Thursday, December 13, 2018

Room 8129

We knew before we "checked in" that this was not going to be a short stay.  Generally speaking, her average length of stay is 7-10 days, and when we asked her doctor what the "usual length of stay was" for what we are doing, and she replied "a minimum of 10 days" we knew we might beat her 28 day stay.  We have never had that sort of knowledge in advance, so we did our best to mentally and logistically prepare.  It was not the ideal week to get started because of Chanukah, but it was when it worked with our team of doctors, so we obliged.  Our first week has gone by with just enough hiccups to feel we are right on track, yet I cannot answer the million-dollar question of "when are you going home?"

Hospitalizations have become part of our family "norm".  We have a sort of routine if you will.  The experience is sadly, yet comfortably, familiar.  The bigger kids get excited when there are no "contact precautions" and they can enjoy the playroom after school or get to watch whatever movie Sonzee has on in her room.  They handle it all in great stride and complain minimally in respect to their ages.  I know it has to be taxing on their minds and hearts, I see it written in the words on the dry erase door in the hospital room; "I hope you come out of this hospital soon", "I love you Sonzee", and heart and various shape drawings.  It stings for a split second and then it makes me smile.  


We have met a lot of new staff this stay but have seen a lot of friendly familiar faces walking the halls, popping in, and assisting with Sonzee's care.  I have bonded with mom's in the laundry area, we have shared the floor already with 2 other families we know, we got a room with the "bed", our window faces North, and the view is beautiful.  There is a constant mixture of feelings because of the situation and because of this journey in general, yet there is this feeling of community and sense of normalcy.  I suppose it is hard to understand unless you have ever lived this sort of life, and I am not wishing it on anyone, but considering other variables, there are worse things than living in room 8129.

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Monday, December 10, 2018

Avoidance

It's 10:15 on Sunday night and I am sitting by my desk at home.  It is the one night a week I allow myself to sleep at home when Sonzee goes inpatient, specifically because it is Sunday night.  Not much happens on a Sunday night at the hospital, so it is "safe" to let Sam stay.  I only sent one reminder text to have him make sure the nurses wore their masks when they changed the tubing on her central line, so I think I am doing well.  The washing machine and dryer are running their cycles, there are lullabies playing in the kids rooms, and everything is calm; except I have already stopped myself twice after I swore I heard Sonzee's seizure sounds and I felt my stomach fall. 

This happens every Sunday that she is inpatient and I sleep at home.  I don't understand why my mind cannot take even a few hours off.  Once I hear the sound, the panic fills my body and it takes so long for me to talk myself down.  My thoughts start to bounce all over the place.  I sent Sam a text and of course she's snoring away with some soft music playing in the background, calm as can be, so that should give me some comfort.  Yet I feel like it is never really about the "seizure sound" when she isn't around.

The "seizure sound" is merely a lightning bolt that matches the internal struggle of chaos I feel over every admission she undergoes.  Most probably because they are never straight forward simple admissions.  They are always weighted and involve "small" but really massive changes.  Her admissions are the times I am unable to ignore the medical complexities that are very much a part of her daily life.  I have no choice but to actually face reality when she is in the hospital, and I would much prefer to stick on my smile and say "she's okay", "she's Sonzee", or some other simple pacifying phrase.  I dislike the nagging panicky feeling that accompany the majority of the situations with her life, and I really dislike when there is no way to avoid dealing with them.

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Monday, December 3, 2018

That one time...

I am not the most comfortable when it comes to direct sales, it makes me uncomfortable to send personal messages on Facebook, send texts on my phone and put myself out there, yet I became a Younique consultant over the summer.  Truthfully it was really just because I wanted a discount on the makeup products I was going to be buying anyway.  My sister thought it would be fun to do live videos on Facebook, and we started off doing them semi often, but then life continued to happen and we really haven't been doing any.  They are honestly fun to do together and we have a good laugh or two, which is really the entire point, neither of us really emphasized the selling component of the makeup, but if it happened, it's a perk.  Then about 3 weeks ago a friend of mine who has purchased mascara from me told me about a vendor fair that was going to be taking place yesterday, and for some reason I said "This sounds like a great idea".

Over the last two weeks a lot has been loaded on our plate in regards to the direction of Sonzee's care.  It seemed as if things were unknown and up in the air for so long and then all of a sudden the logistics came together, yet mentally nothing is actually cohesive.  I would be lying if I said everything was surprise, yet I would also be lying if I said everything was not.  While some of what lays ahead are based on the recent situation where we became aware of just how fragile her bones actually are, the other things are based off of conversations and care conferences that have been occurring for months, and topics that have been discussed for literally years.  In addition to everything that is going to occur she has been sick and missed an entire week of school, and my emotions and thoughts are really all over the place.

As I sat in the room yesterday with various vendors, it was only fitting that the makeup counter from Nordstrom was placed across from me one table over, their setup taking up two long tables.  Women who have clearly done these sort of events before.  Women who brought those fancy makeup chairs and wore the makeup brush aprons.  I wanted to leave the minute they began to set up their table.  After all, it was the first night of Hanukkah, I was missing attending the candle lighting with my family, and we only have 3 nights of Hanukkah as a unit before Sonzee and I fly solo on the 8th floor of PCH for g-d knows how long.  I felt guilty I said yes to this event, I felt angry that I didn't stand a chance at selling anything when I was missing out on crucial family time.  I felt upset and scared about everything that is coming our way.  So there was that one time that I sat at my first vendor event, wondering what the heck I was doing there in the first place, in front of complete strangers and my close friend and cried.  And then I wiped away my tears, acknowledged that it wasn't about the vendor event, made some friends, and even made a sale.

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Monday, November 26, 2018

Wrong

Yesterday was a big day in our house as we celebrated Sonzee's baby brother's first birthday (officially it is Wednesday, although I am still in denial how that much time has flown by already), and her biggest brother had his final championship game for ice hockey (that we did not anticipate his team qualifying for).  It was a jam packed day, but filled will the typical chaos that comes with life of multiple kids; except for the fact that overshadowing it all was that Sonzee has been sick since Friday with the medically complex version of a common cold and she spent the entire weekend in her room, missing it all.

The saddest part was not even the fact that she was missing from the festivities or that she won't be in any of the pictures from the day, or that she spent the entire weekend rotating pain/fever medications and having constant seizures (which is not her typical "sick routine").  The saddest and worst part of the entire situation was that, I have come to expect this in our life.  The disappointment and sting was not as strong as it once was.  This has happened so many times, it is now part of our typical.  I was just beyond thankful this was one of the Sunday's she happened to have her nurse, so she could stay home and in her room to rest quietly and neither Sam or myself had to miss out on the festivities.  Despite the normalcy of the situation lies still a blanket of guilt.

Guilt that it is okay for us to go on our day without her present.  Guilt that we are used to it.  Guilt that there was relief in having her nurse care for her.  Guilt that life continued to go on without her being there with us in the same room.  Guilt that I didn't cry over the situation.  Guilt that it was better for her to spend the day in her room and not with the rest of us.  Guilt that this is her life.  Guilt that there is nothing we can really do to help her.  There is just so much guilt.

I was partially proud of myself for not letting the situation get the best of me, but partially upset that I didn't.  It continues to be a common recurrence, especially as she gets older and each time I am unsure what reaction is right.  I know nothing about our life is really normal, so there is "not really a right"...but it all seems to wrong.

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Monday, November 19, 2018

If only

It was "one of those days" yesterday.  Sonzee's seizures were nonstop, she cried when she wasn't having them, she slept after she had them, she was in visible pain when she was awake, and she was having a very difficult GI day.  All in all, by 5pm I was trying (unsuccessfully) not to cry by my desk and by 6:30pm I was officially over the day.  I managed to get myself under some sort of calm by adding makeup into my shopping cart and posting an epilepsy awareness post; at least the latter makes me feel like I am doing something to help.

It does not feel like it has been that long since I have been in this position.  The one where everything between the last melt down and the one on the horizon becomes too much for me to keep bottled up and eventually I turn into a New Years champagne bottle being opened.  I know this is all just part of the repetitive cycle that comes with the situation, but I hate when it gets to this point.  Within the next 24 hours I will no longer be able to hold in the tears; it is ok, it is time for them to come anyway.  By Thanksgiving I will have be able to smack a smile on my face and almost feel the same behind the scenes, and by next Sunday I will have pulled myself back together to face the next unknown period of time.

If only this was not the reality.  If only things could be easier for her and I did not have to watch her suffer so often.  If only there was a magic potion that could be created to completely fix the damage that has been created and will continue to be by her mutated CDKL5 gene.  If only I could close my eyes, go to sleep, and wake up to a Sonzee who was born with a complete CDKL5 gene.  If only prayers such as the ones I have relied on for the past 3 years 9 months and 8 days could actually come true.  If only. 

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Friday, November 16, 2018

Preparations...continued...

I sat down to write this post last night after the word "preparation" kept running through my mind.  I knew it would be the perfect title for what I anticipated writing, but I also felt like I had used the word before as another blog post title.  Funny enough that only a couple of months after I began blogging in 2015 my first post about preparations was written, and 3 years and 4 months later this post rings eerily true and similar as we embark on another path of uncertainty.

It is a weird experience to keep repeating similar but completely different situations.  The groundhog day effect aura lingers but each challenge, each discussion, and each decision is ultimately independently determined despite the influence of the past.  I find it fascinating that no matter how many times we go around this merry-go-round I am no better off prepared to make any of these life altering decisions.

Every day this week I have been playing out the best case scenario of what could come in my mind.  I am partially proud of myself for (apparently) still having some hope and faith I was not aware I had, and partially annoyed with myself for even attempting to think that things could actually work out in reality how they are in my dreams.  I do not have the stomach to even consider the worst case of these decisions because it is just too much for me to even process.  Too loaded.  Too much guilt.

I just keep telling myself that we are doing what she needs.  We are making our choices based on what we feel is best for her overall quality of life and well being.  We are making our choices with HER best interest at heart, and so to quote myself, "[I] have to trust myself and my knowledge, and pray that I have enough of a foundation to get it right."


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Tuesday, November 13, 2018

Anticipation

Last Thursday I wrote a message to one of Sonzee's doctors after we had finished the last of two important appointments we had last week.  Every time my hospital app sent me a notification I was hoping it was her, but each time it was not.  I don't know what kept me from sending her a follow up message to check if she received the first one, but I just did not.  Maybe it was that I knew she would be handling things behind the scenes and eventually get back to me, or maybe it was because I didn't really want to hear what she was going to say.  Either way I let things go.

This morning Sam handed me the phone and it was Sonzee's doctor's nurse.  I knew it was her before she told me it was her just by her voice when she said "hello".  I listened to everything she said but despite my participation in the conversation my mind was 100 miles away attempting to process everything that is coming our way.  I do not know if it is even anything I will fully be able to process until I get to play the "hindsight" card 6 months from now.  If I let myself start to accept these feelings I immediately get sick, so I have been doing my best to just push it all away.  I honestly do not know if that is smart, and irregardless it is working less and less.

I spent half of my day yesterday either successful with my endeavor to ignore my emotions and the other half warding off the anxiety attacks that kept occurring.  I know change is inevitable when it comes to potentially improving Sonzee's quality of life, but the risks that accompany the potential for success are sometimes scary to justify, yet necessary to face.  If only that crystal ball could give us a sneak peak at the future and allow us a cheat at knowing how things will unfold.  I know that is not how this whole game of life works, but oh how I wish it were.

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Friday, November 9, 2018

Going away

Since I have become a mom I have never gone away from the kids for long periods of time.  We have gone a night here or there and I think our longest get away was maybe 36 hours.  Since Sonzee has been born leaving all the kids under the care of one person for overnights has happened one time for Sam's 35th birthday.  I get so nervous leaving her with all of her needs that the only comfortable way I can even entertain leaving Sonzee and going away is if she is able to get into the Ryan House.  I have to be on my game as far as preparations for this to work out, so when we knew our long time babysitter was getting married this upcoming weekend, I called Ryan House 6 months ago to book her stay.  Despite calling when booking opened, the soonest I could get her in was Sunday afternoon...we are scheduled to leave Saturday night.

These last few weeks I have been a nervous wreck with everything going on with Sonzee and the thought of going away.  I was nervous about her night at home Saturday night even though we found an amazing day time nurse who was willing to do the night shift.  I was nervous about her drop off going smoothly on Sunday and what if I forgot to tell my sister something important and it was never mentioned to the nurses at Ryan House?  I was so worried over everyone forgetting to pack all of her medications after they gave them to her and I didn't like that I would have no control.  The last couple of days I have been so anxious about going away, I have spoken with Ryan House literally every day asking if someone had cancelled.  Yesterday morning my prayers were answered when they told me we could bring her in today.

It is one thing to leave typical kids with grandparents and aunts/uncles, although even that isn't exactly worry free.  However, when it comes to leaving a special needs child, it is an entirely different situation.  I know everyone who would have watched her would have done it amazingly, but I feel so much better being the one to drop her off and set up her room.  I will be able to give the last minute reminders, discuss all of her medications, make sure they set up the smaller camera over her bed to ensure they don't miss any seizures, and show them all the various seizure types she is having (although she will undoubtedly start a new one while she is there).  I still have the nagging feeling over the thought of going away and leaving the kids at home, but at least I know they are all in great hands.

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Monday, November 5, 2018

Torn

Yesterday was one of those days that was packed to the brim with excitement and events that could take even the most hardened persons breath away.  It was a day where I felt grateful for so many organizations, people, and experiences that our family has come to be blessed with all because of Sonzee.  Yet at the same time, it was one of those days that weighs heavily after all is said and done, the kids are in bed, and I am left sitting alone with my cup of decaf coffee reflecting on the events of the day.  So many organizations have been created for children and their families to simply bring a smile, or give a moment of happiness, and or make them forget for a moment about the chaos, sadness, and real-life experiences they are faced with.

I promise you, they live up to their lofty pursuits, but I am left with a huge knot in my throat and tears in my eyes.  These are organizations that were founded because of a child who gave the founding member(s) inspiration and then passed away.  Maybe not every child who walks through their doors and benefits from the amazing experience will face the same fate, but there is a reason these organizations continue to exist.  My heart hurts tonight for every parent who has had to face the unimaginable, the unthinkable, and literally the most heartbreaking idea conceivable.  Full disclosure, a selfish part of me is overwhelmed with emotion for what I know eventually lays ahead for me yet have no idea of how to prepare for.  Is there even a way to?


It is very surreal that despite watching Sonzee experience multiple seizures a day, the complications she faces with her CDKL5 mutation, and acknowledging that one day we will face the unimaginable, I have not really processed how it will all play out as a reality.  It is the days where I am humbled by those who live their lives making sure that families like ours have as many happy moments as possible that are most difficult.  It is a day like today that was filled with amazing events mixed in with the usual dealings of CDKL5 that I am torn between feeling beyond grateful and beyond upset that this is Sonya's Story.

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Friday, November 2, 2018

Until

I admit that prior to having Sonzee I had no idea that becoming a special needs parent could happen to me.  While I knew anything was possible and working in the special needs field brought it semi close to home, I really did not think it would ever become my home.  Who would have thought those parents of the babies and preschoolers that were my clients back in 2008-2011 would now provide me with a different level of education and support.  I wonder if they worried for me when they knew I was pregnant each time.  I wonder if their hearts broke when one of their friends shared that they were now joining this unique and mighty elite club.

Even if you are told "the odds of" having a baby with XYZ are less than 1% you never expect YOU would become that statistic?  Literally almost daily a new Facebook friend of mine is having a baby.  The vast majority are (thankfully) healthy and amazing babies born to parents who don't seem to have considered what could have occurred.  Maybe they do and they just don't share those fears?  Maybe they really are obvious to rare.  Maybe they know but figure there is no point in worrying?

I will admit there is a little bitterness that occurs within me when I see my friends 3-4 year olds.  It just dawned on me yesterday that Sonzee should be in school with her cousins, sandwiched between their classes and playing with them at recess.  I know she has been 9 months younger and 18 months older than her cousins her whole life, but I did not stop to think about that fact.  It makes a little annoyed that they are all missing out on that experience.  (I know they have other ones, honestly, I don't care, I want the ones that are being missed).

The entire time I was pregnant with Sonzee's youngest brother I was a mess.  He is almost a year and it wasn't until recently that I have started to relax a little.  The fear of rare sneaking up on us again is real and at the forefront of my mind.  In a way I want a repeat because I feel like I missed out on enjoying his infancy.  When I think about how I had no idea about parenting a special needs child before Sonzee the way I do now, I think it was a blessing, and probably the reason no one ever really thinks about what could happen to them until it does?

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Tuesday, October 30, 2018

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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Thursday, October 25, 2018

But I wish...

I was scrolling through my Facebook this week and there was a little girl who is similar in her presentation of CDKL5 as Sonzee, and she is now sitting unassisted.  I was honestly so excited for her and even more so her family.  She has no idea how much that little milestone will mean to them.  It is one of those milestones I have shelved for Sonzee; it is just easier that way.  After I scrolled past I did not keep thinking about her sitting, but then another image of her sitting appeared, and it bothered me that Sonzee never has gotten to experience that sort of independence. 

I really do not know how or even if her life would be drastically different if she was able to sit unassisted.  Would she even like it?  It is not as if she would be able to crawl out of sitting, or interact with any toys, so maybe her being unable to sit is saving her from the frustration of being left in the middle of the room to essentially do nothing.  I wonder why I cannot truly accept these limitations her body has on her.  I wonder if it is just because there is an inescapable guilt that comes from not being able to help her achieve these developmental milestones.

do understand there is not anything I can do more of to help her, it is either something her body is able to do or something it is not.  It has little to do with any choices Sam and I have ever made regarding her medications.  It is not because we do not have her enrolled in 12 hour daily physical therapy sessions.  There was not something we did or did not do to cause her to be unable to sit.  It just simply is not in her DNA.


But oh, how I wish it were.

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Monday, October 22, 2018

Miles

I went to a baby shower yesterday that was 41 miles away from our house.  Driving there was for the most part relaxing, I enjoyed the silence, the alone time, and was only mildly stressed about being late.  I kept checking maps to see the estimated time of arrival to see if it was going to change, but for the most part I was pretty content with the predicted time I was going to get there.  The event was a lot of fun and even delayed leaving a bit at the end due to the anticipation of knowing how long the drive was going to be going home.  As I got into the car for the drive home, I opened a ring pop because why not?  About halfway into the drive, around the same time that I wondered if I was ever going to finish the ring pop, I began to get antsy about the length of the drive that I knew remained.  I kept thinking how I just wanted to be home at that exact moment, but I knew that was not at all possible.  At the same time, I began replaying a conversation I had a bit earlier regarding Sonzee and I realized how much of our journey with her was similar to the feeling I was having about the drive.

It is funny how the drive to whatever situation we find ourselves in with her is always quicker than expected.  It is almost as if there is this unassisted rush to get where she is meant to be, yet there is no real eagerness to get there and we just follow the path casually.  After we "arrive”, and things settle a bit and we get a chance to maybe anticipate where we could end up, it is then that I feel this imperativeness to get to the next phase as soon as possible.  Yet it is always at this point that it feels like it takes forever for the wheels to get into motion and for us to gain any ground.  It is as if time stands still and there is all this time to reflect on where she has been, where we are, and where we may or may not actually go.


As it stands today I know where the nearest path is taking her, and it was one of those slow yet fast trips that is bringing her to the starting point.  Part of the outcome has been a long time coming, resulting from multiple consultations and literally years of pushing it off.  Inevitably we knew we would find ourselves embarking on these next steps, yet I am so nervous and scared about how it will turn out.  Naturally in true Sonzee fashion she threw in a few extra speed bumps and we are also faced with completely new territory that is also just as nerve racking, but I think mainly because of its unfamiliarity to us.  We continue to travel along this slow/fast paced road, taking things as they come and go, yet ultimately wishing things would "hurry up and finish" so that we can all take a break and maybe settle into a comfortable status quo, but ultimately move onto the next, hopefully, more happier portion of her journey.

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Monday, October 15, 2018

So it begins....

Literally every year since we have been part of the CDKL5 family fall has become a season I have grown to loathe almost as much as all of the challenges mutations of CDKL5 bring to every family affected.  It is with the changing colors of leaves (in every other place besides Arizona and Florida), with the breezier air, and with the near end but almost strongest hurricanes of the season, that our tiny little family is reminded of just how relentless CDKL5 mutations can be.  Fall is when we all get the friendly reminder that is never very far from our minds; that our children can be taken from us quickly, without warning, and with no real justification as to why they had to suffer or have challenges in the first place.

Yesterday Sonzee had a miserable morning and afternoon, until we placed her into her spa.  Our happy little bear returned.  She swam with her big siblings, Auntie A, and her dad, while baby brother took a bottle, and I took in the gallons of water being splashed out of the spa while attempting to try and take pictures.  After we all got out I signed into Facebook to post about the fun she had and instead what I opened was post after post asking for prayers for one of Sonzee's CDKL5 brother's family because he had passed away.  Immediately, my heart broke, and sharing the afternoon of smiles did not seem very appropriate.

STRONGLY DISLIKE everything about life with CDKL5.  I HATE that my other children must grow up knowing and worrying about seizures, GJ tubes, surgeries, hospitals, therapies, a sick sister, medications, and everything else that CDKL5 has taught them.  I absolutely LOATHE parenting a child who has a CDKL5 mutation because I find it hard to believe there could be anything worse than watching your child suffer his/her entire life and knowing that you will eventually be burying them.  

There is no escape.  There is only the false sense of security brought to you by better days and healthy moments, along with the denial that it will not happen to your child, paired with the fact that they have already (somehow) made it out of the most unlikely situations a time or two before, so of course he/she always will.  It is the comfort in seizure alerts and oxygen/heart rate machines while he or she sleeps at night because naturally when you are alerted you "will be able to intervene".  The panic, the fear, the uncertainty, it never really was gone from any of our minds no matter that we did not post any messages asking for thoughts and prayers to a CDKL5 family, but now that we are settling into fall, so it begins again.


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Friday, October 12, 2018

Unexplainable joy

One of the greatest joys of being a parent is watching your child participate in something he/she loves and be able to express that love in an outward manner complete with giggles, a grin as wide as the width of his or her face, and an invisible aura that radiates from the soul.  If you are not a parent, I am sure you have at least experienced seeing a child engage in an activity that resulted in obvious happiness that it was contagious enough to enlighten your mood.  There are very few "life of a medically complex special needs parent" experiences that I feel I am lucky to experience, yet if you have never met a child who has difficulty outwardly expressing his or her emotions and then you witness him/her outwardly display joy, there is really little justice with words that can explain the affect it has.  It is one of those "you have to experience yourself" types of situations.

Over the past 3 years and 8 months there has not been one smile, peaceful or calm day, seizure free period, pain free time that has been taken for granted.  Every time our family is blessed with an obvious joyful day for Sonzee it is felt by everyone.  I personally can feel the happiness course through my blood and down to my bones.  It brings chills and tears to my eyes.  I have to fight the tears the same way I do when I am overwhelmed by negative emotions.  It is as if my brain does not know how to correctly process the information, I go into system overload.


I am sitting here tonight re watching the videos and pictures I have taken over the past 3 days of Sonzee in her Make-A-Wish spa and the tears are hard to hold back.  So many emotions wash over me.  Besides the obvious momentary bliss and joy being in the water brings to her, it is validation, we did it...we understand her...we did something right...we have not completely failed her...we can help her be happy.  I will not ever be able to adequately express how much of a positive impact this 2400-gallon rectangle of water has brought to this house, our family, and our little bear.  We will forever be grateful to Make-A-Wish and everyone in Arizona who made this possible.  This momma might actually get some sound sleep for the first time in 3 years and 8 months...


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Wednesday, October 10, 2018

weight

It is midnight.

My eyelids are beyond heavy and my eyes are blurry and dry, but as usual I am awake to welcome in the new day as the date changes on my watch.  My stomach feels a bit off and it is not any sort of stomach bug or illness.  My mind is a thought away from sending my eyes a memo that a flood is incoming and my chest a second away from skipping a beat.  I have been hitting refresh on one of Sonzee's CDKL5 sister's mom's Facebook page.  I hate this game.

Waiting is the worst part.  I try to tell myself no news is good news, it is the truth, right?  After all, it has been 10 hours since she last posted, and every other tag of her name on her profile page is her original post tagged, so I am sticking with my original thought.  The alternative is just too much.  I have lost count of how many of our CDKL5 siblings have been lost this year and it makes my heart feel excruciatingly heavy.


Today is one of those days that makes CDKL5 feel suffocating and inescapable.  I replay in my mind and on my camera images of Sonzee smiling in her spa during her first swim.  While the images bring me immense joy, the reality behind why there is an aquatic training vessel in my backyard and the organization that gifted it to us, paired with her CDKL5 sister in the ICU makes me want to run towards the trash can and then afterward partake in some ugly crying.  There are certainly times that the weight of this life is just beyond any earthly comprehension and I can tell you 12:40am is one of those times...

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Monday, October 8, 2018

Light


One of the most important lessons I have learned while being part of Sonya's story is that moment to moment everything can change and without warning.  One minute we were celebrating seizure freedom and the next we had the seizure tracker app opened and the timer ticking by.  One minute we were trying to give her a little taste of ice cream or frosting and the next we were changing her clothing and cleaning up the mess brought on by a miniscule amount of food.  One minute we were relishing the fact that she was able to roll from side to tummy, and the next we had to worry about potential bone she could be fracturing.  Trying to keep the imaginary see-saw of positive and less desirable balanced is a skill we have not yet mastered, yet we continually strive for.

As we near on two weeks since our 10 days in the hospital I am slowly coming closer to crawling out of the hole I fell into.  Every day home is another day our family gets to rebuild.  It is another day we can make memories together and another day we can attempt to celebrate the successes, whether big or small for each specific moment that occurs.  The further we get from day #1 of admission is another day to reflect on something potentially positive that is happening, which is honestly a daily struggle for me, but I do try.  I have to constantly fight within my mind to focus on happy thoughts and push away the ones that ultimately bring on fear, panic, and anxiety.  Then the rain came this past week to Phoenix.

Heavy downpours came from the sky, roads were flooded, debris was scattered into the streets and then just as fast as the storms came in, they passed.  They left behind floods in some areas, but overall, the sun came out and light blue sky returned along with 65-70-degree weather.  Then today, Sonzee smiled.  The breeze hit her face as I placed her into her wheelchair while I took her out of the house for her first activity since September 16 and our little bear smiled.  She smiled throughout the entire 2 hours she was with her (best) buddy Emma and she smiled when she came home.  Today was just another reminder that the storms will undoubtedly be back, but the image of her quirky little grin while holding her pacifier in her mouth will make the next one a little more bearable.

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Thursday, October 4, 2018

Recovery

It has been one week and a day and a half since we have been back home.  It seems that every time this chapter repeats, the recovery is always different and becomes more difficult.  I wish I knew why.  Maybe because the reasons behind the initial admission are rarely ever the same.  Maybe it is because the situation, and life surrounded with the complexities of CDKL5 in general effects every family member in a different way.  Maybe it is just because we are all exhausted from everything that is constantly thrown our way.  I can throw out my guesses from now until I am blue in the face, but odds are the reason will just be added to my never ending list of things I won't ever understand and lengthy list of "we won't ever know why".

These situations literally drain the life out of my body and take me weeks, really months, to truthfully be back to okay, or whatever okay has even become over the last 3 years and 7.5 months.  It is usually just enough time for another floor to be pulled out from under us so we can start sliding down into the dark CDKL5 abyss.  This past week after my rock bottom moment Sam reminded me that if I am feeling overwhelmed then odds are everyone in the house is feeling it too because this life is not normal.  It is true, nothing about any of the situations we find ourselves in when it comes to Sonzee and her life is normal.  None of them are fair and none of them do or ever will make any semblance of sense.

Yet here we are again playing the same game but with different specifics.  The all too familiar chaos that unearths another consideration, another complication, another source of suffering for Sonzee, and another bout of muddy clarity for the rest of us.  I wish I really knew what all of these hospitalizations and inconsistent crazy home life was doing for Sonzee's siblings.  I wish I really knew and was able to truly understand what Sonzee's perspective and overall desires over everything were.  Are we still making the correct decisions and are they the ones she really wants?  Most importantly, will we ever truly know the truth to that last one and what would we do if she disagreed?

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Wednesday, September 26, 2018

Hollow

It's Monday night and I am finding myself in a situation I know all too well.  Around 3:30pm they transferred her from our past weeks residence of 8118 to PEMU room 8138, to get a behind the scenes look at her seizures.  I have now spent the past 4 hours hitting buttons and documenting potential activity.  The familiarity and absurdity of this life rerun catches me after the last button pressing.  She has been whimpering for 20 minutes now, almost an ironclad confirmation that the reason I hit the button was validated, I will know for certain in 12-14 hours.  As I look into her blue/green eyes they taunt me; that was stupidly the wish I made the whole time I was pregnant, "please let me have another blueish eyed baby".  I see the glossiness in her eyes as she whimpers and the emotions build behind mine. 

I don't understand.  I really do not think I ever will.  Why her?  Why me? Why us?  We should be home with her siblings, with Sam, in our house.  I should not have to be here alone during another holiday.  It hasn't even felt like one to be honest.  Since Saturday I have read more than 500 pages of a book I never would have considered opening, finished 5 magazines from cover to cover, timed airplanes taking off and landing, and studied the arrival and departure of cars from every parking lot that is within my view.  This is not my first time completing the tasks that I just listed.  In fact, I am pretty sure I have resided in each of these rooms at least one other time over the last 3.5 years and have partaken in other meaningless time eating activities.  At least I got the rooms with the bed.

My heart hurts for Sonzee in so many ways.  Another specialist now added to her list, more diagnoses added to her already lengthy compilation, and more pain.  Always pain.  Why couldn't her CDKL5 mutation give a lifetime of laughter and trouble with being too happy?  Why couldn't she just not have a CDKL5 mutation to start?  Instead we have nights of pressing buttons that result in more taunting alarms that are triggers in and of themselves, taking me back to the very first stay when she was only 4 weeks old.  I can still picture everything about that stay, as I stared at her image on the screen in the video I even saw her look the ages she has at each PEMU hospitalization, these wounds won't ever heal.  The room itself is taunting as it gives us new information but rehashes the old. 

A CDKL5 mutation for her is the gift that keeps on giving...or rather really doesn't give anything appropriate in order for her to be pain free and content.  When I think she has hit rock bottom I quickly learn there was so much further she could go, because she has hit it now.  That is until the next byproduct of having a CDKL5 mutation comes sneaking out from the depths.


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Tuesday, September 18, 2018

Thought but never said...

I should be folding the massive amounts of clean laundry sitting in the hampers; besides seeing the other kiddos, that was my 2nd reason for allowing Sam to switch "night duty with Sonzee" for tonight.  I have somehow managed to order two Shutterfly books, one 16 x 20 canvas of our most recent family photo shoot, made and stored the baby his food, ate some amazing dinner brought to us by our longest Phoenix friends (and amazing cook), answered a lot of texts, watched our 2nd oldest yank out another tooth (gross, it is always so gross) but still have not folded the dang laundry.  Instead an earlier text conversation is repeating itself in my mind.

"It must be so incredibly hard to watch your child go through this..."
The replies I wrote and erased:

Watching her seize I am honestly used to, except on occasions.
I am used to it all.
Eh, she has been in pain for so long, it doesn't even phase us anymore.

I settled with:
"It sucks :-("
I debated sugar coating my reply.  That is usually my " go to".  I try to pretend.  I do not know why, who am I actually fooling?  I settled on the middle ground, with a quick and succinct reply of "It sucks...(semi cushioned) with the sad face".  It is the truth, it does suck, and the sad face is how I have felt the majority of the time when it comes to all things Sonzee.  The reality is this is so incredibly hard.  In fact it is so beyond incredibly hard there really are no words to do any of the feelings justice, and unless you are a parent of a child with CDKL5 or some other disability or genetic mutation that results in a nonverbal child along with every potential pitfall that could possibly occur in life, then there really is nothing comparable to offer the situation to.  

I cannot even find a way to express the extreme guilt, sadness, anger, and broken heartedness I have felt since Sunday.  Before now I could not really imagine feeling worse than I already have over the past 3.5 years of her life.  These last 30ish hours have brought on an entirely new level of all of my feelings.  More than 5 people today reached out to me concerned they were the ones who potentially hurt Sonzee, they are not even related to her, so I can assure you telling me any similar phrase to "Do not be hard on yourself", is never going to make a difference.  I am her mom, I should be able to know what, how, or if ever, (and g-d forbid) who is hurting her.  The depressing reality is, I DON'T AND I REALLY DO NOT THINK I EVER WILL.

This feels like the heaviest blanket of extreme parenting failure there ever could be.  In addition is the paralyzing fear of wondering what if we cannot find an actual fix? Not a band aid, but an actual useful, ongoing, actual real permanent fix?  What if she keeps getting hurt?  What if we wait too long to bring her in?  What if we keep causing her to suffer more and more?  Doesn't she suffer enough as it is?  

So if you ever find yourself thinking "It must be so incredibly hard to watch your child go through this..." the brutal honest answer is that it is something I wish and pray for with every ounce of my being that you never have to ever learn about, think about, imagine, or experience, because no parent should ever have to experience this form of parenting and from the bottom of my heart to every parent who does..."It sucks :-(". 


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Thursday, September 13, 2018

Cycles

Her alarm was going off loudly.  Her nurse was in the room with her and I was trying to get dinner on the kids plates after a long day.  I do not know why, but after 3 rings of the alarm I start to get irritated that someone couldn't just press "snooze".  I have a list of potential reasons, but I am sure I would have to really dig deeper to find the real root, and honestly it just annoys me, there really is zero harm in it continuing to sound.  Regardless I stop putting food on the plates and I walk to the room.  I don't get the door to the hallway closed behind me before I hear "It's ok, it's alright Sonzee, I am here, it's ok". 

I walk through the space between her two bedroom doors and walk next to her bed.  Nurse Teri says, "Ya, it's a seizure, we are at 1 minute...it's ok Sonzee".  I bend down next to her feet, rub her ankle, and then rest my face against her foot because every once and awhile these damn seizures get the best of me and no matter that I have watched her seize over an hour between the past two days, this 1 minute causes the tears to just swell in my eyes.  I wait for a pause in nurse Teri's consolations and then say "No Sonzee, it isn't okay that you are seizing, nothing about this is ok, but nurse Teri and I are here...", then I give her a kiss and have to walk out because I don't want nurse Teri to see my face. 

I get into the hallway, close the door after walking out and take a deep breath before I walk back into the kitchen.  I manage to get the tears out of my eyes before getting back to the girls.  They know Sonzee was/is having a seizure because we are all used the alarm by now, and her oldest sister decides she wants to say how she feels bad for Sonzee because of the seizures and that she does not go to the same school as them.  I honestly do not remember what her sister replied to her with because I was in preservation mode and just wanted to do whatever I could to not face them, not hear them, and not have to talk to them.  The one skill I am still (barely) holding onto is not crying and being emotionally upset in front of them, so that was only my priority, well that and getting them fed and in bed so I could get the tears out of my system.

So here I am at 10:51pm with my YouTube music on in the background, my individual serving of cake as my dinner, and my desk looking like a toddler emptied a box of tissues for fun.  It seems that not only does Sonzee's GI system and seizure presentation follow a pattern, but my emotions share a similar cycle.  I wonder how long it will take for this history to stop repeating itself because clearly it is more than 3 years 7 months and 1 day, and I should probably ensure my Amazon subscribe and save has extra tissues next September.

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Wednesday, September 12, 2018

A "new year"

This past Monday and Tuesday we celebrated Rosh Hashana (the Jewish New Year).  On Monday morning Sam and I debated whether we would be bringing Sonzee to the synagogue in order to hear the shofar (blowing of the ram's horn).  In general I am usually the one that is in favor of bringing her along to family events, while Sam tends to play devils advocate and suggest that Sonzee would much rather not walk .3 tenths of a mile in 105 degrees and sit in a loudish room, "stuck in her chair".  On most occasions she will be in pain, just have had a seizure, or present in some other manner that will make me side with Sam, but on Monday morning, I simply did not care.

Her first seizure of the morning was at 7:57am, seizure number two came a little after 9am, Sam was holding strong with his opinion, but I am more stubborn, and after all this is Rosh Hashana, SHE IS GOING WITH US.  Sam left with the older kids, and I put her baby brother for a nap while she was sleeping the seizure off.  A little after 11 her brother woke up and I was getting everything into the stroller and I told myself I was going to check her one more time to see if she was awake, and if not, I would leave her home.  G-d threw me a bone, she was just waking up, so I told her nurse to get her up because she was coming with us to synagogue, and off we went.

Seizure number three happened in the back of the synagogue, but she was there, she got to hear the shofar sound, and she received the (Cohen Gadol blessing) priestly blessing while she slept in her wheelchair.  We were going to be eating lunch at friends and we decided she and her nurse would come with us and hang out there versus going home.  It was on big seizure four of the day (within 6 hours from her first) that she was given her loading dose of keppra and snuggled on the couch with her nurse.  What a way to welcome a new year...good thing the secular calendar has another celebration in 3.5 months that we can hit refresh for.

I will admit her presence with us all day was 100% selfishly directed, but is it too much to want some normalcy?   As Sam left with the older kids yesterday, he said "see you at 11:30", I yelled back, "no you won't".  He said "You have to hear the shofar", "So does Sonzee", I retorted.  I will admit that I threw myself a toddler tantrum and refused to go to synagogue because "If Sonzee was not going, neither was I".  I was angry, to be honest, I still am.  While she had fewer seizures today, (thanks 3200mg of Keppra, VNS, and Fycompa for doing what you're designed to do?) I am still a bit bitter.  I just hope Monday is not going to indicative of what is in store for her year to come, but I suppose if it is, it isn't anything we aren't used to. 

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Wednesday, September 5, 2018

...

Every so often I will open a blog post from a year earlier to see where we were on this journey and see what, if anything, has changed and if so, in what manner.  I didn't remember that in September of last year I only wrote one blog post.  It gave me a chuckle that it's title was "muddy water".  I couldn't remember based on those words what the post was about so I opened it up and was reminded that a year ago Sonzee and I traveled to Children's Hospital of Philadelphia to try and figure out her GI issues.  In another "funny" coincidence I sent her GI doctor here in Phoenix an e-mail 5 hours prior to rereading the post.  I swear the days pass by but her story remains similar to the hamster on its wheel...attempting to run full speed somewhere, never getting anywhere, and ending up just completely exhausted.

It has been a month since we've met with her GI doctor.  Part of me feels like it was just yesterday, while another side of me feels like it was an eternity ago.  We have followed through with our temporary game plan, and in the mean time her seizures have returned into their usual end of summer beginning of fall nightmare.  No matter what we do now for her GI system it would not be possible to judge the outcome fairly because her seizures "dull" everything away.  It is a perpetual cycle.  A cycle that we have come to know and one I was pushing hard NOT to repeat.  I thought by pushing for care conferences beginning in Feb/March was a sure way to "outsmart" her body systems.  I should have known better, but I really thought we might actually get somewhere in my little game of beat the clock.

I lost. 
We lost.
She lost.


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Monday, September 3, 2018

Sonzee's Spa

Yesterday was one of those days that was strictly driven by an excess of adrenalin.  It will certainly take some time to fully decompress.  It was a day full of abundant smiles, an overflow of happy emotions, and a couple of moments of hidden happy tears.  It was a day that you can only dream of experiencing but honestly as a parent you never actually dream of happening to your family.  Forget when the reality of it all sneaks up on you much like the situation that brought you to the same point did in the first place.  It is one thing when you tell your children to close their eyes on their birthday and "make a wish" while blowing out their candles, but when you dream up a wish that you know will bring an immense amount of joy to every remaining day of your 3.5 year old daughter's life from this point forward (no matter how many more there will be) it hits you like a ton of bricks when it comes to fruition.

The sheer magnitude of yesterday is almost too much to actually comprehend.  There is a 22,450lb aquatic training vessel sitting on a slab of concrete in our backyard.  Typing those words brings tears to my eyes and a lump in my throat.  I did not even process that we have a child who qualified for a "Make a Wish", and now I cannot process that when I look into our backyard there is now "Sonzee's Spa".  Much like the day we were handed a packet about epilepsy and told to take our then 5.5-week-old daughter, who was still having at least 12 seizures a day while on medication, home from the hospital, Sam and I felt completely overwhelmed with the spa, the spa manual, and the chemical routine we were given.  

I wonder how it is supposed to feel when you have a "Wish Kid".  We know the reality of having a medically complex child.  Nothing has changed in a day, but oddly after yesterday it weighs a bit heavier on my shoulders.  If I am honest every day that passes by I get a little more scared about how many that means we might have left.  I choose to keep these thoughts in the recesses of my mind, yet answer honestly when asked about her prognosis by others.  I know there are different philosophies of how best to "handle" this reality, and every parent who finds him or herself in this position has their individual way they feel is best.  For me it is to acknowledge the reality but not become suffocated.  I will compare my thoughts to the brown water in Sonzee's Spa.  Yesterday the water was as dark brown as possible, but the chemicals will slowly work amazing magic and by next week our little mermaid will find herself enjoying daily swims.  The threat of the water going brown will always remain, but we will do our best to keep it as clear as possible so she can enjoy herself as much as possible.  Yesterday the reality of what it means that my child is a "Wish Kid" hit me hard, but by next week the harshness will dissipate and left behind will be the same slight nagging presence that we have felt since April of 2015.


There really is no clear way to express the thoughts going on in my mind.  We will forever be grateful to Marquis spa's, Stafford Tower Crane, Make a Wish Arizona, all of our friends and family that were present with us virtually and in person, and everyone that played a role in making Sonzee's Spa become a reality.  


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Monday, August 27, 2018

Dear Newly Diagnosed Parent

Dear Newly Diagnosed Parent, 

Welcome.  Today is the first of many days that your heart will simultaneously break and be put back together at the same time.  After all, when you agreed to the testing that has led you to this moment you did not really expect for the results to bring you here, to this point, an answer.  An answer that will undoubtedly leave you with more questions then you even know to ask and one that will never actually bring you any real type of closure.  

Whether you have reached this point while your child is still in-utero, hours, days, weeks, or years old, those of us who are already on this journey will become your best friends.  We have all worn a similar pair of shoes and while our children may not have the same diagnosis or the same presentation of the same disorder, we all get it in a way that others will never be able to.  No matter how far along we all may be on our own individual journeys I can assure you, we are all still grieving at various times and even if we look put together, we continue to take our turns falling apart.  

While I wish I could offer you a way to heal your now broken heart, that my friend will only come with time and in ways you aren't capable of grasping today.  Today is the beginning of your new journey, please try to wade through the waters slowly, and at your own pace.  The waves will come crashing at you and you may feel like you are drowning, be sure to grasp onto that life line even if it leaves just your nose and mouth out of the water.  Take deep slow breaths and remind yourself that nothing has changed since the moment you were actually told there was a reason for what your child has been going through.

My new friend, what I want you to know is that no matter how much time continues to pass from this day the emotions will remain raw and triggering moments will catch you off guard and always when you least expect them to do so.  You will welcome new parents into this club more than you would prefer, and each time it will be a moment mixed with excitement and sadness.  You will want to tell them everything you have learned since you first stood in their place, but you will remember back to that exact time and you will take a deep breath and just tell them to contact you when they are ready. 

One of the most important lessons I have been taught on this journey is that some things we all have to learn on our own and at our own pace, but eventually we all learn it.  There is no right or wrong way to sift through the cobwebs you have found yourself tangled in, so find a good circle of support, grab multiple boxes of tissues, and tell yourself that you will survive, it will not be easy, but "the greater your storm, the brighter the rainbow" - original author unknown.

Sincerely, 
A mom to a child who was diagnosed 3 years 4 months, and 11 days ago




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Monday, August 20, 2018

Lost

On Sam's and my first date the discussion of the number of children came up.  We were "laying it all on the table" from the start, limiting the amount of potential surprises I suppose.  We both said between 4-6, however, if Sam had his way it would be enough to complete a full hockey team lineup.  Ironically, my one stipulation was that I wanted as many as possible before I was in my mid thirties with the reasoning that the older I got, there was a "higher chance" of having a child with a disability.  I will just insert that perplexed face emoji here and take a moment to pause. 

After our first daughter was born she of course became the center of our universe.  I was so shocked when I quickly became pregnant with our 2nd when she was only 8 months old.  We vowed from the beginning to make sure we carved out "dates" with her and ensure she always felt special.  Towards the end of my 2nd pregnancy we learned that her brother was going to be born with a heart defect, but we would have to wait until he was born to learn specifics and severity.  I honestly do not remember if I feared the logistics of how we would manage because soon enough he was born.  He spent a blink of time in the NICU and thankfully he required (and still continues to require) minimal medical needs.  With just the two of them, I was always so proud we were able to continue with our individual dates for her and then soon our son as well.

Throughout pregnancy #3 I was so nervous about how we would manage our sanity and being outnumbered, forget about that inidividual date time with each child.  When our daughter was born it was overwhelming, but we somehow managed again to fit in our special dates.  I felt so proud that we were continuing to make it all work.  When we became pregnant with Sonzee, while I was nervous about a 4th child in general, I was not especially concerned about making sure we would each have our dates, because we had kept making it work.  And then...

Life happened.

I am unsure where exactly it happened, but all of a sudden "we need to plan a date with [insert child's name here]" became something that continuously needed to be scheduled to happen, but was not actually happening.  We were doing our best to squeeze in a date here and there after each child's respective after school activity and utilizing organizations that provide tickets for us to take our other children to, however, somehow over the past year our oldest has managed to fall through the cracks.  Her love for dance disappeared close to 18 months ago and so our built in alone time vanished just the same.  Her oldest sibling mentality and personality in general led us to the false belief that she was fine

Recently I noticed a shift in her behavior and after mentioning it to Sam he agreed.  We decided last week instead of a Sam and Randi date night we would invite our daughter along.  We kept it a surprise and at last minute told her to get dressed because she was joining us on date night.  She got dressed up and had our amazing babysitter do pigtail braids.  She chose the restaurant and away we went.  At dinner I asked her if there was anything that Sam and I could do more of or that we weren't doing at all, to which she replied, "to be honest ema, I don't mean to be not nice, but I am really missing this...going on dates.  I want more alone time".

The reality of the confirmation weighed heavily, yet knowing we stumbled upon the discovery before more time slipped away paves way to some relief.  We all know the impact of a child with medical and or special needs is heavy on the entire family unit.  We know the positive outcomes that can come from having a sibling with medical or special needs.  As a parent, one of my biggest fears is the potential resentment that my typical children could develop towards Sonzee or Sam and myself over our preferential treatment of her needs.  It can be easy to forget that it isn't just Sonzee, Sam or myself that loses pieces of themselves during this special needs journey.  I know what it is like to parent a child with significant disabilities and am simultaneously learning how to parent the siblings of said child.  However, fortunately, but unfortunately for my children, I am left saying and thinking "I can only imagine what it must be like to be a sibling to a child with a profound disability". and so I hope none of my kids become lost.

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Tuesday, August 14, 2018

Napkins


During dinners during the week we make sure that we ask our kids a couple of questions about their day or week that will elicit more than a yes/no response.  They have become so accustomed to this tradition that if a couple of minutes go by during Taco Tuesday or Meatless Monday one or more of them will excitedly announce they are going to answer first.  While in New York I came across a brand of napkins that advertised their napkins were "conversation starters", and after a quick glance at the examples they were placed excitedly into the cart.

During one of our most recent meals one of our children received "Swap Day...Who would you switch with and why?"  A sideways lip and squinted eye along with "hmmmmm" was hummed while the answer was being thought over when another child said
"I know who I wouldn't want to be....I wouldn't want to be Sonzee, because she is missing her CDKL5 and it is sad"
I cannot remember Sam nor my exact reaction, but I do recall saying that I agreed it is really sad.  To be honest the statement did not catch me off guard, nor did it make me upset.  In hindsight if anything is sadder than that purely innocently stated truth, it was the fact that Sonzee was sitting by the table with us and there was not a look of hurt or even awareness that this conversation was occurring mere inches from her.

Last night I attended an event with an amazing speaker who touched briefly on the subject of grief in regards to child loss and infertility.  She mentioned that you can have children and grieve that you do not have more, that you can grieve that you became a parent but maybe not following the path you had envisioned, that you can feel grateful for the family you do have while mourning the family you might have planned.  Her words so perfectly spoken, I am sure resonated with every person in the room despite their individual circumstance.  For me, there were multiple times during her discussion I pushed away the tears that filled by eyes. A few times because I did not realize I had buried a lot of the emotions from our entire "becoming parents" journey, other times because I have never really thought to grieve over the miscarriage we experienced after Sonzee, and mainly because of the grief I have yet to settle within my heart over our family not turning out at all how I dreamed.

I never expected nor wished to have a child with a profound disability and I certainly never wanted any of my children to experience parts of the childhood they have had to, nor inevitably will.  However, I am beyond grateful they are learning one of life's most valuable lessons, that life is not fair, and it is how they handle the situation that is important.  They are learning to cope with challenges that will surely enrich them and at the very least enhance how they grow.  What I cannot adequately express is how thankful I am for their openness, innocence, honesty, and vulnerability.  In addition, the gratitude I have towards the creators of these conversational napkins should not go unrecognized because sometimes you need a prompt to a safe place to let your true feelings be known.


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Tuesday, August 7, 2018

Firsts

Yesterday was Sonzee's first day of the 2018-2019 school year.  Since she does not wear a uniform she of course was wearing an adorable "first day of school" outfit, complete with a rhinestone centered hair bow.  She took her first day of school picture in front of the chalkboard wall in the playroom and when it came time, she was escorted by an entourage into her classroom.  Since she attends school with her same at home nurses, I am left with little to no anxiety about the process.  We found her cubby, placed her items inside, explained to her teacher the stationary note I will send to school daily to keep her updated on how things were after the previous school day and the current morning before school, gave Sonzee a kiss, and off we went.

I walked down Utah Dr (which is the street in her building that her classroom is on) while I saw and heard the sounds of a more "typical" drop off experience.  Children sad to see their family members leaving, parents quickly running out in hopes that it would make it easier for the distraction to begin so their child would calm down, and me too preoccupied to give anything a second thought, while trying to hurdle the other kids I had with me out of the building so we could get to our next checklist item.

Due to every school day this week being a half day, a mere 2 hours and 45 min later, with the entourage in tow, we went excitedly to hear all about Sonzee's first day.  Maybe it was because of how wonderful things were last year during school, I did not give any thought to the possibility that her day would or could go any other way besides perfect for her.  I honestly do not know why with all of discomfort, cries, and pain she has been experiencing at home, I assumed that being away from home and back in school would make her magically better.  I do not know why I was taken off guard when her nurse told me how miserable she was and how she wishes something would work for her because she cannot spend her days like this.  I know all of this.  We have been living it all summer.  We have lived this so many times before.  


Last night as I sat thinking about Sonzee's first day of school I was brought back to a position of frustration.  Frustration that yet again, another first for her has to be tainted.  Frustration that another day for her was spent in pain and that we are failing her by having no answers or giving her any relief.  Frustration that this has become our normal.  Frustration that whatever band aid we do provide will likely result in more pain in a different way.   There is not winning and no matter how much normalcy we attempt to provide for her, it is nearly impossible for her to just experience a first. 

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Friday, August 3, 2018

Chasing

She’s out on the corner trying to catch a glimpse
Nothing’s making sense
She’s been chasing an answer
A sign lost in the abyss, this Metropolis

It has been a little over 2 years since we first and last dealt with Sonzee's GI issues.  We have never really gotten a clear answer as to what is going on besides CDKL5, and the bandaids we have used always seem to fall off.  It has never sat well with me, but after searching in and out of state and with multiple professionals, "You are doing amazing with making the best out of a less than ideal situation" has always been how we have ended nearly every discussion on the topic.  Maybe that phrase is supposed to make me feel better over what little bit I feel we have been able to do to comfort her?  Maybe it is supposed to make me actually believe we have and are doing everything we can for her?  Maybe.

Here we are two years later, no better off, but not for any lack of trying.  If only that made our current situation any different.  We will be having another care conference, and for some reason I feel the same way I did on March 15, 2015 before I realized we were going to live a real-life nightmare.  Finding myself completely caught off guard despite knowing deep in my gut what the situation is.  No idea what I expect to happen but knowing something must happen.  Praying I am wrong while hoping the situation will just fix itself all on its own despite history proving repeatedly that will not be the case.  There is a heavy rock sitting in the pit of my stomach leaving me unsure what best/right choice will lift it and wondering about unanswerable questions.

I will never understand why our Sonzee must suffer the way she does.  I will never stop praying for the suffering to end, despite where that leaves me on this journey.  I will continue to tell myself and attempt to believe there is some real significant meaningful purpose behind all that she has to endure and hope one day it will be visibly revealed and that the bitterness inside me has not eaten me alive by that point.  


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