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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Given

Last night I heard one of the most heartbreaking stories that happened to another person and their family.  It made falling asleep even more challenging for me, and that is typically not one of my strengths in general.  While texting with a friend, my mind started racing with a ridiculous amount of thoughts.   Among them was "g-d only gives you what you can handle".  We finished the conversation with me saying "thank g-d I clearly couldn't handle that, because we know how g-d likes to give me what I can handle". 

Honestly, I am one of the first people to roll my eyes when someone says "g-d only gives you what you can handle", and in 2016 I wrote a post about religious doubts and how that statement didn't make me feel so great.  After last nights story I started to think about other circumstances that I personally have not been faced with and the weight of the phrase sat on my shoulders in a different manner.

Not all of us are born knowing what we can supposedly handle.  A lot of us are introduced via various circumstances that we encounter on our own personal journeys.  Initially we are shocked and in disbelief that whatever is happening, is in fact happening.  We wonder how we will make it through, and then somehow you look around and realize you are already waist high in the situation "handling it".  Some situations are "more challenging" than others, but to each person their specific challenge is seemingly insurmountable at the beginning and then people push through and we somehow persevere (however that ends up looking).  I think the majority of us are always grateful for the challenges we are given vs the ones dished out to someone else, because "we couldn't imagine", and truthfully we don't want to imagine.

I am left sitting here today thinking about and being grateful for what I am able to handle, because as much as I think I cannot handle it, there are clearly other things that I cannot handle and I am so grateful I have not been given them to handle.  As for what I have been given...well I think I have enough confidence to admit I am doing a pretty good job at somehow remaining afloat and handling it.

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One minute 45 seconds

Lately I have been really struggling with my beliefs and the concept of hope in general.  I do my very best to try and be optimistic but the "real me" is more of a realist, which tends to come across as "Debbie downer".  I can own that about myself, and honestly, I do not feel like I am in a place to jump ship on the "perceived negativity" at this current juncture, because it is safer for me to be closer to the bottom.  When I find myself in one of these lull periods, it is as if I am more receptive to the shimmer of hope that might actually exist.  

In the middle of the night between Monday and Tuesday morning I had what will always remain one of the top 5 moments between Sonzee and myself.  As I went to start her back on her 20 hours of continuous intestinal feeds I turned my phone flashlight on and caught a smirking faced Sonzee looking over at me.  My immediate reaction was a huge smile and of course to begin recording this magic moment.  I honestly do not remember the last time I have felt her portray such giddiness and happiness outwardly, not to mention an actual "dialogue", my heart was literally exploding.  It was near one minute and 45 seconds where my 3-year-old acted like a 3-year-old.  One minute and 45 seconds so genuinely appreciated and not taken for granted that even typing this brings tears to my eyes.

Many minutes, hours, and days spent with Sonzee are surrounded by question marks.  Is she happy?  What is she saying?  Does she understand?  How can we help her?  Is she in pain?  Why are the simple things in life so challenging for her?  Those are just preliminary; my list is far more lengthy and complex.  I often feel like I am drowning with hefty decision making and uncertain repercussions.  Then randomly out of nowhere I am truly given a gift from G-d, as if he knows this is exactly what I am needing.  This one minute and 45 seconds was chicken soup for my soul and will certainly keep me company as we continue through this next phase of uncertainty along this special needs journey.  

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Peek-a-boo

Yesterday we did our annual summer day trip to Kelder's Farm.  My older kids absolutely love berry picking and going on the hayride and trampoline, feeding the animals, and milking the cow.  It is always a fun day and we share the experience with our family friends who have three children; their oldest is older than all of mine, their middle one is the same age as my oldest, and their youngest is a couple of months younger than Sonzee.  Over the years being around their youngest daughter has not really made me sad, just always leaves me in awe thinking of where Sonzee might be if she were typical.  However, this year as she is closer to being three it stings in a different sort of way.

Sonzee's older sister who is 5 has been playing with their youngest daughter almost every day.  They are so cute, and because my daughter is petite, they look close to being the same age, and make the cutest set of pals; hugging each other, laughing, and being silly together.  I was looking back through my pictures from our day at the farm and could not help but feel a pang in my chest as I saw all the pictures of the two of them on the trampoline and holding each other in the smiley-est embraces.  

Those pictures shouted at me "Someone is missing", "She is supposed to be 'Sonzee's friend'", "I should be settling the argument that she could be both of their friends".  It is always these random insignificant moments that crawl into my heart and tug at it in a way I could not have expected.  I have come to know these situations will occur, but since they are unpredictable in a sense, I am never quite prepared for how they will present themselves.  It is on the most perfect fun filled family days that the reality of who Sonzee was not afforded the opportunity to be, sneaks up unexpectedly and says "peek-a-boo".  

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"A cure"

This slide has been popping up all over my news feed from the CDKL5 conference this past weekend.  I do not know why specifically, but every time I see it pop up it sends my inner core into fight or flight and instant anxiety ensues.  I know that if I had been present and had all the information regarding the context of this slide I would most likely feel less threatened by such words, but as it stands, I just feel "vulnerable" to the potential of hope it should elicit.

After the 6th time I saw this image I turned to Sam and asked him why I was so angry over it.  It was and does give me such a strong negative feeling in the pit of my stomach, and I wish I could read it with the excitement of those who posted it.  I am unsure of the exact reasoning, but while trying to focus on a calming game of Sudoku, I couldn't squelch the numerous questions that came into my mind.  Firstly, is this really a cure for ALL of our children who have a CDKL5 mutation or will it only work for some?  Will Sonzee be alive in 2025?  Is it even possible to really cure a genetic mutation?  What would a cure actually look like?  Who presented this slide?  Does the presenter have a child with a CDKL5 mutation and if not, do they understand the weight that these words carry? and What really is the meaning behind the words on this slide?

It has, is, and always will be a challenge for me to truly embrace the words hope.  I wish I could say the word and actually believe in it.  I wish I could allow myself to be open to the idea of what hope represents, and allow myself to be vulnerable to every component.  I wish I was not so afraid, but that is really what it comes down to.  A bottom of the barrel, crippling, scary, dark, deeply rooted seed of fear that throws up this clear Plexiglas wall so that I can see what is on the other side, but am unable to be part of it.  I want to believe, I want to have hope, but I do not want to be hurt, I do not want to be crushed, and I do not want to be disappointed.  After all, this isn't about hoping for the sun to shine on a rainy day, this is about my 3 year old not suffering, potentially becoming a functioning member of society, and me not having to come to terms with the fact that I will most likely be burying her at some point in my life.

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Conference 2018

This weekend is the Biennial CDKL5 conference taking place in Denver, Colorado.  From the looks of my Facebook feed and the parent support page, the majority of our CDKL5 family will be present.  This is the second conference to take place since we have known of Sonzee's diagnosis and the second conference we will miss.  The obvious reason is because the weekend has coincided with our second weekend in New York both times, but if I am honest, the more psychological reasoning is a bit deeper in nature.

I would be lying if I said I wasn't a bit envious of everyone who is there.  A part of me that is sitting here in New York aching to meet all of my virtual family in person and to meet the children and siblings who went with their families.  There is a big part of me who would love Sonzee to be around children who are the most like her, just in case there are times she may feel like she is the "only one".  There is a piece of me wondering if I went if this would be the mom group that I would finally feel like I fit in most with.

Despite my envy of those at the conference, there is a significant portion of me that is not ready to be in the room with so many parents whose children also suffer from the effects of a CDKL5 deficiency.  I cannot physically see so many impacted children, in what would feel to me, a small confined space.  It breaks my heart that this is all of our reality, that such a debilitating deficiency exists.  I just will not ever understand and maybe avoidance is my way of dealing, because I realize more and more every day, I am still unable, incapable, and unwilling to fully accept the diagnosis. 

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Drifting

It is the night before the first day of camp.  My kids excitedly packed their bags as soon as they each got out of the shower before dinner.  I am used to doing this act myself, and while the Type A part of me cringed letting them throw everything haphazardly into their bags, I took a deep breath and just observed.  I couldn't keep up with their excitement as I was ensuring they each packed their own sunscreens, goggles, towels, and every other item they will need in their backpacks.  I was glancing over the "camphouse" items for Sonzee's bigger sister and trying not to think about the fact that tomorrow should be Sonzee's first day of camp as well.  I know that Sonzee was able to experience Friendship Circle camp in May, but that is not the camp experience I am mourning tonight.

I found my mind drifting off into the distance, to a life that is not mine; what I would refer to as my alter-reality.  It was there I was packing a 4th backpack with two bathing suits and two towels.  Sadly even in my fictitious reality I have no idea what backpack Sonzee would be sporting or what bathing suit style she would prefer.  I think the saddest part of this daydream is that I cannot imagine anything about who Sonzee would have been had she been the typical child we anticipated.  It almost makes me more angry that I cannot even mourn properly, because this deficiency has taken away everything that I should know about my 3 year old.  I am left simply guessing and insinuating about her personality and preferences, but the truth is, she is unable to tell me specifics so even my dreams leave me anxious about the potential disservice I am causing.

There are nights like tonight where I wish Sonzee's CDKL5 deficiency did not exist.  Where we were just a boring, typical family with no obvious outward struggles and I didn't know anything about CDKL5, childhood epilepsy, or have any significant first hand knowledge about a profound developmental disability.  While this is and always will be the path our family must travel, there is still a significant part of my mind that is traveling an imaginary parallel journey filled with the "could haves", "would haves", and "should haves".


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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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Epilepsy Blog Relay: Subtle Seizures

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

When our daughter had her first seizure it was not in a way I would have thought a seizure would look like.  It was subtle, quick, and questionable.  I honestly wonder how many seizures in her first days I missed, or how many I saw but attributed to something else.  I often wonder if I felt them in utero, or if her first one occurred right after birth.  In hindsight, the "wonky eye movement" we saw, that was attributed to just being "weird baby" have become her trademark.  So many times her simple eye roll will be missed by those who are unfamiliar with her, and to be honest even those who know her extremely well can still miss these types, or just think she is being sassy.  They are so fast that epileptologists who are not her own have missed them on an EEG.  They happen when you turn your head to pick something up, when you blink, when you open the fridge, or when you rub your eyes.  They are less than a second and look benign.

So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, "Oh wow, I never would have known that was seizure" and "How did you know that was a seizure?" The worst part about her trademark eye rolls are that they are just as devastating to her brain as her other types.  They tend to occur in clusters, seconds apart, and for lengthy periods of time.  They are the most difficult type for us to stop.  It is this type that resulted in a call to 911, multiple rescue medications, and at the time a new to her fancy diagnosis of "non-convulsive status epilepticus".   

Before 2015 I had never thought about seizures much less known anything significant about how they might present.  Our family has now seen so many various presentations of seizures that our family is quite proficient in identifying most (if not all) types of seizure activity.  It is amazing that our 5, 6, and 8 year old can tell you the intricacies of different types of seizures.  What is so important to know about seizures is that they are not always obvious and they are not what you might envision.  

NEXT UP: Be sure to check out the next post by Abby Gustus Alford at www.livingwellwithepilepsy.com

TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.

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