Monday, December 31, 2018

2018

I am sitting here at 12:34am on December 31, 2018, and wondering how another calendar year is coming to a close.  I looked back on my other New Years Eve posts and they all convey the inner conflict with wondering how another year has flown by as fast but has gone just as slow.  This year, however, I feel as if I couldn't quite keep up with all of the changes.  It seems like 2018 was a year with the most change, with the most ups and downs, and filled with the most uncertainty.  Without sounding as defeated as I feel, I feel 2018 was the year that I realized there really are some things that are impossible to overcome.  It isn't to say that 2018 was the year I gave up, but more the year I realized some things just need to be set free.

2018 was the year of more hospitalizations than 2017, with the longest one being 22 days.  It was the year she experienced her first ambulance ride and the year she experienced her first status epilepticus event due to a 2-hour long seizure.  It was the year I felt like my disappointment towards CDKL5 as an entity grew leaps and bounds due to the limitations this lack of protein has caused for her body.  In 2018 her overall health was all over the place and it is hard to make heads or tails of what if anything it might mean for what could potentially be in store for us.

In 2018 we added a new Endocrinologist to her already lengthy list of doctors.  It was the year we found out she had 5 active fractures at one time and they weren't from anything someone did to her.  It was the year she was diagnosed with having osteoporosis and having the bones of a 90-year-old woman.  It was also the year we were attempting to strengthen her physical capabilities and were left with a beautiful gait trainer sitting in the garage with her brand new only worn twice AFOs sitting on the handlebars due to her inability to weight bear because of her still unhealed wedge compression fracture on her spine.  2018 was the year we agreed for her to have a bisphosphonate infusion in the hopes it would help improve her bone strength, but instead, she is sadly still experiencing the side effects. 

2018 was the year she was granted the ability for her to be in her happy place more often than not by being gifted her very own swim spa in our backyard by Make a Wish.  It was the first year we participated in Make a Wish's "Walk for Wishes" and raised $2,000 for them.  It was the year we donated a wagon to Phoenix Children's Hospital and had a license plate placed with CDKL5 so we can continue to raise awareness of a growing but still rare community needing research to help those who are impacted.

In 2018 we learned Sonzee's CVI score fell tremendously; a score that is known to not waiver, yet she has suffered so many seizures, had so many medication changes, and experienced so much over the year that it is not so surprising that her vision would be negatively impacted.  She wore her glasses regularly and patched various amounts throughout the year.

2018 was not her smiliest year, but it was during the year that her smile came back when I wasn't sure we would ever see her real ones again. It was the year she went ice skating, started school for the very first time, and went to Dutch Wonderland in PA. 

In 2018 we had to start venting her stomach 24/7 as she was unable to tolerate even her own stomach acid.  She tried botox in her pylorus in hopes of helping with her motility.  She trialed multiple GI medications, and it was also the year that we finally demanded we do something more to address her GI pain.  2018 was the year she began TPN for an undetermined amount of time.  It was after 3 weeks her GI system appeared to thank us for the assistance and for making that decision.

During 2018, Sonzee went through (and failed) an additional four seizure medications.  It was the year we broke our rule of not having her take more than two seizure medications simultaneously and she ended the year on four.  It was the year we tried CBD (again) and maybe this time it will help her!?

2018 was a year that for some reason hit me down really hard.  It was a year that I feel drained what little hope I might have had, yet attempted to restore it in bits and pieces in various ways.  It was the year I feel took a huge toll on my psyche, my anxiety, and my spirit.  2018 was a really tough year in a lot of ways and it is a year I am ready to close the chapter of.  Moving into the next chapter of 2019 with CDKL5 by our side is a fearful prospect because we really don't know if it will make 2018 and all the years prior look like a huge blessing.  It is a gamble we have no choice but to make, and one I will take with a fake smile on my face in hopes that the days of 2019 will be kind to our little bear and make it become real. 

While I am apprehensive to see what lies ahead for Sonya's Story in the new chapter of 2019, I am also eager for the potential.  I am hopeful that 2019 will grace us with some semblance of calmness and be kind to us among whatever chaos is thrown our way.  I am hesitantly looking forward to the blank pages that lay before us and pray that only happiness, joy, and positive reporting will fill the next 365 pages.

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Friday, December 28, 2018

Adjustments

Every time Sonzee goes inpatient it always takes time for us all to readjust to being home.  The first day is usually filled with equal amounts of excitement and stress.  Excitement because of the obvious, and stress because life at home has been literally going with enough to get by and hospital life has had me missing so much of what has gone on at home that blending the two worlds usually results in the inevitable first night "Randi tantrum".  It is usually filled with everything a three year old would be giddy with excitement over witnessing, and everything a mother would be cringing her teeth over; but I would hate to disappoint either.

Overall I really do honor the motto "do not sweat the small stuff", but after coming back into real life pretty much all of the small stuff turns into insurmountable stuff; including but certainly not limited to items on the counter that have literally been sitting in the same spot for three weeks, laundry in the washing machine but the machine not turned on, and or toys sitting out or put in the wrong location.  I can feel the tension building up inside as 100 bags that have been accumulated from the hospital as if we went on a vacation and hit the gift shop spider web sit on the floor taunting me.  The kids are of course rambunctious and wanting to release their energy by either arguing with one another or playing with the least appropriate indoor toy.  I am exhausted and completely overwhelmed with everything, and then after walking by the filled but not running washing machine, or item sitting in the same spot, like a branch on a tree, I just snap.

They are certainly not my finest parenting/wife moments, and I hate that they happen, but sometimes Sonzee isn't the only fragile one in the house.  There are so many adjustments that come from each of her hospitalizations and it isn't like there is any easying into the situation.  It is like being thrown into the middle of the ocean where there are only sharks swimming around and you have watched a couple videos of people swimming but have never received any actual swimming lessons.  The fear of drowning, being eaten alive, or whatever else you haven't even considered is at the forefront of your mind.  You have no way of knowing the outcome or if the information you have learned will make any difference, all you can do is just close your eyes and pray you make it through.

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Monday, December 24, 2018

The Nutcracker

When my oldest daughter turned three a tradition was started for her to attend the Nutcracker ballet.  When our 2nd daughter turned three, she joined in the tradition.  I debated for awhile what I would do when Sonzee turned three, would I take her as well? Afterall she did turn three, and that is the only rule.  Would she like it?  Could she see it?  Would the music be too loud or the lights too bright?  I had so many questions and thoughts running in my mind, but ultimately I called up the theatre and bought her a wheelchair accessible seat; Sonzee would be attending her first Nutcracker.

As I sit here, in room 8129, my heart is hurting, and for so many reasons.  The majority of the rooms at PCH have their green lights on ready to welcome their new occupant.  There are literally three nurses on the floor when typically there are six or seven.  Sunday nights are normally my nights at home, but for a couple of reasons that didn't occur.  I miss being home, I miss what I don't even know I am missing, and I miss normal. 

Ultimately tonight I am a mixture of sadness and anger.  I like to think that overall my attitude towards life with a medically complex child thanks to a mutation within a gene that occured during a "fluke", what should have been, routine situation, is pretty positive, upbeat, (sarcastic) and "go with the flow".  For the most part I ride with the waves, take what comes our way and always try to make lemonade out of lemons.  I have handled the fact that the majority of typical children milestones will not happen for Sonzee, im fact I let it go the majority of the time.  I try to let it slide that Sonzee should be in preschool at the same school her siblings and cousins go to and she should be on the playground during recess with both of her cousins, because she is in between both of them gradewise.  I deal with the fact that my other 4 children are acustomed to and seemingly okay with the fact that I am not there every morning before school, after they get home, or to give them a kiss goodnight.  Those things are okay.  They are just part of our normal.  But what I am having difficulty with is the fact that within our new normal accomodations are made, plans and schedules adjusted, there is room for "life happens", and yet today has come and what should have been her first time seeing the Nutcracker will instead be spent in room 8129 for the 20th night. 

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Sunday, December 23, 2018

Details

Last Monday I took Sonzee's oldest sister to a doctors appointment at one of PCH's specialty clinics.  They are scattered all throughout Phoenix and I tend to take whatever is first available, so I drive all over the valley.  It was when I typed in the directions into maps and the blue pin popped onto the screen that I knew exactly where this one was located.  It's the one specialty clinic I have managed to avoid since April 16, 2015.

I cancelled the directions, because I knew exactly how to get there.  Every time I am on the 101 going west I do a quick glance out the window as I drive past, almost as if it is a nod of respect.  Yet in 3.5 years I have never walked back through the doors.  The entire drive there I was hoping my emotions would be in check.  After we parked and walked in I was surprised how unrecognizable it was to me.  There were no flashbacks in my mind of waiting in the lobby, no visions of where we sat or which door we walked through.  I couldn't remember if the room we were sitting in was the same room where the printed and highlighted research report along with 2 sheets of paper were handed to us.

I would have thought all of the details of the day would have stuck with me, but all my memories have a blurred background.  I remember the conversation we had with her doctor verbatim and I remember getting into the car and doing the exact thing she had warned against.  I remember every detail of the drive home and the first person I said things to do at my daughter's dance class that evening when she asked how the appointment went.  I remember the next morning when I could hardly get out of bed, and my mom telling me "time is of the essence", that I needed to get up, make phone calls, and do everything I could.

Little did we know that no matter how much effort was poured into our research of CDKL5, or how many therapies we would enroll her into, or how much money we spent on every alternative option provided, or how many second opinions we would get for treating her various symptoms, the outcome wouldn't be any different.  While the genetic mutation written on those pieces of paper certainly does not define her, it does set forth incredible limitations that even the most well intentioned, sadly, cannot overcome.

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Thursday, December 20, 2018

Restrictions

When we first came to the hospital at the beginning of December I was excited and a little surprised when they said the kids could still visit the room.  The past two weeks we have been enjoying the ability to have the kids see Sonzee whenever they pleased, for me to see the kids nearly daily, and for us to all have dinner together on occasion.  After a walk downstairs on Tuesday one of the main greeters told me she had bad news and she wanted me to know because she knows the kids come every day and she didn't want us to be surprised on Thursday.  

Visitor restrictions went into effect yesterday at 8pm.  For those unfamiliar with that term it means no children under the age of 12, including siblings can visit inpatient rooms, nor can they be in the main floor lobby (unless they themselves have an appointment).  What it means to many families in a similar situation is that the already challenging balance of making sure you were doing your best to keep the "family unit" a thing is now nearly impossible because you have to go outside to the round-a-bout to see your other children and they now cannot see their sister.  It is a safeguard and in all honesty I appreciate the limitation of exposure of all the illnesses floating around all of Phoenix, however, it does make an already difficult situation more depressing.

I was able to attend my older children's honor roll breakfast, spend the day with Sonzee's little brother today, and surprise the kids at school pickup.  Sam and I did our visitor restriction routine, and exchanged pleasantries and a quick hug in the round-a-bout knowing Sonzee was left unattended during that brief period.  We are used to this game, and honestly I think we have perfected our system, but gosh it really adds an extra dose of emotions.  Hoping we don't have to stay too much longer and can manage to stay out until restrictions are lifted in April/May.


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Monday, December 17, 2018

Rafting

10 years and 3.5 months ago while Sam and I were on our honeymoon we went white water rafting in New Zealand.  It was my first (and last) time ever setting foot inside an inflated flotation device holding onto a oar and wearing a life vest.  I remember the (short) training we underwent prior to getting in the raft and for some reason we were chosen (maybe Sam volunteered) to be in the front.  Sam was ecstatic, I was not.  Immediately after we began the course I felt completely unprepared, and I fully regretted the decision to accommodate his adventurous side.  About 5 minutes in after our first wall of water rolled over my head I was done.  I was scared to death, I had just swallowed water, I saw my life flash before my eyes, and I wanted nothing more than to get out of the raft.  I looked over at Sam who was having the time of his life and who at first didn't notice the tears streaming down my face because of all of the water; and then I told him "I want to get off", to which he replied "this isn't a ride Randi, you can't just get off".

These past 13 days I have been learning everything I never knew I wanted to know about a central line, and specifically a port.  The last time Sonzee was on TPN she had a PICC line and for some reason, maybe it was because she never went home with it, or because I knew much less, I do not remember it being as scary.  Every time I wake up throughout the night I check her cords and the needle.  In the morning I do the same and sit in bed with her, careful of the lines, but completely fine; by the afternoon when we do her daily CHG wipe down, change her clothing and sheets my brain remembers she is leaving the hospital with everything on her body, and by the time the new TPN/Lipids are brought into the room the panic begins to set in.  As soon as the bag starts to get primed my body goes into a full blown panic attack, and all I can think of is my experience on the raft and all I want to do is scream to the nurses to remove the port, tell her doctor to stop the TPN, and run out of the hospital.

I cannot stop thinking of every way these items could potentially kill her.  Changing the tubing connector leaves an unfiltered opening directly to her heart, bubbles not removed from the tubing appropriately can cause air to get into her vein, bacteria not cleaned from her skin or accidentally transferred from the tubing or the nurses, or myself can cause an infection and lead to sepsis.  What if all of this does not even help with her GI issues?  What if she just suffers from a potential consequence of the we have to try?  What if this ends up being the worst choice?  I remember our first consultation with her surgeon almost a year ago when he went through the lists of risks and then said "but just know, when it comes time and you make whatever decision you make, just remember that even if something happens it doesn't mean it was because of your decision".  Those words played in my mind so many times as we made our final decision to move forward, and maybe I even told myself they made sense, that they are rational words, and I believed them.  Yet, for some reason now that we are living this reality I already feel such a heavy weighted guilt over where this could potentially take her journey.

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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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Sonzee's Slideshow