Tuesday, 21 August 2012

Remembering what's important

Its day 13 and i never believed in my wildest dreams that we would be spending this much time at home during mega therapy. Granted, it is very unusual and hence i am super grateful. we are not getting too excited though or ahead of ourselves yet as the doctors have assured us he will get sick and when he does he will be in hospital for a while so for now and today we are just really thankful.

He's been great today, sick, but happy and we are all so very happy to have him home with us.

I got to spend some much needed quality time with my daughter last night. We sat up watching tv and chatting about all things ten year old- school, boys, 'home and away' etc. I haven't sat and watched tv with her since early this year, before this all began. We watched the X Factor which was nice, took my mind somewhere else for a moment or two. seeing all the proud parents watching their kids perform. Our love for our children is truly like no other and you could see it in their eyes.

It was really nice to spend that time with Layla, we both needed it. It came at a cost though, as jayden did not have a good night. His feeding machine was also going off all night and danny and I were tagging to get it sorted. but even though my eyes were hanging out of my head this morning, it was worth having that time with her.

Unfortunately though my son Luke was not as fortunate. He always seems to be the one that misses out the most and it's so evident in his behavior. He goes to bed earlier than her so he wasn't with us.
He's Difficult at the best of times but when jayden became ill he's definitely taken bad behavior to a new level.

Most days I understand and if I get a moment on my own with him he's good. But this morning was not most days. I was tired and didn't react well to his once again bad behavior over something trivial but meant something to him, and I lost my cool and got very cross with him. Things came out of my mouth that shouldn't have and no doubt may scar him for life along with this whole crappy situation. I'm left thinking, how can I do that? I know I can't be super mum but I wish I could be at least close to that. Wouldn't it be nice if i could get it all perfect. Keep it together and not lose my cool.

Luke is a beautiful boy and truly very loving and caring. He's amazing with his brother and awful too, but completely normal sibling behavior. He doesn't cut jayden any slack because he's ill which is good for jayden to feel normal. However it's that lack of understanding of this situation that is so very hard for Him. He's just not old enough to get it and even if he were I'm sure it would still be hard for him to cope with. I wish i could be better at dealing with him. He deserves that much. I can only hope that he grows knowing I love him just as much as jayden even though from a child's perspective it my not seem like it.

I even missed his moment in the spotlight the other day at school assembly and I was so sad for him. His little face showed so much disappointment when i told him we weren't going to make it. Both him and his sister had something they were saying in the microphone at school assembly and we weren't there because we had to take Jayden to hospital.

When I was growing up my parents worked so much that they were never at our assemblies or any event in fact that we were participating in and I promised myself I would not do that to my kids as I knew how that felt.
Of course I understand now as an adult that they were doing their best but as a child it was heartbreaking. So to do that to my own kids the other day was truly crushing.

My friend and sister both videoed it for me but of course it wasn't the same, certainly not for them. I watched in the video my sister did, both of them at separate times look out into the crowd and I knew they were looking for us. I know that because that's what I always did. Even though my parents said they couldn't make it I still looked, hoping, on the off chance they did. My heart ached watching their little faces doing that for it was a reminder of what they are missing now.

It was hard enough to share myself around my once three well kids but now with one so very ill and so very little, its almost impossible. In fact it is so imbalanced that it would seem extremely unfair in the eyes of a child.

I hope that one day they grow to understand how hard i tried to meet all their needs. I know im failing dismally in some areas but i hope I'm doing ok in others. I hope that they can look back and understand, that in some way their feelings they have now will make sense to them later and they won't feel unheard. I hope that I am listening then, when they need me and that I won't be preoccupied. I hope I will hear their cues and be there, for at the moment I know I must miss a lot of them.

I picked Luke up early from school today because I couldn't stop thinking about the morning. Jayden was sleeping so we got to spend a good half hour together reading books and playing with his dinosaurs. It's those moments that are important, not all the other crap we tend to worry about. I want more of those moments when just being together and nothing else, is all that matters. I hope he remembers those times and not what he is missing out now.

- Posted using BlogPress from my iPad


  1. I'm sorry your family is having to go through such hard times and I know there's nothing I can say that will make it all better, but after reading several chapters of your blog, I just wanted to say: your honesty, heart and strength shine bright. Despite the perceived mistakes you think you have made just know that you are doing an outstanding job under extreme conditions. Love is a powerful thing and you clearly are, one of it's beacons. I will keep you guys in my thoughts.

  2. The fact that you have written this blog entry in such an open and heartfelt way shows just how much you love your children. As they grow older they will understand. You are an inspiration and very obviously a fantastic Mum. My heart breaks for you and your family. I wish you all the strength you deserve and need to get through this hard time in your life. I pray for you all and the health of your darling Jayden.