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".  

The Same

We are a month and 5 days away from Sonzee turning 5.  I really am trying my best to focus on the sheer fact that she will be turning five, that she is here to celebrate such a milestone; but the human side of me says that still is not enough.  It is honestly just not enough to be celebrating a milestone that I am not even sure she realizes is occurring.  The doubt in that fact alone is enough to bring tears into my eyes.  Watching her seize and sleep her days away otherwise is enough to release the tears straight down my face.  It just isn't fair.

We are a month and 5 days away from our youngest being officially more than 2.5 years younger chronologically from Sonzee, but developmentally 2 years more advanced than she will ever be, with an ever-growing gap as each day passes.  It hurts. It hurts in such an incredibly unexpected way.  Watching him as he gains every little skill.  As he speaks more words each day.   With each and every smile he flashes my way.  With every gentle pat and snuggle he gives her and concern he extends toward his bigger sister.  It just isn't how the roles are supposed to be.

I sometimes wonder if I will ever really wrap my head around the fact that this is the life she is destined to live.  I wonder if I will ever truly be able to accept that this is how it is supposed to be.  I wonder if I will one day truly believe she really is who she is and it was a purposeful genetic mistake, or rather not even really a mistake.  I wonder if I will ever be able to give up on what I still honestly secretly wish she could achieve, and the dreams of normalcy I wish her to have.  I wonder if there is ever going to be a way that I can look at her siblings and not have a cloud dampen it because Sonzee isn't or won't be able to do xyz.  The minutes and hours are ticking by.  The days are going by faster than I can keep up.  The years are speeding by at a rate I feel I am not even able to process, but Sonzee, she always stays the same. 

Karaoke

Sonzee's older siblings always love to put on shows, so when it came time for me to complete their wish lists for Chanuka Angels gifts it was a no brainer to include a karaoke machine and karaoke microphone.  The box of the karaoke machine came unwrapped and our middle daughter knew it was for her because it was in her pile, so she has been eagerly anticipating opening the actual box.  Our son who really didn't know everything that I requested for him was eyeing a specifically shaped box in anticipation of it being a microphone, thankfully it worked out for the best when he opened his gifts.  Sonzee did get a really awesome spinning light wand from her aunt that would be totally awesome to use during their shows, but as usual, despite our best efforts, she was unphased and indifferent to her gifts.

I usually keep Sonzee's gifts limited to things she actually needs, such as clothing, backpacks, pacifiers, or pacifier clips.  She doesn't show any reaction towards anything she is given, and honestly, she doesn't seem to even be aware that she on the receiving end of a gift.  It is probably more a protective mechanism for myself that I limit the types of gifts she receives because there is no excitement, no reaction, really, there is no awareness at all.  From a parent's perspective, it is really sad because the best part of having your child open a gift is their initial reaction.  Due to the safeguards I have in place and the fact that we are blessed with four other kiddos, I didn't find it difficult to handle the gift opening portion last night on the first night of Chanukah but then we started family karaoke and I have yet to find the solution to the unplanned emotional situations that inevitably occur.

The karaoke machine was hooked up to the TV, the microphones were connected, the lyrics were on the screen, red, blue, green, and white disco lights were spinning in a darkened room, and the music was blasting.  We might as well have been called club Zaila, it was the best.  I started to record the kids singing at the top of their lungs and then panned across the room until I got to Sonzee who was just laying in her ppod not participating.  A mixture of exhausted from her recent seizure, the multiple other ones she had throughout the day, and just CDKL5 in general.  She didn't care for the disco lights going, she wouldn't even look at the awesome spinning wand her aunt gave her.  She was just blah.  I felt the tears enter into my eyes, but I immediately pushed them away.  I didn't feel like letting CDKL5 steal another moment.  It was much more fun to focus on my older three dancing while they sang at the top of their lungs, so I flipped my emotional switch to off and pushed the pain away.  Always on the tight rope of acceptance and hope of something.  While I fully accept who she is as a person, I still hold onto some hope that maybe tonight she will want to look at her amazing spinning light-up princess wand when we turn back into club Zaila.   

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.

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. 

Diagnosis Day for the 4th time

"2:30pm on Thursday, April 16.  We waited only 5 minutes for her to come in the room.  To tell us again they only tested 71 genes, to tell us Sonya's positive result was on CDKL5.  To tell us that with that positive result on this gene and her clinical presentation of seizures, she would most likely have: epileptic encephalopathy early infantile 2, x-linked infantile spasm syndrome, and or Atypical Retts Syndrome. 

We asked our questions, I left there with some odd reassurance that just because she had a mutation with her CDKL5 gene did not mean she would have any of the ugly possible disorders assigned to the gene. 

Then I went online and typed in those 5 seemingly innocent letters, that in combination are no better off than a death sentence to a parent of a 2 month old baby.  And it was at that moment that I realized, sometimes it is better to be blissfully ignorant...sometimes it is better to not have all the answers, to not know the why."  - Originally posted on April 19, 2015

4 years have passed since we were given an answer.  An answer that over the years has been used and honestly overly abused to explain why she has seizures, why her stomach doesn't work, why she requires feeds directly into her bloodstream, why her eyes make wonky movements, why she has cortical vision impairment, why she does not sit, why she does not talk, why she does not have functional use of her hands, why she has low tone, why she cannot run outside and play with her siblings, why she does not interact with others in a typical fashion, why she has poor bone mineralization, why she is failure to thrive, and why one day I will have to bury my daughter. 

I wish the diagnosis had explained why it had to be her, the best way to treat all of the problems it has brought into her life, and at the very least given her a voice to let us know if she agrees with our management decisions, how the medications make her feel, if we truly are giving her a better quality of life, if the procedures have been worth it, and if she wants us to keep doing what we are doing. 

I have found myself wondering over these past 4 years, what good has knowing the cause actually done for her?  We dove right in thinking knowing when she was 8 weeks old would actually make a difference for her.  We clung to the (few) children we saw crawling, walking, and saying words, whose parents said that intensive therapy is what made the difference.  I convinced myself that Sonzee was young enough, surely she could beat the odds.  Except over these past 4 years, I have learned that no amount of intensive therapies, money, will power or determination can compete with her specific mutation.  It's helped our family cope, but it hasn't healed our hearts.

While we have spent 4 years gaining an extended family that stretches around the entire world, we have mourned the loss of TOO MANY siblings.  We have spent 4 years knowing that there is no cure, that there is no specific medication or treatment that can replace her mutated CDKL5 gene, that there is no way to stop her intractable epilepsy, and that there is absolutely nothing we can do to ease any of this for her.  We have spent 4 years clinging to hope of what I am not even exactly sure, but I suppose hope that all of this will change?

Of all the answers that we were given on April 16, 2015, I wish one of them had been, the results of the infant and child epilepsy panel did not yield any results.

The day before Diagnosis Day

It was a Wednesday.  I cannot remember the exact time, but I remember walking around the house while on the phone picking up toys and putting things away.  I can tell you what rooms I was walking in and out of and where I was when the neurologist said the words, "we got results back from her genetic testing, but I don't want to tell you what they are over the phone.  I don't want you to look it up, and think that will be Sonya".  I remember when I hung up the phone I felt relief.  I was actually giddy with excitement because we had an answer.  We would never have to wonder why she was having seizures.

This was great news.

I quickly learned on this journey that everyone processes things at their own rate and in different ways.  When I told Sam that we were meeting the next day because she didn't want to tell us the results over the phone I didn't quite know what he was thinking.  It wasn't until a little later that day when he called me from a gas station that I got a glimpse into his mind.  "Randi, it isn't good", was what he said when I answered the phone.  I was not even sure what he was talking about, but he continued on to say, "I looked up the panel, and there is only one good thing, and she doesn't have it".  I said, "Sam, you don't even know what you are looking up, it is going to be fine, we will have our answer tomorrow, stop looking things up."

I honestly was so content with knowing we had an answer it never dawned on me to even look up the panel.  Not once during the 3 weeks since that test was sent off did I even consider what was actually being tested.  I guess I was not always as neurotic, worried, or as pessimistic as I have become. When I think about that fact, I realize how much I have changed in 4 years.  4 years ago today even though I knew we had an answer, I still had no idea what that answer was going to lead to and what was going to be in store for our family.  4 years ago today, we were a little on edge, but still BLISSFULLY unaware of all the pain, all the surprises, all of everything that the characters CDKL5 was going to bring into our lives, and a lot of the time, I wish I could back.

Heartbreak again...

We got home from a wedding not too long ago and everyone dropped like flies right into bed after their showers.  That is everyone but me.  Sonzee needed her food refilled and her TPN started, so after I took care of that I came to my computer and thought about writing a blog post.  I was clicking through the years tab on the side of my screen to see how many posts I wrote in March over the years since I began blogging and then it dawned on me that in 30 minutes it will become April.  My heart skipped a beat at this realization and that pesky weight in my chest that I manage to push aside resurfaced.  It means in just 15 days it will have been 4 years since we first heard about CDKL5. 

Diagnosis Day, is probably one of my least favorite days of the year.  It is one of those anniversaries that I feel requires celebration, but yet it is a day I feel should never be honored.  Such a mixed bag of emotions.  I often wonder how it becomes April so quickly each year.  As if 365 days manage to literally speed by just to reach April 16.  It is one of those days like the birth of a child or Kindergarten graduation that you remember every detail as if it just happened yesterday.   A profound day in Sonzee's journey as well as our lives that gave us answers and a weird sense of closure yet at the same time an introduction into a world full of uncertainty, fear, and heartache that we had no idea existed. 

4 years ago we had no idea about the world that would soon be introduced to us.  A world that was existing concurrently but yet completely oblivious to our family.  A world where children were dealing with challenges we would never have even considered children would be forced to live with.  And a world where parents were making decisions that no parent should ever have to consider.  A world that I never dreamed existed because you don't even consider this sort of world will reveal itself to you or your family. 

I think about the 4 years that have gone by and I cannot even imagine what life was like without our knowledge of CDKL5.  Just 4 years ago we were strangers to the world we now only know as our world.  A world that once spoke a foreign language but yet is now the only language we understand.  A world that we couldn't comprehend and we weren't sure where we quite fit in, but yet the only world we now feel comfortable and understood.  A world where the bonds we make with others on the same or similar journey will far surpass those that could ever be created between those who can't imagine. 

Prior to April 16, 2015, I couldn't imagine, rather didn't want to imagine what CDKL5 was, or how a parent could parent a child diagnosed with something as challenging and horrific.  Yet, here I am, and here we are just 15 days away from the day that changed our lives forever.  While I feel grateful we didn't have to wait long to get our answer, I am still just as devastated, just as clueless, and just as broken as I was sitting in the car reading the list of items Sonzee most probably wouldn't do in her lifetime, because sadly...for us...for her...it was all true.

"just normal"

Yesterday I was fortunate enough to be able to spend part of the afternoon with moms.  When I initially typed that sentence I inserted the words "amazing" and "incredible" prior to the word "moms".  After erasing each of those words, I then wrote "medical" and erased that word as well. Yes, these women were all of those words (and more), but the reality is, while they are moms of a medically complex child (or two), the reason this blog post is dedicated to my time with them, and this specific event with them, is because while what brought us together is the similar but different journeys our children have taken us on, the best part was that we were able to be "mom's just hanging out".

I spent a good portion of my time in awe of the situation and I spent a lot of silent driving time afterward processing it all.  Each mom represented a different part of the journey we all are living.  Each mom on her own individual journey yet in this one place she was among a mom who gets it.  A mom who even though she may have just met, allows her to say the thoughts that she would never be able to say to others.  A mom who doesn't feel pity or sorrow for what the other might be experiencing and who you know truly gets everything that is coming out of your mouth.  A mom who isn't trying to sugar coat the words being said or making you wonder how she might handle what you are going to say.

It was a completely surreal situation to be out in a public place, laughing through serious conversations, and having what some might call taboo discussions as if we were just moms hanging out following our child's music class.  I didn't feel like an inspiration or amazing or incredible or any other descriptive word that this group might be perceived by to others.  I felt like I was a child on his/her first day of school wanting to run home and tell everyone about my day and how many new friends I had just made.  For the first time while on this journey, I felt a sense of weightlessness.  I felt a place I belonged but most of all what I felt was really just normal. 

Innocence

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.  

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.

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.

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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If only

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

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

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

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But I wish...

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

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

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

But oh, how I wish it were.

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A "new year"

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

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

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

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

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One minute 45 seconds

Lately I have been really struggling with my beliefs and the concept of hope in general.  I do my very best to try and be optimistic but the "real me" is more of a realist, which tends to come across as "Debbie downer".  I can own that about myself, and honestly, I do not feel like I am in a place to jump ship on the "perceived negativity" at this current juncture, because it is safer for me to be closer to the bottom.  When I find myself in one of these lull periods, it is as if I am more receptive to the shimmer of hope that might actually exist.  

In the middle of the night between Monday and Tuesday morning I had what will always remain one of the top 5 moments between Sonzee and myself.  As I went to start her back on her 20 hours of continuous intestinal feeds I turned my phone flashlight on and caught a smirking faced Sonzee looking over at me.  My immediate reaction was a huge smile and of course to begin recording this magic moment.  I honestly do not remember the last time I have felt her portray such giddiness and happiness outwardly, not to mention an actual "dialogue", my heart was literally exploding.  It was near one minute and 45 seconds where my 3-year-old acted like a 3-year-old.  One minute and 45 seconds so genuinely appreciated and not taken for granted that even typing this brings tears to my eyes.

Many minutes, hours, and days spent with Sonzee are surrounded by question marks.  Is she happy?  What is she saying?  Does she understand?  How can we help her?  Is she in pain?  Why are the simple things in life so challenging for her?  Those are just preliminary; my list is far more lengthy and complex.  I often feel like I am drowning with hefty decision making and uncertain repercussions.  Then randomly out of nowhere I am truly given a gift from G-d, as if he knows this is exactly what I am needing.  This one minute and 45 seconds was chicken soup for my soul and will certainly keep me company as we continue through this next phase of uncertainty along this special needs journey.  

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Peek-a-boo

Yesterday we did our annual summer day trip to Kelder's Farm.  My older kids absolutely love berry picking and going on the hayride and trampoline, feeding the animals, and milking the cow.  It is always a fun day and we share the experience with our family friends who have three children; their oldest is older than all of mine, their middle one is the same age as my oldest, and their youngest is a couple of months younger than Sonzee.  Over the years being around their youngest daughter has not really made me sad, just always leaves me in awe thinking of where Sonzee might be if she were typical.  However, this year as she is closer to being three it stings in a different sort of way.

Sonzee's older sister who is 5 has been playing with their youngest daughter almost every day.  They are so cute, and because my daughter is petite, they look close to being the same age, and make the cutest set of pals; hugging each other, laughing, and being silly together.  I was looking back through my pictures from our day at the farm and could not help but feel a pang in my chest as I saw all the pictures of the two of them on the trampoline and holding each other in the smiley-est embraces.  

Those pictures shouted at me "Someone is missing", "She is supposed to be 'Sonzee's friend'", "I should be settling the argument that she could be both of their friends".  It is always these random insignificant moments that crawl into my heart and tug at it in a way I could not have expected.  I have come to know these situations will occur, but since they are unpredictable in a sense, I am never quite prepared for how they will present themselves.  It is on the most perfect fun filled family days that the reality of who Sonzee was not afforded the opportunity to be, sneaks up unexpectedly and says "peek-a-boo".  

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Holding

Over the last couple of weeks Sonzee's baby brother had a massive burst with his skill acquisition.  He went from being a little "behind" to right on target with just some little kinks that he will have to iron out as he continues to grow.  He is 6.5 months old and he is rolling around and able to sit on his own for increasing lengths of time.  He is reaching out for and exploring his toys more often and his personality is shining through.  My most and least favorite part of the effects of his current gains is blended into one.  Nothing has ever brought me as much joy as the relationships I have watched develop between my children.  However, this week nothing hurt quite as much as watching my older kiddos run passed Sonzee after they came home and over to their brother, who was sitting up, so eager to see them with a grin wider than his little face could handle.

In one instance I was hit with so many emotions.  They smothered him in kisses and hugs while picking up his hands and getting excited with him.  After close to a minute of watching them interact, I said from behind the counter, "Did you say hi to Sonzee?"  My oldest daughter quickly turned around and went right over to Sonzee and gave her kisses and asked about her day, but the damage was done.  I was not upset or mad at my older children, these situations happen.  I understand what it is like to be drawn to those toothless smiles, the sweet coos, and the reciprocity of a more typical child.  Yet my heart broke for Sonzee.  She had to have known.  She used to be the one they ran to when they came in the door.  Three years into this journey and it amazes me each time I experience something new that brings about the "old" feelings of anger, frustration, sadness, and grief over the loss of what should have been a healthy 4th child.

As this journey continues it does not get any easier, but rather the feelings just ebb and flow.  Some days the weight is almost unbearable and the pain feels as fresh as it did back in 2015.  Then there are times when I am unphased by our situation and "it is what it is".  There is no way of knowing what each day will bring, and I wish I knew in advance because more often than not I am just holding on and barely holding on at the same time.

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But then...

More times than I care to recount in the past 3 years I have made a "prayer request" post for one of our CDKL5 siblings or their family as they were in the hospital, on hospice, or already passed.  The topic no one wants to openly discuss but that every parent who has a child with CDKL5 tucks into the recesses of their mind.  Maybe we can rationalize that these posts are rare.  Maybe we can pretend that because there are much older children who are diagnosed with CDKL5, this won't "happen to us".  Maybe, because this time it wasn't us, we can pray for a multitude of reasons and go back to our reality.  Maybe when we wake up the post will have been a "false alarm" and we can all breathe a sigh of relief.

While there is a numbness that begins to creep into your body after making so many of these types of posts and losing so many of our beautiful children, there are always pieces of your heart that will never be put back together.  A portion that breaks because this child has been "adopted" into your family, and you have most likely been following his or her journey and witnessed his or her struggles and accomplishments along the way.  A portion that breaks because you have most likely stood in this position before with another family and you have an idea of how this is going to unfold and you know a parent is about to part of the group that you still cannot understand even exists and never want any part of.

While your heart is broken for this family, the reality is that your heart is also broken for yourself.  You cannot possibly imagine your child's journey following in the same manner, even if you could imagine it, you do not ever want to.  You cannot fathom how this family is going to make it through this, because it is incomprehensible how you would.  Other families will tell you that you cannot dwell on it, that you cannot live life fearful of this occurring, to an extent I think that is accurate, but then the reality sets in.

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