Wednesday, June 29, 2016

If I knew...

I try to shy away from controversial topics when writing my posts on Sonya's Story.  My intentions are to never insult a reader, fellow parent, friend, etc.  In doing so I tend to veer away from topics that might elicit some undesired negativity or hurt the feelings of one of our readers.  There is a part of me that feels as though there are times when ignoring thoughts due to their controversial nature is not only a disservice to myself, but to others who could potentially be feeling the same exact way but be too afraid to admit it aloud.  I feel as though Sonya's Story has morphed itself into a place that lends itself to openness and honesty, and is a place everyone appreciates the transparency.

As I have mentioned numerous times within my posts, being a parent of a child with CDKL5 is challenging on so many levels.  The thoughts and emotions that accompany this life are unfortunate, and honestly there are times where I cannot even imagine that something so horrific has even crossed my mind.  I try to convey to those of you who are not in a similar position the inner workings of my mind so you can possibly transport yourself into a different world, maybe get a better picture of the circumstances, and therefor appreciate the situations I find myself.  

I would like to emphasize that I love Sonzee with all of my heart.  I hope that message has been expressed enough for no reader to ever doubt that.  I love her the same way I love all of my children.  Her personality has won me over ten fold, and I could not imagine my life without her.  I could not imagine our family without her.  She has made such a lasting positive impact on so many and she is truly amazing.

This past week the following question has been fluttering through my mind...and if I am honest, it is not the first time.

If I knew my child in utero had a CDKL5 mutation, what would I have done? 

I have always considered myself a pro-choice type of a gal.  When Sam and I were dating of course the topic came up.  When he asked, "would you have an abortion?"  My reply to him was, "Me, myself?  Well, no.  But who am I to tell another woman she can't?"  I have no ill judgement towards those who might have to choose differently than myself.  Never in my mind could I entertain a situation that might cause me to need to choose differently.  Getting pregnant for me was always something that actually needed trying.  I have never been one of those "Sam looks at me and bam it happens", so each time the two lines popped up on those Early Pregnancy Tests, having sheer disbelief mixed with utter excitement is an understatement of the celebration that occurred.  We always did the basic testing while pregnant, but it was more so I could please the Type A in me and "prepare and plan".  The tests are for syndromes that are more common, like Spina Bifida, Down syndrome, and a list of Trisomy’s.  The tests have always come back negative, and so I never had to do any "preparations".  

When I think about what would have happened if we learned about Sonzee's diagnosis prior to her birth it goes a little something like this.  We would have sat in a small office with a doctor who would have delivered the news that our unborn child has a mutation on his/her CDKL5 gene.  They would have said they did not know much about it, but that it occurs more often in girls than boys, but if the baby was a boy, "odds" are the baby would not survive or would have less of a quality of life than a girl would.  (They would base this strictly on the fact that there are more girls than boys with mutations on CDKL5 genes, because it is an X-linked dominant gene and boys only have one of those).  After learning this I would need to forgo not knowing the gender and find out if we were having a boy or girl.  We would have learned that our fourth baby was a girl, not the boy that we had thought, because we already had 2 girls and 1 boy, so of course "our 4th was going to be a boy".  We would have left the doctor's office dumbfounded, numb, in shock, but still with a glimpse of hope.  Then I would have googled CDKL5 and would have broken down after reading the words "uncontrollable seizures", "severe to profound learning disabilities", "most cannot walk, talk, or eat by themselves".  We would have turned to Facebook, looked up other children’s pages, and watched YouTube videos of other children.  We would have reached out to the parents of children who appeared to be "more advanced" to play devil’s advocate, to give ourselves some hope, to help us make the "best decision".  We would have spent hours wondering "what if" in every capacity of the term.  "What if the doctors are wrong?", "What if our child will be different", "and What if it isn't so bad?”

Then what would we have done?

Sonzee has been a part of our lives for 16 months.  These past 16 months have been nothing short of an adventure, to say the least.  I have experienced emotions I never knew existed, and I am sure I will experience ones in the future that I am unaware of.  There have been some amazing moments, happy moments, and even beautiful moments.  Some of those moments are forced into my mind to cushion the blow of this horrible mutation.  To "look at the bright side" if you will.  However, there is so much pain and heartache.  I often find myself wondering what I would tell a pregnant woman who found out her unborn child had a CDKL5 mutation and asked me my opinion on what to do.

I cannot, in good conscious, tell another mother that watching her child suffer daily is a recommendation.  I cannot even say the good days will outweigh the bad, because those are sometimes numbered and far and few between.  I cannot tell a mother they will enjoy the heartache, the pain, the fear, the endless amount of "I can't even put the thoughts into words" that will accompany this child into the world.  There is absolutely NOTHING I could tell a mother that could soften the blow of what life will be like with a child who has a CDKL5 mutation.

If I put the selfish reasons aside, and I think about the unborn child in question does my answer change?  If I knew in advance of all of the complications that Sonzee would face, would I want her to endure them?  Would it be selfish of me to allow my child to suffer?  Would I want this for myself, for my life?  Would that even be motherly?  

BUT how can I possibly tell another woman to not take the risk?  How could I explain that the milestones her child will achieve will bring such an indescribable amount of joy, a type of joy that others who do not have a child with special needs would be jealous of because they just simply cannot understand.  The highs will be higher than anything she will ever experience.  The amount of time she will have to dedicate to help those little milestones become mastered will be worth it, and so will the wait for them to occur.  How can I tell her how much fun it is to celebrate literally EVERYTHING?  (Etsy makes a celebratory gadget for every. single. thing.)  How do I explain all the positives that are easily overshadowed by the obvious negatives?  How do I explain that Sonze has touched so many lives and that the majority of people do not even realize there is something different about her, but just that she is a beautiful little girl.

A life with CDKL5 is hard.  Parenting a child with CDKL5 is not something I would have asked for.  Thankfully, for me, I will not ever have to know what I would have done, because I could not imagine our world without the Sonzee Bear.


***The dialogue you have just read is representative of my experience in raising Sonzee who has a CDKL5 mutation.  These thoughts are based purely on my experience as her mother.  Every parent of a child who has a CDKL5 mutation has a different experience and therefore this post cannot be used to represent the entire CDKL5 parent population***