Tuesday, July 31, 2018


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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Monday, July 23, 2018

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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Tuesday, July 17, 2018


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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Wednesday, July 11, 2018

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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Monday, July 9, 2018


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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Monday, July 2, 2018

"A cure"

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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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