Becoming wise

I have always been a type A person, and one of my biggest challenges is relinquishing any type of control.  Add that trait to having a medically complex Sonzee where a slip up in the majority of her care could result in catastrophic results, and well you get a neurotic, anxiety-ridden, overprotective, helicopter mom Randi.  I would say it sounds like it could be a good thing, but rereading the previous sentence, it sounds just as crazy as it is.  The reality is that on one hand, it really is a good thing because when life depends on not making mistakes or following procedures specifically, you need to make sure there is one person in charge, the downside is that then it falls to one person, and the fact is, there doesn't have to be just one person doing it all.

Yes, there is a specific protocol for some of Sonzee's medical care that does require a specific set of directions to be followed.  Does that mean it has to be done in the same exact way by every person? No.  Does that mean if it is done slightly different than it is wrong? No.  Does that mean that I am ok with the slightest alteration of my perceived only way? That would be a BIG FAT No!  The truth is, as long as the main components are followed, in theory, she will survive with someone else performing the care, and raw truth time, the fact that I have made it so I have to be in total control has placed an unnecessary burden on me, and created a situation where I am more apt to make a mistake than someone else.

Coming to this revelation over the last couple of months has been both scary and refreshing.  Caregiver burnout is real, it exists, and it can be dangerous for so many reasons.  There is a reason jobs come with paid time off.  There is a reason for fall, spring, winter, and summer vacations.  Everyone needs and deserves a break.  Everyone needs a chance to rest, recharge, and be given the opportunity to come back to work with a fresh pair of hands and a clear set of eyes.  I can just about promise that the majority of moms of special needs hardly consider the fact that they really really really need a break.  But maybe if we all realize it honestly isn't even just for us, but for the well being of the entire family unit, it might be considered more often. 

Now realizing this truth and doing something about it are totally different things, but awareness is key and knowledge is power.  So like everything else I have learned on this journey, it is the inchstones that count.  So this morning while I write my blog post sitting at my best friends kitchen table in Florida while drinking a venti Starbucks coffee, I trust that I have left Sonzee in the most capable hands, with an immense amount of love, and I did it so that I will come back to her better than I left her, with a refreshed point of view and some solid hours of sleep to carry me through until the next time I am wise enough to know that I too need and deserve a break.

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.

May 23

May 23 seems to be a difficult day every year.  It is really odd considering it is the birthday of Sonzee's middle sister, so you would think it would only be a day of complete celebration, but that is mainly the reason that it is not.  This date every year has become one of those reminder days.  A day that reminds me of how much our kids, especially our 3rd have had to sacrifice since the birth of Sonzee.  A birthday that was celebrated only one time before Sonzee was here.  Which means this year it has been 5 middle sister birthday's that have gone by since.  Which equates to essentially her early childhood years (and even her birthday itself in 2016) have been spent in and out of hospitals as a sibling in tow.

Sonzee's middle sister has always taken the role of big sister seriously.  Prior to even turning 2 or being potty trained, she learned how to identify and notify us of Sonzee having a seizure.  That means on top of the typical things she has learned over the last 6 years, she has spent over 4 of them gaining medical and life knowledge she should not be exposed to.  Due to her being so young and not not in school in 2015, she was the only sibling to see Sonzee outside of the NICU the day she was born before she was sent up 2 hours after her birth.  She bonded with her in 2 different NICU level nurseries and in 2 different hospitals before she celebrated her 2nd birthday.  There are numerous pictures and videos of her kissing, coddling, cheering, dancing, and playing with her.  These captured memories make me so happy to watch and yet so sad because they aren't showing what should have been typical sisterly bonding moments. 

Each year on May 23 I am reminded of how many years have truly gone by.  It is the first immediate family birthday after Sonzee's.  It is the birthday that not only ages her middle sister but also ages Sonzee.  It is the day that I am forced to realize how old everyone in this house really is.  It is the day that falls at the end of the school year where we say aloud how crazy it is that each child is going into grade xyz next year, thus making it unavoidable to realize that where Sonzee is going physically does not match up to her developmental status. May 23 is a day we recognize another journey around the sun has occurred for our middle daughter, we accept that it means it was another year she was forced to grow up sooner than we had planned, and it is just another day that CDKL5 barges in and makes itself known in a random and unexpected way.

4 years and 2 days ago

If you have followed Sonya's Story long enough then you are aware that when I am in need of inspiration or unsure of what I want to write I will read back on previous blog posts.  I typically look back to the same month but different year to see what post I wrote exactly on that day.  So last night I  opened the archives of May 2015 and glanced at each post from the end of the month towards the front.  I saw the title Dear Sonya and since I couldn't remember what I wrote in that letter, I opened it, I read it, and since multitasking is my thing, I cried.  It is fascinating to me that 4 years and 2 days later those exact words would be the same words I would write to her in a letter today.  The pain is the same, the dreams and desires are the same, and the fears are the same. 

4 years and 2 days later the same is true about her doting siblings, except there is one none of us ever met and another one who competes to be her biggest fan.  We have continued to do our best to ensure her quality of life leads every decision we make.  While we have found our secret language with each other it does continue to be a daily struggle making sure we are really honoring everything she wants and not our assumptions.  I feel fairly confident that we are living up to exhausting all medical interventions to help make her life easier.  I wish we could say that we found a way to make the seizures stop, we haven't, however, we have done our absolute best to stick to our promise to not medicate her personality away. 4 years and 2 days later we are still filled with the same doubt, same questions, and same exact sorrow.

The letter is a reminder of all that we lost when we were told of the mutation on her CDKL5 gene.  It is the realization that the time on this journey continues to pass us by, but not much else has changed.  We still pray for the same exact outcomes that we did 4 years and 2 days ago, but the naivety is no longer present, the belief in hope not as strong, and each day is a fight from within to remind myself that we are doing our best, that we aren't failing her, and that "It is not going to be easy, it is going to be a tough road, some days will be a struggle, but WE ARE GOING TO MAKE IT."

Muddled thoughts

I started to write a post the other night after I came across a picture of a child younger than Sonzee diagnosed with CDKL5 who was sitting.  I couldn't shake the feeling that came over me, so I opened up blogger and scribbled down my thoughts.  In summary, it was happiness panged with being envious that Sonzee's mutation was not affording her the same capabilities.  Naturally, life got in the way so I have not had a chance to finish those initial thoughts.  Then today, completely unexpectedly, it was me witnessing and then posting a video with 13 seconds of my child with CDKL5 sitting.  It wasn't pretty, it wasn't the way any of my typical children began to practice when they were 5-7 months old.  She was completely wobbling, her body awareness was completely off, she required multiple touch cues, and she fell over every single attempt, BUT she sat.

I hesitated about posting it, even though it is only 13 seconds, it is 13 seconds longer than so many children diagnosed with CDKL5 or other various causes to their medical complexity have been able to do.  While it by no means can count as hitting the milestone, I am feeling a pang of milestone guilt for the other mother's who have not experienced these 13 seconds.  I still cannot leave her on the floor to play, sit alone on a couch, put her in a shopping cart, or place her in any other situation that the majority of parents of 6-8 month children get to celebrate doing, it is 13 seconds longer than I expected at this point in her life, and 13 seconds longer than some of my special needs mommy friends haven't been afforded. 

4 years into this life and I feel like I am still figuring out how to make it all work.  The desire to celebrate milestones met by our children's friends, yet silently mourning the fact that our child can't or won't meet them.  The desire to want to celebrate our child's accomplishments without making another parent cry themselves to sleep because of it.  The doubt we feel about what we are doing to support our child when another parent says all that he or she has their child participating in.  The wondering if what we are doing is ever enough.  The confusion of if our choices are right or wrong, and if those choices are the causes of the negative outcomes that ensue.  And the ever-present, always lurking question of despite what we may or may not have our child try, despite them ever officially meeting any standard milestone, does everything we do at least add up to a desired quality of life. 

It's been 4 years....

It's been 4 years and yet I was caught off guard on Friday.  I would like to say this is rare for me, but for some reason this past week, I have been experiencing all sorts of whacked out crazy sensitivities and emotions.  Maybe it is the accumulated exhaustion of participating in this journey over the last 4 years?  Maybe it is the fact that I prefer to not deal with a lot of my emotions because I tend to write a blog post about how I am feeling in that moment, press post, and then move on.  More often than not that way of living has seemed to work best.  But then there are those moments, like Friday where three concepts slammed into me at full force despite the fact that I have dealt with them multiple times over the last 4 years.

It became extremely clear to me on Friday that I am not over Sonzee receiving her CDKL5 diagnosis.  So for those of you just starting out, 1 year, 2 years, 3 years, 4 years or even more into hearing the string of characters "CDKL5" it is completely normal if you have yet to accept its fate or if today it is just clicking what it might actually mean.  As I sat with Sonzee's epileptologist and she answered the same exact questions I have asked every PEMU stay since 2015, on Friday, it clicked.  Even if we gain some sort of control of her seizures, which we all agree she most likely won't ever be seizure free nor will she likely ever be 90%, it won't change her background and it won't change the fact that CDKL5 is the reason she is able to do what she can and not able to be typical.

This led me into the 2nd revelation; the one where it becomes clear that even though I don't speak the words and I don't put much faith into it, somewhere in my soul I still believe there is hope for her, because it is during moments where I feel the wall slam into me at 500 miles per hour that I realize the slamming feeling is because I was obviously holding onto some sort of hope.  The hope that maybe one of these PEMU stays it will reveal she does not have an abnormal EEG background.   The hope that one of these PEMU stays will reveal she isn't seizing unless we notice and hit the red seizure button.  The hope that one of these days she will wake up and be typical.

Which led me to the final revelation that we are never going to fix her.  We appreciate who she is, we love her the way she is, but honestly, if you told me a specific amount of money would make her be able to become a typical child, I would pay it plus a tip.  I do not know why all these 3 items became clear on Friday.  I have heard the answers before, I am sure of it, and I do not know why, but for some reason, it all clicked and since then it has been weighing me down like a ton of bricks.  I am having an extremely difficult time comprehending that nothing we do for her will ever make her better.  No medication is going to stop her seizures, no medication is going to clear up her background, and no medication is going to fix her...but for some reason knowing this we still cycle through medicine cabinet trying to find the answer....and it's been 4 years.

Sacrifice

Last night our middle daughter was calling for Sam at bedtime because she was waiting for him to read her a book.  I was getting Sonzee's TPN supplies put away, giving her meds, and getting her ready for bed.  I let our daughter know he would be there in a minute.  During the time she was waiting, the other two elders called for him as well.  It doesn't make me angry that this has become the norm, it just is how it is.  But the moment flashed a memory in my mind of a time, that seems to be from a completely different life, but was just a few years ago.

There used to be a time that bedtime took hours because each child chose a minimum of 2 books and both Sam and I took turns going from bedroom to bedroom.  There was tickle time, laughter, talking, and books.  There was "Emmmmaaaa" being called and I was the one who cuddled next to each of them and endured the 2-hour long ordeal.  Sam and I joked about the length of time it took but also felt it was so ridiculous....I think about it now and cock my head to the side as the word perspective flashes brightly in my mind.

Since February 11, 2015, bedtime routine has never been the same.  Children certainly adapt to the situations they are presented, but it comes at a cost, and the price in this situation was their ability to rely on my presence.  In the beginning, it was hard on all of us, then at some point during all the hospitalizations, it became their norm, but for me, remains a constant heartache.  Each night when they ask for that extra kiss from Sam, for him to read the book, or for him to come back in, it is a reminder of all the nights I haven't (and won't) be there, and for the sacrifices that come living the medically complex life.

Rerun

We are more than halfway finished with weaning one of Sonzee's seizure meds.  There is always the initial joy of watching skills return to her that we had somehow forgotten she once had, then there is the brief, but still, present sorrow that presents itself when we realize our choice of medicine is the reason the skills were put on hold.  Pair that with the fact that her seizure presentation was not significantly reduced or impacted by the medication, and knowing that our PEMU stay is going to present another medication as the (what is most certainly not going to be a) solution, and well, that continues to be Sonya's story.

This cycle of repetitious history you would think would make us wiser or at least pave the way to a clearer outcome, but for some reason, our continuous game of groundhog day meets real life is not changing.  Then there is the worst part that we somehow forgot happens when Sonzee is in a medication fog and it becomes temporarily lifted, her endless battle with her GI system.  The whimpering and pain that had seemed to subside, that we were optimistically thinking her gut rest had aided seem to be popping back up here and there.  The Aha moment always catches me off guard, takes me a day or two to actually realize I am entertaining and then smacks into me like a ton of bricks.  The question presents itself, "Was the gut rest and TPN the answer to her pain, or was the increase in her seizure medication masking her ability to process it?".  This answer, like every other one that is asked that would require her to be able to give us the answer, will always remain one of those unknowns.

The potential defeat that would come if the answer is the medication was masking her response to the pain will be so soul-crushing I am not yet at a place to fully even entertain it.  The potential disappointment that would follow if the answer is that the solution was yet again another failed bandaid will just be completely deflating.  Either way, the situation remains "wait and see", the question will soon enough become, "now what? ", and the answer will be whatever is feeling best for us to do for her at that time.

Humbled

She had two of her long seizures and too many of her cluster seizures to count.  She spent her day awake, wringing her hands, clapping, pushing her glasses off of her face, and content.  She didn't cry in pain at all and she not only stood in her gait trainer, something she has not been afforded the opportunity since the fall, she also took multiple steps.  She was proud of herself, you could see a smirk across her mouth, a look of satisfaction in her eyes, and just sheer joy come over her entire face. Her ability to literally make the best and most of her days, albeit her brain misfiring for over 25 minutes a day has me sipping my coffee in complete admiration as I'm reflecting on what she endures daily.

As her mom, I over analyze every minute of her life in general, but it wasn't until I was staring at her seizing awake from her sleep at 10:45pm that I truly comprehended how incredible of a human being she really is.  I readjusted her pulse oximeter while she seized, her values thankfully staying stable, and I was filled with this feeling of heartbrokenness mixed with complete awe.  Just hours before, we were challenging her fragile, and I am sure exhausted body, to do things the majority of us haven't had to think about doing since we were between 12-24 months old.  She rose to that challenge, she smashed the ball out of the park and gave me renewed faith in her desires.  Then she participated in a girls only dance party after dinner and didn't complain when we didn't move her into her room until after her typical bedtime.  Now here she was convulsively shaking, her limbs contorting, her mouth quivering, her eyes rolling all over, her head thrusting forward and then abruptly pulling back, and this is what she does all the time.  This is her life.

During these moments when I am reminded that her life is not about me or my feelings, or how hard watching her go through it all is, or what her missed milestones mean for me; I feel this overwhelming sense of pride and adoration towards her my heart could physically burst.  I always suspected she would bring me similar joy and delight as her siblings, but I was not sure what it would look like.  I now know that there is nothing that could make me a prouder parent than watching her literally fight to give herself a self-determined quality of life on a daily basis.  For this, I will forever be humbled.