Tuesday, May 8, 2018

Handling it...

It has been a year and 3 days since this post was written.  I was around 2.5 months pregnant and too afraid to talk about it, for so many reasons.  I had lost the pregnancy before, we were debating on what, if any prenatal testing we would be doing, and I was so afraid of people who knew our situation with Sonzee judging our decision to have another child.  While the odds of having another child with CDKL5 are extremely rare, especially since neither Sam nor I have a mutated CDKL5 gene, we have 3 other children without a mutated CDKL5 gene, and because Sonzee's mutation is de novo, we were not really concerned that our next child would have the same mutation, but what about something else?  I distinctly remember carefully choosing the closing sentences of that post because I was trying to believe this to be the case.
I do believe everything will be the way it is meant to be, but no, I do not always feel things will always be fine.  I do however believe no matter what it is, you will be able to handle it.
 Here I sit a year and 3 days later wondering if I am "handling it".  Part of me feels like a completely unraveled ball of yarn.  I feel the lowest in my belief of "everything being fine", in having faith that this, our life, is what "is meant to be", and that I am actually able to handle everything being thrown my way.  I do not recall a point in my life that I have been so afraid of what new piece of information I will be given.  When everything "works itself out", will it be what my both my heart and brain want and need?  I do not feel special because I was "chosen to handle" the situations I have been given.  I know it takes a much higher level of person to feel blessed and chosen to be fighting certain battles, and to be honest, I am just not there. 



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