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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Reminders

When you find yourself living a life with a special needs child, things that were once "unimaginable" become part of your daily routine, so much so, that your typical does not seem so atypical...to you.  Then almost randomly you have these "aha moments" where you realize just how not normal your life, your family's life and your child's life has become.  For me one of those series of "aha moments" came while preparing for and during our in-home district nursing evaluation to see if Sonzee qualified for nursing respite vs standard respite.  

It is not that I am at all shocked or surprised she qualified for the nursing part of respite.  I am more slapped into reality over the fact that her seizure log from January 25 includes 124 seizures and those are not counting the ones that happened while she was in the PEMU or in the last 16 hours.  It also does not include an exact count of spasms/multiple seizures that can happen during a 5-7-minute event, it is simply representing the number of episodes she has had in the past 3 months.  The fact that this is our normal, our "no big deal" does not faze me daily.  We do not bother with rescue medications because they will not do anything positive for her long term, they will only make her dependent, so our "comfort" is 15-21 minutes a day of her seizing.  I honestly do not even process that the seizures themselves could render lifeless, it is as if the entire concept of what a seizure actually is has fallen on deaf ears.  I am pretty sure this would be a proper time to insert the confused emoji face.

I think about the children and families of CDKL5 children who have lost their lives often, but I do not let it consume me or I would be unable to function.  Then suddenly, the news spreads that another child's body just could not compete with the challenges of a CDKL5 mutation and it becomes all too close to home.  The distance of that reality is no longer so far away and the weight of what Sonzee is dealing with on a daily basis is thrust into the spotlight.  Living with a CDKL5 mutation is not just dealing with developmental delays and seizures, these children are literally fighting just to survive daily.  I guess I forgot that?

I do not know what is the "safer" way of living this sort of life.  For me it has always been best to keep the fear and reality in the distance but aware that we are not immune, however, on the days these reminders float in it takes a lot of strength to remember to breathe.   

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Grounded.

I have to remind myself to keep my feet on the ground, to only have tunnel vision.  19 months in and I know these feelings all too well.  It starts subtly and with some doubt, then the casual question between Sam and myself of "did you see that?", " what do you think?", "did you get it on video?".  We ignored the first questionable movements, but slowly the doubt becomes less and the panic starts to over take my mind.  What do we do? What's our next line of defense?  Do I email her epileptologist?

Ever since the varicella (chicken pox) vaccine her 39 day streak of seizure freedom was derailed.  I anticipated this would be the case, but as usual, I had some hope.  (I find the fact that I continue to use that word almost comical).  It started with some quick shakes (myoclonic seizures?) we originally wrote them off, and then a flashback of her first PEMU stay haunted my mind.  We have been doing the most slow wean of Keppra known to man kind (8 weeks), so after multiple shakes, I convinced Sam to go back to her previously weaned dose.  It worked, the shakes stopped.  I guess that solved that mystery.

But having CDKL5 isn't that easy.  Things can't be fixed so simply...at least not in our experience and certainly not for the bear.  So we plugged up one hole in the hose and then another leak sprung.   Now we are seeing the quick eye roll, the questionable head drop...the panic sets in, it's honestly suffocating.  It makes me want to get any drug to make them go away.  Then I take a step back, I go back into the tunnel...I remind myself she has a neurological disorder and she will always have odd movements, and her seizures are "refractory", after awhile they don't respond to medications...there really is nothing we can do.  Why am I panicking? The panic does nothing and there isn't any miracle at this moment either. 

So I need to find the floor and ground myself. I need to take a deep breath and let this unfold the way it's meant to.  I have to remind myself that there is no quick fix (or fix in general for that matter) and there (may) never will be.  It will always be trial and error and the sand will always fill the other side of the hour glass, but after it gets turned back over, we never know how long it will take for it to run out again and who knows, maybe one day a grain of rice will clog the path.

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