Friday, April 3, 2020


Rock painted by big sister Meena in honor of it being 2 months

April 3.  The date that has been marked in my mind for months.  It is officially 4 months since Sam lost his dad and 2 months since we lost Sonzee.  They say everything happens in three's, so to say we have been nervous about the approach of today's date is probably an inadequate understatement.  Despite the trepidation of waiting to close out today without losing someone we care about, in general, today is weighing heavily on my heart.  The air is seriously so hard to breathe when I actually focus on the fact that it has been two complete months since she was last in my arms.  It becomes even more difficult when I consider that it isn't supposed to be this way.  None of my dreams ever included becoming a special needs mom and then having to bury the child who earned me that title.

Many still feel awkward asking me how I am doing, some ask as if nothing has even happened.  There have been moments when I really have been doing okay.  There have been moments when it has taken everything within me to embrace my inner Golden Globe performance in order to function.  I wish I knew in advance which conversations would be no big deal and which would result in tears either flowing or attempted to be hidden.  It would be nice if I had a magic 8 ball to give me some morning guidance as to how the day would unfold.  More often then not, I am still just finding my footing in this quicksand.

It has become increasingly more difficult to hide from it all.  All of the kids are home but her presence is gone.  I spend a good portion of my days keeping my mind preoccupied with projects, helping the kids with their classwork, and working myself.  If I stick to the mental hamster wheel I won't get pulled into the abyss of grief; but randomly throughout the day, the glimpses of grief are unavoidable.  It's sneaky, creative, and always when I am least expecting.  Moments that follow a seemingly innocent memory or thought of calmness are the worst.  I sometimes find myself wondering if there is a way to go back to a time where she was physically here, but then I quickly remind myself that it wouldn't be best for her.  It is a sound argument that logic cannot deny, so it buys me time until the next sneaky approach.

Many moments are spent reminding myself she was only 4 but she did in fact live.  Many times are spent wondering if it would have been better for her to have lived another 5, 10, or 15+ years only for us to end up in this same position.  I sometimes even wonder what if she never had a CDKL5 mutation, would we have lost her at 4 regardless?  Does it even make sense to hypothetically wonder if one way is worse?  I don't think there can be a worse when it comes to being a grieving parent, it is not a role anyone volunteers for, it's right up there with a Hunger Games assignment.  It's just a random fluke of a horrible lottery where you pray the odds won't ever be in your favor so you don't have to celebrate the milestone of counting the days of your life you are now spending without your child.

The Mighty Contributor

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