Monday, February 8, 2016


The worst part of having feelings that are not always happy or positive, is people telling you to "look at the positive", or "you shouldn't focus on that".  I have come to expect and I do accept that type of response from Sam because he is a guy and guys in general are always in "fix it" mode.  However, it leaves me a bit frustrated when it comes from other sources because A. unless your child has CDKL5 you honestly have NO idea what we are really dealing with and B.  I actually want to FEEL all of my feelings.  I want to HONOR all of my feelings.  I want to EXPERIENCE all of my feelings, because it is the only way for me to truly be in balance.

When I have a day that is a bit off, I know there will be a day in the near future that will be a bit on.  Wrongs are always righted.  Downs are brought back up.  An empty glass will become full.  Trust me; I spend the majority of my time looking at the positives.  Besides the recent deaths, there are so many children with CDKL5 who continue to make progress, achieve accomplishments, and check items off their individual "To Do" lists.  This blog was created to share Sonzee's journey, but an important part is for me to get my thoughts out of my head so I do not suffocate.  Please do realize even in my "Debbie Downer" postings that I too am hanging onto HOPE.  Hope in Sonzee achieving milestones.  Hope in a long life for Sonzee and her CDKL5 siblings.  Hope in a cure for CDKL5.  

Today Sam talked me into going to a super bowl party with the kids.  Sonzee has not been in the mood for making public appearances lately, and truthfully they have not been my thing lately either (shocking I know).  I was dreading going because the bear has been, well just that, a bear, and I would much rather stay in the confines of our home and let her be a bear here.  On top of her grouchiness, there is the mental preparation that comes with leaving my home because whenever I go out the conversation typically involves a reference to Sonzee's size, the fact that she'll soon be 1, and discussions regarding her seizures, all of which honestly, I don't always want to talk about.  Add to that my lack of desire to be social, and well, this just sounded like it was going to be a grand ole time.  So, the last thing I did before walking out the door was go grab a bottle of wine.  I was not quite sure if this was super bowl appropriate, but figured in the worst case, I would sit and drink the bottle myself. 

I will be the first one to admit that I am glad Sam made me go.  The food was amazing and it paired well with the bottle of wine that I actually did share.  My favorite part of the night turned out to be the company.  Women who gladly snuggled with a grumpy bear, making sure she was loved on and as comfortable as possible.  Women who took out wine glasses and drank in honor of whatever is imperfect in their lives.  Women who allowed me to feel whatever it was I was feeling in the moment without making me feel like I have to defend my feelings and/or thoughts,  Not everyone can understand what it is like to have a child with CDKL5 or a child with special needs in general.  But thank you to those who stand by me, who support me, who don't question me, and who know when not to tell me to focus on the positives as I continue to try to understand what life is like with a child with CDKL5. 

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