Monday, December 28, 2015


In my opinion, one of the most challenging parts of being a mom is having the will power to not compare your child to another same aged peer.  It takes great skill to be comfortable with "accepting" your child the way he/she is.  To truly be okay with his/her strengths and weaknesses.  I think it is just one of those traits that is innate.  We want to be the best at everything we do, and so we want the same for our children.  I personally do not think it is wrong to want that, but I can say 100% that it makes things more difficult.

I personally was not the best at every activity I participated in as a child, so maybe that is why I wish my kids were.  For my three typically developing kiddos, whatever activity they are in, I just want them to do their best.  I do not feel like I have to defend their abilities.  In some activities they are better than their peers, but in others, they are not.  As long as they have fun and they try their best (at least when it matters), I am all-good.  I am always proud of them for what efforts they put forth.

Then there is the Sonzee.  There is always a difference in my mind when it comes to the Sonzee.  I know she tries her best, I know she works as hard as her little body can sans a complete (functional) CDKL5 gene; yet I always want more from her.  I can honestly say that I do not look at her same aged peers and feel sad about her development when compared to them.  After all, they have an entire gene that is usable.  That would be equivalent to comparing apples and oranges.  I smile when I see other children her age on my newsfeed who are taking their first steps, I know one day that will be Sonze, just not right now.  What I have the most challenging time doing is reading about what other kiddos her age with CDKL5 mutations are doing.

I know all children are different.  I know even within the disorder comparing two children would be similar to me comparing my other children to each other or their peers.  However, I cannot help but feel saddened and envious when viewing pictures of her CDKL5 sisters sitting, or working on crawling.  There is no solid research regarding mutations themselves and skill-sets children should be able to achieve.  I do know children with seizure control fare better than those who do not.  I know those who have deletions or insertions as their mutations have different outcomes than those with a frameshift like Sonzee.  There is also the whole mystery behind X-Inactivation (whether the healthy CDKL5 gene or mutated gene on either of the X chromosomes is being used in the body for a specific function).  I know children who have their mutation on the tail end of the gene have outcomes that are more “promising” as well.  

Even knowing that she will gain skills at a slower pace still has me saddened to see pictures of children with CDKL5 mutations her age performing skills now.  I wish so much that for her first birthday she will be able to sit alone, by herself, with no support.  I can pray and I can work with her all day long, but the reality is, those things still may not be good enough.  She has limitations, what they are exactly I do not know, but I know they are there.  

Hope and reality are two delicately woven strings intertwined that keep me dreaming yet grounded.  I wish I knew how to channel my vision, to focus, and be able to ignore the background distractions.  I wish I did not feel a tinge of jealousy when I read about the skills fellow CDKL5 siblings have mastered.  I am so elated for their parents, and for them, yet wish I could experience it myself.  I remind myself all the time that there are others who have children who aren't as fortunate as Sonzee, who I am sure feel the same way towards me (I don't judge you, you're allowed). 

It just plain sucks to want your child to be among the best when it is just not the case.      

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