Jaxon was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) 5 days after his second birthday (Feb 2011). His mother told me that Jaxon is the seventh (7th) child in Canada to be diagnosed with this rare disease. I am his great-aunt Louise and I come up with the idea of this blog to keep people informed, and to use my passion for stitching to raise money for the FOP organizations.
Saturday, November 1, 2014
November 1st - where has the time gone
I am definitely overdue in posting, my sister called me to ask if I was still alive....hmmmm, yup! So what have I been doing over the past couple of months, to be honest - not a heck of a lot. I visited my friends Roberta and Peggy in Massachusetts in August - the aim was to get a lot of quilting done. Welllll, hmmmm, I took lots of fabric down there with me.... and of course I did bring my stitching with me and did I get a lot done? - that would be an emphatic no. (Big sigh) However, I did enjoy the week spent visiting, we laughed and chuckled and laughed some more, I wish I lived closer than the 8 hour drive but hey that's life. So what else has happened, I have been busy with my Dad - some days more than others. I realize how fortunate I am to still have him here. He will be celebrating his 90th birthday in January but there was times this past year when I wondered if he would even make it to his 90th birthday. He has been so frail this past year and has started to develop some health problems and after much nagging (I do admit it, I was nagging him) he has finally started to use a cane or his walker when he goes out. And that only started 2 months ago (I won't tell you how long I was after him to use a cane). That said, I make sure that I talk to him every day just to make sure that he is doing okay. I have to laugh because some of the conversations are very short (less than a minute), while others we talk and laugh for at least 5 minutes!! I am enjoying the time that I have with him because I know that he won't be around forever. So if I might be so bold and suggest something to you, tell your loved ones that you love them because we never know how long we will live or how short our life may be. On that note, love you dearly, take care of yourselves. Big hugs, Louise
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