There is a sense of urgency that occurs when your child has a diagnosis that has an undetermined length of life expectancy. It is really odd when you think about it, because essentially isn't that what we all have? No one knows when it will be our last day here on earth, yet the majority of us continue with our daily life as if we have a full 100 years to complete our desires. It is probably safe to say that unless you or a family member has been diagnosed with a terminal illness, you are not living your life as if you were dying. Sure as you grow older you may realize life isn't going to last forever and so you go on more vacations, you tell people your true feelings, and you may do more of what makes you happy. But why does it take living half of your life or having a less than desirable outcome to make you realize NOW is all you have?
I have been thinking about all of the things I have wished to do my whole life; travel the world, go on a zip-line, own two homes, (my list goes on) and it made me start to think about what I hope for Sonzee to complete in whatever time she has here on earth. Of course with her disorder we really don't know how much time she has remaining, and while yes any day could be our last, for her, it might come a lot quicker than any of us are ready for. I don't want to have any feelings of regret for her. I don't want to wish that she did more. So, I have decided that Sonzee needs to have a list of goals for her to start working on completing. Luckily, for her three siblings, this means that they too will get to benefit. It should not have taken until my fourth child, nor should it have required her to have a CDKL5 diagnosis for me to have my "aha moment", but here I am.
I could google bucket lists all night long, but I would much rather that Sonzee have her storytellers to help her complete this task. I would love you to reply to this post via comments, email, Facebook messages, etc. with what you think should be on Sonzee's bucket list. There are no restrictions, no limitations; all suggestions are greatly appreciated. We thank you so much for your support and I cannot wait to publish the outcome!
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