Monday, 7 January 2013

Another day and counting down the days till Jayden's next MRI. Watching him even closer than before if that's even possible. His every move under my Internal microscope. Every time he wobbles on his feet, coughs or looks at me funny, my anxiety levels climb.

He woke the other night and didn't know where he was, both danny and I tried to speak to him but he seemed to be in a daze. He then started crying and asking to go home. I held him tight in my arms and told him he was home and mummy is here. His arms were floppy but his back was rigid and he wouldn't respond to me when I asked him if he wanted to layback down to sleep with mummy. But by the third time of asking him I finally heard his little voice say, yes mummy. Oh my god that was the best sound ever. I cuddled him and stroked his beautiful hair until he fell asleep again and laid there watching him for the longest time after. Worried senseless that I may have witnessed another seizure. He was fine for the rest of the night and has been since so we hope it was just a nightmare.
As expected I didn't sleep well that night and worried about my son and his future. It's easy to say to live in the now but sometimes it's hard not to look further.

I sat in the doctors waiting room today but this time it was for me. Jayden came with me which is certainly not ideal given all the bugs that go through there but he wouldn't have me leave him at home with dad. As we waited and he played I watched another mum enter and sit down with her two much older children. I'm guessing they were probably 12 and 14. I sat there watching them and it made me sad. It made me sad and a lot jealous that she probably never had to think about whether her children would make those ages but instead take it for granted. i know thats likely because that was me once. I sat there wishing that was still me, that i didn't have to wake each day worrying about the future.
Worrying whether or not my son will still be in my life next year, the following and so forth. I now live each day and at the end of it am so grateful I had that day. But I wish I didn't even have to think about it.

Jayden had a good day today. He was really happy, didn't have much of a nap but happy. He helped me with all the stuff I had to do around the house and we fed Layla's Guinea pigs together as Layla had a sleepover. Nice to hang out.

In the evening He enjoyed a bubble bath thanks to a relative who gave him some bubble bath for Christmas. I stirred up the bubbles and as i did I was reminded of a time when he couldn't take a bath and it saddened me but also made me feel so grateful that he is now. that he is able to enjoy one of life's pleasures, a bubble bath.

hes laying next to me asleep now and luke is as well. my two precious boys that i love so very much. I'm watching them sleep and hoping they are having happy dreams. that they both grow old together and have that special bond that brothers do. I like to think that that will happen but also know the very real odds. but i want to believe it will and run with that thought. Make it as real as it can be in my head in the hope with all my might that it will become that in real life.

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