Puzzle pieces

A few weeks ago, my middle daughter brought me a 500-piece puzzle and emptied it on the floor.  She asked me to help her put it together and I got excited.  After separating the corners from the insides, I realized that when her baby brother woke up, the floor was a bad location, so we moved it to the counter.  It started with her helping and then eventually she just wanted me to finish it.  Honestly, it was really relaxing, and it was something I looked forward to completing.  It sat unfinished but being worked on for about 2.5 weeks, but really it was only 4 days I actually spent on it before it was done.  Sam thought it would be a great idea to glue it, frame it, and give it to the girls, so the plan was for it to sit on the counter until I got all the supplies.  Before that could happen, my middle daughter was looking at the completed image while eating breakfast and loudly proclaimed, "I am going to take this apart and do the puzzle again", and before I could speak the puzzle was back into pieces.

Staring at the location of where the puzzle was placed on the counter I could still see it sitting there, complete, and ready to frame.  But then I blinked and remembered that I would have to start all over again if I wanted to see it completed.  I left the puzzle on the counter in pieces for a few days, but ultimately decided I needed to take a break, and a deep breath.  I put it back into a bag and decided I would take it out another day when I was ready to tackle the job again.  So much of our situation with Sonzee is just like a puzzle.  We spend so much time sorting out the best way to bring out her best; we,  including her entire medical team do our absolute best to get her "back together" every time that something within in her falters, yet we always end up back at square one with a bunch of pieces in a pile.  

Yesterday Sonzee had one of her follow up appointments that was scheduled following her last inpatient stay.  It was an appointment I was eager for her to go to because its purpose was to give us the clearance to move on with original plan that was created while she was inpatient.  Over the next week and a half all the puzzle pieces that have theoretically been laying on the counter will be placed into their proper piles.  I am a little apprehensive over what is to come, mainly because I do not know what the final puzzle is going to look like, but it has been enough time that I am just eager, excited, and ready to put this puzzle back together.  

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Leap of faith

There are so many challenging parts of having a child with CDKL5 that I find myself starting a post with "one of the most challenging parts of being a parent to a child with CDKL5" more often than not.  Yet again here I am finding no other way to start today's post...other than...one of the most challenging parts of being a parent to a child who has a CDKL5 mutation is constantly having to take leaps of faith.

There is really no other way to live this life without constantly having to throw your hands up in the air saying "I quit" and just giving in to whatever is instore.  Sometimes you get lucky and the outcome "works in your child's favor", more often than not, you are left angry that you, your family, and especially your child are in this predicament, and that you actually felt the slightest tinge of hope that things would "work out".

It is usually after you have exhausted the 10 most common of solutions that you allow yourself to go to the next level of solutions that you normally wouldn't ever consider, but now you really have nothing to lose.  The sad part is, at this level of options there is always something that is being sacrificed, but it is the lesser of all the evils your child is facing.  It is so infuriating to be placed in this position, but then again nothing is inviting about holding a CDKL5 parenting position.

So here we are...again...being faced with making a decision that doesn't come without a consequence but if it is successful could prove to be one of the MOST beneficial outcomes for our little bear.  The balance of the side effects of her new medication weighed against the possibility that her pain could become obsolete makes it a "no brainer" at this time.  So with the notion that this could be Sonzee's saving grace, we again hold our breath and take another leap of faith.

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