Processing

It feels like it has been forever since I last sat down and allowed myself to take a deep breath.  I decided even though I am exhausted from our final drive home, the beginning of unpacking, and the fact that it is 1:44am, I wouldn't let myself go to sleep without writing a blog post.  So many thoughts popped in and out of my mind over the last couple of weeks, yet time didn't allow for me to devote more than the second to them, and I know I need to make them coherent and sort them out in and outside of my mind.

This summer has officially come to a close in terms of travel and play, albeit not so much in terms of Phoenix's 112-degree forecast.  I am not fully ready to reflect on the events of summer as a whole because for the first time in Sonzee's life I feel like this summer was not actually a summer.  I honestly feel in a way we were robbed of my expectations, and maybe that was my fault for even setting any.  That is what I hate about CDKL5, so many plans that don't come to fruition, in their place is the life that I have minimal say and control over, and for some reason, I am still unable to relinquish the reality of that concept.  Deep down I know that there is a reason for everything, that there is a purpose for everything that occurs to Sonzee and for all the experiences we have because of her, but closer to the surface it remains a constant struggle.

4.5 years in and I still cannot grasp why she needs to struggle for any potential "better good".  While I am so fortunate to those who have literally become like family to us, I wish it was not at our daughters' expenses.  There is no amount of life learning lessons or inspirational gain that should come at the hands of pain and suffering of Sonzee or any other child.  I still have moments, like right now where I wonder why her?  I still hate that this is her life and her reality.  I still hate having to act like I am okay with any of it because of occasional societal pressures.  I still cannot shake the pain and physical strangling feeling that has consumed my heart since first hearing and reading the letters CDKL5, and I am starting to understand that I don't think I ever will.

There's always one

There is always that one picture that does me in.  Every. Single. Summer.  The one that I know is inevitably going to occur but I have forgotten over the year is going to be taken so it will always continue to catch me by surprise.  It is the one that makes me smile for a split second before my brain registers what I am looking at and what is missing, well actually more like who.  This is then followed by a dialogue that occurs silently within my mind about how nothing/no one is really missing and that it is just the (sad) reality of life.  Yet, my internal negotiation doesn't change the fact that the damn picture has still managed to pierce my heart.

I HATE after 4 years on this journey that these types of moments still occur.  More often than not I find myself in a state of numbness that only periodically allows this sort of real life pain awareness to seep inside.  Call it whatever you want, it is one hell of an amazing protective device, and personally, I prefer the numbness over the stabbing pain my heart feels when one of these moments creeps in, so I am glad they are only occasional.  What I dislike most is that it almost seems like my mind takes the picture completely out of context.  Where I should be looking at my oldest daughter, her best summer friend, and her little sister, standing on scooters posing for an adorable picture, my mind does not see Sonzee standing next to (who should be) her summer best friend.

I HATE these types of reminders of how old Sonzee is.  I HATE these types of reminders of what Sonzee is unable to do, of who she is unable to be, of how much of life she is missing out on.  I HATE that this picture that I should be printing and placing in a frame for my oldest daughter because it is such a great picture, takes the breath out of me every time I look at it.  I HATE that these types of reminders pop up randomly without notice and seem impossible to prevent.  I HATE that not only was she missing from the picture, but she was sitting at home miserable, unable to be outside.  I really do my best to not focus on what Sonzee isn't able to do, or doesn't do, or can't do, but sometimes life seems to get in the way.

The middle

I went outside to walk my oldest daughter to her friends for a sleepover.  The weather was absolutely perfect.  The sun had disappeared from view, but the sky was still blue with a sliver of the moon visible and some greyish white clouds crossing by.  There was a slight breeze and the air smelled like the real version of the mountain breeze fragrances that you buy to attempt to replicate the real thing.  My first thought was that I was going to come back, grab my computer and sit outside, so after a successful drop-off, with my coffee in hand, I did just that.

I set up my chair in the same spot I had placed Sonzee's 4 hours earlier.  The same place that when I walked out of the house one-day last week I stumbled in my tracks as I watched two deer eat from the grass and couldn't believe how close they actually let me get to them.  If I turn my head to the right, beyond a not so tall tree and empty parking spaces there is a hill defined by large rocks at the bottom and topped with tall green trees that stretch upwards of at least 40 feet.  To the left is the grassy field which ends in green brush, more tall green trees, and power lines that mark the descent down another hill.  It's a quiet spot in terms of little car traffic but filled with various birds chirping.  It's the only place I don't actually loathe the sounds of their incessant conversations.

As I sat between the steep incline of the hill to my right and the abrupt descent of a hill to my right I reflected on how similar this specific location represents where we are on Sonzee's journey.  Cautiously we move on our semi angled flat surface carefully avoiding slipping down the hill on the left and avoiding the struggle of climbing the hill to the right.  We hope and pray to stay firmly in this spot.  The spot where the smells are crisp and clear, where the sounds are happy and wanted, where the unexpected albeit positive things come our way, and where the view from both the potential up and downhill situations look clear and beautiful yet equally uninviting.  It is the spot I don't ever want to leave,  the one I know we won't be able to stay in forever, but the one I always look forward to coming back to after the journey takes up and or down the hills.

Trepidation

The U-haul is sitting in the driveway waiting to be loaded.  I wouldn't let Sam put anything inside it last night out of fear of losing my visual guidance of the items I packed.  I just finished the last of Sonzee's boxes, but those are the last things to get loaded since Sam will have to take the majority of them out each night due to temperature parameters.  I remember the first time we traveled as a family of 3 with Sonzee's oldest sister.  We had so many bags and so many items all for this one little baby.  Now I look at Sonzee's section of the garage pile-which extends into the main area of our house so those items stay cool and I wonder how one person can require so much.

This year marks the 4th summer we will be going to NY with Sonzee.  The only summer of her life we missed was the first year she was born because we were so afraid she would start having infantile spasms and we would be in the middle of nowhere.  Every year since her doctors wish us well and send us on our way, reminding us before we go how proud they are for us not stopping our lives, how great it is that we still go, and how we can reach them at any time if we need to.  Every year we pack up and go more excited than apprehensive, however, this year I am filled with more anxiety than excitement.

This will be the first time we will have traveled out of state with Sonzee since she had her central line placed in December.  This will be the first time she will be on TPN/Lipids and we will not be within a familiar hospital's nurse's reach if she has an emergency or needs emergency labs.  The closest hospital is a regional center that we have visited once and she was out of their comfort zone and all we needed was basic abdomen x-ray.  I am so beyond fearful of a fever.  I am scared out of my mind for a central line infection.  Will she require air flight if that occurs since the children's hospital (that her amazing GI told us to use because she knows the doctors and will coordinate her care once we tell her we are on the way) is over 2 hours away?!  I want to plan and prepare, I do not even know how, and I want it to be a complete waste of time and worry.

Packing

Over the past two days the townhouse we have been renting has been filled with half filled plastic bins, boxes, and suitcases.  The last loads of laundry are being completed, counters wiped down, and floors swept.  I have been putting off packing until the absolute last minute because I am not exactly ready to leave.  My mind knows that I cannot stay here forever, but there is something about this place that has my heart, I think it is the combination of mountain air and the most amazing friends we have continued to make and strengthen bonds with over the years.  So today we will walk down the steps of TH49 and drive down Town House Road one final time for 2018, and yes there will most likely be some choking back of tears.  This day every year is always bitter sweet as it marks the end of our summer retreat but paves the way for the next 10 months. 

I am always amazed at how quickly 6 weeks passes by.  Sonzee made it another summer with minimal interventions required.  She got to spend time in the pool, outside, bouncing in her bouncy seat, and relaxing.  I will be honest, she did minimal therapeutic activities and minimal work.  We can just pretend that her eyes were patched daily and that she worked on weight bearing after the 2nd week.  She did get 40 nights of sisterly snuggles, naps in the arms of Sam and myself, and a multitude of conversations with so many people who care about her.  She went to a new amusement park, returned to familiar places, witnesses a couple family lip sync contests and dance offs, and got to meet new people.  Her GI issues earned her a visit to the local hospital ER, but luckily she was not given a tour of the actual inpatient rooms.

Overall, in my eyes, I know her summer was a success.  This is small town in New York has turned into our safe zone, the place where reality is muted and life adjusts to a calmer, slower, and serene way.  So today we will pack up our bags and memories from summer 2018 and hope that google photos and my mind will do them justice and carry us through the tougher times that will inevitably come our way. 

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8 days

Our summer in NY comes to a close in just 8 short days.  I am wondering how some days feel so long but time continues to pass me by with record breaking speed.  By the end of this week Sonzee's oldest brother will have turned 7 years old and her youngest brother 8 months.  I would pray for time to stand still except for the fact that for the next 8 days I can confidently say that Sonzee will be uncomfortable and in some sort of pain, and so each day is one day closer to being able to address her needs in a more suitable environment.

I wish I could say that once we return home her issues will be remedied, but I am more realistic, and we have danced this dance a time or two.  In the recesses of my mind there is hope that our next solution will be successful, but it will not come without a hefty price tag of potential yet guaranteed challenges.  While Sam and I are finally on the same page, the pit in my stomach, weight on my chest, fear in my mind, and pain in my heart are all too much to handle. 

This summer as usual has provided the support I have needed to rest and recharge so I am able to tackle what inevitably lays ahead.  It has allowed me on a certain level to ignore life and choose what we want to focus on.  Being away has kept me from emailing doctors daily, kept us out of inpatient stays, and allowed us to provide some semblance of stability for Sonzee's siblings while keeping Sonzee as comfortable as best we could.  We have 8 more days to live in our version of fantasy, to go on our 3rd annual trip to Hershey Park that Sonzee's siblings have spent a year anticipating, and to continue creating family memories.  So while the next 8 days will be filled with bitter sweet moments we will do our best to highlight the sweet ones and overcome the bitter ones.


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Summer

Last Thursday we boarded the plane for summer 2018 in New York.  This is our family's 3rd consecutive year and 4th year in general that we we will be spending the summer in the Catskills.  Every year when the summer ends I eagerly await its return, because there is just something about this place.  A change from the hustle and bustle of our typical, crazy, everyday life.  The mountain air, gorgeous scenery, and lack of doctors offices and hospitals gives me enough fuel to keep me going through the rest of the year.  Then when summer rolls around, we gamble that Sonzee will behave and we won't have to visit any doctors or hospitals. For the most part we have been lucky, and even though inevitably our luck will run out soon, the trade off will always be worth it.

We have been here 3 days and I already feel like time is going by way too quickly.  My list of "To-Do's" and prospective achievements for Sonzee are lengthy, and as usual despite the lack of scheduled activities, it does not appear that any of it will be completed.  No matter that we changed scenery, my brain never leaves the chaos and world of CDKL5.  There are medical letters of necessity that need to be written, prescriptions that need to be filled, questionnaires and studies that need to be started and finished.  We just can't seem to escape what comes with the life of CDKL5 Deficiency Disorder.  Yet, the thing about being in the mountains, during the summer, with the entire family is that all of my long lists of To-Do's tend to get pushed off, and I am partially okay with that.


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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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Becoming accustomed...

Whenever Sonzee goes through months of multiple daily seizures I do get numb to them.  Some of them bother me more than others, but overall "I am used to them".  I feel like when I say that to people I genuinely believe it.  Seizure are part of all the amazing offerings of CDKL5, well really it is more than that, THEY are the essence of CDKL5 at its core.  However, it is not until Sonzee experiences a break in her seizures and they return that I realize how much I was fooled into thinking I was/am used to them.  I guess I was not aware of just how talented my brain has gotten in constantly shielding me.  

I have watched this little girl seize since she was a newborn.  I have seen her body move in ways that are just not normal.  I have seen so many several types of seizures that my descriptions typically involve some morbid explanation that leave some of her doctors uncomfortable, but they at least understand what her body is doing based off my words.  I always try to accompany my descriptions with a video, but it is obvious that even the professionals find it uncomfortable to watch.  Which makes me realize just how not okay this situation is, no matter what my brain tries to convince me of.

There should not be any parent who must "get used to" witnessing seizure activity in their child.  This should NOT be an effect of a disorder.  My brain should not have to find a way to cope with this.  It just should NOT be.  I do not think I will ever understand why the hallmark of a CDKL5 mutation must be the most volatile atrocious experience you can possibly watch your child go through.  My brain clearly has limitations with its capability of comprehension in this department.  I guess I will just have to give it a couple more days and I will be back to the state of numbness that I get accustomed to and prefer.

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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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Planning

Something that I have had difficulty with since Sonzee has been planning anything.  Life has been handled in more of an hour by hour manner which is both helpful and stressful at the same time.  I miss being able to look at the future and mark things other doctors appointment in my calendar.  It is not just that we don't know how things will go with Sonzee, it is also the mere fact that I have limited capabilities of processing things in the future and or having the energy to plan.  However, currently things have been calm.  **I might regret writing those words or even thinking them, but it is our current "now" and it is the truth.  With that being said, I am actually planning for our summer relocation already and I couldn't be more excited!

In 2014 we started a summer tradition to spend a month in New York.  In 2015 we unfortunately had to cancel after Sonzee began having seizures and our fear that they could turn into infantile spasms while we were away.  After missing that summer away, we decided as a family that in 2016 we weren't going to let anything stop us from the much needed and wanted summer away. We thankfully were able to pull life together enough to escape to upstate New York Sonzee finally escaped from the hospital in June.  I am beyond stoked that our tradition will continue in 2017 (G-d willingly).   I have marked the dates on the calendar,  have begun to fill out camp paperwork, sent in our request for the rental property and have even began the initial phases of planning our mini trip at the end of July.   

I know that things can change in an instant, but I am taking full advantage of our current calm as well as my renewed desire to plan.  I don't know if planning this far in the future is my brains way of ignoring the decisions that need to be made within the next couple of weeks in regards to Sonzee's feeding tube and formula changes, but regardless it is a nice distraction.  I have missed my type A personality and I'm so happy she is back for a visit.  I don't know how long she'll stay, so I intend to exhaust her for as long as I can.

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Summer

As I packed up the house we rented and thought about the time we have spent in New York, I feel the tears swell in my eyes.  This summer was more than just a vacation, it was a representation of starting fresh after everything we had been through with Sonzee over the past 17 months.  It was a chance for our family to become whole again and it was a chance for us all to grow closer as a family as well as ourselves individually.  I think I can speak for us all that this was the best summer since Sam and I have been married.

We spent the months leading up to this trip uncertain if it would ever become a reality.  Similar to how we face much of our life with Sonzee, where nothing is ever 100% clear or certain.  In a sense it is just life in general, special needs family or not.  When we finally purchased our plane tickets it felt similar to how it does after making a medical decision for Sonzee, still unsure if things would go the way we anticipated, but a weight was lifted from our shoulders because it was no longer in our hands.  

We spent 5 weeks tucked away from busy streets and jam packed schedules. Topped off with 4 days of fun at Hershey Park.  We spent 4 weeks away from any medical facility.  We spent 4 weeks relaxed and where we could actually take deep breaths.  It was a chance for me, specifically, to let go a little.  Sonzee has been off of antibiotics a record time for her entire life.  She made it an entire month without showing any signs of being sick.  While her seizures came back soon into our time away, she developed physically in so many ways.  

I wish we didn't have to leave.  I wish I could have frozen time while we were here.  Unfortunately all good things must come to an end.  That is also how it always seems to go for the good phases of our journey with CDKL5.   Ironically the symbolic nature of our vacation and what it meant in terms of starting fresh has come full circle. As we pack our things I am already scheduling an unplanned EEG for Sonzee when we get home so we can know what exactly is occurring in her pretty little brain.  Again the fear and worry are invading my mind in all areas, the mental vacation coming to a close as well.  Our vacation is over in so many ways.  The familiar lump in my throat has returned and I am trying to push the panic away.

As her epileptologist told me, there is nothing we can do now anyway with her being sick and worrying doesn't help.  While our summer in the Catskills and our journey up north is officially coming to an end, the images I see when I close my mind will be a constant reminder of the physical peace and tranquility that I felt here.  If I have learned nothing else over the last 17 months, it is that the coaster must go up and it must come down, but eventually it goes straight before either.  No matter how many ups and downs we face over the next 10 months I have already started my countdown for our return to the place where the track goes straight and we can start anew.

And just recently someone wise told me the best quote..."you have to leave in order to come back again"...words so true and so applicable to every situation.

Summer changes

It has been a week since our adventure on the east coast began.  The fantasy of this experience has been building up in my mind for about 2 years and more so since we paid the deposit on the town house rental back in February.  When Sonzee landed herself inpatient in May, we quickly realized that our planned summer of tranquility and family bonding might not occur in the way imagined.  As June approached at an insanely fast rate, this trip felt slightly out of reach.  Similar to a person reaching out their hand, but they are just a fingertip shy of being grabbed.  Thankfully, in this case we were able to get a grip at the last minute.

I am not naive enough to think that by flying multiple time zones away that Sonzee's challenges and our predicament will simply vanish.  I know no matter where we go or where we are that things will not drastically change.  Sonzee is not going to have a functional CDKL5 gene just because we are in a calming and cooler climate.  Yet, somehow the fresh air, the ability to take multiple outdoor walks, the chance for her to swing and go to an outdoor park in the middle of summer are making this journey a gazillion times better.  

The fresh air of the Catskills is doing wonders for all of us as a family, I especially.  The kids are able to run wild and free outdoors.  They walk to their friends and play in a grassy field with other children and I am able to fight my urge to be the helicopter mother.  The pace is ironically slow for us being in New York.  There is only camp drop off and pick up besides Sonzee's medication alarms that provide an actual schedule.  I have been able to spend more quality time with Sonzee's siblings, my patience is slowly growing, the weights and pressures of everyday are slowly lifting.  I am so glad this summer dream was able to become a reality, and I look forward to making many more memories this summer and in years to come.  Sometimes changing your environment can actually change your perspective in more ways than can even imagine. 

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