unfair xx
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