Yesterday she told me that this boy had passed away in August from heart problems - often associated with that type of Ataxia. I am assuming she didn't tell me at the time because she knew it would upset me. It upset her understandly because she has spent many years hearing about his son, she felt for him, being able to associate with their situation and also the news brought fear to her heart for B as she is very close to her and loves hers dearly.
I can understand that fear. That is two children within a year who had an Ataxia that I know of "personally" who have died. One was 15 and this boy 18. My B is 13 now as the years progress, the risk gets higher. I hate that.
When you read this, you can perhaps understand a little more about why I get so scared about B especially when she see new developments which actually effect her health and progression of the disease itself.
And that is also the reason why I DO treasure each day I have with her. Because tomorrow is too much of an uncertainty not to.
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2 comments:
Life is simple not fair. Just brawled my eyes out reading your post. Totally understand and you just amaze me even more. Your a very inspiration , amazing person.
What a beautiful picture of the twoofyou!
Oh I do understand that horrible feeling of itcould be us...he death of a child is terrible to comprehend and when you know your child is similar inany smallway it brings their frailty so directly into view.
I am so glad you are able to treasure the times you have building memories and making today count!
I mythoughts and prayers often!
much love
Tina
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