Navigating

Dear Sonzee,

In a few more hours it will be 8 weeks since you were last here.  Didn't I just tell you it was 7?  I cannot believe Friday marks a full 2 months, it will also mark Ema's bestie Elle's birthday, so that will allow the clouds to part a bit.  The tears still fall at the drop of a hat, the pain still feels just as fresh, and the weight on my chest feels just as heavy.  Yesterday we had a really nice family day, the 6 of us, it almost feels wrong to admit that to you.  I promise though all I did was think about where you would have laid in the grass with your siblings, and how I would have made you go on the slip and slide with me; although you would have hated the cold water.  Noam would have sat with you since he refused to go on it because boss baby agrees with you on the water needing to be growing bacteria to get near it.  We all went into your swim spa to warm up, someone (yet of course none of your siblings will admit who) made it 91, don't worry, we adjusted that quickly back up to 94, we all know how you like it.

The last two times I have gone to see you there have been rocks painted and left for you.  I love the surprise, and even better is after I make a post the person sends me a text to let me know who it was.  I cannot tell you how much joy it all brings to my heart but it also hurts me to know others are having to miss you as well.  In case you don't know, missing you really hurts.  I don't wonder if it will ever feel better, I know that it would be impossible.  You have left quite a void for so many, I hope you realize how special you were, are, to a lot of people.  Meena slept in your room on Saturday night, Laeya Sunday, and Tzviki has requested tonight.  The only bit of guilt I feel in regards to him and your last few days is that he asked to sleep with you and I told him "not tonight" and then it never happened; he has reminded me of this at least two times since you left us.  I am so sorry if you are upset about that as well, I should have just let him, I don't know why I didn't; but tonight and whenever else he asks me to, he will be there.

I gave Auntie A all of your clothing, it wasn't that difficult because 95% was from your sisters, and it always goes to Ziva after you.  She has insisted on wearing the outfits practically every day, it makes me smile when she walks by the house in a familiar combo.  She and momo were talking about you the other day and Auntie A sent me the recording of the last part.  I know Ziva has been missing you a lot, and she was talking about you.  Mo said you will always hear them talking to you because you are in the sky and you were with Hashem.  Neither Auntie A nor I realized how much your absence would impact Z, so maybe if you could add her into your watch list if you haven't that would be so great.

Last week I took another picture at your grave and received a text from Coach Susan pointing out another heart crept it's way into it, this time the shadow was the heart.  I am starting to really think you are somehow doing this on purpose.  I think I am too afraid to admit that it really could be a sign from you, but after the third time, I promise I will stop doubting (hint, hint).  While we are on the subject, if you could just find a way to let me know you are doing okay, ema could really use the reassurance.  It has been really challenging to not be able to check-in, to not be able to call and have someone tell me you are doing well, to not know you are feeling ok, to not know you really are alright, to not know you have made friends, or that someone is taking care of you, or at least is there for you when you need it.

Navigating life with you feels similar to being dropped into the middle of a jungle in the fog with no compass.  I think the busy work of being back to writing progress reports, IEP's, and present levels has helped me keep my footing, but it is easy for me to falter when I see the dates of birth of the kiddos in my classes are younger than you or your age.  The days are starting to have more moments where the tears don't force me into hiding or make me turn away so no one catches the twinkle is there.  But then there are times where a simple thought brings a tidal wave right back at me. I know this is going to be an even slower marathon than living your journey with CDKL5, so I am learning to give myself grace.  I just hope and pray you are not having the same difficulties navigating your new world without us, and if you find yourself having one of those tough days just know it's allowed.  Remember that we miss you beyond words and to stay safe.

Love always,
Ema

Blankets

We are coming to the end of our first week at home.  There have been minimal time commitments leaving me a large amount of time to finish Sonzee's room.  This morning I was cleaning off the remaining items that have been thrown on her bed as the rest of her room is straightened up.  I am in search of one specific item I know I have hidden somewhere so I can frame it, but I have no idea where it has been placed for the last almost 5 years.  I went into her brother's closet which has been the main storage facility for many of the kids' items because it is the only walk-in closet in our house.  I reached for a large green Ikea bin sure that it was full of cards and papers related to Sonzee, but as soon as my eyes caught the contents I realized I was right about only one thing, it was a box for Sonzee.

Blankets.  I saved her blankets in this bin when she was no longer a baby.  After she turned three and started school I exchanged the blankets she would take out in public.  I essentially forgot about the blankets and that I put them in this box.  I have looked at so many baby pictures recently with these blankets and maybe one time did it even dawn on me I had not seen them in a while.  It clearly wasn't too much of a thought for me as I didn't go on a rampage to find them, but now, here they are unexpectedly in my face.  The baby blanket with her birth statistics that my sister made for her, ironically with lime green thread.  The Sonzee/Sonya bear blanket that an online Facebook shop sent to children who spent time in the hospital.  Her first NICU blankets.  The blanket the International Foundation for CDKL5 sent me when she was first diagnosed, which reminded me that it was also sent with the Raggy Ann doll that has been in her room that I couldn't remember who had given it to her. The small lovie blanket we grabbed from the volunteer cart during one of her PCH stays because it was red.  All of these blankets that were such a significant part of her early years and now they will be a significant part of my future.

I am still adjusting to how things continuously sneak up on me.  I am still caught off guard with these moments that feel like a fresh stab wound.  I am still shocked that it isn't until these types of moments that I realize I am blocking so many emotions.  I am still surprised at how much it hurts that she isn't here.  I am still overwhelmed by the thought that she won't ever be back with us here.  I am still having difficulty with the fact that I justify that losing her was better for her because of the struggling she did while she was alive.  I still don't understand how that makes sense.  I still cannot comprehend that she had to spend 4 years 11 months and 23 days locked inside her body only for her freedom to come by leaving earth.  But, besides all of that, what I find almost poetic is that baby blankets that were used for her comfort are the items that brought me to tears.

End of Shloshim

Dear Sonzee,

Today is the end of Shloshim.  My world supposedly is returning to normal tomorrow.  All the restrictions for the past 30 days will be lifted and life will partly go back to how it always has been and yet will never ever be the same.  Tonight we are having a celebration for you.  I went last night to put out 22 tables, and as I was putting chairs around table 19 I started to cry.  It had nothing to do with the tables or the room and everything to do with the reason behind the setup.  22 tables should be in a room to celebrate your Bat-Mitzvah or your wedding.  22 tables should be in a room to celebrate the birth of your first daughter at kiddush or your first son's bris.  22 tables should be in a room to celebrate anything but the fact that you lived for 4 years 11 months and 23 days.

The 22 tables, as well as the room, will be decorated in your favorite color red, black because we always used it to help you with your vision, and grey/silver because it sparkles and compliments the red and black well.  Auntie A and I made a glitter banner for your candy area that we totally could have bought off of Etsy, but it was so much fun to use her Cricut machine, and it only took 3 hours of our day.  I should mention it was fun to do, turned out great, is so sparkly, and amazing and it looks store-bought.  We have tons of red, black, and silver candy sitting in the house.  Noam keeps walking around saying "Dondee Tandy".  He was so excited over the dum-dums that arrived last night after I panicked over not being sure we had enough candy for the number of people attending, and he kept shouting "law-wee, law-wee...Dondee tandy".

I threatened your siblings with not staying the entire time tonight because they cannot seem to get their act straight lately and get to sleep on time.  I am sure you would be rolling your eyes at their shenanigans these days.  Laeya wrote a song and will be singing it for you tonight, she even invited Meena to sing two lines with her, it makes my heart burst that she did that, but I know she wishes you could be singing with her.  It is a really sweet song, I hope you can hear her sing it; don't worry, she has been working with Mrs. Kasiah for voice lessons and really doesn't sound too bad.  We also have a couple of slide shows, and honestly, it was really challenging limiting what pictures we used even though it was less than 5 years that you were here with us.  You really did have a jammed packed life and I am so grateful I have so many pictures and videos to help keep the memories alive.

We are doing a mitzvah project that involves asking everyone to take on a new mitzvah in your honor.  We will have books at your celebration that represent different "chapters" that each person can write their name in and we will then put them together to be part of one book of mitzvahs.  We are also working on something at Chabad to give the boys tzitzit and a kippah when they turn three and girls their first candle to light for Shabbas, but we have not finetuned the details just yet.  We have one more special surprise we are working on, but it isn't finalized yet and I want to tell you it when it is solidified, I think it will make you extremely happy though.

I don't know if you know I have gone to visit you every day except Shabbas since shiva ended.  You have quite the collection of rocks and your room looks really nice and kept.  After the rain last week they had to fill in the front by the sidewalk, but they did it within 24 hours.  I have now spent many collective hours chatting with Ms. Wendy, Mr. Ray, and Mr. Darren.  The grounds staff is there all the time as well, and I often wonder how they have so much to do, but at the same time, you have gained quite a few neighbors over the last few weeks, so that has kept them pretty busy.  Tzviki, Meena, Laeya, and I took a walk on Sunday through the entire cemetery reading the headstones and giving our opinions on the prettiest colors and neatest looking ones.  We are all excited for yours to be up, but we still haven't figured out what we are writing on all of your pieces.  I am sure it will eventually come to me, and since we have time, I am not worried.   

I switched out your closet cabinet with the Ikea unit in the playroom so Noam stops spilling out all the board games.  It is working like a charm so far, but it has only been 2 days.  You have so many items that can now be on display that the Ikea unit is a much better fit anyway.  I still have so many items to hang and so much to do for your room to be complete, I am sorry it is taking so long.  I have been keeping myself busy preparing for tonight that I am a bit scared about what is going to happen tomorrow.  I am thinking about going back to work, but I am so nervous at the same time.  I am just still having a tough time figuring out this whole living life part without you here.  It still doesn't make sense, it is still weird, it is still wrong.

While I could continue to write you a novel with everything I want to tell you I am sure you have other things to occupy your time. So, if I could make a request, I would love for you to come over to Chabad tonight between 5-8 because you have literally hundreds of people who are coming to celebrate your life and I want you to see just how truly loved you are and always will be.

With love always, 
Ema

Fine

I was doing fine yesterday.  Well, maybe that isn't exactly the truth.  I should probably be honest and say I was doing fine because I have almost perfected the art of ignoring potential triggers.  I know I should stop ignoring them, I know I should allow myself to really feel the emotions as they come and let everything out, but I am just not ready yet.  I know that doesn't sound all that intelligent, because when will I ever really be ready?  I do not have that answer, but I know for right now it is just too much.  So like I was saying, I was doing fine yesterday...until I took my oldest to swim.

Two weeks ago Sam took our youngest to his swim class who also happens to be with Sonzee's coach Ed.  He mentioned to Sam the pink float that he really only used with Sonzee was in the same spot since the last time she used it.  He mentioned he couldn't bring himself to move the float (thankfully no one else has either).  I get it.  Sonzee's pacifiers and glasses still hang in the same spot since the last time we removed them from her.  Her backpack still hangs on the feeding pole, her cell phone we used for seizure tracking hasn't been moved from the pocket in her bag, I honestly doubt it is even on since it has not been charged in close to a month. There are just some things that take time.

I have been to swim multiple times since Sam told me about the float, but for some reason, I didn't think about it any of those times.  Then yesterday, I took my oldest to her swim class.  I sat down in the same chair I always sit in facing the pool, just sipping my iced mocha, and there it was, the pink float not on the hook, sitting in a crate staring at me.  It wasn't up on the hook, it was just sitting in the crate waiting for "the next time" it was going to be used by Sonzee.  Clearly, a lot of us were just not ready for no more next times.  I don't know how I will feel when the float is eventually put back up on its hook, but seeing it in the crate and realizing she hasn't been at swim in 6 weeks made the tears fill my eyes. 

Having the float down helps my heart to know how loved she really was, it is a clear reminder that I am not the only one missing her or feeling a void.  I guess a lot of us are just not ready to accept that she isn't coming back.  Or maybe it is just that we know that she isn't, but we would rather not have things constantly remind us of that fact.  Maybe for now it is better for some of us to keep some things the way they were so we can have more moments where we are fine. 

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.

Wish I could...

On Saturday night my three oldest children and my nephew who is only 7 months older than Sonzee had a much anticipated, by all, camping sleepover in a tent in my parents' backyard.  The kids planned this sleepover weeks ago, my father has been eager for it to happen (probably) literally forever, and no one was more excited that Shabbat ended then all of these participants.  I loaded the 4 kids into the car filled with backpacks, stuffed animals, pillows, books, games, and an overabundance of energy and excitement.  I had a quick detour with our middle daughter so the initial drop off occurred and we returned about an hour and a half later.  Despite returning twice, neither drop off included Sonzee, she was at home seizing in her room.

During my second return I popped in for a bit to steal some dinner, grab a smores, and take some adorable pictures, but didn't want to take away the kids parent-free, way too much candy, junk food, and Gatorade, typical grandparent spoiling grand event that was occurring, so I left shortly after I arrived.  I returned home to two little people tucked into their beds, and within 30 minutes Sonzee's pulse oximeter began ringing.  I am partially relieved she is back to these atrocious seizures because when it begins to ring it is a guaranteed seizure when it alerts, there are no false alarms, and no wondering if we might have missed one.  6 minutes and 5 seconds later she was finished, I tucked her back under the covers, I disconnected her from her tube feeding because the pump was ringing they were finished, I checked her central line, made sure her TPN/Lipids were not leaking and everything was secured, gave her a kiss and walked out of her room.

After I got ready for bed I opened this mindless candy crush meets decorating game on my phone that I play religiously at night before I fall asleep.  I stared at the start screen frozen as if I forgot how to press the green play button staring back at me.  My mind unable to turn off, was unable to forget the fact that Sonzee should have been tucked into the tent in my parents' backyard with her siblings and her currently same-aged cousin.  I cannot tell you how often I forget her cousin and her are the same age for 5 months and 5 days every year.   I cannot tell you how often I forget that Sonzee is a school year away from Kindergarten, the same grade her middle sister is graduating from in just a few weeks.  Of all the things I constantly forget about her, I wish I could forget that her age puts her perfectly alternating with her cousins and that she should be at their school having recess with her older and younger cousin.  I wish I could forget that she should be having a 1:1 sleepover with her bubbie and pop-pop when they are in town, that she should be having play dates with her cousins and annoying her sisters when they have friends over.  What I really wish is that I could forget everything that she should be doing if she had only had a functional CDKL5 gene.

So it begins....

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

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

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

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

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Hollow

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

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

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

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


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Cycles

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

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

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

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

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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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Mommy-ing

Sonzee's baby brother turned 4 months old last week, and I wish I could say I am enjoying every minute of the experience, but that would not be the complete truth.  After you have a child following your child who falls under the category of "rare" it becomes challenging to accept the "typical atypical" baby behaviors for what they are, and not for what they might be.  So here I find myself sitting at my computer watching videos of my first daughter when she was 4-5 months old after spending the entire day sending videos of my son to his pediatrician, two good friends, and panicking to Sam that things are not right.  

It was on my 7th video of watching my oldest doing everything similar to her youngest brother, yet vocalizing significantly less, that I wanted to cry.  I sent two different but similar texts, one said "I want to go back to being that mom", the other continued to say "...the mom you sadly never got to be and the one I miss being.  The one where her baby does everything [Sonzee's brother] does and even more questionable movements but the mom who had zero [expletive] clue about rare".  Then the tears could not help themselves, because this is just too much to keep inside.  This is not how it should be.  

No one should know raising a child with CDKL5.  I have always been grateful Sonzee was baby #4, I got to experience my naive mommy-ing moments.  The negative is that I am aware of how my mommy-ing was different, I know the type of mommy-ing I am missing.  Despite my son's congenital heart defect, there was nothing that prepared me for the situations CDKL5 has brought to the table.  I wish I could go back to being the type of neurotic mom I was with my first, because CDKL5 has brought me to an entirely different level.  

Every day I wake up and tell myself that my son "is not seizing", "he makes eye contact", "he has an adorable laugh", "he smiles at everyone and everything", and "he is fine".  But then there is a picture posted to Facebook of another child his age doing something he is not that I did not even consider he should be, or there is a momentary flashback of Sonzee at his age doing the same "weird" movement, and the panic washes over me in an unstoppable manner.  There is no rationalizing with me, or convincing me otherwise, because I am sitting here waiting for the shoe to drop.  I am so confused between my actual gut feeling, nerves, and the potential to journey down a similar path of Sonzee's with another child that it makes me nauseous.  There is something to be said about the carefree first-time mom of a typical child, the one I will not ever be again, and sadly, the one I never realized until now, I once was.

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It is not the same

Sunday marked the official beginning of "Birthday Week".  To be honest I still have not decorated the chalk board wall in the playroom, and I have yet to hang the birthday cupcake door sign.  Birthdays are a source of excitement in our house, it is one of those things I pride myself on.  The joy that comes from the birthday child is easy to feed off of and something that helps hold me accountable for "birthday week" follow through.  Besides me saying that it is "birthday week" Sonzee is not showing any source of excitement.  She doesn't run to the playroom to see that the wall is ready for her to pose for pictures.  She doesn't ask who the presents on the shelf in the garage are for.  She is not able to show if she is even fully aware that it is her birthday this weekend.

I have no idea why, but the weight of all these events and milestones have been much more challenging for me to accept recently.  Maybe it is because 3 is typically that age where a lot of things just click for a child.  It is the age that represents so much change, so much more "maturity" than the first years of life.  It is the year that all those amazing personality traits develop, and that individual personality becomes more known.  Sure, we have a glimpse of Sonzee, but sometimes I feel like I am completely off the mark.  I often wonder if her eye rolls and head turns are not sass, but rather just her oculomotor apraxia and muscle weakness?  

I have been watching videos of her first years of life, she was so happy her first year, so full of smiles and life.  If she could be stuck in a Groundhog Day for a year I would choose that first year of her life.  The year before her EEG background turned to hypsarrhythmia, before her seizures became so much longer and so much more often, before we really dealt with her GI issues, before feeding tubes and the ketogenic diet, before her ridiculously high 2-month steroid treatment, before multiple medication changes, before we started to really gamble, before she lost her true Sonzee happiness.  I think my heart hurts worse now than it did then, and I remember thinking that was not possible.  

I am going to get her wall decorated, and before this post is published the cupcake birthday sign will be hanging on the front door.  The final items for her birthday dinner will be delivered tomorrow and by Friday night the tables will be set, and the house will look like a party city.  Sonzee's siblings will be my source of birthday week motivation and Sonzee will have no choice but to embrace this celebration and know it is completely for her.  However, for tonight, I am going to take a brief pity party time out and cry over all the things she and therefore I miss out on all due to CDKL5.

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How? Why? When?

Seizures have been consistently horrific since their debut (again) after the brief VNS miracle wore off back in July, however, this month it appears Sonzee is about to break her personal monthly record.  With three days of January still remaining, as of Sunday she was tied for October and December with a minimum of 415 minutes spent actively seizing each of those months...that is at least 6.917 hours.  Those numbers do not represent any questionable activity or brief spasms (even in clusters).  She has required at least one rescue medication a week since October, and we are extremely conservative with giving her those.  I am at a loss for words, I really do not understand, how does this happen? when is this horror going to stop? what is left for us to do?

I know this is what life is when CDKL5 is the diagnosis, but I am having such a difficult time accepting this for Sonzee.  She hardly complains except when the seizures are so horrible for her that they cause her to whimper afterward.  She puts up with every episode like a champ, sometimes even continuing on with whatever activity she was previously doing rather than falling asleep.  Regardless of how she handles each one, none of them are okay, none of them should be happening.  Why won't they just stop?  Why won't these medications we throw at them actually work?  Why is there absolutely nothing we can do for her?

I have become so used to seizures being part of our daily routine, their shock value has become nonexistent to me despite how dangerous they are and can potentially be.  I vividly remember the days when I wondered who would let their child seize 30 seconds much less 2 minutes before administering a rescue medication like the directions stated.  Now I wonder how I could possibly give her a rescue med at only 2 minutes when she will typically stop on her own around 5-6 minutes.  I have found myself saying, "what's 10 minutes?"  Are the addictive properties better or worse than the potential brain damage she could be experiencing?  Her brain activity isn't typical regardless, so I would prefer she not be exposed to more medications and so the clock can tick on. 

I wish someone could tell me how any part of this should be considered normal?, or why she continuously has to suffer? or when it will stop.  If I could have one wish granted it would be for her to wake up and have a functional CDKL5 gene, but until then I will continue to wonder how? why? and when?


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Do not want...

Between Christmas Eve and Christmas as I scrolled through my Facebook news feed I was met with 100's of sweet family pajama pictures.  I absolutely love watching my friends’ families change and grow over the years; each picture I see brings a smile to my face and for a moment I wonder how on earth time has flown by so quickly.  So many of the pictures were posted in our CDKL5 support page and while I may not personally know these families, I know more about them than some of my closest friends' children.  They posted their pictures with a blurb, "Wishing our CDKL5 family a Merry Christmas" or "From our CDKL5 family to yours..." thrown into the mix were those with well wishes to the families in the hospitals, pictures of her CDKL5 siblings on various breathing equipment helping them to survive their colds and infections.  I was nursing little man and Sonzee was in her Rifton chair participating in her typical hand stereotypies, making her noises that express she is not exactly comfortable and the tears filled my eyes.

I am so grateful for so many of the parents who have become more than just people on the Internet.  I am so thankful there is a place to go that has parents who get it in a manner that no one can unless they have a child who has a CDKL5 mutation.  It is a place that when someone types "I am so sorry you are going through this", you know they aren't just words and that they understand the depths of whatever the current struggle is.  I truly am appreciative of our CDKL5 family, but honestly, I HATE that we are part of this family.  I DO NOT want to understand anything CDKL5.  I DO NOT want to know about seizures and the side effects from being on anti-epileptic drugs.  I DO NOT want to witness so much pain, grief, and sadness.  I DO NOT want to HAVE to celebrate inch-stones.  I DO NOT want to know family support groups like CDKL5 even exist.

On December 15, 2010 on the "on this day" memories page on Facebook was a status I wrote that said, "I know G-d only gives people what they can handle, but some things no one should have to handle".  At the time I could not have predicted how true my own words would circle back to express my current disposition in such an exact manner.  I know this journey was given to Sonzee and our family for a(n) (unknown) reason.  I have to truly believe I can handle it in its entirety, but personally, I feel this is just one of those "life experiences" that no one should know anything about.

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Disappointment...again

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell myself to be realistic, but to be honest, this is the one time of the year I actually feel extremely optimistic that during these four weeks there is no reason why she cannot progress leaps and bounds when there is nothing else to do but work with her.  Then the summer begins and the hours of each day pass by, the days turn into weeks, and I am left realizing that my fantasy of Sonzee gaining substantial ground is just that, a fantasy.

The scenery has changed, the environment is different, but the effect of CDKL5 is and always will be the same.  The seizures perform their daily havoc, actually, they are pretty much the only skill that she seems to make advances with.  Just 5 weeks ago she was having small little questionable moments, and now twice a day on average she has undeniable episodes.  I do not know when I will truly realize that we are not ever going to beat the seizures.  There is no magic potion to wave them away, and deep down I really do know this.

Her jumper is hanging in the doorway here in our townhouse and her stander sits by the wall.  Both have been used twice.  The Upsee has spent the entire time hanging in a bag on the laundry room door, my desire for us to walk together for 5 minutes a day has yet to be met.  Her bike sits by the fireplace next to a basket of toys she has zero desire to play with despite the various attempts her siblings and I make to get her interested.  Essentially, nothing has changed except my feelings of defeat are far more pronounced. 

It is the moments like these that I realize that even though I thought I had lost my hope with her, it was there, hidden away in a small space in my heart and mind, hoping to prove the majority of my heart and mind wrong.  In the end, all it does is leave a pain in my heart, a fog in my mind and it solidifies why it is I really dislike everything that surrounds the word "hope". 

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I wish...

Sometimes I wish I was a better, stronger person.  The type of person that so many special needs parents are.  The type of parent who is content with their child's progress simply because she is doing her absolute best.  The type of parent who not only finds the blessing in the life that were handed, but also appreciates it to the fullest degree.  The type of person who is not bothered by the fact that other children with their child's diagnosis have it easier or are capable of so much more.  Sometimes I wish I was a better, stronger person.

Sometimes I wish I could look at this all as a "gift".  That I am fortunate because my life now has a purpose and plenty of people live their lives without knowing what theirs is or was.  I wish I was one of those people out there who not only says or thinks that, but one who actually believes it.  I wish I did not feel like I have absolutely no control over anything in my life anymore, but more importantly, I wish I was okay with that.  I wish I could look at this all as a "gift".

Sometimes I wish I had more faith and more hope.  I wish I had more trust that things will work themselves out, and maybe even in a positive manner.  I wish I believed that even if the outcome turns out not to be what I had planned or envisioned that it is what is for the best.  I wish I had it in me to be okay with it all.  I wish I could be like so many other parents who just accept everything is what it is.  I wish I had more faith and more hope.

Sometime I wish I had four healthy children and was never introduced into this world of special needs parenting.  I wish I was not aware of the intimate details of rare disorders that happen as "flukes" or any genetic mutation for that matter.  I wish I could go back to the way it was when I had that new parent ignorance and just the slight fear that a life like this could happen to me.  I wish I did not have to try to mentally prepare myself for all the possible turns this journey might take, because honestly it is futile and the preparation will always be inadequate.  I wish that things were different, and I wish I had four healthy children.

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Resistance

It is the second week of February and this will be my third official post of the month.  I would like to say it is because I do not have much to write about, but it is more that I have no energy to put onto "paper" what is circulating in my mind.  It is partly because I am sure I could go to the search bar on this blog, type in a few words and voila, my exact thoughts, feelings, and words will be staring back at me.  I am beginning to realize that is just going to be how life works when dealing with CDKL5.  The seizures come, you throw out your best weapons, sometimes you win, more often you lose, but no matter what, you end up back where you started...in your arsenal staring at the walls and debating.

For 14 days, we have been trying to gain back some semblance of control, for 14 days she has had 1-3 seizures a day, for each of the 14 days she has spent an average of 4-12 minutes not in control of her body, for 14 days we have yet again failed her.  Feeling like a failure in this department is absolutely crushing.  There is nothing I can do personally to stop these things from coming.  There is no way to explain to her that we are trying our best and that our best will not ever be good enough.  It will not ever be good enough to just try to find a solution, and there is no solution for refractory epilepsy.  That is why refractory epilepsy is also known as uncontrolled, intractable, and drug-resistant epilepsy. 

There is no positive spin to put on seizures, no silver lining or ray of sunshine.  There is honestly nothing good that comes out of watching your child suffer and being unable to put a stop to it.  It has been two years since I knew things were not right, and while I am numb to the experience of watching her seize, and to the seizures themselves, I am not anymore okay with the feeling of daily defeat that goes with all of this.  I know I will not ever be, I do not think any parent could be.  I guess it is only fair that she is not the only one resistant to something.

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Sippy cups and such

I've always considered us fortunate that Sonzee was our 4th child and 3rd daughter.  After all, that left us with three typical children and two other daughters who we could get all the standard girlie experiences with.  I have always felt that by having all four of ours we are "well rounded" because we get to experience all that parenthood and life really does have to offer.  In the past 23 months, I have never felt that I was missing out on anything because I have other children who fulfill those potential voids.  Our oldest is on the competitive dance team, she gives us a run for our money in all ways as we continue to use her as our guinea pig for learning how to parent.  Our son is into ice hockey and is our one big man on campus, so we get to learn the ropes of parenting a boy with him and all the thrills that are sure to come with that.  Our third has been rightfully nicknamed a spitfire and if you know her you are smiling at this reference because this just explains her completely.  A fun little independent ball of spunk who continues to show us we still don’t have a clue at this parenting gig.  With these three you can imagine the thrills and experiences we are getting as parents.  Getting to live through all my older children's activities, personalities, and experiences has always been "sufficient"...and then there was this past weekend.

When you have a typically healthy child who rarely gets sick, but then does and she wants to cuddle and you are already sick you just throw back the covers and invite her in.  As I laid in bed on Saturday morning with child #3, she asked me for a drink of water so I got up and went into the kitchen and found a Frozen themed sippy cup with a pink lid that I knew didn't spill or leak and brought it back filled with "cold water".  After she drank from the cup she started to talk.

M: "This is Laeya's Frozen cup, hers is pink, mine is purple" E: "Oh ya you are right this is her sippy cup" M: "Where is my purple sippy cup?" E: "You know, I am not sure where yours is" M: "Mine has Ana and Laeya's has Elsa" E: "When we feel better we will have to look for your purple Ana sippy cup".

Halfway through the conversation is when the new "aha moment" hit me.  It was as I continued to lay in bed while she drifted off to sleep that it really sunk in.  We can give Sonzee a device to communicate, and maybe (hopefully) she will eventually be able to say (or use her device to say) multiple word phrases to indicate her wants her and needs, but we most likely will never have a conversation about various sippy cups just because.  We won't be sitting in silence only to have it broken by a random conversation of her telling us that she would prefer a Shopkins or Pony birthday party in three weeks when she turns two.  There are so many conversations I realize now that I never thought I wouldn't be having with her.  I have always believed Sonzee's birth position to be a blessing, and yes there is still much belief in that, however, I never considered had she been our first or our only that I wouldn't be aware of some of the things that I would be missing.

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Tough times...

It's another one of the times while on this journey that I don't dare think "it can't get worse", but rather wonder what exactly it will look like this time.  Whenever the incessant crying begins things always go down hill and rather quickly.  Maybe it is because I am grappling for something to hold onto that makes the fall feel that much quicker or maybe it is just that my patience and ability to cope at this point has evaporated even faster.  This. Is. Hard.  (Yes, I did just write one word sentences)  I never assumed that it would be easy, but I didn't really understand this version of hard.  Sadly, there is a mom reading this with a tear in her eyes thinking..."you have no idea".

This is such a painful journey.  It hurts on a physical and emotional level like nothing else and sadly there is no outcome that could change that.  I cherish the days that are good and result in Sonzee smiles and giggles, just as much as I loathe the ones spent on hours long crying sprees.  It is beyond horrific to have to see her be in such agony.  The worst part is there really is nothing we can do...we are doing everything we can, it is just that nothing is good enough, nothing works for any acceptable amount of time.  I dislike that everything with CDKL5 is trial and error, I want the "tried and true", the "sure thing".  Why doesn't that exist?

I would say "I don't know how much more of this we could all take", but I know that we will take it for as long as we have to and for as long as this is the best it can get.  I just really really hope that a happier alternative will emerge sooner rather than later.


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Battles

It is Monday afternoon and I am exhausted.  It was yet again another sleepless night with little bear and her constant screams of pain.  It is beyond frustrating that whatever remedy we find for her works only temporarily.  Her GI doctor has called in another antibiotic that helps with balancing out the bacteria in her gut and her palliative care doctor has told us to go ahead and increase her Gabapentin for the pain.  The GI and neurological systems are so tightly woven that in Sonzee's case the slightest bit of GI movement sends her nerve endings into a tizzy.  I was so naive to think that if we could only control her seizures that her life would be smoother sailing.

Her life is a series of battles.  Every time I think we have tackled one successfully, another one begins.  There is no time to celebrate and there is nothing it seems that we can do to prevent them from happening.  All of these battles keep continuing back to back and we are running out of supplies, I am running out of energy, and my sanity is on the verge of nonexistence having to listen to screaming and crying for hours on end each day.  It is taxing to keep living like this.  I honestly do not know how little bear does it, how do any of these children do it?

I remember when seizures were our biggest fear and threat.  When I thought nothing could possibly be worse than watching her have multiple ones a day.  I was wrong.  What is worse than watching her have constant seizures is having her be miserable screaming in pain for the majority of the day and night.  It is far worse having her cry and me not being able to do anything for her but just listen.  I cannot fix this.  I won't ever be able to fix this.  All of these battles, and there is no chance of ever winning the war.


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