Tuesday, March 19, 2019


From the very beginning of Sonzee's life, Sam and I have always been very open with her siblings about everything going on.  It would have been extremely challenging to not be when from the start I did not come home the first week after she was born because the hospital allowed me to stay in an unused portion of the maternity ward while she remained in the NICU.  Then just a few weeks later we found ourselves taking Sonzee to the pediatric hospital where her seizures were confirmed.  The hospital staff made an adorable epilepsy bear, complete with the EEG leads, gauze, and colored string so that our then 5-year-old, 4-year-old, and 21.5-month-old would not be scared to see her when they came to visit.  We did our best to answer their questions in age-appropriate ways and when they left us stumped or after I winged an answer, I would refer to child life to help me out and or let me know if I answered them appropriately.

During one of Sonzee's lengthy stays when she was 15 months old, her oldest sister did not want to visit her.  We respected her decision but always gave her the option every day.  It is a tough place to be as a parent because there is a fine line of reality and the black and white fact that any of the hospitalizations could be one way.  I was so worried that Sonzee was not going to leave and then her sister (who is extremely close to her) would feel this unnecessary guilt for not visiting.  But how exactly do you explain to a young child that her sister might not leave the hospital without causing nightmares and unnecessary fears?  When you become a parent, who even thinks of this under their list of top 10 potential parenting dilemmas?

As Sonzee has gotten older, the hospitalizations have become so routine, her siblings get disappointed, more than anything else, that the family will be split until she returns home.  They do not really understand or grasp the severity of what us taking Sonzee into the ER really means.  I think I am okay with that in general, after all, her siblings are now only 9, 7, 5, and 1, they should remain children as LONG as they can be, as long as every other child does.  But their life is not like that of every other child, there are just sad realities that come with this life.  Even though our children see Sonzee's daily struggles and know there are children "like Sonzee" who have passed away and have even met siblings of those children, they are still very much children, and still very much innocent.

There is a part of me that is relieved this is the case, and then there is a part of me that hurts because at some point in their lives it will make reality more heartbreaking.  On Sunday my oldest son asked how Sonzee would give herself medicine when she is older.  I let him know that she would not be able to live alone and that someone would be doing her medicine for her.  He took a second to process what I said and then inquisitively stated, "oh, she won't?".  To which my oldest daughter happily replied that she is going to be taking care of her, and she will be living with her.   My mind simultaneously gracious at the offer seriously wondered if I wanted her to put her life aside to even take that on.  Then my middle daughter interrupted that thought to ask how Sonzee was going to have a baby, and I let her know that she would not be having a baby.  My then oldest daughter paused for a second and with a surprised reaction said, "oh she isn't? well, then how is she going to be a mom?". I took a second to process where this conversation had just gone and simply replied that she will not be able to be one and then I asked them to make sure everything was cleaned up before we headed out to afternoon activities.

I texted two of my go-to's for these types of conversations and I mentioned that what broke me more than anything is that they really do not even comprehend what the most likely reality is going to be.  I have honestly not even thought far enough ahead to have even considered Sonzee as an adult.  I know there are many parents who might disagree with my thoughts, but at least once a month I post a prayer request for a family who has to bury their CHILD.  It is a reality that accompanies our life.  Whether I say it aloud or not, it does not change the facts of Sonzee being medically complex and that her body is unable to function in a typical fashion.  Yet, to be brutally honest, the most challenging part of this reality for me to wrap my mind around, is how this eventual inevitable outcome will affect my other children.  

The Mighty Contributor

Friday, March 15, 2019

Butterfly Effect

While I don't regret any decision that we have made for Sonzee, I do often wonder how a different one could have maybe, possibly, affected her presentation with CDKL5.  Deep down I know that really the impact of severity lies mainly in how the mutation itself blends within her body, but it doesn't stop me wondering about "what if".  The challenge I have with "what if" is far back do I go?  Where exactly does my one small change begin? 

While the obvious choice would seem to go back to around the time her mutation occurred, for this specific exercise it isn't the ideal choice.  I need her to have the mutation in order for me to let this alternative "choose your adventure" book to unfold.  With the intention clearly outlined I would go back to our headstrong desire to wean Topamax.  The drug that we understood only afterward was also referred to as "dope-a-max".  The drug that we also learned mid-wean in some children can actually keep the brain activity clear of hypsarrthymia.  The one diagnosis we prayed she would never receive because that would mean she fell victim to x-linked dominant infantile spasm syndrome-2.  That diagnosis was listed on the right side column of her genetic report that I had specifically asked her doctor if that meant she would have.  The one that her doctor replied to with, "I would like to think not", and yet, we knew she had at least 50% chance of developing due to the fact that CDKL5 is an early infantile epileptic encephalopathy-2. 

Had we never weaned Topamax would her EEG background never have developed into hypsarrythmia?  So many spirals down the rabbit hole came from that one diagnosis.  Would she have gained more skills vs the regression that we never noticed until we looked back on pictures of the skills we had forgotten she once acquired?  Alternatively, would she have never emerged from the fog that we didn't realize she was in due to that same drug? 

Even though it practically went hand in hand with the date of her last dose and when her background shifted, I suppose we could say she was bound to get hypsarrythmia regardless?  Maybe it wouldn't have mattered what we did because she was meant to be the 50% to keep the statistic what it is?  I really do not regret our decision to wean Topamax, we did the best we could with the information we had at the time, and I will chant that mantra for the rest of my life.  But I would definitely love to know if we would still have the same Sonzee and the same outcome of her EEG background with just having gone through a slightly different journey

The Mighty Contributor

Wednesday, March 13, 2019

Going back

I can remember when Sonzee was newly diagnosed and my biggest fears were of her never meeting milestones.  If you had asked the me of four years ago I would have told you that I would love for her to be sitting at a year, but realistically it would probably happen closer to three and maybe even not until she was five.  I told myself I wanted her to crawl before she walked because it was clearly a developmentally necessary milestone for typical children.  If you spoke to me in person during her first year of life I was more preoccupied with her physical capabilities and what potential damage the antiepileptic drugs were doing to her little body that were negatively impacting her physical progress.

Recently someone asked me if Sonzee was more alert than she was as a baby? If I felt that her early exposure to water therapy and physical therapy made a difference.  It was one of those times that I responded and felt sorry that my answer was not going to be offering the traditional hope this parent was seeking.  I know one day they too will come to a point in their child's journey where a sense of calmness over the outcome will blanket them and my response will feel more of a comfort than a slap across the face.  I wanted to give more with my response, but I knew it wasn't the right time, so I just stuck with the facts and "cushioned" it with Sonzee is more severely affected by her mutation.

I wish I could sugar coat the journey of CDKL5 for those who are just now starting out.  I wish I could go back to the me of four years ago and stand in front of the teary-eyed mom wondering where we would be four years from now and let her know that the journey is going to be hell and the line items of priorities are going to take her by surprise.  I wish I could tell her to not waste those precious first years worrying about whether Sonzee was going to sit, crawl, or walk.  I wish I could tell her that she is going to be faced with actual life or death situations and it won't matter if she is sitting or walking when the real serious choices are being made.  I wish I could warn her that what she is about to endure will leave more holes in her heart then she will ever be able to close.  I would let her know that her views on people and situations will change but she will find a safety zone where she can say and feel what is on her mind and know she is truly not being judged.  I wish I could go back to the me of four years ago and tell her that she better buckle up, because this roller coaster is going off the track, and it doesn't matter if Sonzee is sitting on her own on the floor or being fully supported in a 5 point harness...just be grateful for every day she is still sitting next to you.

The Mighty Contributor

Thursday, March 7, 2019

Empty horse

Last week one of the organizations we are part of sent out an e-mail about Legoland and Sealife aquarium tickets for yesterday.  I mentioned to Sam about it and asked him if it would be doable with our son's hockey schedule.  He said it would be too close with the times, but he would take him on a date to the Coyote's game that was happening Tuesday and I could take the girls.  Since Wednesday's are one of the days I work we already have a babysitter in the house for our youngest.  Perfect.  Done.

When I registered the girls and myself I hovered over Sonzee's name, debating in my mind whether I should bring her as well.  After all, it was a girls date.  Then my mind said, "Randi, she will hang out with nurse Karen, it is a big girls date."  I still felt a little bit of guilt, but that spot that resides in the bottom of my stomach during situations like this knew it was best for her to stay at home.  It is where she is most comfortable, it is where she will enjoy herself, it is where she would rather be.  Right?  Am I making that up?  Are those actual facts?  I can rationalize anything, you are talking to the person who justifies her daily lattes by saying the milk counts as necessary proteins.  So am I just telling myself things to make myself feel better for not choosing to bring her?

As we went on the first ride together I was feeling confident with my decision.  The choice was shortly confirmed as the girls were running all around the play area, knowing Sonzee would just be sitting in her wheelchair breathing in an almost certain trip to the ER.  We went to see a 3D movie and I was silently patting myself on the back at this point for making this a big girl date.  While we were walking around the girls mentioned that it was a girls date so we were missing Sonzee, but I reassured them she was having fun at home and it was a big girls date. We then went over to the aquarium where the girls played in the touch tank and crawled into the glass bubble domes to stand up and look at the fish from different angles.  This was definitely a "mom win" in my book of decisions, surely Sonzee was having a much better time at home in her P-Pod.

To close out the evening we ate our dinner that we brought to the food court to make the date official, and the girls asked to go on the Merry-Go-Round.  That is when the unexpected punch came out of nowhere...or was it just waiting in hiding for the right moment?  The girls each picked a horse separated by one bunny eared horse in the middle.  It took one rotation for me to feel the whiplash. I wonder what made them not choose that horse and sandwich it in?  This picture doesn't do the reality justice, if you look closely you can see the ears at the back of Sonzee's older sister in the blue shirt; I took at least six pictures to try and catch the moment.  The big girls truly in the moment enjoying their date, the rare non-traditional horse sitting empty between them both.  The empty horse that should have had an occupant.  The empty horse that to others would just be another empty horse like every other unoccupied horse yet really holds a place for a sister that won't ever get to experience the big girl dates, the childhood joy of a merry-go-round, and what it is like to just be a kid.  The empty horse flashing me forward into an inevitable future physical reality and grounding me in the current factual but justified reality of what is best for her.

The Mighty Contributor

Friday, March 1, 2019

CDKL5 Family

Yesterday was Rare disease day and one of Sonzee's CDKL5 sibling's mother created this amazing slide show of some of our kiddos.  I saw it posted in the afternoon on our parent page, but did not watch it.  I saw I was tagged in something on my wall in the evening, and when I saw it was the video I decided to wait until later on to sit down and watch it.  I knew from the minute I hit play that it was going to be something that would cause tears to well up in my eyes.  To begin with, I have zero ability to control any of my emotions at night, I am beyond exhausted to the point where my eyes actually hurt and can hardly remain open, and it is just what happens to me when it comes to slide shows.  At 10:23pm I decided to press play and let me tell you, my intuition about the tears was spot on, and as I listened to the lyrics paired with all of the pictures, I had such chills run through my body.

She could not have picked a better song to accompany the faces of our beautiful children and to solidify how we have become a family simply because our children brought each and every one of us together.  We have others who "get us", who "understand" on a level that honestly no one else possibly can, and who are there for us on days we need to randomly vent about insurance, celebrate the inchstones, or cry with during the more devastating and challenging times. 

The day Sonzee received her diagnosis I went to the Internet and reached out to anyone that popped up in the search results of "CDKL5".  We were given a 5 character string that answered the easy questions, the why she wasn't developing typically or why she was seizing.  But the real questions were answered and are still being answered by the parents of the faces in the video.  The same day we were given a piece of a paper that said "CDKL5" was also the day we were given an entire extended family.  There is a connection between us all that has no adequate words to give it justice and no matter where any of our children's stories take us, I hope every parent with a child diagnosed with CDKL5 knows to "Just stay strong, cause you know I'm here for you."

The Mighty Contributor

Thursday, February 28, 2019

CDKL5 Rare

I sat at my computer last night trying to figure out what I wanted to convey today being that it is Rare Disease Day.  According to Merriam-Webster, rare is an adjective that means "seldom occurring, or found: uncommon; marked by unusual quality, merit, or appeal: distinctive; Superlative or extreme of its kind. Then the quote by Dr. Seuss popped into my mind, "why fit in when you were born to stand out" and the thoughts in my mind began to get jumbled and that feeling that tends to reside in my heart was a little more noticeable.  

In 2004 the CDKL5 gene was first identified, and it was originally known as STK9.  By 2015, the year we began this whole excursion down this funfilled path of what it means to be rare, there were approximately 600-1000 children diagnosed worldwide with a CDKL5 mutation.    At that time it was a brand new baby in terms of scientific studying.  Information regarding the prevalence and occurrence was hard to come by.  Research and another 4 years has led to more awareness and more diagnosed children.  Although rare, the occurrence is believed to be ~1:40,000 -60,000 live births, making it one of the most common forms of genetic epilepsy.  Currently, there are two children diagnosed with CDKL5 each week.

I need to take a moment myself to swallow that statistic.  That means this week there are two more seemingly healthy babies who will begin seizing before they are officially considered developmentally behind for not presenting with a social smile.  That means there are two more sets of families who will have their entire world flipped upside down in a way they are never going to fully ever comprehend.  That means this week two more families will find themselves on an unknown journey that they never even knew was a possibility to embark on.  That means our CDKL5 family is growing, but it also means that eventually, that is another family that will one day have to face a life without their precious child.

What exactly does it mean to be rare? It means to me as a parent there is a responsibility to try and make this statistic look a little different in another 4 years.  It means that we need to continue to raise awareness and get more potential life-altering remedies so that these two children who are diagnosed each week will begin to hear the words, "your child has CDKL5, BUT this is what we can do to help".  It means that we need to spread awareness so that ALL the children currently living with CDKL5 are given the BEST QUALITY OF LIFE POSSIBLE.  It means that we need to spread awareness so those children with CDKL5 mutations whose bodies had suffered too many seizures among other difficulties did not leave this world in vain.  

So today, for all of the children diagnosed with CDKL5 and for those who will be tomorrow, show you care, and spread what you know about rare...who knows, maybe one day (soon) we will look back on this moment in 2019 "when CDKL5 was once known as rare".

The Mighty Contributor

Monday, February 25, 2019

Keep on moving

3 years 5 months and 11 days ago Sam and I made the "controversial" decision to start our then 7-month-old baby Sonzee on her first dose of CBD oil.  I remember giving her the oil via a dropper into her mouth under her tongue a couple of times a day, and especially while she slept.  I remember the fear of dosing her incorrectly, the initial skepticism over whether it would work, and the curiosity of whether it would actually work for her.  I remember being cautiously optimistic, but at the same time, there was a very large part of me waiting behind the scenes to pull the cord that sent the room into a full-blown celebration when it would be the answer, HER answer.  I remember the initial feeling of defeat when that was not the outcome, HER outcome.

Over the course of 2 years, she would try multiple brands of oils, pastes, and types.  After each unsuccessful attempt, we were hit with mixed emotions.  Was it the brands we were choosing? Was it the dosing?  Was it the type?  Was it an allergy to the carrier oil/base? We felt disappointed because we felt surrounded by so many success stories, why couldn't she be one of them?  In my dreams, I planned on purchasing a billboard to join the bandwagon of spreading how medical marijuana was medicine, how it really does work, and how much better it is than pharmaceuticals.  Yet every time we found ourselves let down, trying to rationalize why it didn't work.  Then someone would share their success with another brand and we would talk ourselves into trying it again.

For the majority of 2018 we said we were done with any CBD oil, but then Epidiolex came to the market.  The jury was inconsistent even among kiddos with CDKL5, but it seemed again the vast majority who were on the trials had amazing success, so naturally we had to try itThe day the FDA approved doctors for prescribing Epdiolex was the day Sonzee's epileptologist wrote the script.  With eagerness and anticipation, she too was curious and excited to see how Sonzee would do, we were her first patient to finally get it and start it in December.  As usual, I didn't allow my mind to run too far off into the land of CDKL5 miracles, but I definitely put more than one egg into the basket.  Which is why my heart is hurting and feeling a heavy-weight as we are in the process of weaning what was her "hail mary".

I wish I could convey in words to those of you not parenting a child with refractory epilepsy exactly how it feels to know there is absolutely nothing you can give your child that will ever stop her seizures.  I wish I could express the heavy-weight mixed with airlessness that resides in my chest over the fact that nothing will ever work, but yet we are incapable of not trying more cocktails, more useless combinations of pharmaceuticals, or potential new hail mary's that will pop up along the way.  I wish I could adequately explain the pain and suffocation that never goes away because as long as she is alive she is suffering multiple times a day for 10+ minutes each time and there is nothing we can do for herNothing exists to correct the awfulness that ONE little misspelling on ONE gene has caused.

Sadly, our chapter with CBD is coming to an end.  Part of me doesn't want to believe that, and the other part of me says "just let it go."  It has nothing to do with her age, with the brand, with the dosing, with type, and/or with the base.  It is just like every other epileptic medicine (natural or not) that works for some and doesn't for others.  Even though we have been down this path before with so many medications, breaking up doesn't get any easier.  We will eventually get over this loss, it will take us some time for us to allow ourselves to believe something out there will work.  But eventually the disappointment won't feel as fresh and the optimism (while never as high as it once started) will slowly build its way back up, and no matter how many more times we will inevitably find ourselves traveling down the same exact path, we will do it with a smile. Because, as Albert Einstein said, "Life is like riding a bicycle.  To keep your balance you must keep moving."

The Mighty Contributor

Monday, February 18, 2019


On Sunday morning I spent 15 minutes reordering Sonzee’s monthly medications via a pharmacy recording system.  I have the prompts memorized so the entire experience is actually a minute or two less than for those who might have to wait for the guidance of “press 1”, “press #”, “press 2”, etc. This didn’t include the specialty care pharmacy we use to get Sonzee’s Epidiolex, that phone call takes 15 minutes itself to review the same information I literally give every time I call, but for some reason, I’m required to repeat.  After I ordered her medication, I then spent 15 minutes administering her morning medications, another 10 minutes were spent turning off her TPN and caring for her central line, 20 minutes were spent getting her dressed, and 15 minutes were spent making her food for the day, setting up new bags, and turning on her pump.  Getting Sonzee up and ready takes on average a good solid hour every morning.  It is ok, it is just our norm.

On weekdays we have a nurse to help with getting her things ready and together for the day, but honestly, a lot of what is done for her is comparable to weekly meal prep.  I prepackage baggies of different items to make things “simpler”, but I’m honestly not so sure it really does that...it just makes the actual time spent at that moment “less”, but the time is being spent at some point.  She has her linens on her bed changed every 24 hours because of her central line, any blanket or item that comes in contact with her at any point throughout the day is washed.  Then there are also the psychological considerations of those who might potentially come in contact with her or a family member with "an allergy", "just a cough or cold", or a pain medicated masked illness.  Maybe it might be considered overly cautious, but we are talking about literally life or death if any form of bacteria (G-d forbid) enters into her central line.  I honestly do not even really realize anymore how much time is collectively spent thinking about and or performing Sonzee tasks, as they tend to just blend in with the day.  Sometimes it feels like every moment is spent dealing with a doctors office, pharmacy, therapist, her personal care in general, etc.  This is not a complaint, it is just what comes with the territory.

Someone recently commented (not in a negative manner) that I don’t get out because I “have 5 children”...that is honestly not the reality.  It really has very little to do with having 5 children and more to do with having one medically complex child, who honestly equals more work than my (thankfully) healthy 4 other children combined.  When it comes time to me considering taking "me time", the sheer thought of that concept alone is honestly exhausting.  I just do not have it in me physically, emotionally, or on any level to even think about doing something, much less actually follow through with doing it.  I know, I am supposed to "care for myself", it would be good for me to socialize, but honestly, I do not have the energy or really desire to find the time, plan an activity, and actually follow through with said activity. 

It is really something that most do not understand, and thankfully do not have to.  I am sure there are moms of medically complex kiddos who have the energy to be super-moms in every capacity, but this medically complex mom is absolutely drained.  I use up every ounce of my energy and patience parenting all my children, kind of caring about how the house looks (I use the term "kind of" extremely loosely these days, yet there was once a time that I cared a lot), and trying to keep a meaningful smile on my face.  I realize unless you live a life similar to ours, it is impossible to grasp just how much the complexities stem from just her, and I would love for it to remain that way for you.  But just know that my outward "anti-social" demeanor and purposeful isolation are not because I wish for it to be that way, it is just how it has to be for a long list of reasons that those of you who do not know of, will hopefully remain forever blissfully unaware.

The Mighty Contributor

Monday, February 11, 2019

Dear Sonzee (3)

Dear Sonzee,

Today marks 4 years since we first met.  Besides your sister who we planned to meet really early, you came into this world earlier than we had psychologically planned for.  Your father had me convinced you were going to be another boy and with my history of being wrong 100%, I didn't even argue.  I  even stupidly went so far as to think, "we will have the perfect family; two boys, and two girls".  Honestly, I did not even entertain the possibility you would be a girl until two weeks prior to your actual arrival, I had a mini panic attack wondering how three girls would share one bedroom, but then reminded myself there was "no way" you were going to be a girl.  Bubbie was the only one who knew, but she kept that a well-kept secret and made you your baby blanket with a matching hat and bow.  She bought all of the items I had flagged in the "if baby Z is a girl" Etsy store.  In hindsight, I would have picked a different color yarn for your blanket and spent more time carefully choosing outfits and bows.

Nothing about your arrival was expected or planned.  By the time I was in triage and you were born it was a whopping 40 minutes and your doctor couldn't get there quick enough, he missed the entire thing, and two nurses argued over who was going to catch you, while you decided you weren't waiting for either and the next thing I knew I had you in my arms.  I knew from the first moment "something wasn't right".  To be honest, the nagging pit in my stomach anxious feeling has never left over the last 4 years, it just becomes muffled every once and a while.  The constant worrying, panic, tear-filled moments over what is best for you have never left either, and none of it has gotten any easier.

I have shared in your three older siblings celebrating this milestone and the achievements that have brought you to today are ones they thankfully have never had to endure and I apologize that you must.  I am so sorry you are celebrating today being carried from various pieces of equipment by your father, myself, and nurse Karen.  I am so sorry that we might accidentally place your body in a position that could ultimately lead to another fracture for you.  I am so sorry you are unable to run excitedly out of your room to see your gifts on the counter.  I am so sorry that your gifts have to be signs, pillow cases, pacifiers, pacifier clips, and clothing versus the latest trending four-year-old hot commodity.  I am sorry we will not be celebrating you with a party of your favorite characters, and I am so incredibly sorry I have no idea who they might even be.

I am sorry you have spent 6+ weeks total since September 16 sleeping in a bed on the eighth floor of Phoenix Children's Hospital, and it breaks my heart that undoubtedly you will spend many more during this upcoming year.  I am sorry that you have spent so many minutes this past week seizing and in pain or sleeping due to those seizures.  I wish my prayers and begging would have at some point over these past four years changed any of what you endure on a daily basis.  I am sorry that our love for you has not changed any of how your story has unfolded or will continue to do so.  I wish and pray that we could do something more for you.

My dear Sonzee bear I hope you know if it had ever been up to me alone, I would have done whatever was asked of me to ensure this was NOT the lottery you would win.  I hope you know how much your siblings love you and pray for you to not have to deal with the sad parts of having a CDKL5 mutation.  I hope you know that we all live for your smile and moments of happiness and contentedness.  I hope you know that we treasure every moment you share with us and while not the ideal lessons of parenthood I would have asked for, I thank you for them all. 

And so as you turn 4 and enter into your next year, my wish for you is that this is your best year ahead.  One that will be filled with your fewest seizures and least hospitalizations.  Your most smiles and endless moments of laughter.  A year that you will feel less pain and suffer less.  I pray that this year we solve more problems while creating fewer (or no) new ones and that you will only experience positive gains.  I hope you will cry fewer tears and that your bones will strengthen, and that you will continue with more sassy days.  I hope that your personality continues to shine through and that we learn to help you to communicate so we are better able to be there for you in the capacity that you actually want and need. What I really want to give you for your 4th birthday is a cure to this madness, but since that is not a possibility what I am offering to you is an unFOURgettable year ahead. 

Love always,

The Mighty Contributor

Friday, February 8, 2019


For once I just wanted to be able to place the blame on something other than CDKL5.  I really felt it was time for once in her life to get an ACTUAL real answer versus "it is due to xyz because of all things related to CDKL5, but not directly a symptom of CDKL5".  Would the answer have given us anything more concrete to work with?  In my mind, yes.  Reality?  I suppose we won't ever know.  It is amazing what happens when your child has a broad diagnosis; everyone spends more time blaming every other specialist, never taking any ownership over the symptom, deferring out the responsibility of treatment to someone else who feels it isn't really their problem and then nothing changes and no one helps.

Maybe a new diagnosis would not have given her any better treatment, but I felt like it would have doctors actually tell us if we should or should not be pushing her to weight bear to help her bones improve.  Maybe they would give us a game plan for ways to protect her?  I feel like we have essentially been left out in the cold.  Any answers come after asking the same unanswered questions 15 times and then it is as if they are doing us a huge favor by giving us a reply.  I have no idea what to do to help her.

This is a quick snapshot of "explanations" being given to us (and then my thoughts):

Her weakened bones and fractures are due to lack of weight bearing.  When she weight bears she fractures a bone.
Her fractures are due to severe osteopenia from being non ambulatory.  We cannot get her to be ambulatory because when we try she fractures a bone.
Speak to Endocrinology for best ways to manage osteopenia and her weakened bones.  We did, she's on supplements and she had an infusion that caused such negative effects to her I never want to put her through it again.
Her weakened bones are due to seizure medications. NOT THE ONES SHE IS TAKING, and guess what, she won't be coming off of those any time during her life.
Her weakened bones are due to lack of nutrition.  She now has greatly improved nutrition.
Her weakened bones are due to GI medications.  If she had been on them for 30 years.
Her weakened bones and fractures are due to CDKL5.  Not according to the CDKL5 guru.

What do we do for her?  We have already padded her bed, her activity chairs, her wheelchair, and anywhere she is placed.  She has done weight bearing one time since September and it resulted in a new fracture.  She has been sitting in a cube chair at school, could that have caused compression fractures T5 and T6?  Every time we explore a new avenue for her, her body lets her down.  This is almost worse than watching her endure daily seizures.  Or maybe in another almost 4 years, I will be used to it just the same?

The Mighty Contributor

Tuesday, February 5, 2019

In six days

For three weeks every year, my kids are all "two years apart".  I can respond to the how old are your kids?  question with an even response; and these past three weeks it has been "1, 3, 5, 7, and 9".  The birthday that changes things up occurs in 7 days and the honor is given to Sonzee.  In one week my "toddler" becomes a "preschooler", by age and in theory, but not in our reality.  So this birthday is one I meet with an "inner conflict" for lack of a better term.

Four years old.  Another birthday we are beyond grateful for her to celebrate.  Another birthday we are beyond torn on what she would want to have happen.  Four is that first year where kids are excited about a theme and make specific requests.  Maybe it would be Elsa/Anna, Minnie, or My little pony?  I find the task of determining what she really wants to be daunting, overwhelming, and quite honestly suffocating.  It is another birthday we cannot offer her even a taste of cake or she will suffer.  It is another birthday she does not get to celebrate like a "typical Sonzee" would.  Her gifts are all needs based because honestly how many light up/musical switch adapted toys can one girl have that end up sitting on the shelf?!

In six days I will decorate her door with streamers and wake her up by singing "Happy Birthday".  The "new and improved Sonzee" will smirk ear to ear with all of the doting and attention.  She will give us her adorable crooked smiles and hopefully have a day filled with more time awake than spent seizing.  She will hopefully know the day is a day we are honoring her and when her port needle is removed Tuesday we will have a family pool party in her honor in her swim spa after school.  In 6 days it will be February 11, and while 4 years ago on that day I had no idea we would have embarked on this journey, it will be another February 11 that I will be thankful we are getting to spend with her here.

The Mighty Contributor

Friday, February 1, 2019


After April 16, 2015, I never anticipated that we would ever have a question again as to the "cause" of Sonzee's symptoms.  That was the day we were given a summary for her life.  It was the reason for her uncontrollable seizures, her "eyes doing weird things", her cortical vision impairment, and all of her developmental delays.  8 months later it was the reason for her failure to thrive, for the need to get a g-tube, for her to start the ketogenic diet, and for the hypsarrhythmia found in her EEG background. 13 months from that original April date it was the reason for why her stomach just stopped working and why she needed TPN for the first time.  Despite always searching for various answers for her different presentations of GI issues and never needing to search further for the reasons behind her atrocious seizures, CDKL5 has always been our answer...

Until it wasn't.

In September after Sonzee received her personal gait trainer and began to practice more weight bearing we learned she had 5 fractures all in various stages of healing.  I considered every possible cause, but ultimately CDKL5 received the blame.  There are a handful of kiddos who have a CDKL5 diagnosis who also require extensive bone monitoring and supplements, so like her severe presentation of GI issues, I just considered her to have been impacted more in the area of her bone health.  Honestly, besides blaming the formula she is on, it makes perfect sense to place the burden of this on CDKL5.  She is non-ambulatory, she has severe seizures, and she has osteopenia, of course, it could be CDKL5.  Not one of her doctors felt there was any other explanation, so I let it go.

It wasn't until her most recent fracture within the last two weeks and multiple private messages from followers that a voice of doubt began to get louder in my mind.  It doesn't make sense, (my guess is) 95% of kiddos diagnosed with CDKL5 are non-ambulatory, the majority are non-weight bearing, the same percentage if not more have atrocious seizures, it just doesn't make sense!  How did she get a compression fracture when she cannot even sit? How did she get a buckle fracture in her right ankle when she hasn't even put AFO's on in months?  What caused all of her fractures in September?  These are small fractures, they do not require any casting or surgery.  I decided to call the CDKL5 clinic and ask for orthopedics and endocrinology to consult when we go in 2 weeks.  I was told that they will consult with orthopedics, but this is not a CDKL5 issue and they recommend further testing.  I immediately emailed Sonzee's geneticist and explained the situation, who after hearing CDKL5 clinic recommended the testing said she had no problem starting with the sequencing panel for brittle bones.

In 2015 when genetic testing was offered to "find the cause of Sonzee's seizures", I didn't understand what that truly meant.  I have always been thankful that we didn't have to spend years of her life wondering "why" she was the way she was, but I feel like it has prevented us from seeing clearly.  I don't know how I am supposed to be feeling right now, but it is a mixture of hope for a clear cut answer, of sadness over what that answer is likely to reveal, and fear over what it will mean for her.  The days before we were told CDKL5 I said I needed an answer, and as long as we had one I could deal with it.  I feel like I am at that point again...I need an answer and we will deal with whatever it is.

"As long as one keeps searching, the answers come"-Joan Baez

The Mighty Contributor

Monday, January 28, 2019

Controversial: Thoughts I have never written on paper

I get it, trust me I do.  I get it more than a large majority of the average population and I get it on a very specific level.  Doctors are not always right.  I would say without having taken exact statistics over the past 3 years 11.5 months that being right sits around 50% for medical professionals when it comes to Sonzee.  Ironically in a lot of our personal dealings, it is usually them who are presenting the more optimistic route and sharing the more "typical".

Since day one I was the one fighting for them to look deeper into my "mom's intuition".  It was me who was begging to be heard that "something wasn't right".  I had to fight so many times until she was 4 weeks old and had video EEG proof that my baby was not part of the "babies do weird things" movement.  The journey has been exhausting from the very beginning.

We did every possible typical testing that was provided to a pregnant woman while I was pregnant.  Sam and I had done genetic testing ourselves prior to having children when we were having difficulty conceiving in the first place.  My motto the entire time was always "I would never do anything, but I NEED to know".  Sam's motto was "Since we aren't doing anything, what is the point?"

When it comes to my pregnancy with Sonzee I have reviewed the memories with a fine tooth comb.  "You have a perfectly healthy baby" the NICU team even told me during her last two days before she was discharged home.  I asked multiple times about the questionable eye movements and her shaking limbs.  I mentioned it again at her well visit appointments when she was 12 days old and again around 3 weeks.  It was during week 4-5 that we learned she was having seizures.  It was during week 8 that we learned she was diagnosed with CDKL5.  It has been 3 years 11 months and 18 days since we have been living with the life of a child diagnosed with CDKL5.

Sure there are inchstones.  YES, we make the best lemonade there is to offer.   Are there amazing teachable moments that our family has experienced?  100%.  Will my children grow up "more compassionate, more loving, more understanding?"  Sure, and maybe it will have been because of Sonzee, but maybe it would have happened regardless?  We are part of an elite club, one that we are so thankful there actually is, but one I personally wish I never knew even existed.  I wish my other children would not have to know the harsh realities of what life with a medically complex and disabled child really means.  I wish they did not have to know what it is like to see their parents come and go in the middle of the night with babysitters, neighbors, or family members running over at all hours of the night while their parents and sister leave for the hospital.  I wish my children didn't have to see flashing lights outside their house or be comforted by the amazing team as their sister was being loaded into the back of an ambulance.  I wish my children didn't have strangers come into their home every day who they know by "nurse xyz" and who they are used to seeing.  I wish I lived more nights at home than I have at 1919 E Thomas Road on the 8th floor.

Sam and I never knew while I was pregnant what CDKL5 was or would mean.  We could never have fathomed what life would have looked like.  Even if a doctor had told us that string of characters and we would have googled we probably would have relied on the extremely rare minority of children who are physically much more able than Sonzee.  Maybe we would have prayed and felt that G-d was giving us what we could handle.  Maybe we would have felt hope that the test was wrong and that the doctors did not know what they were talking about.  Maybe we would have decided to live the same life we currently are.

The unknown becoming your reality taints your world.  There is only so much heartache you can ask yourself to take when it comes to literally watching your child suffer.  I can rationalize her smirks and occasional happier demeanor to meaning her life is content, and that she "doesn't know any differently".  The reality is she seizes multiple times a day, for minutes on ends, every single day of her life.  The reality is she is unable to hold her head up well, to sit unassisted, to walk, to see clearly.  She is unable to take care of herself by herself and no matter what potential genetic modifier comes her way, she most likely never will.  She will never be able to use her voice or really explain to me what is hurting her or how she is feeling.  She won't ever go on a date, get married and have children.  She will never be a typical and functioning member of society.

When Sam and I are faced with difficult decisions, I asked both of us one question, "Do you want to live the life she is living?"

I know there are stories of children thriving after a doctor told their parents they never would, but there are also children who are not.  There are parents who were faced with a horrible situation and they made a choice to say "yes, I want to live the life no matter how difficult it may be".  Then there are parents who made the choice not to live that life.  To those parents, I do not judge you.   No one should be judging you.  Your decision to take the baby you longed for and choose not to let suffer should not be looked down upon.  To the parents who didn't get offered a choice and are not living up to the challenges presented and maybe they are living up to them but feel they can't do this, or do not want to do this, I assure you, you aren't alone, and you should not be being judged.

Before we had Sonzee I would personally not have an abortion, but I never judged anyone who would.  After having Sonzee, with both pregnancies, I needed to know if the baby would have CDKL5 or any similar disorder.  I didn't know in certain terms what we would do if the testing revealed he/she did have the diagnosis.  What I did know is that after raising Sonzee, and watching her have to endure what she does on a daily basis, I would find it selfish for me to allow that life for another child.

Medical professionals are not perfect, they are mom's and dad's, they are just ordinary people who wake up every day and go to work and do the best they can.  They are presenting the facts the best that they know how with the information they have at that moment in their hands.  You have a right to disagree with them, you also have a right to agree, and no one should tell you which answer is right for you.  Maybe you could call me weak, awful, or non-inspirational from this point forward, but really there is no room for judgment even if you live this life, even if you made a choice one way or another.

I love Sonzee with my entire being, as much as I do my other children, as much as any mother can love a child, but I would never wish her another moment of pain or potential suffering and I would never wish the life of having a CDKL5 mutation on another child.

The Mighty Contributor

Monday, January 21, 2019


At night I tend to relax by scrolling mindlessly through facebook.  I do not understand why I have always been a magnet for seeing what feels like 50% of my feed being awareness/prayer warrior pages for children, yet I find it impossible to escape it.  Prior to Sonzee, I was hit hard in particular by three children who ended up passing away.  After Sonzee's diagnosis, I had to start to separate our reality from others, because it was honestly way too much to carry on my shoulders.  It is not that I care any less about the children being shared, but my heart and mind understand the situations in an entirely different manner now, and the words "I cannot imagine" have turned into "I get it" or "I soon will".  Even when the diagnoses do not align perfectly, the situations faced living with a child who has a life-limiting or terminal diagnosis overlap in some way, shape, or form.  It brings the feeling of suffocation to an entirely different level.

Last night two different posts popped up on my screen, back to back, neither giving me a chance to catch my breath.  Two little babies lost their battles with their respective medical complications.  Two families shattered into pieces.  The specifics of the situations different, the outcome the same.  My heart is left broken for them, and I do not have any first-hand experience with this yet.  No one goes into parenting volunteering for the position either, I wish I knew how those who are gifted the fate were chosen.  I wish (I am sure like anyone else) I knew what I could do to avoid it.  Rationally I know there is absolutely nothing, and I tell myself "it can happen to anyone", but we all know the odds, in this case, are more so in our favor.

So many stories I followed involved rare diagnoses, ironic that we are living out our own journey of rare.  It absolutely breaks my heart that so many of us are living rare.  It definitely makes it feel much less rare.  I have certainly learned that statistics really don't mean much once you become one.  I have also learned that you have to keep putting one foot in front of the other and just living each day as it comes because anything can happen.  Things can go from stable to critical in seconds. Things can bounce back to completely fine in a matter of minutes.  The curve balls keep being thrown, and the bat keeps having to be swung.  The rare life isn't so different than our life from before.  We still have no idea what is going to happen, how, when, or why...the only difference is that we can tell ourselves we get to prepare.

The Mighty Contributor

Thursday, January 17, 2019


When Sonzee’s oldest sister began Kindergarten I wrote a blog post wondering what it would be like when it would be Sonzee’s turn to do the same.  I have this constant inner battle trying to emotionally prepare for future scenarios such as that while trying to protect myself from the possibility that another scenario could take its place.  This past week has been birthday week at our house again.  Today is the day before Sonzee’s oldest sister turns 9.  A birthday that is a milestone simply because it is the LAST single digit birthday she will ever celebrate.  A thought I honestly probably never would have considered if it weren’t for Sonzee.

As I was getting ready to take a shower, abandoning the idea of writing a blog post, the post began to write itself.  What chapter will Sonya’s Story be on 5 years from now,  What will have unfolded in the days, weeks, months, and years between now and then.  Will I be in a state of shock that we would be 3 weeks from a celebration I was fairly doubtful would occur?  Or will I be mentally preparing for the day in a completely different manner?

There are situations that parents should never ever have to consider, fates they should never have to entertain, obstacles that should never need to be overcome.  There are realities parents should never have to face, yet unfortunately so many have to.  When you are faced in such a slimy predicament, the most difficult part is allowing yourself to dream of the less “expected” outcome becoming the reality.  It is telling yourself that maybe, just maybe things will work out differently than you can allow yourself to anticipate.  It is trying to convince yourself that it is OK to think positive because you might actually not get hurt doing so.

Living life with a medically complex and fragile child is working really hard at playing devils advocate in the opposite manner and challenging yourself to believe that your child could defy unknown odds.  What I personally find the absolutely hardest thing to process when it comes to mentally “preparing” is overcoming the notion that no matter how many wars we win, ultimately, at some point in time, the unsugar coated reality of this type of life means that we will lose the battle...it is just a matter of when...so while we wait for “when”, I have to sometimes require myself to celebrate all the nows.

The Mighty Contributor

Monday, January 14, 2019


We were able to get away this weekend and have a much needed and anticipated break.  I use the term "break" lightly because really no matter where we go, or how much of a relaxing environment we find ourselves in, or how beautiful the scenery, we really cannot just "take a break" from having a child who is complete 24/7 care.  The distraction of being in a different location sort of helps to redirect our attention, but there is no forgetting or really even pausing of the life we are living.  It does, however, give our family a different experience and allows for other opportunities for us all to bond and for our kids to maybe feel that their lives are not just about their sister.

I really did my best to be entirely in the moment the whole time we were away.  There, of course, was the relocation of our home mini hospital, alarm reminders for medications, time spent making and starting/stopping her j-feeds, TPN preparation and infusion, machines beeping, daily seizures, middle of the night seizures, and naturally, middle of the night alarms ringing.  These parts of our life don't just get to be put on hold because we want to venture to the snow, but they are a small price to pay for being able to do just that with Sonzee.  The memories we made will stay with all of us forever, and we all had the "best time ever".

I have not lived in snowy conditions for 29.5 years and maybe I am crazy, but being out in the snow brought such a level of happiness to my soul.  Maybe it is because I was only a child when we moved that the thought of being in the snow brings me utter excitement?  I don't have negative memories of shoveling snow or scraping away ice on a car windshield.  I don't remember if there were struggles getting in and out of the car in snow gear.  I remember weekend ski trips and having fun with shovels in the front yard of our house.  Maybe it is because I was just a young child with no cares in the world and winter was my happy place that I have this pull and desire to spend as much time as possible in a winter wonderland?

There is this beauty in the fact that white flakes fall from a darkened sky and erase any evidence of what happened the day before.  The ground after even only a few hours creates a fresh canvas, allowing something brand new to unfold; a new story to be told.  The view is always beautiful and breathtaking.  The perfect picture painting of the contrast of life that is so apparent.  Mountains covered by clouds, but with green pine trees visible holding the weight of pounds of white snow.  House roofs covered in even sheets of white, dirt ground hidden, wildlife easily visible if they are out.  It really is just a miraculous thing to see.  While the outside imagery doesn't do much if anything to change what goes on behind the windows you may be viewing from, it gives you the opportunity to take a moment to reflect on the potential that could be, even if its brief, and even if its quickly erased, because you never know if something even more beautiful will present itself tomorrow.

The Mighty Contributor

Wednesday, January 9, 2019


Over the past 3 years and almost 11 months I have experienced a lot of internal emotions.  At the beginning, it was much easier to keep things bottled inside.  Her seizures didn't happen during the day for the first year or so of her life.  I didn't have to have conversations about her, because most people weren't aware that anything was going on.  I was more outwardly private starting out on this journey.  I have never liked to wear my emotions on my sleeves and I had not experienced enough to lose my ability to keep my emotions together.  I was a completely different person than the person I am now.

I am unsure if it is good or bad, but my ability to keep my emotions in check has lessened and lessened.  There are days if I am looked at the wrong way I get tears in my eyes.  If a song plays on the radio that strikes a cord, my eyes become watery.  If things are feeling overwhelming and someone says the "wrong" thing my patience runs thin, and I really, really, really have zero patience for stupidity.

It is amazing to me the amount of adrenaline that can course through a persons veins, accumulating, just waiting for the perfect moment to make you completely erupt, and trust me, you really do need to get it all out.  However, you are never quite sure when the moment will happen that you will become old faithful.  But at some point all of the emotions, all of the anxiety compounded with the entire weight of life will come together and form the perfect storm. 

And then one day, you may find yourself sitting at a table with a group of friends, listening to a semi heated conversation, not knowing if you should be laughing or crying at the exchange that is going on.  You won't be aware of the fact that you are holding your breath during the entire exchange.  Suddenly it becomes obvious your hands are shaking and that you aren't sure if air is moving in or out of your lungs.  You will accept the fact that you have no control over anything that is going on and you know you are having trouble catching your breath.  You will start to laugh and cry simultaneously while trying to actually breathe, and focusing on it will only make you more overwhelmed.  You might feel semi embarrassed that everything is occuring in public but at the same time, the space feels safe and small and you are thankful and relieved that you are finally letting every little thing out.

And in that moment you realize that it is not just about what is going on at that moment.  You subconsciously realize you are in a safe space, with people who care about you and who are there for you.  They may not fully be able to comprehend the situation you are in, but they are still ready, willing, and always there by your side in some way shape or form during this insane journey, over and over again, no matter how much of history repeats or how often.  And after things begin to calm down, and the entire show in all of its glory comes to a close, you now know who to call that the next time you need to have that months long buildup release get out of your system so you can start to mentally heal.  

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Monday, January 7, 2019

Life isn't...

I can't seem to shake the words Sonzee's GI doctor said to us during one of our visits over the past year when we were debating putting her on gut rest.  The words keep taunting me, popping up during every diaper change, every time we put the thermometer into her ear, every time we pick her up and carry her, during every transition, every time we get her dressed, and really every time she moves.  During and for at least 1-5 minutes after each and every one of those previously mentioned activities she screams out loud and cries hysterically while her body trembles and shakes. 

"I don't know if it will help, because her body will find something else to interpret as pain".

I keep telling myself but for two weeks she was perfectly happy.  It was only after we did the infusion for her bones that the proverbial avalanche started.  The one that we still cannot seem to get to the bottom of.  Was it just a trigger?  Will the pain eventually dissipate?  Did we just divert the pain but not really solve anything?  Is this just a small bump in the road on the path to recovery, or is this going to be her new norm?  Did we not only lose the happy bear we were so beyond excited to meet and get to know but instead make things worse for her?  Did we just spend 22 days inpatient for nothing?  Did we introduce a vessel of potential bacteria that could kill her for nothing? 

How much longer will this last?  Why does every good intention end with a huge lump in the back of my throat and tears in my eyes?  Why does she always have to suffer at our expense?  I want to just fall to my knees and scream, we are just trying to help her, WHY??? why is it another thing?! Why can't she be given a break?!?  Just once I would like a decision we make on her behalf to actually help her and not cause a secondary backlash.  Was it the solution to the gut pain?  Was this going to occur despite the "GI pain distraction/elimination" no matter when we did the bone infusion? If not the bone infusion would it have been something else? 

Sadly, I have played this game before.  We have been here so many times I only wish I was numb to it.  I know that we won't ever receive any answers to any of the above questions.  We will simply have to let time give us some cryptic answer that won't be straightforward and will likely only come from us having to make another educated guess.  Life isn't always perfect.  Life isn't always easy, and life certainly does not always make sense.

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Friday, January 4, 2019

Best of your todays

From the time Sonzee was a little baby Sam has always said that my happiness directly correlates to how she is doing overall.  When we find ourselves in a time period where we are walking on "Sonzee eggshells" in terms of her response to whatever discomfort she is experiencing it is difficult for my attitude and overall demeanor to not be a mirror.  When she has a bad seizure day, a challenging GI day, or is just not up to much, the reflection in me is clear.  I have become a master at hiding my outward appearances, but a good portion of the time, I do not have the energy to shelve the reality.  On the flip side, when she is having a great day, you might as well call me Burt from Mary Poppins when he is doing the penguin dance.

As a parent its in our nature to want only what is best for our children.  We want them to first and foremost to be happy, once that occurs everything else seems to fall into place.  For those of you who think, wonder, or say "I can't imagine how you do it" when it comes to the situations we are faced with, it is beyond words for me to properly convey what it is like to constantly watch your child go through setback after setback when the starting point isn't even that great, to begin with.  Happiness is unfortunately not as simple as it seems to be with our typical children, and it is exhausting on many levels to try to make things even just tolerable for her. 

There are definitely moments throughout the day, albeit sometimes they flicker similar to that of a lightning bug, where a smile appears across her face.  Sometimes it is actually purposeful versus the ones that are simply a precursor for seizure activity.  Occasionally she will smirk in response to a statement made to her and it is actually voluntary.  There are times that catch us off guard with her reciprocal social participation.  It is during these times and moments that I feel like a charging battery.  Each little event gives me enough energy to continue pushing through.  It's in these little moments that everything is worth it.  Despite finishing our days on average with less of the positive it is in those sparks of positivity that fill my dreams of hope, and leave me saying to her "and may the best of your todays be the worst of your tomorrows".

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Wednesday, January 2, 2019

Have it all

These last few weeks have been filled with a lot of steps forward mixed with a couple of punches to the gut.  It is so hard to make it through the punches when they come during a period of positive times that was prayed for but unexpected.  Expectations are just not something I allow myself to have any more.  No matter how many times I have told myself they are as low as low can go, an untamed piece of me gets loose and dreams up something lofty and completely unattainable and then I am left falling much harder, faster, and lower than I should be when the expectation "falls short".  So I do my best to stay away from making any sort of positive predictions. However, when something unexpectedly positive and amazing occurs and I start to believe it really is becoming our reality and then a negative wave is thrown our way, well it just about feels like I have been thrown off a boat tied to an anchor.

If you follow Sonya's Story on facebook then you probably saw that Sonzee was afforded the opportunity to meet Jason Mraz during her most recent hospitalization.  It was one of those surreal moments that you really cannot even process as it is happening.  An experience like that is not just uplifting to the children who are really the reason us parents are able to be there.  It was really hard to sit through his explanations of why he wrote some of the songs as well as listening to him singing in a room of children, who for those 30 minutes had a distraction from whatever they were enduring, without tears welling up in my eyes.  Every song will take me back to that moment and no matter where Sonya's story takes us, Jason Mraz is going to be in the back of my mind singing me through it.  

Despite the ups and downs that Sonzee faced throughout December, we saw her experience a type of happiness we have not seen from her in a long time, if really ever.  For two straight weeks, she was majority smiles and smirks.  She was visibly comfortable and she was enjoying her days.  In a more typical Sonzee twist, we saw that happiness stripped away within a moment and it has now been 10 days and it has not fully returned. While we do not know when or if she will get to experience those two weeks of December again, we wish that she may only "know the meaning of the word happiness" and that she will be able to have it all.

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