Sunday, June 25, 2017

....life with CDKL5

It has been 13 days since my last blog post.  It is not that I have not wanted to write anything, it is more I just do not feel like I have anything new and/or worthwhile to share.  Things are what they are.  Neither great, nor bad, just what they are.  I suppose overall that is a good thing, but it does not support writing a blog post.  I feel like in the two years I have been blogging, I have already written about most of the same topics that are now on my mind.  The same things happen repeatedly.  There is not much new in the world of CDKL5 and how it has affected Sonzee, and so I feel like I have no new insights to share.  

Life with CDKL5 for me is a life on repeat.  There is the same heartache of CDKL5 sibling losses, lack of milestones achieved, and obstacles to overcome.  There is the same amount of joy felt for the Sonzee-stones accomplished and wishes for her future.  There is honestly a little less emphasis placed on hope, but that is probably due to me being a pessimistic/realist in general and not so much due to the events of the last two years.  Although the past two years have definitely stolen some positivity from my general outlook and beaten me to the core.  Sonzee's health is stable and so we are thankful for that, but that does not hide the pain she experiences daily or the seizures/spasms that come and go as they please.  


I have been spending a good majority of my time these past couple of weeks living in the land of denial and excuse making in terms of Sonzee's seizures and pain.  To be honest, sometimes that place is a comforting place to be.  I will probably do as I usually do when I enter this zone and hide out here until I enter the good old panic mode of desperation that this will inevitably lead to.  Until then I will just carry on, praying things remain calm while we are in New York, and praying for the families who have children with CDKL5 who are in the hospital, just being discharged, or who sadly just gained their wings...because this is life with CDKL5.

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