Continuing… or Ending… Harper’s Story (Part 1)

I woke up to find that another CDKL5 child has been lost… or another way to view it is another CDKL5 child healed.  It’s a choice on which way you view it.  One, while still sad, speaks words of hope and positiveness that will help you move forward. The other brings remorseful, negative feelings and guilt; another piece torn from your broken spirit.  Both statements are correct!

With this loss of little Dani, I am flashed back to the day Harper moved on from this world in the wee hours of the morning. Then immediately I think back along the five years where every Winter through Spring we learned of too many children with CDKL5 leaving us.  I had compassion for this group of families then but no true understanding until it became my time to join them.

I remember I used to try and prepare myself for the inevitable experience of her loss by watching Harper sleep, thinking that being asleep is what she will look like after she left me.

I would let myself imagine it just to the point of tears and vomit and then bring myself back to the reality that she was still alive and safe with me.  I would hold her a little longer that day and make sure she was looking me in the eyes when I told her I loved her.  I didn’t know when, but I knew her day would come.  I guess I was trying to prepare myself as best as I could for what I would feel when it happened.  So that I would be able to be strong for her and my family despite my sorrow.

I must admit I’m tired of being strong!  I have had to be strong since the day she had her first seizure.  Strong for Lily, for Harper, for Dustin.  I cried in isolation and I still do.  Last January I was strong while she lay there and her body slowly stopped working.  I have had to continue to be strong today while we continue to find our new normal. As we hear of others joining our group of loss.

While at his grandparents’ house Seth stops and stares at this picture. With everyone watching him, he tilts his head and points to Harper. Proud and sad at the same time I have to be strong and say with a smile (and no tears), “Yes that’s Harper!”  And when he repeats her name, I have to be strong enough to pick him up and praise him without tears because despite his precious recognition of her today, soon he will only know about his sister by what Dustin, Lily, and I tell him. That she loved him. Even though he won’t remember, he will know.

Don’t misunderstand, my kids see me cry. But it needs to be a good balance of understanding versus uncomfortableness.  I never want them to feel as though Harper cannot be discussed because they don’t want to make Mommy and Daddy sad.  I also want them to know they do not have to cry over Harper all the time either.

I’m tired of being strong when we go to a family get together and Harper’s not there.  I miss seeing her in her chair smiling at all the chaos.  I miss seeing her in the rearview mirror of the van as we drive to familiar places around town.  I’m tired of having mental breakdowns internally.  What you see me do is in no way a reflection of how I am feeling.  I’m tired of being strong and want to just go for a while and be weak because I am heartbroken.

I am in a group of people you can no longer recognize because we do not push a wheelchair anymore and I am scared.

I fear the day someone asks me how many kids I have and the answer mistakenly comes out “Two” instead of “Three” with no hesitation.  I fear the day Seth is asked how many brothers and sisters he has and he says “One sister.”  I dread moving forward in life creating memories that Harper will not be a part of.  But I know we must not stay frozen and we cannot go backwards.  We must move forward but I am scared. I know to overcome that fear I must be strong but I am tired of being strong.