March 16, 2015

Since 2015 the month of March has always been a difficult one.  I am pretty sure over the 5 March's Sonzee lived she was hospitalized at least one week out of March every year, and the dates overlapped 3 or 4 of those times.  I dislike the month of March in general, but this afternoon into the evening my body started to feel different.  This is definitely one of those things that is hard to explain, but anyone who has experienced a trauma of some sort in their lives can most probably relate.  Something started to nag at me, I couldn't place it.  I was feeling extra anxious, extra weight in my chest, and while it makes zero sense when I start to get my antsy anxiety I drink a cup of coffee. (Don't worry, it is 10:45pm and I opted for decaf, and yes I know the caffeine isn't helpful for anxiety, now moving on).  I made one of my fancier concoctions of coffee and sat down at my computer knowing I was feeling something Sonzee-related, but not quite sure what. Then as I normally do when I am feeling on the edge, I went to google photos and typed the date, March 16.  I realized quickly why my body was on edge.

March 16, 2015.  The official date that life forever changed.  The first night I would spend staying up all night and into the next morning not sleeping while waiting in the Phoenix Children's Hospital ER.  The night that I decided on my own that I had to trust my gut, the gut everyone else was telling me was just being neurotic.  The first night I recorded a seizure, not even really certain that was what it was, but yet knowing in the recesses of my soul that was exactly what those movements were that Sonzee had been doing.  March 16, 2015, was the night I called the after-hours line for the pediatrician's office and flatly told them I would be taking Sonzee to the ER because she had her second seizure.  They told me to call an ambulance. I told them that felt excessive. Since Sam wasn't home I called my neighbor instead. March 16, 2015, we sat in the overflow area of the old PCH ER during cold and flu season, with a brand new baby who was unvaccinated.  I was panicking. March 16, 2015, was the night I didn't understand how a newborn baby seizing wasn't the highest priority child in the ER, the rest of her life would teach me that.  

It is amazing to me how the body remembers but the mind can move the memories to a hidden bookshelf. 7 years ago today, around this time exactly I took a maybe 7lb little baby to the hospital with a video of her shaking in tow not even thinking further than someone was going to confirm my suspicions, tell me she was seizing, and send us home.  I honestly to this day do not know what I thought was going to happen, but I didn't even pack a hospital bag, (rookie mistake). 7 years ago today I can still feel all the feelings I felt. 7 years ago today I can remember the sites and sounds of that ER.  7 years ago today I could tell you the words spoken to every nurse and doctor. 7 years ago today as she seized again I mentioned to the ER nurse how horrible it was to watch her seize and she responded with "you'll get used to it". 7 years ago today I wanted to punch her in the face, but never thought to ask her how she knew that.  7 years ago today and I know how much that statement is true, eventually, sadly, I did get used to seeing them, but I never got used to not wanting to cry watching her having them. 

March 16, 2015, a day that marked the beginning of a story that wouldn't last more than 4 years 11 months, and 23 days, but also the beginning of reliving the trauma of those 4 years 11 months, and 23 days for my forever. 

To the newly diagnosed parent of a child with a rare disorder

To the newly diagnosed parent of a child with a rare disorder,

I have debated on what to say to you or your family member as you join our support page because the reality is that you are currently seeking something to keep you continue breathing as you are embarking on this journey.  You are wanting a lifeline, you are wanting something tangible, something to actually grab a hold of, you are simply wanting some hope.  That is fair, we all do when we start on this journey.  We search into the depths of every orifice as the journey begins to unfold and we struggle to regain our grounding as life slowly begins to move forward.  I have to warn you about the hope you seek because that word itself will take on various meanings and forms throughout this journey, and I feel it is only fair to warn you, that sometimes, hope ends up being a crapshoot.

Despite what you are considering the potential worst-case to be, the reality is, as you begin this journey you are unable to truly grasp what that even is.  The worst-case will morph along this journey.  You will find yourself thinking at various points that this is it, this is the worst-case, but I can assure you, it can always get worse, and at times, it actually will.  What I can also tell you is that there will always be some sort of lift to help you out of the worst-case cavern you will find yourself in.  Sometimes you will be stuck there for far longer than you anticipated, sometimes you won't even realize you were there until it is over, and at some point, when the real worst-case hits, you will find that you simply have to learn to just sit inside it for some time.  It is just a part of life, and as much as we want to pretend these types of situations don't exist, the reality is, they do.

Despite the potential worst-cases, I implore you to not don't spend your time fixating on what they might end up being.  There are so many amazing cases that you didn't know could even exist that you will also encounter.  What your family has just embarked on is a journey with an ever changing situation and ever-changing emotions, and it is a roller coaster to say the least.  As you all learn to tackle the ups the downs all you can really do is ride the waves with an open mind and open heart, and understand that your life has forever been changed, but you will find a way to survive, even if at times it is simply by taking a deep breath.

From, 
The bereaved mom of a child who was newly diagnosed 5 years ago.

Owls

Dear Sonzee,

I am sitting here with you amongst this time of social distancing, while I don’t think you could be any further from me, this is the closest I can get. I keep seeing all of your friends' parents changing their Facebook profile badge to the one that says “Your only is my everything” and ironically it pains me that I cannot do that.  I wonder what I would have said to myself 5 years ago today when you had your first EEG had I known where I would find myself today.

A week and a half ago I saw an owl in the tree across the way from you. I took so many videos and pictures because I have never seen an owl in real life in a tree so close, I also was not sure aba would believe me if I just told him about it. There happened to be a funeral going on at the time and I wondered if this person had any relationship to owls.  Minus an owl dress and a pair of pajamas we never really coined you an owl girl.  I went home and while working on your room, I came across a picture that Laeya made for you.  I am unsure when she drew it, but there is a bird saying feel better to two owls sitting on a branch in a tree. I hung it on the wall yesterday. Today while I have been sitting here with you, Mr. owl has been hooting away.

I keep wishing you were here but at the same time I am so thankful we don’t have to worry about you being taken away from us because of a virus. That was always my worst fear. No matter what we did to try and protect you it was never enough, you always managed to get everyone’s “allergies” anyway. I couldn’t help myself and I signed into the PCH portal last night to look up your previous positive respiratory viruses. You were the queen of adenovirus/rhinovirus and you even had the HCoV-OC43 coronavirus. My heart sank to see all of your future appointments removed but I am so thankful someone took care of that for me and that no one made me have to call every office to cancel them; doing that for your feeding pump was horrible enough.

We started a grief support group last week. Sadly it has been put on hold due to social distancing, but your siblings after essentially having to force them to go are begging to go back.  It makes it worse they aren't having it right now, but I am so happy they enjoyed it.  Of course, they were each given another beanie baby and a blanket (because we don't have enough of those) but that definitely made them smile. I was hesitant to take another blanket myself, but sometimes it gets windy and chilly when I sit with you and I have already gotten to use it.  Meena and Laeya have been more openly vocal about them missing you since that first meeting. They say how much they just miss having you around. Noam has started to make it a routine now to request the book of you and him at nap time and bedtime. Tzviki is still keeping to himself, but he did share his favorite time with you was that last week when you two snuggled and told stories, I am so glad I recorded the entire event.

I am not sure if you have viewed your space from above, but after each storm, the dirt and rocks sink in.  I have been there every time and each time it manages to get worse.  The guys at the cemetery have been amazing fixing it within 24 hours, but sometimes I am quicker to visit than they are to get it back up to snuff.  Apparently tomorrow it is supposed to rain really hard all day, so Mr. Ira came out to warn me that he will have it fixed as soon as the weather permits, thankfully everyone continues to make sure they take care of you.  

I was warned that no matter what happened when you were dying that I would find myself reconsidering every decision.  I was cocky at the time so confident in our choices that I couldn't imagine that would ever be the case.  It is amazing what 6 weeks and your absence can do to my mind.  I still know we had no control over what happened, but at times my mind wanders to that land of what if.  Thankfully I have people who entertain, accept, and support my wandering but also steer me back on the path making sure I really know that we did the best for you.  It is just hard, life without you little bear is just hard.  Every little thing depending on the day is just hard, so I am trying to just focus on a day at a time.

I hope you have had an amazing 6 weeks and have made all sorts of new friends.  Hopefully, you don't have to worry about social distancing wherever you are and your days are filled with tons of swimming, eating, and whatever else it is your heart desires.  Know that we are all still surviving without you despite our broken hearts, and we all look forward to seeing you and hugging you again.

With love always,

Ema

Weird place

My newsfeed is full of memes, alerts, and pretty much all things coronavirus.   Occasionally I hit the "love" or "like" button when I see the memes comparing this outbreak to that of life with living with a medically complex child or the jokes about people buying out hand sanitizer and toilet paper.  Occasionally I get infuriated (like I have for the last 5 years) when I see news reports of disrespectful and selfish people who exhibit symptoms of an illness (despite that the main advice is to stay out of public if you have any potential symptoms) are testing positive after they have exposed thousands of other people to what turned out to be coronavirus by going out in public.  Occasionally my heart sinks when I read the posts from special needs families about how these new rules are just how those of us living with someone who is medically complex spend our lives because despite the routine, despite the familiarity of this panic, I don't have a reason to be part of it anymore.

I find myself in this weird place.  I feel like I am a stranger looking into a window of a home that once was mine, one that was so scary to live in, one that brought me to tears and ultimately heartache, but one that is familiar, brings me comfort, and has left me unable to fully move away from.  I don't have a reason to be fearful of my kids being around others who have a sniffle, but my reaction is to cringe and think negative thoughts about the parent who says "it's only allergies".  They have no idea what "those allergies" could have done to our family.  They aren't aware that there is a nose swab that can identify those sniffles and those "allergies" in 1 hour, and it doesn't matter to them that their child's "allergies" have a name.

These precautions are simply a way of life for a rare but fierce community that has lived with the fear and anxiety that so many are filled with now.  I feel sort of slighted that no one cared before.  I feel like screaming at every person running to the store buying hand sanitizer, toilet paper, soap, and every Lysol product on the shelves.  I feel so angry that the world as a whole doesn't really have any empathy for those who are most vulnerable.  What makes me even more livid are those who are STILL going out into the public with symptoms, despite the warnings.  I cannot comprehend how people have to be told to stay home when they have any symptoms.  I cannot comprehend how people are so selfish that they feel whatever reason brings them out into the public weighs more than someone's life.

Besides my fear for all of Sonzee's friends and their families, I don't have a reason to panic, but old habits die hard and tonight my heart simply hurts for those of us who have our own personal amazon locker of supplies because that was how we help to keep our children alive.  It hurts because it took a mass population to be effected for societal rules (of common sense) to be implemented.  It hurts because our family doesn't count anymore in a category that I most relate to and understand.  It hurts because I am fearful of another parent joining this horrible club due to ignorance and heartlessness. 

There is a sad sense of relief that I am no longer part of a community that requires me to personally panic, but I won't ever be able to stop advocating for common sense and for all of the family I have gained because of Sonzee.  So I beg of you, stop buying hand sanitizer, stop buying toilet paper, stop buying every disinfectant agent out there, just stop.  Long after the immediate fear and quarantine of COVID-19 has dissipated there will still be other respiratory viruses such as THE FLU, CORONAVIRUS, RHINOVIRUS, RSV, PIV1, PIV2, PIV3, ENTEROVIRUS, and ADENOVIRUS.  Odds are the majority of you never considered most of those listed above are the names for "allergies".  So, when the world returns to normal, when schools reopen and when gathers reconvene, what I implore of everyone is to simply remember the panic you feel today.  Please always remember there are families who feel this sense of panic and anxiety every day and reconsider your initial desire to leave your house with your "allergies".  

"Strength"

I dreamed of becoming a mom for as long as I can remember, and when it first happened in 2010 it was the start of something that surpassed any dreams I ever had.  I have theoretically become a mom 5 different times.  Each of my children is as individual as can be making my mommying experience equally as distinct.  From being a competitive dance mom to a hockey mom to a free spirited child mom to a special needs mom, and a slew of other descriptive titled moms in between.  I am and will always be proud of all of the different mom titles I wear, however, the one no one ever thinks they will ever earn, the one no one ever wants and yet the one that I am soon to be awarded is that of the grief-stricken bereaved mom. 

It was suggested to us that we begin to make plans at this point so that any decisions that can be, will be made in advance.  For everyone who has said "you are so strong", or "you are incredible", I hand you back those words, medals, and sashes.  Yesterday, I was not equipped with the appropriate amount of strength to get me to go "cemetery hopping".  Instead, it was my amazing sister who graciously volunteered without even being asked and Sam.  I gave my "requests" and they did their best to make sure they will come to fruition.  I say requests like these things have been sitting in my mind for a lengthy amount of time, but the truth is I didn't even know I even had them more than 24 hours ago. 

Watching my child suffer over the last 4 years 11 months and 16 days of her life has drained so much of me mentally and physically, I think my strength quota has been reached.  The last 4 years 11 months and 16 days apparently isn't going to earn me much reprieve in how the remainder of this story is going to be written.  There is not going to be any first day of kindergarten picture or any sassy turning away when she wants nothing to do with us.  There is not going to be any more "hooray for Sonzee's" or cheering over some almost met inchstone.  While I am extremely grateful we are getting to segway into this new chapter on our little bear's own terms when she is ready, everything our family has endured with her isn't earning us an alternative ending, so whatever strength might remain after all of this is said and done, I am going to need to write my own.

Just wish....

Sam's first car when we met was a 2001 Honda Accord. It was 2 door, greyish-silver, and had an Israeli flag bumper sticker on the back right side.   He was so in love with this car, although I had a different opinion.  The car had so many different issues, the timing belts needed to be changed, the spark plug wasn't doing its thing and then the radiator started to overheat.  He would try these little cheap fixes and I would tell him he was wasting his time because he was eventually going to need to get rid of it.  After we got engaged and we agreed to move to Arizona, he mentioned he was going to drive that little car 1300+ miles across the country.  I laughed so hard while I told him there was no way that his favorite car was going to make the journey.  He disagreed.

By Spring of 2008, he finally decided he should take the car to the nearest dealership, which was about 40 minutes away in Valdosta Georgia.  So together we got into the car and started to drive.  About halfway into the trip the car began to smoke.  We pulled over and the radiator (again) needed to cool off.  He was so used to "fixing" the radiator, so it came as second nature.  While I sat on the side of the road he got a ride from a nice older lady to the nearest gas station to get some water.  When he returned, he poured the water on the radiator, it cooled off and we continued on our way.  It was finally time, Sam knew it was time, he still would have rather held onto the car, but he did admit it was time, and so he let it go.

I couldn't sleep last night, and at 3am I laid starring at the ceiling when this story popped into the forefront of my mind.  So many similarities from this experience, however, instead of a car, it is our little Sonzee bear.  Her entire life we have spent trying to put putty in all the water holes that have presented themselves, albeit never fully successfully.  Eventually, you realize and accept there really is nothing that you can do to try and fix the problems.  No amount of interventions can compete with the fact that her body is telling us it is tired.  It is not in the, I need to lay down and take a nap type of presentation of tired.   But in the "I cannot regulate any of my bodily systems appropriately for things to function" manner.  It is beyond devastating and really impossible to have to accept that there really is nothing left for us to do, we really have done everything for her.  So, what is left for us to do, is to respect what her body is telling us, respect what she is communicating to us and respect this process as horribly painful as that really is.  So to summarize the only way I know how, I give honor to one of the famous quotes from Steel Magnolias, "We should handle it the best way we know how and get on with it. That's what my mind says, I just wish somebody would explain it to my heart."

Paths

Life in general with CDKL5 has always been a path filled with bumps, forks, and a multitude of signs all suggesting various ways to go, but ultimately no matter how the path is followed, the final destination will be the same.  In our house, we have two decision-makers, which means two people who despite sitting in a coffee shop on their first date laying it all out on the table discussing their individual fundamental beliefs, didn't quite get into the depths of the now relevant and extremely pertinent core discussions that have ultimately presented themselves over the last almost 5 years.  I mean in our defense, who even knows CDKL5 or unhealthy babies are even topics of considerations that exist when you are young and dating?  Who knew topics similar to "what are your viewpoints on abortion" really were benign compared to a lot of the line items that were in our unknown future?  Who knew that two people who I remember sharing the same beliefs with at one point could have completely different ideas of what "the best path" would ultimately be?  I often wonder if the experience of the actual decision making of the medically complex child path in other families is similar to how it is in our house; with two completely different viewpoints and opinions but ultimately two people wanting the best for their child while trying to honor eaches individual convictions all the while trying not to become another statistic of a failed marriage due to the additional challenges of living a medically complex life.

Ultimately, I wonder, are there really right or wrong deviations and decisions when it comes to walking the path?  I have read all these various quotes about paths and journeys.  Some suggest there are no linear ways of getting to the endpoint and that every path has multiple curves.  Others suggest no matter what the path, there is beauty in getting lost on the journey.  There is even a quote suggesting that there is no one correct path just the path that you choose.   However, the challenge in these cases is there are two you's. So which one is correct?  How do both people compromise on the journey itself when the simple concept of 50/50 means half full to one of them and half-empty to the other?  The same information presented is perceived in two entirely different ways, but supposedly, neither of them is wrong.  

I won't ever understand why it was Sonzee who was born with a mutated CDKL5 gene, or why there are many layers of complexity to her journey that have resulted in so many opportunities for us to have to be faced with not only typical married life drama, but the additional elements of how do we give our child the best quality of life while weighing our personal opinions on whether or not we perceive her as suffering and what to do or not to do if there is even anything to do about it.  In the end, I suppose there really is not a right or wrong when it comes to the journey itself, but what does seem to matter and what the biggest challenge seems to be, is being able to continue moving forward making decisions that are true to your own personal beliefs while trying to balance the fact that there is "no I in team"

The plan

I have always been a planner.  I surprise myself sometimes with my ability to continue planning, even though so many times over the last close to 5 years my planning has not yielded the same outcomes as I had anticipated.  I have learned planning is just one component and not even necessarily the most important part, it is the execution of those plans that almost weigh more than all of the preparation, and sometimes even though the plan is in plain sight and you can clearly see the words written out in front of you, your specific desire for the situation to unfold in the manner you thought, isn't always in the cards.

April 16, 2015, was the day that reality shifted, all of our parenting plans as we knew them, changed.  It was the day that I learned you could breathe but your lungs might not fill up with air.  It was the day that I learned that rare can happen to anyone and when it does, it doesn't feel very rare at all.  It was a day that time simultaneously stood still and flew by all at once.  It was the day despite being married 6.5 years already that I would first see Sam cry not because of a birth of one of our children, but because his world was crumbling around him.  There was nothing we could do but once we collected ourselves we made a new plan.

Had you asked me 4.5 years ago, I would have said the first death amongst my non-special needs framily would have been Sonzee.  The plan was Sam and I sitting shiva first because she had passed.  It was supposed to be our friends navigating how shiva worked and things to do.  I never entertained that one of my closest friends would have had to suffer the loss of her mother first, and I certainly never imagined any of Sonzee's grandparents passing first.  Logically I know that is how it is supposed to be, but that wasn't part of the current plan.  It's true you just never know what can happen, and for the last week and a half, I have been wondering why Sam's dad passed.  His soul's mission had clearly been accomplished and his purpose on earth fulfilled, yet none of us here will be privy to the real answer.  What peace I have gathered in my mind over it all is that someone needs to be waiting for Sonzee when it's her turn, and I know when her turn comes, he will be waiting with a cigarette in hand, open arms, on a bent knee and a huge smile on his face...at least that is the plan.

368 Days

On December 5, 2018, Sonzee had a checkup with her ophthalmologist at 7:45am and then we made a mad dash to admitting at PCH in order to make our check-in time for her port placement.  The surgery went quickly and thankfully uneventfully, and then later on that night she began her 2nd journey with TPN (an acronym that in short means she is getting food via a central line directly into her bloodstream).  We didn't know what to expect, we didn't know where the journey would lead.  A year ago she weighed 8lbs less and was about 5inches shorter, her GI system was exhausted, and she was in so much pain it was unbearable.

368 days have passed and it is hard to consider her without her extra tubing and hardware, yet eventually, we will probably have to do just that.  Every month the suggestion is made and Sam and I take a deep breath, swallow, and say "no".  If there is one thing I have gained on Sonzee's journey it is confidence in truly knowing that I don't need to humor anyone anymore to prove I know her best.  I know what taking her off of TPN will look like.  I know it in such a way that I could place dates next to each step forward and ultimately backward she will take.  I know that for 4-6 days her body won't say a word.  I know that after a week she will start to display some discomfort.  I know that we will never be able to maintain her required nutrition.  I know that she won't gain any weight, and she will eventually lose all the weight she put on over this past year.  I know that in the long run, it just won't work and we will be back to debating putting her back on it for the 3rd time.

Yet, I sometimes wonder did we get ourselves in too deep when we initially made this decision.  I know we did it with her best interest at heart, we did this for her, but what is supposed to happen next?  Is keeping her on worth the continuous risk of a central line infection that could cause her to be septic?  Is taking her off worth the risk of her losing weight and ultimately ending up in excruciating pain 24/7?  Does keeping her on or taking off even matter in the long run when she is now anemic, and still dehydrated despite all our efforts?  If only we could know what lay ahead.  If only we knew that keeping her on it or taking her off was the right answer.  Yet, we don't have the answers and we won't know what is meant to be until it happens.  So on Tuesday, we will go for our monthly appointment only to be faced with the same question and ultimately we will wait another month because that seems to be the only decision we are able to make.

1000 words

They say a picture is worth a thousand words.  That was the very first thought that popped into my mind when I received the email from Shutterfly that Sonya's school pictures were ready to be viewed.  I had spent the last week in anticipation of seeing hers since her older siblings all received theirs already.  I quickly opened the email and then paused.  Or maybe it wasn't so much a pause as I got smacked so hard in the face I had to pull myself together.  Maybe it hit so hard because things are completely all over the place in our house this week?  Maybe it hit so hard because I am a firm believer in never doing retakes because whatever occurs during the picture is the reality of life in that specific moment?  Maybe it hit so hard because I initially had forgotten about what actually occurred on picture day in the first place and after a quick moment I was jarred back into reality.

I debated between this two-piece outfit and its fraternal twin whose shirt was a dark shade of greenish blue.  I had been voting on the darker shirt but was vetoed by others who felt the mustardy yellow was brighter and better suited for picture day.  I obliged.  I picked out 2 glitter ponytail bows and let nurse Paige do her thing (clearly she is always on point as evidenced in the image below). The morning of picture day I told Sonzee numerous times "your pictures are in the morning, please wait and seize after".  When I dropped her at school a little after 9am I gave her a kiss and reminded her again to just hold off until after her pictures, and then got back into the car.  Within 8 minutes I received a text that said "Ugh. For real. Pics are at 1030".  Nurse Paige mentioned they were going to try and fit her in at a different time after she woke up, and I replied: "ok, if not it's the life of Sonze".  They waited, put on a horse and pony show-pompoms and all and nurse Paige said: "she is just sort of blah". 

A month later and I forgot.  I forgot how much I dislike CDKL5 and I forgot how her mutation causes issues in every. single. domain.  I forgot that I don't exaggerate when I say "she seizes all the time".  I forgot that no matter what medication we put her on it won't take away the negative effects her frameshift mutation causes.  I forgot that she gets absolutely no say in how her body treats her and how much she has to always endure.  I forgot that even though a picture says 1000 words, Sonzee cannot say one and we won't ever know what she must have felt like after she endured one of the literally (conservatively averaged) 5,000th seizure she endured before being placed in this chair.

13 weeks

In 10 weeks our oldest daughter turns 10. That means in 13 weeks Sonzee should be turning 5. It’s a birthday I have never prepared for, a day I wasn’t sure would ever come, a year I told myself we might not get to experience with her. As it creeps close I am torn between potential excitement at all that turning 5 represents and fear that letting my mental protective guard down will only prove to be catastrophic should my worst fears become our reality.

When Sonzee was diagnosed with CDKL5 when she was only 8 weeks old I immediately joined the CDKL5 parent support page. The first 10 months was filled with so many infant, toddler, and less than double-digit aged deaths that it shook me to my core. Whenever I have been asked about Sonzee’s prognosis and if there was an “age limit” I would answer, “it is unknown, there seem to be benchmarks that you can semi sigh of relief if the kiddos pass them, but I honestly have told myself 5”.

Within a month of celebrating Sonzee’s 4th birthday I had a dream, that I had finally allowed myself to plan for her 5th birthday, I went on Etsy and purchased one of those birthday shirts that had the number 5 and of course had it personalized. Then she passed. I never have been able to tell if that dream was a premonition or just my anxiety but we have watched her decline tremendously since summer and I honestly don’t know where her little body stands.  I don't know where my mind stands.

As each day passes and February 11 comes closer I am internally torn. I want to plan for her birthday celebration, I want to look forward to her preschool/kindergarten transition, I want to know with certainty that 2020 will bring me a 5-year-old, but like with so many things over the last 4.5 years I’m cautiously optimistic, but preparing for the worst. My sister semi joked that I should just avoid buying her a shirt on Etsy, if only that could dictate her fate and if only I could allow myself to plan.  But instead, I hesitantly look towards the next few months with hope yet filled with this indescribable weight of something lurking in the distance that is completely out of my control.

Instead

On the first day of October, my newsfeed was filled with posts regarding infant loss and miscarriage.  This is such a sensitive and personal topic, but the more the posts that popped up on my feed the more my mind couldn't ignore my thoughts and feelings.  I personally make it a mission to avoid any controversial topic that could possibly offend others, but I just can't seem to bury my emotions on this one, so I am going to hope at least one other person will be thankful for this post.

3 years ago Sam told me to take a pregnancy test.  I argued with him, I told him I wasn't pregnant.  He said, "I have done this enough times to know you...take the test".  Three tests later and me convinced they were all incorrect we laughed and cried.  We weren't ready, Sonzee was not in the best place, our minds had not even settled on whether or not we could handle a fifth child.  I mentally had not come to terms with the fact that there would be absolutely no way to confirm if this baby would be healthy, how would I be sane for the entire pregnancy?  I emailed Sonzee's geneticist, I scheduled an appointment with my OB immediately, I panicked.

Our OB knowing where I was mentally immediately sent us over to the perinatologist we had used on the previous pregnancies for various unrelated to Sonzee reasons, and he got us in almost immediately.  We sat in his office and discussed all of the options should we find out this baby wasn't healthy.  He also said that during Sonzee's next labs we could send a vial over to a company that hadn't done her initial genetic testing to have them "confirm" the results so they would have it on file for any comparison testing we might do with the fetus.

4 weeks later we sat in the same office as he told us there was no heartbeat.  I recall feeling half relieved and half disappointed.  I rationalized that we had 3 healthy kids and that we weren't ready, but I feared that this baby might have had CDKL5.  Did that mean Sonzee was the result of germline mosaicism?  Did that mean we shouldn't even try again?

It took another 4 long weeks to actually miscarry and another 2 months for my lab work to return to normal.  The entire experience was 5 months in total. 5 months where others announced their pregnancies, 5 months where friends had healthy babies, 5 months that I was emotionally all over the place but few people knew the real reason behind it. 5 months where I couldn't move on.  I was and am still filled with mixed emotions over the experience.  I mourn the loss of the potential, but I do not mourn the fact that I truly believe something was unhealthy with the baby AND I know what having an unhealthy baby means. 

I spent a lot of time thanking g-d for knowing I couldn't handle another child like Sonzee.  I understand what happens when genetics doesn't get it right and the challenges that are the result of that shift.  I understand on an entirely different level than I could ever want, what happens if a child is compatible with life, but not capable of being a typical functioning member of society.  I understand how devastating the loss of a child can be, but I also know that in a lot of cases it is for a reason.  While we may never be told the exact reason, and not everyone can understand what it is like to be on the medically complex side of what that potential reason might have been, for someone like me, while I mourn the loss of what could have been, I am grateful that instead of having to watch another child of mine suffer, all of the pain of the what-ifs, of the potential, and of the unknown, was placed onto me to bear instead.

The stars

One of my mom friends, Bridget, who also has a child on a medically complex journey posted a song on Facebook with the words, "Might seem strange, but sometimes a romantic song can actually change its meaning when you have a child", she went on to say "If you're a mommy of a non-verbal child; this one's for you."  For the past couple of weeks, our house has been slightly obsessed with listening to "The Greatest Showman" songs on Spotify, on the house Alexa, on YouTube, literally, anywhere we can get the songs playing.  I love all the songs on the soundtrack, however, "Rewrite the Stars" is the one that if you pull up next to me driving, you can bet money I will be belting out the words as loud and off-key as possible with tears in my eyes or rolling down my face.  

It seems to be the perfect duet with Sonzee these days.  Almost every single phrase I can relate to her life and our situation.  From the heartbreaking reality that "Fate is pulling you miles away And out of reach from me", But you're here in my heart".  To the literal facts that I am sure she feels, "You think it's easy You think I don't want to run to you But there are mountains And there are doors that we can't walk through".  Which leads me to the basic question, "How do we rewrite the stars?"  

Oh gosh, if only we could, if only it actually was possible.  No matter how many times I listen to the song the words crawl inside my heart and just sit there.  These last few weeks have been ridiculously brutal on Sonzee, on Sam and me, on our marriage and general family life.  The situation we are placed in is not normal and shouldn't even be considered normal in our special needs, medically complex, "atypical" world.  Decisions have been made, choices have been made, but there is no winner.  There is no winning in this lottery.

"No one can rewrite the stars", but "Say that the world can be ours".  "Say that it is possible, because "It feels impossible...We're bound to break and my hands are tied".

September

I wonder what it is about September and my inability to get my thoughts out of my mind.  I am thinking it is because this month historically tends to bring about undesirable thoughts or just doesn't do much to bring closure to any situations we are currently facing.  I have spent the majority of the previous two weeks not even wanting to sit down and write.  A few times I did consider it, but then decided I wasn't ready to make my thoughts completely public.  One additional time I began to write and two paragraphs in I was met with a barricade and haven't gone back to see if I am able to finish.  Tonight I am watching the time tick by, my eyes are blurry, but for some reason, this piece of paper keeps calling me back to it.

There is a constant lump stuck in my throat and tears that are literally a blink away.  4.5 years ago I couldn't have imagined a more delicate, emotional, and challenging journey to unfold for us.  4.5 years ago she was doing so well comparatively, and we were going to have the child who "broke the mold", who was the outlier, who didn't check off every damn box in the potential for CDKL5 directory.  4.5 years ago I told myself that she probably wouldn't sit, and if she did it would be around 3 as a method of self-preservation, but deep down I rooted for her, and could envision the excitement and party that was definitely going to unfold when she DID meet that milestone.  4.5 years ago we were blissfully unaware of the struggles that were occurring within her body metabolically and gastrointestinally speaking.  4.5 years ago we took it all day by day but woke up each day celebrating whatever Sonzee-stone she met.

Today on the couch in our living room we had another weighted conversation.  This wouldn't be the first of its kind this month, and it certainly won't be the last.  They are conversations that I never anticipated could occur in a casual manner, as we were drinking some cold brew, and while two of our kiddos were running through the house.  Conversations that prompted us to keep sending the one child who was old enough to understand on various expeditions to keep him out of earshot because it probably wasn't the most appropriate conversation for a child to be overhearing.  But as everything else CDKL5 related, we find ourselves dealing with a new normal, of completely abnormal and just going along with it, because that is all there really is for us to do. 

Choices.

A week ago everyone was home from school, the day was perfect to be outdoors, and without even second-guessing anything, we took Sonzee's port needle out and she was able to spend her day in her favorite place, the pool.  Despite losing time on her TPN/Lipids, it was an obvious choice. On Tuesday my phone rang and it was her endocrinologist's nurse.  I can't say I was not expecting this phone call, but I would be lying if I didn't admit that it should have occurred weeks ago and I was just waiting for it to happen.  The insurance kinks of her bone infusion have been worked out (I knew this weeks ago, but didn't rush to tell the office) because we have yet to decide is if it is in Sonzee's best interest for her to undergo the infusion.  On Wednesday Sonzee ended up with a fever and the protocol with the central line is anything over 100.4 becomes an automatic ER trip, yet we didn't exactly rush to take her in, the odds were in her favor that it was "just a virus", and lately the consideration of hospice has been on our minds.

Choices.  This journey presents us with the illusion of choices.  A choice is deciding on what is for lunch or dinner, or what drink you want from Starbucks.  By the way, all of those, thanks to the type of choices we have been presented for the past 4.5 years evoke major anxiety and panic attacks.  How is it even considered a choice to decide if Sonzee should go in the pool and have fun or be given nutrition?  Why do we have to decide to attempt to strengthen her bones to maybe prevent fractures and improve her bone health or keep her from experiencing 6 weeks or more of pain that historically wreaked so much havoc on her body she will cry to be picked up and won't be able to tolerate feeds for weeks?  Why are we even having to consider if we should be switching our 4.5-year-old daughter from palliative care to hospice care? 

None of this makes sense. Processing that this is part of our journey knocks the air out of my lungs. These choices might not have a "right" or "wrong" answer, but the results of each choice impact her life and our family's life.  There is no way around sugar coating the immense amount of weight that we are bearing.  I wish the biggest choices we were faced with were, which after school activities she wanted to be participating in, what lunch she wanted us to pack, and does she want to sleep with a nightlight on in her room?  But, that isn't our reality, and that isn't how life with a CDKL5 mutation works, so I will wipe away my tears, pull on the big girl panties, and try to do this right.

"Giving up"

This meme keeps popping up in my newsfeed.  The first time I read it quickly and passed by it, it was not the right time.  Then, of course, like a wildfire, it began to get copied and pasted by so many parents of CDKL5 kiddos and parents of children with medical complexities, so it popped up more and more.  Each time it emerged I couldn't stop myself from reading it, so each time my eyes would become watery and I would again move off the image.  I knew I wanted to save the image for when I was ready to address the words I kept reading, so eventually, I right-clicked it and pressed "save image", and now approximately a week after the first time I saw it, here I am.

"You're really advocating for someone's quality of life.  That's the moment you realize that you won't give up"

These two sentences take the air out of my lungs.  Maybe they hit home because of what is going on currently, maybe it would have knocked the wind out of me regardless of where we were on this journey had it appeared at another time in my newsfeed?  But all I think after I read the last sentence is, "what is giving up? what does giving up look like, how are those words even part of this picture?"  Advocating for someone's quality life is no small feat.  It looks vastly different for every single person who has to do it.  Advocating on someone's behalf is scary and unknown and when it comes to "quality of life" I feel like the answers are blurry, but the giving up part does not present itself as a single moment when it becomes "more than accommodations".  If you are advocating on behalf of a person there shouldn't be an epiphany where you suddenly realize "that you won't give up", because advocating in and of itself means you are going to represent what is best for that person until you are red in the face and no one has any doubts that you aren't backing down until this person's needs are met.  

Yet, the weight that is placed on those of us who are responsible for advocating for a person's quality of life is unexplainable.  It often brings with itself the inner feeling of wondering if a choice will be considered to be "giving up".  When it comes to "quality of life" in a medically complex child, who is to say what "giving up" looks like?  If the choice you choose on behalf of "quality of life" results in a potentially shorter life is that giving up?  Is it "giving up" if you no longer choose to keep seeking treatments?  If the main goal is "quality of life", then I feel like the words "giving up" should never even enter into our minds, because it has to be known that there is no such thing as "giving up".

Riverbend

We had the Alexa playing Disney radio this afternoon after Sonzee got home from school.  I feel like more often than not it plays the same exact songs on repeat; songs from Beauty & the Beast, Frozen, Moana, Tarzan, Little Mermaid, and The Lion King are the most often played.  For some reason today I noticed not only once, but at least twice "Riverbend" from Pocahontas came on, I wonder if it has played before and I just didn't hear it, or if today it was just one of those songs that came on because it was so relatable.

I feel like life has given us a swift kick in the behind these days.  These last two weeks especially have been weighing ridiculously heavily on me.  It seems it is just one thing after the other and I have no idea why it feels like everything is crashing down around us.  We have been in the trenches before, but for some reason, this time just feels different. As usual, I have no idea what lies ahead, but this time my heart hurts for different reasons and my gut is yelling at me at the top of its lungs.  It is deafening and suffocating any other thoughts all at the same time. 

It's tough, although I feel like that word doesn't really bring justice to what this whole journey has been and continues to be. But tough is just what it is, and for now "I look once more just around the river bend.  Beyond the shore where the gulls fly free.  Don't know what for what I dream the day might send. Just around the river bend for me"

Resurface

The pain that accompanies this experience is one that I am sure will resurface as the years continue to breeze on by. 

I was driving in the car this morning on the way to a toddler gymnastics class with Sonzee's baby brother.  I have been looking forward to starting this class since the minute he was born.  As the months past by I was so eager to enroll him, and finally about 3 weeks ago I did just that.  I confirmed that our beloved Coach Susan was teaching all the morning classes like she did over the previous years.  Halfway to the gym my eyes filled with tears as I was thinking the first time we set foot in this gym was 8 years ago, then our second child followed suit as soon as he was 18 months, followed again by our 3rd, but then our time with Coach Susan came to an end with Sonzee, and now here I am bringing baby #5.  At that moment I remembered I had written a post about that chapter closing.  While not completely surprised I found myself crying again in the car, it still caught me off guard.

My heart finds itself in a constant battle of celebrating these amazing family milestones and broken over Sonzee never being able to be part of them.  Had she been able to bear weight maybe we could have modified the class?  Had she been able to sit maybe we could have had her do the circle exercises?  Had she been able to use her gait trainer when she was younger and in an efficient manner, maybe she could have run in a circle?  Maybe if she hadn't spent her earlier years in excruciating pain we might have learned she loved gymnastics?  No matter how many therapies or activities we have tried her in, it won't ever make up for the things that she has been unable to participate in. 

Lately, my heart has been in so much pain over where we are today.  A giant disaster of a circle that truly is never-ending but yet always seeming to start back up with pain, discomfort, sadness, and difficulties.  I do not understand how much more her little body can take and I do not understand why it has to be this way.  I can't even imagine what else could pop up, but I am sure I won't have to wonder too long because inevitably it will present its unwanted self.  Not surprisingly, but yet at a level of fascination with myself, I cannot believe how spot on I was so early on in this journey to assume all of these emotions would resurface, because they certainly always do.

Processing

It feels like it has been forever since I last sat down and allowed myself to take a deep breath.  I decided even though I am exhausted from our final drive home, the beginning of unpacking, and the fact that it is 1:44am, I wouldn't let myself go to sleep without writing a blog post.  So many thoughts popped in and out of my mind over the last couple of weeks, yet time didn't allow for me to devote more than the second to them, and I know I need to make them coherent and sort them out in and outside of my mind.

This summer has officially come to a close in terms of travel and play, albeit not so much in terms of Phoenix's 112-degree forecast.  I am not fully ready to reflect on the events of summer as a whole because for the first time in Sonzee's life I feel like this summer was not actually a summer.  I honestly feel in a way we were robbed of my expectations, and maybe that was my fault for even setting any.  That is what I hate about CDKL5, so many plans that don't come to fruition, in their place is the life that I have minimal say and control over, and for some reason, I am still unable to relinquish the reality of that concept.  Deep down I know that there is a reason for everything, that there is a purpose for everything that occurs to Sonzee and for all the experiences we have because of her, but closer to the surface it remains a constant struggle.

4.5 years in and I still cannot grasp why she needs to struggle for any potential "better good".  While I am so fortunate to those who have literally become like family to us, I wish it was not at our daughters' expenses.  There is no amount of life learning lessons or inspirational gain that should come at the hands of pain and suffering of Sonzee or any other child.  I still have moments, like right now where I wonder why her?  I still hate that this is her life and her reality.  I still hate having to act like I am okay with any of it because of occasional societal pressures.  I still cannot shake the pain and physical strangling feeling that has consumed my heart since first hearing and reading the letters CDKL5, and I am starting to understand that I don't think I ever will.

Stacking blocks

When my oldest was a toddler she had these rubber squeaking building blocks that she would play with.  She would take the blocks and build a tower high as she could before it would either tumble down to the floor or she got overly excited and decided kicking it down would be more fun.  Each time they fell she would squeal with excitement and then start the process all over again.  I can still envision her huge baby toothed smile while she was jumping up and down.  This morning her smiling face popped into my mind as I was thinking about how much this relates to Sonzee's milestones, more specifically her GI accomplishments, the main difference every time the tower falls there is no smiling face there to celebrate.

We spent years building tower after tower trying to find a solution to Sonzee's GI difficulties and pain.  Every time the reprieve would be short-lived and we were back to situating our building blocks into the perfect configuration to maybe reach some kind of success.  Finally, in December, after close to 3 years of being made aware of her struggles, it felt like our final tower was built.  Since then there have been a few occasions where a couple of blocks have fallen.  Every block that fell was replaced within a few days, maybe a week tops, but slowly the tower would resume its height and we would breathe in a sigh of relief.  It had been close to 6 months since the last time a few blocks fell from the top of the tower, so maybe my comfort in the situation was unfounded based on history, but since they say we are supposed to have hope,  we did. 

Over the past month, it seems like we have been traveling in a falling block zone.  It started with a single block falling, turned into 2-3, and now there is no proof there ever was a tower.  The base block is nowhere to be found, it too has lost its grounding and has completely disappeared.  We are back at square one, really below square one, everything has been erased, it is as if the tower was never built in the first place.  I feel defeated, I am angry and so incredibly sad.  I am in the place of wondering if this tower can actually be rebuilt or if our new tower will even include all the blocks we used in the first tower.  Everything is lost.  Everything is gone.  Everything has been erased, yet a tower needs to be rebuilt, but there is definitely no eager toddler awaiting the thrill of stacking the blocks waiting for them to eventually fall down.