Still trying to accept...

I know one of the harder parts of this journey is acceptance.  While I have experienced brief moments where I am content with how things are, I can admit that I have not truly accepted everything CDKL5 has thrown Sonzee's way, but I don't think I ever will.  Usually after watching one of Sonzee's CDKL5 siblings who is around her age celebrate the mastery of a skill that Sonzee still cannot do I tend to feel the saddest.  While I am genuinely happy and excited for each of them as they meet their own inch stones, it makes a small dent in my heart and the doubts of what we are doing for her creeps in.  What are we doing wrong? Are we not giving her enough therapy?  Is it our fault?  Could we be doing more?  Should we be doing more?  Will more make a difference?  

This train of thought begins to wreak havoc in my mind and an internal game of devil’s advocate ensues.  Even if we give her intensive therapy it won't make a miracle happen (we have tried that).  If we do more therapies, she will surely excel (she seizes and then sleeps through the ones she currently has).  If we pushed her she would meet her milestones (she is doing her best, she cannot beat genetics and her mutation is not a "lucky" one).  She is happy and content (Is she really?)  If we finally got control of her seizures that would surely help (No. It won't because even during her 5 weeks of seizure freedom that she has experienced twice in her life, she made zero gains developmentally).  You are doing your best for her (No I am not because she should be able to hold a toy or sit).

Lately it feels like every CDKL5 sibling around Sonzee's age has blown past her.  They are sitting, pushing to sit, rocking on all fours, crawling, bearing weight, walking with toy walkers, walking holding hands, and/or walking on their own.  Maybe it just feels that way because I am feeling like it is my fault she has not moved beyond a 3-4 month developmentally.  I remember when she was 4 months old and Sam and I had dreams she would be the one who would defy the CDKL5 stereotypes.  She was taking part in every therapy under the sun, it didn't matter the cost, she would have it all.  We bought or asked for every possible piece of equipment that might make a difference that was age appropriate.  Here we are, her about to be three and I don't want to give up on her being able to sit...but even that has not happened.

I know mastered milestones do not correlate to the level of success a person has achieved in his or her life, but as a parent of a child who has hardly completed any I just feel like a huge and complete failure.  I know we have tried everything we possible could to help her and I do not know how to accept that maybe she really will not ever meet any of these "basic" life skills or that there is nothing more we can do to help her complete them.

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Disappointment...again

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell myself to be realistic, but to be honest, this is the one time of the year I actually feel extremely optimistic that during these four weeks there is no reason why she cannot progress leaps and bounds when there is nothing else to do but work with her.  Then the summer begins and the hours of each day pass by, the days turn into weeks, and I am left realizing that my fantasy of Sonzee gaining substantial ground is just that, a fantasy.

The scenery has changed, the environment is different, but the effect of CDKL5 is and always will be the same.  The seizures perform their daily havoc, actually, they are pretty much the only skill that she seems to make advances with.  Just 5 weeks ago she was having small little questionable moments, and now twice a day on average she has undeniable episodes.  I do not know when I will truly realize that we are not ever going to beat the seizures.  There is no magic potion to wave them away, and deep down I really do know this.

Her jumper is hanging in the doorway here in our townhouse and her stander sits by the wall.  Both have been used twice.  The Upsee has spent the entire time hanging in a bag on the laundry room door, my desire for us to walk together for 5 minutes a day has yet to be met.  Her bike sits by the fireplace next to a basket of toys she has zero desire to play with despite the various attempts her siblings and I make to get her interested.  Essentially, nothing has changed except my feelings of defeat are far more pronounced. 

It is the moments like these that I realize that even though I thought I had lost my hope with her, it was there, hidden away in a small space in my heart and mind, hoping to prove the majority of my heart and mind wrong.  In the end, all it does is leave a pain in my heart, a fog in my mind and it solidifies why it is I really dislike everything that surrounds the word "hope". 

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Closer than yesterday

I have always been my own worst enemy when it comes to expectations I have set for myself.  I can be hard on myself for getting easily frustrated with the kids, not being as well put together as other mother's, not being able to do everything that I have set forth on my agenda for the day.  There are plenty of days that I stare into space for a good majority and then find myself upset that I did not take advantage of the time I could have spent doing other things, maybe "more" necessary things.  I am sure there are people who tell me that I did the best I could for the day in question.

If you are a part of our Facebook family then you probably have seen the pictures of Sonzee bear working hard on her physical skills.  I cannot speak for her, but I can guess that if she could use her words, she would tell me how frustrated she is with herself for not being able to bear weight on her arms and knees.  I think she might express disappointment within herself for not having met the age appropriate milestones that have passed by.  If she could talk and she did tell me that, it would be beyond heartbreaking.  I know how hard she is working, I know that even though it may not appear obvious to the casual onlooker, each day she is achieving little Sonzee-Stones.  

I have been speaking with others who are feeling as if their life is not all wrapped up neatly in the perfect box with the perfect bow.  Things in their life are a little off kilter and they are not sure how to regain their focus.  They have conveyed their fears and their anxiety, and admitted they are just so unsure about the direction their life is going.  They have doubts about employment, mothering, and their day to day actions. 

It can be so easy to be bogged down by the hustle and bustle of everyday life that we do not really see the bigger picture.  It is not every day that we typically sit in a moment of reflection and really realize all each of us has endured over the years causing us to make certain decisions.  We all have personal challenges and difficulties we must overcome and little by little every day we all do just that.  Every day is a new day and a chance for us to start fresh but not to forget how hard we have worked to be where we are at this exact moment.  I think this is one of those quotes that need to be turned into a magnet and placed in the kitchen, because...

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Waterfalls

I can remember back to the 90's when TLC's song "Waterfalls" came out.  I am pretty sure I had a cassette version of their album and had all night slumber parties singing and dancing along to that song as well as their many others.  I have been sitting here this morning thinking towards the future with Sonzee; her constantly changing medication schedule, overall health, and potential seizure control.  The lyrics of the song managed to find their way out of my mental storage.  It always amazes me how much randomness is stored in the recesses of my brain.  Even though this song was not written with Sonzee bear in mind, the lyrics ring so true to me.

Don't go chasing waterfalls

Please stick to the rivers and the lakes that you're used to

I know that you're gonna have it your way or nothing at all

But I think you're moving too fast

It continues to be extremely easy to get carried away in the extreme tidal wave that is CDKL5.  If my worry isn't directly related to seizure control then it is her overall development or health in general that leaves me with questions.  I am always trying to be one step ahead of the potential madness, always thinking in some way I will be able to outsmart it.  I don't know why I feel I am a match for a genetic anomaly.  Biology and science in general has NEVER been a strong suit of mine.  What I know about genetics has only been brought to my attention in the last year.  There is absolutely NOTHING I can do about her condition.  As a parent this has got to be one of the WORST things.  Knowing that no matter what you do, in this case, it won't ever be good enough.  It can leave you in a constant state of panic, a constant state of worry, and a continuous state of feeling out of control.

We are always trying to figure out what the best medical cocktail would be for Sonze.  It is a fine line to balance seizure control with quality of life.  We want to be aggressive to give her the best chance to be happy and develop as well as she can, but at the same time not put her into a medical coma or expose her to too many harsh side effects.  It is a constant state of weighing pros and cons.  It is a constant back and forth of wondering if what Sonzee's current state is, could actually be made better by a "simple tweak" or if we are only going to make things worse.

It can be rationalized that whatever change that is being fabricated in your head is the better one.  It is so easy to do the "if we do this, this will definitely make a difference in a positive manner because what we are currently doing isn't working".  Sometimes you can find yourself so caught up in "Fix it mode" that you can't see that what you have is actually really great. Only after you implement the change do you realize that not all changes are for the best.  Changes can lead to an unexpected and unwanted negative cascade of events that leaves you thinking, "what did we just do?"  I am not one to regret a decision, but regardless of regret, it is still an awful feeling when you think "maybe it wasn't really broken...maybe we shouldn't have attempted to fix it".  I know that in our situation we will always find ourselves faced with these types of situations.  It will be a constant battle within ourselves to figure out the appropriate time to "jump ship" on whatever course of action we are dealing with.  But, it is always good to have a gentle reminder to "not go chasing waterfalls."

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It's a marathon...not a sprint

I am not a runner by any stretch of the imagination.  The only relationship I even have to the sport is through an old pair of Nike sneakers from high school and the Bumbleride twin-jogging stroller I purchased when we had our first two children.  It was on eBay and I just wanted a discounted stroller.  Running really is not my thing, but if I ever decide to participate in the sport, I am fairly certain I would prefer being a sprinter.  My personality is much more suited for being a sprinter opposed to being a marathon runner.  The finish line is closer, the goal seems more attainable, and the race itself is quick giving you immediate satisfaction and validation for your efforts.  Yes, I would much prefer to participate in sprints.

Sam has said from the beginning that dealing with CDKL5 and Sonzee is a marathon not a sprint.  He reminds me all the time of this statement.  I say the words aloud multiple times a week in hopes of them penetrating deep enough into my brain that I can change all my ways of thinking.  Yet, here I am trying to sprint my way through a marathon.  As I said previously, I am not a runner.  I do not know the first thing about marathon training.  I do know it requires a lot of preparation.  You cannot wake up the morning of the Boston Marathon and just decide to participate, I mean I suppose you could, but I can probably guarantee the outcome will not be desirable.  To run a marathon you need to have a lot of dedication, you need to have patience, strength, and endurance.  You have to be willing to spend months and years adding distance to your daily runs and putting up with all types of weather.  You cannot just become a marathon runner.

I have found that no matter how many times I remind myself that this is going to be a long haul type of event, I am still stuck in my “immediate fix it” type of ways.  This experience has been a HUGE test of my patience.  I have definitely made improvements in that department but wow do I have a long way to go.  I constantly want to do quick fixes for whatever discomfort Sonzee might be facing; unfortunately, there are no quick fixes.  There really are not even fixes.  Her seizures will come when they want, how they want, and in any form that they want.  Her body will get sick when it wants, how often it wants, and in whatever fashion it wants.  There are things I can do for her to provide comfort, but they seem to fall short in being permanent remedies. 

It has been exactly a year since I first stepped foot in the ER and said the words, “I am pretty sure my daughter is having seizures”.  I have now been in my training for 365 days.  I am definitely more knowledgeable than I was a year ago, but I do not have many more answers now to the same questions I have asked or wondered throughout the months.  These next couple of years are going to be difficult, I know this.  I am attempting to prepare myself, but I would much rather fast forward.  I keep saying, “Keep your eyes on the prize”, I do not even really know what that looks like.  I know it involves some semblance of seizure control, but really, I just want the bear to be happy.  I want her smile back and I want her cute little personality to shine through again.  I am having a tough time right now in this part of my training.  It feels like this is an insurmountable task, similar to if you ever asked me if I intended to climb Mt. Everest, Umm…No.

So, here I am in the midst of a marathon I was not prepared for and I am definitely more of a sprinter.

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Never judge a book

If you look at the Sonze what you will see is a baby.  If you look at her while she is in the newborn to 6 month music class, you would have no idea that she does not technically belong.  She is at least 6 months older than most of the kiddos yet she looks smaller than the majority of them.  She does not have a mouth filled with teeth; she is just now finally getting her first tooth.  She does not sit on her own or hold onto toys, and she hardly raises her head while on tummy time for more than 5 seconds.  When people look at Sonzee and then ask me how old my baby is, there is definitely a moment of silence and shock after my reply.  Based purely off looks and outward presentation, the bear can easily be misjudged.

I am guilty of falling for the misrepresentation myself.  I purposefully changed out all of her clothing to only have 12 month or 12-18 months so I would not keep "forgetting" she is not 6 months old.  I honestly do not care if the pants have to be rolled or if the shirt is falling off her shoulders...it is just easier for me mentally to see her in age appropriate clothing.  I can be thrown off when I lay her down and she just rolls over and immediately sucks her thumb.  We all know a typical one-year-old does so much more physically and expressively, that combined with her small stature it can make us all think there is nothing more than just a young baby in our presence.

However, we would be wrong.

Sonzee is unable to coordinate her muscle movements the way they need to be in order for her to achieve physical achievements.  She is also unable to coordinate her oral structures so they can produce sounds and words appropriately.  Her eyes have a similar deficit in the fact that they are unable to communicate appropriately with her brain in order for her to see objects appropriately.  To sound technical, Sonzee suffers from global apraxia.  This is not the only deficit she is dealing with, but it is one that negatively affects her significantly.  What can be confusing when children present with a form (or all forms) of apraxia, is that it can be assumed they do not understand.    

However, that would be wrong. 

Sonzee understands.  If I give her ample time, she responds to me in different ways.  She lets me know her likes and dislikes.  She lets me know when she is happy and sad.  She lets me know when she wants to do more of an activity or she wants to do less.  Trapped inside her little adorable body is a Sonzee Bear communicating with me and letting me know she understands.  I get so excited when she shows me that she is present, that she is awake inside.  When she closes her eyes before she is put underwater at swim.  When we tell her "clap, clap" and we see her try to move her hands together, even if there is no coordination and to a bystander it looks like she is not doing anything remotely looking like a clap.  When I say, "here is miss Holly", and we both do a double take because we could swear she tried to reach out for her.  When someone she loves enters a room and she hears his/her voice and she makes a sound or moves her body excitedly.  When she is lying down and we say "kick, aba", and she kicks Sam in the face multiple times.  Her little personality is adorable, it is shining, and it is there!    

It can be easy to be caught up in the moment and forget that my "baby" is capable than so much more than how she physically presents.  It is much easier to simply judge a book by its cover.  Although I am getting to the point where I really have to watch what I say around her; it would be really uncomfortable for us all if her first and only word ends up being a profanity.  However, that would be a really awesome conversational piece.   

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