Pause

In approximately 12 days we leave the oven we call Phoenix and head east for the summer.  I am pretty sure the timing couldn't be any better as I am beyond ready for a break.  It is different than needing a Starbucks run or getting a manicure or pedicure.  It isn't the same as wanting to go away from the kids for a night or two.  No matter what we would just be relocating to different scenery, we can't really escape the life we are living, and to be honest I don't want that either.  The way I look at our summer break is that we get to press the pause button.

I am ready to spend two months with limited distractions from the kids.  No (planned) doctors appointments, no therapy appointments, no waiting on hold to nag a distributor because we have been waiting a ridiculous amount of time to receive an item that we were assured we were getting weeks earlier.  I am ready to not have to sync calendars and organize a schedule.  I am ready to not have to wonder what creative rejection Aetna will send us in the mail for an item they have been covering for months on end, but randomly decided they just aren't in the mood to cover it any longer.  I am ready for an actual real life distraction.

I am ready to reconnect with those friends who I follow on facebook and see their adorable family pictures, but whom there wasn't enough time to actually talk to over the past 10ish moths. I am excited to see how our decision (okay, it was really just mine) to drive this year with four children seven and under pans out (this really should be some fantastic fun (sarcasm and honesty included).  I am ready to be surrounded by greenery, mountains, and farms that are tucked away from the hustle and bustle.  I am ready to not have time commitments other than times to drop off and pick the kids up from camp (which Sonzee and I can walk to to achieve and hopefully be on time too).

The last 10 months have been tiring, chaotic, daunting, and waring.  I am ready to get some renewed strength, some umph, and refill my energy tank to full to make it through the 10 months that will follow our homecoming in August.  I am so grateful that we are able to relocate for the summer and get away because I am so beyond ready to hit pause.


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3am

It is 3:00am and little bear and I are awake.  Lately this has become our middle of the night routine, although the time varies.  Tonight it has been since 2:19am that I heard her breathing change and she made a noise, the type that makes me second-guess her seizure freedom so I run to her crib.  False alarm, little bear is only participating in one of the other fun-filled side effects of having a CDKL5 mutation, sleep disturbances/all night parties.

I put on her red ladybug starlight figuring that since she is awake she might as well take full advantage and work on her vision (and hoping) this will keep her from wanting me.  The time passes and her breathing changes, I of course get up every time (reluctantly because I am scared each time will reveal that in fact she is seizing) and each time (thankfully) she is just chewing on her fingers or sucking her thumb.  Regardless of how many times this continues I cannot seem to shake away the worry and feeling from the pit of my stomach.

As usual in our house both of her sisters seem to be woven into her and of course it has turned into a full on party with little girls calling for us or wanting to cuddle.  (Thank g-d little man loves his sleep far too much to join in).  I have gotten all three back into their respective beds, but I know for sure I will not be back asleep anytime soon.  It is 3:11am, little bear has now kicked off her blankets, and she wants me to put them back on.  I tuck her in (again), give her head a rub, and a kiss, and turn off her ladybug light telling her it is sleepy time.  She literally chuckles at me, makes a little protest, but obliges.

Back in my bed I listen to her breathe.  I know no matter how content and quiet she is I honestly will not fall back asleep until she does.  As if sitting here awake will change whether she has a seizure or not.  I have decided that no matter how long this streak continues, the further in we get, the worse the heartache will be when it is over.  I have tried to create ways to protect my heart, but I know there is not anything I can do to cushion the potential blow.  It is 3:17am; she is not showing any signs of wanting to resume her slumber, despite her bodies attempt to let her know by yawning that maybe sleep would be a fantastic idea.

The worst part about her middle of the night shenanigans is my mind has nothing to do but run wild and free, and it is exhausted so you can only imagine the places it goes.  The silence is a conniving place, you would think it would bring about peace and contentment, but after almost an hour, I have still not recovered from the initial panic and fear her wake up brought me.  It is now 3:27am, every so often, she starts to talk or she gets ultra-excited and starts to kick her feet, I would love to know what she is thinking.  One thing is for sure it has nothing to do with going back to sleep.

Every storm...

8:51pm, 7:11am, 8:07pm, 5:44pm, 9:06pm, 11:06am, 1:13pm, 11:10am the times over the past five days that I remembered to use the seizure tracker to keep a record of the seizures little bear has had.  I wish I could say that after watching her seize over the past 16 months that it has somehow gotten easier.  That it doesn't make me want to cry watching during or now, afterwards, while she sleeps because the last one was 5 minutes long causing the app alarm to ring to tell us it was time to administer her rescue medication.  I wish there was actually some meaning behind my words when I say, "they don't even phase me anymore", because honestly they still break and take a piece of my heart every.  Single.  Time.

No remote location, no amount of beautiful scenery, no amount of positivity can take the sting away from watching your baby seize while you watch helplessly.  Random thoughts running through your mind.  When is this going to end?  Should I have ignored Sam and brought her suction machine anyway?  How long until we should give her the rescue medication?  Why is the CBD oil stored in the refrigerator and not next to me?  Is this one causing brain damage?  Why are her hands and feet turning red and clammy?  Why is it still happening?  Is she breathing...is she going to stop?  

The fear, the anxiety, the extreme panic that occurs each and every time is probably enough to qualify me for a prescription of diastat (rescue drug) myself.  It takes me much longer than little bear to recover, to that I say Thank you G-d.  It has been over three hours and she is most likely out for the night; thankfully not awake reliving the experience, or in any more pain, (we gave her Motrin when she was whimpering and restless afterwards).  Me, well I sit here switching between Taylor Swift and Gary Allan, again exhausted beyond belief and blurred vision, sipping a glass of wine and holding back the tears that will eventually find their way onto my pillow.

It is the nights like tonight that I HATE the strength that I supposedly have.  The strength that leaves me feeling angry and sends me straight into the land of Why?  (For the record, I hate entering this land)  "Why Sonze?", "Why our family?", and the one I feel most guilty of, "Why me?"  Aren't other families that can handle this better, more gracefully, with more faith, who are actually strong and don't ask why?  Aren't there others who are better equipped to deal with this?  Oh, how I wish there was a way to take a little bit of the pain and all of these feelings and bottle them up into a glass bottle to be corked, buried, and NEVER opened.

My ability to keep on pushing through right now is in part to the lyrics in Gary Allan's "Every Storm"...

 Just put your feet up to the edge, put your face in the wind And when you fall back down, keep on rememberin' 

Every storm runs, runs out of rain Just like every dark night turns into day Every heartache will fade away Just like every storm runs, runs out of rain 

It's gonna run out of pain It's gonna run out of sting It's gonna leave you alone It's gonna set you free

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Change

It is close to midnight and my eyes are so tired that it is a constant battle to keep them open.  It is getting to the point that the blurry vision is getting more challenging to blink away.  Each blink clears them up a bit, but then within a millisecond, they are fighting the weight again and I have to blink multiple times and rub them to be able to focus.  Now comes the million dollar question, Why am I still awake?

Since adulthood, I have never been the best sleeper.  Scratch that, since I became a mom I have honestly lost all capabilities of going to sleep, and forget staying asleep.  We can casually blame it on nerves, worrying, the fact that nighttime is the only time I can get things done, and the fun fact that 50% of my children prefer to sneak into my bed multiple times throughout the night, steal the blankets, take over my space, and hope I do not notice their presence.  If I am honest, those are all fancy excuses for the fact that nighttime is the time I get most of my inspiration in terms of my blog posts.  It is the time I am most in touch with my emotions, the time I allow myself to reflect on the day, and the time I am able to decompress and process everything that is going on within my life and around me.

Tonight as I sat in front of the computer screen trying to figure out what I wanted to share, I started to think about the events of this past week.  In a short summary our house air conditioner broke on Sunday, our cars compressor melted (YES IT MELTED) on Monday, and our brand new car's (that we purchased Tuesday) air conditioner fizzled out on Wednesday.  Looking back at the past 4 days, I am left with my usual mixture of emotions.  

• Thankful that if something had to happen it was to inanimate objects and not Sonzee or one of our other children.  
• Amazed that if we did not have questionable luck we really would not have any luck.  (<-which reminds me, we REALLY need to start playing the lottery, because our chances of winning are surely MORE than the amount of rare things that can occur to one family).  
• Numb.
• Confused by how I feel about it all.

When I think about me prior to Sonzee, I think of how my reaction to this past week of events would have been very different.  Maybe better in some ways, but not in others.  I think how I probably would have been so excited that Sam actually went out and bought me a NEW 2016 vehicle, not a used one.  If you knew Sam, this is HUGE.  Yet, I am not excited I am honestly indifferent.  I am angry with myself for not doing a happy dance down the street, but the truth is, I am incapable of getting excited about such an "insignificant" thing.  It is a car.  I think how "not normal" it is that when replaying the events aloud I actually said, "Well, if bad things had to happen at least it wasn't Sonzee dying".  (<-because that is a normal parent thought)  I think how I might have gotten more mad prior to Sonze, but overall, I just do not care.  

To be honest, what bothers me more than anything else is that I am numb.  I miss feeling more normal.  I think how I am just a shell of the person I once was.  I have some parts of me that are the same, but a huge part of me is no longer here.  I wonder if it will ever return.  I keep wondering if I am supposed to go back to the old me, or was the old me not who am I supposed to be?  Is one of my tasks simply to be able to overcome all these obstacles AND find my way back to myself, or am I supposed to become something better?  Just to give you a sneak peek into the workings of my tired brain, I will leave you with three quotes that represent my current thoughts...

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