Wednesday, January 25, 2017


I have struggled with the term "acceptance" since we were in the position of learning Sonzee had epilepsy and that it was the result of a CDKL5 mutation.  When you find yourself in this type of situation, your brain and your heart do not always align with one another.  You know deep down what the reality of the situation is, but you think that love or some special power will bring a miracle and the situation will go against all the negative odds.  As you make your way through the journey certain realizations occur that put a halt or just downright stop certain fantasy dreams you might have conjured up, and you start to "accept" that what the situation now is, is in fact, what it is.  A huge problem I have with acceptance is that my brain says, "if you accept this fate, then you have given up", so I find myself constantly torn.

As I have shared, Sonzee will be turning two in a matter of weeks (2.5 to be more exact) and she is unable to sit on her own, she is unable to walk, she is unable to talk, and she is pretty much unable to do most typical things a child turning two should be able to do.  I have put off the purchase of two "big ticket" items for two reasons, 1. they cost a ridiculous amount of money and 2. buying the item makes me feel like I am giving up on her ever gaining the skill(s) on her own.  For two years my brain has told myself that Sonzee would probably sit unsupported between 3-5 years old and walk after age 7 (if she was able to gain these skills at all).  For those of you who might not be familiar with the deficits of CDKL5, those are the average ages that these skills are mastered within the CDKL5 population, if they are mastered.  While I did not expect Sonzee to gain the skill earlier, I dreamed it would happen.  There are plenty of girls around her age with a CDKL5 mutation who are capable of worlds more than she is, so I grasped at the fantasy it might be in her favor as well.  That has not been our case.

Last night I stared at the computer and decided with her birthday money she was given by both of her grandparents it was time to by the FireFly GoTo Seat.  I bought it in purple, and that is important to note because color choices become significant in these situations as they are what make buying special needs equipment tolerable for me.  This is one of those emotional days on this journey as it breaks my heart that she will be two and is not able to sit on her on.  It is one of those days where I "accept" where she is at and I "accept" that this tool will make her quality of life so much better.  She will now be able to sit in a grocery cart, at the table at a restaurant, and in her siblings’ power wheels cars.  Simultaneously, it is also one of those days where I mourn, yet again, where this mutation has led her life.

In addition to the GoTo Seat, I decided to get the FireFly Upsee so that she can feel what it is like to walk.  This is a device worn by an adult and we strap Sonzee in with a harness and she shares the footpads with the adult walking so her body gets the ability to feel what walking is like.  I felt this was the perfect time because she has good head control and she does not weigh that much.  This of course was bought in pink and I am extremely excited to give her this new experience and a different view of her surroundings.  

Two years ago I did not know that the FireFly website existed.  I was blissfully unaware to what laid ahead on our journey of becoming parents of four kids 5 and under.  Two years ago I never thought about seizures, stomach motility issues or small bowel bacterial overgrowth.  I never knew the names and spellings of the most commonly used seizure medications or thought that I would know more about a medical condition than some in the medical field.  Two years ago the life I dreamed of having had different plans for me and so now I will continue to spend the rest of my years working on "accepting" all of the changes.

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