The Same

We are a month and 5 days away from Sonzee turning 5.  I really am trying my best to focus on the sheer fact that she will be turning five, that she is here to celebrate such a milestone; but the human side of me says that still is not enough.  It is honestly just not enough to be celebrating a milestone that I am not even sure she realizes is occurring.  The doubt in that fact alone is enough to bring tears into my eyes.  Watching her seize and sleep her days away otherwise is enough to release the tears straight down my face.  It just isn't fair.

We are a month and 5 days away from our youngest being officially more than 2.5 years younger chronologically from Sonzee, but developmentally 2 years more advanced than she will ever be, with an ever-growing gap as each day passes.  It hurts. It hurts in such an incredibly unexpected way.  Watching him as he gains every little skill.  As he speaks more words each day.   With each and every smile he flashes my way.  With every gentle pat and snuggle he gives her and concern he extends toward his bigger sister.  It just isn't how the roles are supposed to be.

I sometimes wonder if I will ever really wrap my head around the fact that this is the life she is destined to live.  I wonder if I will ever truly be able to accept that this is how it is supposed to be.  I wonder if I will one day truly believe she really is who she is and it was a purposeful genetic mistake, or rather not even really a mistake.  I wonder if I will ever be able to give up on what I still honestly secretly wish she could achieve, and the dreams of normalcy I wish her to have.  I wonder if there is ever going to be a way that I can look at her siblings and not have a cloud dampen it because Sonzee isn't or won't be able to do xyz.  The minutes and hours are ticking by.  The days are going by faster than I can keep up.  The years are speeding by at a rate I feel I am not even able to process, but Sonzee, she always stays the same. 

Twenty Days

Twenty days, two weeks and 6 days, 480 hours, three different ways to countdown the amount of time remaining until Sonzee turns two.  A birthday I am so grateful to be celebrating, yet anxious about occurring.  Her outfits have been purchased and are sitting in our home, yet I sit here with a lump in my throat as I think about Sonzee as a two-year-old, a toddler; merely a year away from becoming a preschooler.  I know I should focus on the positive, but the fact is I am going to have a toddler who does not roll consistently, does not sit unsupported, does not reach out for me, does not talk, and does not crawl.  I am going to have a toddler who does not eat by mouth and who cannot chew solid foods.  My youngest is going to be a toddler and this is not at all how I imagined it would be.

As Sonzee gets older I must consciously remind myself that she is not actually a baby.  If it were not for the labels in her clothing or the fact that her birth certificate is dated 2015 this would be something I would argue.  I watched her in her bouncer as she was chewing on her hand and all I could do was imagine who she might have been.  I suppose some would say that is not fair, and there are some who are more capable than I am at accepting what they are given, but that is not me, at least not today.  I assumed things in all aspects would get more challenging as she got older, but it is one thing to assume and another to actually live it.  It is the latter that is far more difficult no matter how much mental preparation I try to give myself.

Another year of Sonzee's life is about to be in the story books, and it is one that I never would have imagined writing.  So many chapters were challenging to get through, and there are times I look back and wonder how we all made it to where we are today.  It is when I think of those times that I feel even more blessed of what we are about to celebrate.  Then there are the words that have yet to be written regarding her development, and it leaves my heart feeling weighted.  This is one of those times on this journey where the weight of it all sits heavily on my chest and makes it hard to breathe.  I sit here wondering how is it I will have the strength to continue doing this up and down on the see-saw for years to come.  I am sure as the years pass I will look back and think how naive I was to think that "that time" was the hardest.

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Clothing

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.