Monday, August 8, 2016


One of my favorite parts of having 3 girls is having "hand me downs".  There is just something about packing away clothing in storage that my oldest wore and then taking them out for my younger ones.  My memory is definitely failing in many areas these days, but when I open a box of clothing and take an outfit out, I am immediately transported back in time to when the outfit was worn.  I am always so excited about the memories the next daughter will make while she wears the clothing.  One of the harder parts of Sonzee having CDKL5, knowing the memories that will be made in these outfits will be completely different.

Last night I did the clothing switch for Sonzee.  It was time to finally get all of the 12 month and smaller clothing out of the way to make room for the 18-24 month outfits.  I sorted all of the clothing into piles and began the task of filling up bins and bags.  Sonzee has a younger cousin now, and so it gives me a reason to organize, as I am so excited to continue to pass on the ridiculous amounts of girl clothing I have in the attic.  In the past these clothing swaps haven't been all that emotional, but this one was especially challenging.

As I opened the box of 18-24 month clothing and took our each item, the flashbacks of my older two girls flooded my mind.  I was smiling at my memories when that dreaded sting and waterworks production snuck up on me without warning.  Each item I took out took me to a memory of the girls walking, running, laughing, being super cute 18 month old sassy.  I can remember a picture of my oldest wearing a romper sporting her first set of pigtails holding her sippy cup with her right leg bent and toe pointed with such divaness.  I remember that day like it was yesterday.  I took out the jeans and shirt that my 2nd daughter wore the first day she decided to walk consistently (which by the way was two years ago last Friday).  Sonzee won't be doing that in any of this clothing.

I am trying to stay positive and tell myself that maybe with these outfits she will laugh for the 2nd time and or smile consistently? Maybe she will get to sport her "I can sit" sticker in one of these dresses?  Maybe she will bear weight while wearing a cute pair of gently worn shoes that one or both of her sisters didn't wear for more than 5 minutes because they had so many shoes to choose from?  Maybe she will bear weight in her arms and knees and learn to crawl?!  I guess we have time to see what new memories will be made in these dresses, skirts, and shirts.

However, these are the moments that make this journey especially challenging.  It's times like this that I try and take a positive outlook, but the sadness and anger poke their way in.  Why couldn't we just be like the majority, with 3 silly girls and 1 crazy boy all healthy and happy?!  Why aren't I chasing my soon to be 18 month old around and getting frustrated that she is skipping her naps?! Why can't I lay her down and give her tummy tickles and have her belly laugh so loud that it makes everyone else start to laugh as well?!  I hate that one of my most favorite parts of having 3 girls has now also become one of the saddest.  With each outfit I put into a drawer my vision becomes cloudy and my feelings are split between hope and reality. But with all things CDKL5, I guess this is just par for the course.

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