Jayden's lost hearing in his high pitch sounds due to chemotherapy and needs to wear hearing aids. While there is no background noise and you are close to him he hears fine but when he goes to school neither of those things will be happening. We therefore know we have to work towards getting his hearing aids back in. I have to say it breaks my heart to do anything more to him, and it worries me that kids will look at him like he is different even more so than they already will with his bald patch at the back of his head and big scar as well and his difficulty in running, jumping etc. but it's a small price to pay so he can learn. And all I want to focus on is him actually getting to go to school. That will be a great day, to see him get to wear a school uniform and be in school with his brother. I do hope with all my heart I get to see that day.
So we went to Playgroup yesterday and Jayden loved it. So did I. It was a small group, which was even better and all the kids and parents were lovely. It is always nice to be around people who have challenges in their lives with their precious children and just 'get it'. They know nothing can be taken for granted and it just makes you feel not so alone. Their children may not have a life threatening disease like Jayden but they do have their own challenges. Cochlea implants, hearing aids and other challenges. Really lovely kids and parents.
We were there for the morning where Jayden got to do plenty of activities which he loved and on our way home he fell asleep in the car. No surprises there.
Our friend and hairdresser came over later in the day to cut everyone's hair and Jayden was due to have his first ever haircut. however, it didn't happen. He just didn't want to get it done and none of us were going to push the issue. So we will just wait till next time, no biggie.
It's the next day now and Jayden woke up his sprightly self as always. We had our cup of tea together and snuggled up on the couch to watch children's program's. I love this time. As I sit there I think of how precious he is and how lucky I am he is sitting next to me. That I can feel his skin next to mine, his heartbeat, hear his voice and see his beautiful smile. Every inch of him and him being here with me I am grateful for. I soak up everything about him and hope with all my might I get many many more years with him. I read again last night of a child passing with this disease and my heart sank. I know so well what we are facing and its so hard to remain in the now. I want to enjoy every second and I believe we do but in my head I am truly struggling. I don't think there is anyway of truly coming to terms with all this and I guess that's something I just have to except. Live the unknown and accept it as that.
He is now sitting down playing Lego and so happy in his peaceful little world in his head. So content building blocks on top of one another and no thoughts of anything else but his tower. One by one he builds and with his hand he makes an imaginary man and chats about him climbing the invisible stairs to the top, his fingers its legs and up he climbs to the top.
I love him so much. With every breath that I take I love him more. I truly hope he gets on top of this dreadful disease as his hand does his tower. that he smashes it within him and we never see it again. That he is one of the 10%. That thought is the only thought that gets me through each day.
- Posted using BlogPress from my iPhone