Becoming aware

I prefer to do positive style posts because that is how it's best for me to deal with all things CDKL5.  The past week and a half I have spent each morning deciding which fact I would be sharing about life with CDKL5.  My goal is always trying to balance shedding light on some of our hardships while also putting a semi positive spin.  However, almost two weeks into this CDKL5 awareness month and it's safe to say it makes me more aware of just how tough life with CDKL5 is.

Over the weekend I wanted to share a fun fact or two about CDKL5.  I wanted to capture little bear completing some challenging task that requires her a bit more effort, or her sitting and being happy/content like a lot of other children with CDKL5 mutations.  I just wanted to share a picture of her adorable little smile, or maybe even capture a laugh...but none of those things happened.  So I skipped posting.  It's one thing to go on with our days experiencing each one of them as they come, but it's another to realize that things aren't so great.  I guess I don't give it much thought as a whole, but wanting to write a post makes me have to "accept" what exactly is going on.  

Sadly a typical day for Sonzee begins around 6:30am with her crying.  It takes Sam and I multiple guesses and attempts to calm her before she calms for a bit either in her bouncer, chair, or with some cuddles.  The calmness only last temporarily and then she's back to her cries and screams.  The rest of the day is a gamble of how much she will cry or be miserable.  The majority of days she spends clearly uncomfortable and so we spend the majority of our time trying to figure out what she is telling us so we can fix it.  We usually fail miserably and eventually we give up.  We change her position all day, give her cuddles, the kids attempt to play with her and entertain her- it's usually a major fail.  Eventually it's bedtime and thankfully she sleeps at night or occupies herself quietly in her crib.  Then we get to experience our own real life Groundhog Day on repeat...every day.

It's been challenging to adequately represent CDKL5 for Sonzee and be respectful of what I would think she would want me sharing as far as pictures and her day goes.  I guess this is the whole part of spreading awareness.  Letting others know they aren't alone if their child who has a CDKL5 mutation isn't always smiling and happy and reminding me that it's okay to be angry about the fact that this is the life of our two year old.

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New realities

It is a Ben and Jerry's Salted Caramel type of night (mainly because I am out of The Tonight Dough starring Jimmy Fallon).  Really, it is more of an ice cream for all times of day type of week.  There have been way too many firsts in too short of an amount of time for this momma bear to process, and by the time this posts, it will only be Wednesday.  The areas leading me to binge eat frozen yummies both leave me (yes you guessed it) with mixed emotions.

On Monday morning, Sam handed me the mail I missed opening on Friday when Sonzee and I got home from California.  It was an envelope from the DMV addressed to Sonzee herself.  I opened it up and placed between the folded pieces of paper was a blue rear-view mirror hanging handicapped tag.  I ran outside to show Sam before he pulled away, to which he flashed me a quick thumbs-up.  I went back into the house with it and placed it on the counter.  I brought it into the car later on and placed it on the top of the center console.  I did not intend to use it, but it was there for that "just in case" moment.

I am filled with sadness that she qualifies for the placard.  I am filled with relief that on 100+ degree-days she will not have to be subjected to the extreme temperatures by us parking further away from where we need to walk.  I am filled with guilt that she is not in a wheelchair, she is so young, and I have a placard for her.  I know the overall definition of my feelings right now is "denial".  I have been here before.  It is a place where I feel the need to justify all of my feelings and simultaneously talk myself out of every justification.  It will take me some time to come to terms with this new reality.  The reality that Sonzee needs a handicap placard.

On Tuesday afternoon, Sonzee had an appointment with a palliative care doctor.  As I mentioned in a Facebook post, palliative care "is specialized medical care for people with serious illnesses.  It focuses on providing relief from the symptoms and stress of a serious illness.  The goal is to improve quality of life for both the patient and the family."  Dr. Wendy has an amazing reputation and I am so grateful that she has taken Sonzee as a patient.  She will be a liaison between all members of her current team.  She will make our hospitalizations a better experience.  She is developing an ER protocol for us to bring when we go, and I am already at ease thinking about any future visit we will be making to PCH.  She will help us with any life altering decisions that may need to be made.  I am so very excited to have Dr. Wendy on our side and on our team.  Yet again, I am so sad that Sonzee requires the use of a palliative doctor.  The topics discussed during our visit today have never been brought up during well checks with any of my other children.  We did not discuss anything that Sam and I have not talked about on our own, but it was the first time we were asked some of the more not so publicly discussed topics.  It is just another new reality.  The reality that Sonzee, as well as Sam and myself, will benefit from her care.

Overall, I feel my emotions are in balance, in that both the sadness and happiness are being evenly held.  This is just another chapter in Sonya's Story, and we will keep on following where she takes us, I will just make sure there is a fully stocked freezer of Ben and Jerry's.  

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