Sunday, December 31, 2017

2017

As 2017 is hours away from coming to an end, so is yet another chapter in Sonya's Story.  Sitting here reviewing the past 365 days in my mind takes me on a virtual roller coaster ride complete with flashbacks.  It is always amazing to me how quickly the time has flown but how slow it feels like it is moving at the same time.  Just a year ago I was sitting at my computer writing 2016's end of the year post without a brand new baby in my arms, unsure of the trajectory of 2017, but hopeful because as of press time 2016 Sonzee was seizure free 71 days 8 hours and 26 minutes and she was alive after a touch and go 2016.  Her seizure control would last another 10 days and over the course of 6 weeks we would slowly lose any semblance of control.

Her struggles this year were different than in the years past and while they didn't require many emergent hospitalizations, it is hard to say that the year was any easier.  She did have her fewest emergent hospitalizations with the longest stay being only 8 consecutive days and only a handful of scheduled inpatient stays throughout the year.  Her health overall was relatively stable and while we didn't receive answers for everything, we did learn that her stomach dismotility was not a result of Sam's or my decisions and just part of the luck that came with her CDKL5 mutation.  The jury is still out on if that brings me any sort of peace.

In 2017 Sonzee's CVI score remained unchanged from 4/5 out of 10, and we learned she developed optic nerve damage in her eye due to her 6-month stint on Sabril.  She wore her glasses regularly and we patched her eyes 15 minutes each every day.  Her physical development was mainly unchanged with some decreases in head control and overall strength.  While it is challenging to say if was due to her mutation limitations, medications, or seizures none of the above aided with her gaining skills.  She is still able to roll back and forth, but I leave 2017 slightly disappointed with how that turned out.

2017 was the year we lost complete control of her seizures, going from 310 episodes in 2016 to 595 episodes.  While numb to watching these episodes on repeat daily, this was the year the deep-rooted fear of "is this the seizure that takes her" mixed with the pleads of "please take all of this away from her" planted themselves into my mind.  It was the year we were forced to use her rescue meds for the first time, and (sadly) now have to use on a weekly basis.  It was a year Sonzee failed an additional 3 seizure medications, we had to finally accept CBD wouldn't be her miracle and she underwent surgery to have the Vagal Nerve Stimulator (VNS) implanted.  It was the year we essentially threw everything we had at her seizures and inevitably fell completely short.

2017 was the year Sonzee turned two and officially became a toddler thus entering the dreaded CDKL5 toddler years.  It was the year she received her first pair of AFOs and Spio suit, two items that will provide her body added support.  She was approved for a communication device and she communicated to us she loves Bruno Mars.  It was the year she went to the dentist for the first time, experienced her first cross country road trip, and met Harper's amazing family in person.  2017 was the year Sam made me realize that no amounts of physical or alternative therapies no matter how expensive, will change who Sonzee is and we decided to encourage her love of being in pool and stopped therapies that won't necessarily be beneficial to her.  


2017 was a year that trampled my spirit to the core and the year I wrote my fewest blog posts.  It was a year that tested every single aspect of my faith and left me with pieces of doubt and many questions.  It was a year that I wanted to admit defeat and just give up on trying to beat CDKL5.  It was a year that I constantly questioned who allows a child to suffer so often and in so many ways.  It was a year that left me feeling continuously broken and challenged to find any ray of hope.  As we close out 2017 I feel my strength has been depleted and just like turning the page to the next chapter in any good book, I will wake up tomorrow in the new year of 2018, eager to see what will be written on the pages ahead.

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Tuesday, December 26, 2017

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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Friday, December 22, 2017

When history repeats

They say "history repeats itself", I sadly don't need to look back on my December blog posts for the past two years to know this is true.  Every year (at least since 2015) around this week in December and into the early spring months, there has inevitably been at least one post asking for prayers for a CDKL5 sibling and their family.  I hate to say that I am numb to reading the posts, but sadly I know what this time of year brings to our small knit group.  It is too painful to accept, but this is just part of our "normal"; yet there is absolutely nothing about it that is normal. 

This time of year is supposed to be full of happiness, full of joy, and full of hope.  Yet there are so many families who are full of the fear this season brings, me included.  It is a time for many that is full of the fear of illness and of hospitalizations, and the unspoken fear that this might be the last holiday season our children will participate with us.  Many will say not to think in negative thoughts, to them I will reply these are simply the facts of living with a medically fragile child. 

Lately my heart feels suffocated by CDKL5.  I feel angry that a "simple" change in genetic coding can have such profound effects.  I feel betrayed in a sense that it was my daughter who was one of the "lucky lottery winners", and my family who has to know the intricacies of this type of life.  Every day finding the positives in living life knowing this string of characters is a choice I have to make.  I make this choice because it is what I need to do to survive, but there is so much heartache, so many fears, and so much grief.  Today I am grasping at the positives, but watching as CDKL5 history repeats itself is causing me to fall a bit short.



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Monday, December 18, 2017

I Did not know...

I had a lot of assumptions of how things would be with a new baby after having a child born with a rare and complex genetic disorder resulting in intractable epilepsy.  I imagined the Moro reflex would make me question infantile spasms and that any type of twitch, jerk, or shake would cause my heart to skip a beat.  I assumed that leaving the hospital without a NICU stay would be emotional, and that the fact my kids were able to wear their "big/little" sibling shirts would cause me some tears because we never got around to doing that when we had Sonzee.  I figured that at some point it would be bitter sweet as I watched Sonzee remain frozen in time and our new baby advance and meet milestones.  What I did not anticipate or did not know (how) to prepare myself for was the constant flashbacks and memory reels playing in my mind of Sonzee as our new baby does something similar to a seizure, but is just being a "typical baby". 

I can vividly see every seizure she had while in the NICU that had me on edge, but that happened too quickly for any medical professional to share in my concern.  I can clearly remember saying to my mom during that first week in the NICU that my fear was Sonzee was constantly seizing because of her wonky eye movements.  I remember when my dad told me "the thing about seizures is that you just have to wait and see".  I don't even have to close my eyes to see the video of Sonzee's seizure that won us her ticket to the PEMU at PCH at just 4 weeks old.  I can "play it back" in my mind on repeat and tell you every detail.  I know it is completely acceptable that I am on "red alert" with Sonzee's baby brother, but I didn't expect for every little similar movement to bring back the live playback of Sonzee front and center. 

Despite relying on the statistics that "it would be extremely rare" for another child of ours to have CDKL5 or even another de novo mutation, there was and is a constant fear lurking in the back of my mind about "what if"; after all, Sonzee is an extremely rare statistic.  There is nothing anyone can say that will calm the fears of the potential of rare occurring in any facet within our family.  Despite a friend of mine who has a 2 year old daughter with CDKL5 and an infant son warning me that things would be different this time, I shrugged the warnings off, because I am a seasoned neurotic mother and all but one (now two) of my children have been to a neurologist at some point in their lives for various reasons. 

I did not know that a simple sound, eye flutter, or body movement would cause my body to freeze and bring on a complete panic attack.  I did not know there were so many "weird" things that newborn babies can do, and I have no idea how I did not notice these with my first three, or did I?  I did not know there were so many ways to analyze "typical baby behaviors".  I did not know how scarred I am or how tainted my views have become due to life with rare and specifically CDKL5.  I didn't know so much fear circulates within my body that I bury on a daily basis.  What I did not assume or know was just how mentally challenging a baby after Sonzee was going to be.

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Thursday, December 14, 2017

Comfort

On Wednesday I took little man to his 2 week checkup.  As we walked into the room the nurse asked me if I had any concerns.  I paused for a moment as I formed the thoughts in my mind to attempt a coherent sentence aloud, and then muttered the words, "Concerns?  umm...I don't know if I would classify anything as a concern...nope".  We did the typical weigh in, head circumference, and height check, and then she said that our pediatrician would be in shortly. 

When our doctor walked in we engaged in our typical small talk and she looked over little man.  I don't know why, but every second felt like an eternity, as if her thoroughness meant she was going to tell me something was "off".  Besides commenting on his clogged tear duct and writing a script for some eye ointment, she never mentioned a concern.  Near the end of our visit I mustered the courage to bring up my "not really concerns, concerns"...

Me: "Ok, the "typical baby shakes" when do they end?" (I was relieved when her face said "you aren't crazy")
Dr. K: "Oh, those can be a couple of months",
Me: "Ok, because they are honestly making me crazy, even though they are completely different than Sonzee's 'shakes'".
Dr. K: "Well you can always send me a video"
Me: "You'll just tell me it's normal
Dr. K: "But if it makes you feel better..."
Will anything short of a PEMU stay, genetic testing, and time actually make me feel better?  Despite trusting ALL of Sonzee's doctors as much as I am capable of trusting a medical professional, words without anything tangible to back up claims will not calm my mind or fears.  Almost 3 years ago I told multiple doctors and nurses my concerns over my 20 minute old daughter and none of them listened.  The NICU nurses and doctors while amazing, never entertained seizures and Sonzee's original pediatrician also told me "you have a healthy baby" and "babies do weird things".  I don't fault any of these professionals, Sonzee is rare, early onset seizures are NOT typical, CDKL5 is NOT common; but besides having to rely on my (conflicted) gut, time, faith, and hope, I am not sure there is anything that will give me actual comfort.



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Monday, December 11, 2017

It's not just me...

Our lives forever changed when our Sonzee bear entered into this world.  It wasn't just mine and Sam's, it was also her two sisters and one brother who became immersed in a world of medical jargon, hospitalizations, and talk that is not exactly suitable for children.  They (as most children do) adapted quickly to our normal and made us as parents even more proud than we knew was possible as we watched them interact and include Sonzee in their sibling activities.  No matter what though, it never was the older sibling experience that they would have asked for.  Sonzee's oldest sister wanted (and still wants) nothing more than to hold her and walk around, or hold her hand and help her walk, or get on all fours and chase her around.  All of these experiences have just not been possible, and while sad, our oldest as resilient as anything, has made the best out of the situation.

When our oldest found out we were expecting this time she was so excited, I was so excited at the hope of providing her a new healthy sibling that she could tote around and interact with in a more typical manner.  Apprehensive but optimistic we answered her with "g-d willingly yes", and "hopefully that will be the case", as she asked if she would be able to do all the things she isn't able to with Sonzee.  Fast forward to 3am on the morning her baby brother was born.  She was too tired to sleep once she woke up and found our baby sitter in our house and so when Sam went home to grab some items the first question he was met with was, "Does baby have CDKL5?"

We did a screening during our pregnancy which indicated at 97% her baby brother does not have CDKL5, so Sam told her g-d willingly no.  I don't think I mentioned to anyone that our oldest asked that question because I was honestly so heartbroken about it.  I wasn't heartbroken that she was concerned or that she asked in general, I was heart broken because with her asking that question it showed me just how impacted she has been by her sisters diagnosis.  In her almost 8 year old way, she let us know she too is scared of her baby brother not being typical and or healthy.  I honestly can't and don't blame her, as a parent I am petrified of anything being "off" with this little dude.  It is just part of the everlasting scarring that is brought into a family once they become a rare statistic.

As my oldest holds the baby and he makes random, jerking movements more than once she has either stated "that looks like a seizure ema", or "is that a seizure".  I have to admit my heart skips a beat each time she mentions it, yet attribute it to any potential denial or overt confidence in my gut, but I assure her that "babies do weird things".  I am continually talking myself off the proverbial ledge of panic attacks, and have managed to have only 1.5 in his 12 days of life, I will take that as a success.  Thankfully our pediatrician understands and is quick to reply to my messages of panic.  I think it is going to take us all some time to accept that our little guy is (appearing) healthy and (g-d willingly) typical.  While there is some comfort that it is not just me, I so wish it wasn't my 7 year old who is laced with this same burden.

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Thursday, December 7, 2017

Adjusting...

It has been a week since we brought home our new little man.  A week of adjustments for Sonzee and for our parenting of her.  She has been receiving extra love while in and out of the Ryan House and we couldn't be more thankful for having such a facility to help us care for her.  Her seizures have continued to be atrocious and I have already sat on the floor breastfeeding a newborn while consoling her and simultaneously crying.  Honestly the weight of it all at times is a bit much.  I have found myself wondering "why her?" and "why us?" more often than not.  

I know this newborn stage will fly by for our little man and I am torn on wanting to cherish and pause every second of it all and wanting it to fly by to be a bit more manageable for myself.  My heart is in a constant battle with itself bursting with joy and sadness literally in the same seconds.  Watching little man perform a simple task of moving his eyes in a way that Sonzee never did, focusing on my face with the blank newborn look of curiosity, another thing Sonzee never did.  All these small little things that he is doing that had me on edge with Sonzee because "something just wasn't right".  My heart simply hurts for her, for what she must endure, for what she doesn't get to do, for what her siblings won't have with her, for what I can't change or fix, for what we missed out on together.


I know the next couple of weeks will involve a lot of tears, both happy and sad, as we learn how to balance our "new normal".  I know it will be filled with a multitude of smiles and some stings to the heart.  I know it will be filled with a mixture of doubt and worry, deep breaths, and confidence that things will work out positively as I slowly learn to overcome the fears brought on by having a newborn turn out to be a statistic.  I know this part of our journey is going to be filled with difficulties, different trials and errors, and a good portion of mommy guilt...but then I have to ask myself, what journey isn't?

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Friday, December 1, 2017

Facing Facts

I am sitting in my newly renovated master bedroom, listening to the musical sounds coming from a swinging baby cradle swing holding a 67-hour old baby boy, and diagonal from another newly renovated space whose occupant is currently sleeping downtown.  It is probably not a fair week to judge me on my emotions, but my heart is bursting at the seams and simultaneously broken into pieces.  Most of these emotions I expected, but then there are the others, the sneaky ones, the ones that I wasn't aware even existed.

We introduced Sonzee's baby brother to all his siblings when he was about 14 hours old.  He was sleeping and content and doing exactly what a typical newborn baby should be doing.  He wasn't hooked up to any oxygen or receiving any antibiotics, and he didn't provide me with that lingering feeling of "something just is not right".  Our oldest two children were beyond excited to run over to the bassinet and see him inside, while our third child was a bit nervous and reserved.  Then there was Sonzee, sitting in her wheelchair, kicking her feet, moving her body, and I wondered, "Does she know what's going on?".  I quickly moved on from that thought, because honestly what almost three-year-old really understands the gravity of what having a new sibling means?!

Each sibling took turns saying, "hi baby", patting him, and holding him, and before it got too crazy I wanted a picture of my 5 babies, so I gave our oldest our youngest and I snapped about 40 pictures.  My heart exploding the entire time as I sat with them all, and then it was time for everyone to go home and get ready for bed.  After they left I took out my phone and reviewed the pictures of the meet and greet.  They are some of my most favorite pictures on a whole, but then it hit me like running into a brick wall.  4 out of 5 of our kids were sitting on the bed, while Sonzee was in her wheelchair.  In that moment it was a colossal explosion in my brain.  

I could have 10 more children, but none of them are going to make her typical.  Did I subconsciously think that a healthy child would erase the last 2 years and 9 months of pain I have experienced by watching her endure all she has?  Did I think that a new baby would suddenly cure her of her CDKL5 mutation and she would get up and jump on the bed with her siblings?  Did I think the memories of her NICU stay and the initial unknown worry, panic, fear, and confusion surrounding her first hours of life would be replaced by a new experience?  What exactly did I think would happen when this little man was born (g-d willingly) healthy?  


When Sonzee was the youngest her experiences were removed from those of her siblings.  There are years between when she should have completed certain skills and the moments her older siblings mastered them.  When I see other children Sonzee's age it doesn't bring me pain, and I have 3 other typical children I can quickly swap out the experience with, so I am no longer focused on "what if that were Sonzee?".  I don't think I fully realized that by having these amazingly positive experiences as we move forward, I will now have to really deal with the pain and the heartache of what we never had and won't have with our Sonzee.



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Saturday, November 25, 2017

Epilepsy Blog Relay November Post: Creativity & Epilepsy: Poem

This post is part of the Epilepsy Blog Relay™ which will run from November 1 to November 30, 2017. Follow along!

I wish that the seizures would just stop and go away,
They always wreak their havoc whenever she's trying to play.
They make their grand debut in any manner that they please,
Resulting in a watch and wait scenario that causes all to freeze.

When the random jolts and movements have finally come to an end,
We sit and stare and process all that occured trying to comprehend.
Why do they keep occuring? How is this even right? 
It doesn't matter what we do, we seem to keep on losing this futile fight.

As parents we do what we think is best and throw everything we've got,
Medications, surgeries, alternative attempts, anything to give our kids a shot.
Some relief might be temporary but it never lasts long enough,
Thankfully our kids are resilient, brave, and extremely tough.

One day there might come a time when these events will no longer occur,
Unfortunately waiting any more time for this to happen is not something we parents prefer.
In the meantime we will keep on trying to do our very best
to put up with these episodes and continue on our epilepsy halting quest.


NEXT UP: Be sure to check out the next post tomorrow by David Monnerat at www.epilepsydad.com. For the full schedule of bloggers visit Living Well With Epilepsy Blog Relay.
TWITTER CHAT: And don’t miss your chance to connect with bloggers on the #LivingWellChat on November 30 at 7PM ET.
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Friday, November 17, 2017

A new form of guilt....

Within the next 2 weeks or so our little bear is going to become a big sister.  I am eager and excited about this new addition to our family, yet I have not even packed my bag.  (Full disclosure, I packed for Sonzee while in labor and running out the door).  I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body,  there is a cloud of guilt and sadness hanging over me.  I do not want to assume everyone who follows Sonya's Story understands the needs of a child like our dear Sonzee bear.  I do not want to assume everyone knows how much care she requires.  I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heartrate has skyrocketted (or on some occasions her oxygen has plumetted) and she is having another seizure.  She is dependent on every level.  She is unable to be left alone, she has to be buckled into swings and bouncers at all times.  She is unable to be placed on the ground in a seated position "for just one minute" so something can be grabbed.  She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn't eat in the typical fashion.  Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed.   She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child.  Her needs are that of a newborn baby, in all ways, literally.   

It was decided shortly after we found out I was pregnant that we would need extra help around baby's arrival.  When you have a Sonzee bear, you can't rely on family to take care of her needs, it wouldn't be fair with everything they have going on.  Thankfully here in Phoenix we have a place I have mentioned previously called, The Ryan House, where you can send your child if he/she is diagnosed with a "life limiting" journey.  They give you 28 days a year where you can send your child and he/she can be surrounded by nurses and volunteers in a loving/caring environment who will give your child the 24 hour care required to provide some respite to families.  Since they fill up quickly, back in May I called up and booked Sonzee for the last week of November, a weekend at home, and then the first week of December.  We had our phone call with the head nurse Wednesday, we updated her medication list, and we are now down to her first check-in in just 10 days, and my heart is breaking.

I realize my limitations of being able to care for 3 typical older children, a Sonzee, and a newborn baby simultaneously in the first couple of weeks.  I know deep down this is the best place for her to ensure she receives the care she deserves and requires and all of our other children do as well.  We are able to take her in and out of the Ryan House as long as she returns to sleep.  Her nurses are able to be with her on their regular schedules.  She is literally in the building next to the hospital I will be delivering the baby at.  There is really nothing negative about the setup, except the amount of guilt I feel over having to place one of my children outside of my house to welcome a new one.  I am not the only person to have a special needs child, other children, and be welcoming a new baby...I feel like I should be able to handle it all.

For 2 years and 8 months my older children have made sacrifices because of their sister.  They have had to endure experiences no children should ever have to, and they have done it with amazing stride.  They had no choice, none of us had any choice when it came to Sonzee's diagnosis, and I have not stopped feeling an immence amount of guilt because of it all.  Yet as the days get closer to welcoming this new little person, I am scared of how it will all play out.  This is different because Sam and I made a choice to have another child despite having a Sonzee and 3 other children and with it comes a whole new form of guilt.


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Monday, November 13, 2017


I do not know the specific amount of times I have uttered the words "I quit" over the past 4 weeks.  I have actually perfected my knack for finding the perfect gif to accompany my "quitting" depending on what exactly Sonzee seizure related issue has driven me to fall to the depths.  I keep being told I am not allowed to quit, but honestly, I am losing my ability to keep running this marathon.  Consider me the person on the side in a tent drinking a very large bottle of water, procrastinating continuing the race, needing a very long pep-talk, and also a huge push to get back on the path (there inevitably was a bribe of a large glass of wine, mounds of comfort food, and someone pulling my hand).

There is no problem being persuaded to not quit, truth be told I say it because I have no other words to say, but no matter what I cannot quit.  Even though I won't ever end with the best time, and realistically there won't ever be a happy finish, giving up isn't really a viable option.  It wouldn't even make me feel good in the long run.  In my mind it is useless to keep up fighting the useless seizure control battle, but it is also impossible to not keep attempting to break them down.  

I know this is a losing battle.  I know we are up against a beast that is just not capable of being tamed.  I know the havoc these episodes cause to her little brain are irreversible and detrimental.  I know how all of these medications we give to her are just poisoning her body and even if they are helping to an extent, they aren't a solid match.   The constant battle of having a CDKL5 mutation will always be one filled with the painstaking process of trial and error, but quitting isn't going to change that.


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Thursday, November 2, 2017

Spoken Words

Before we left the PEMU last week our epileptologist came in to discuss the results of the previous 24 hours.  To say we love her is an understatement because there are no words that could adequately express our true feelings towards her dedication and treatment towards us and Sonzee since we transfered to her care following a PEMU stay in July of 2015.  She is no ordinary doctor; she spends so much time talking with us one on one, answering emails, and visiting us in person when she isn't even the doctor on call.  I am not sure if it is just her personality or all epileptologists in general, but I am so thankful every day that she is the one we have on our side during this journey.

As we were discussing the clusters of epileptic spasms that "she doesn't like", but that we "shouldn't treat with rescue meds" because there are so many and all it would do is have Sonzee fall asleep and wake up and repeat; as a team we decided to turn off Sonzee's VNS, and maybe a 2 week reboot of her system would somehow do the trick and get her some semblance of control.  Within 5 minutes of turning off the device, Sonzee had one of her "typical" big seizures.  These are our normal, part of our daily routine, "whatever, this is our life" type of seizure and so I continue to carry on the conversation while Sonzee seizes and I stroke her body.  Her doctor looks at me and has a vacant, heart broken look on her face, and says "I don't know how you do this, and I am so sorry".  I shrugged my sholders and said "eh, this is life", and then thought about her words as my heart broke for her.

I did not choose to have a child who would experience these atrocious events.  I did not go grow up and wish to be a parent of a special needs child.  This was all given to me.  This is just part of my journey for whatever reason G-d felt necessary.  Yet here is a woman, who chose to study neurology, who decided to study an extra 2+ years to specialize in pediatric epilepsy, who takes the most challenging and complex seizure cases, who has years and years of experience, watching what I can only assume to be her billionth seizure of a child, and it's her job to find the best course of action to stop my child from seizing, but she can't, and so she tells me she is sorry.  I felt more broken for her than I ever have for myself.   I hope she realizes how amazing she really is and if I had that moment again I would look at her and say "I don't know how you do this, and I am so sorry".

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Monday, October 30, 2017

Gambling

I am not a fan of gambling, chalk it up to not wanting to lose, whatever the underlying reason is, I just don't care for it.  There is too much uncertainty involved, too much on the line, and while there is that chance I could win, there is a (bigger) chance (in my mind) that I will not.   There is too much uncertainty when it comes to gambling, and while some people enjoy the thrill of the experience, it honestly gives me increased anxiety, so if I can, I avoid gambling at all costs.

In February 2015 our journey of near daily gambling began, but instead of it being one of those situations where if you lose you can just shrug, walk away, and still go on your merry way, it became a gamble where it turned out even our best chances would leave us pained and drained on all levels.  There is nothing positive about making choices that will eventually backfire or provide more uncertainty.  I, the person who doesn't even like to put my money into the stock market because I consider it too risky, is stuck being forced to gamble every single moment with my 2-year old’s well-being and essentially life.

Last night I was making my new desk calendar on Shutterfly, because this year’s ends on October 31, 2017, and so I began to look through 2017 picture albums.  Every picture of Sonzee represents a decision that we made with the intentions of making her life the best it could possibly be.  We removed a tube from her face, traveled across the country for medical advice, had her undergo surgery, try (and fail) multiple anti-epileptic medications, try various medications to help her GI issues, and had her partake in various therapies (that honestly haven't ever made a difference in her capabilities).  When the tears entered my eyes, I was not sure of the exact reason.  Was it happiness over the ones of her smiling or sadness over the ones of my three typical children smiling without her in the picture because they were standing somewhere she couldn't be, she was asleep from a seizure, or she was in the hospital?  So many pictures involved the blue sheets of the hospital bed, hospital gown, EEG hat, or IV.  Each one represented a gamble we took in her honor to help, yet ultimately failed her in the process.

I try my hardest not to look at our failed attempts as a reflection on our decision-making capabilities or my bad gambling luck.  I tell myself this is just the deck of cards we have been handed and we are doing our best every day.  I try not to get angry over the situation, because it is what is meant to be, for her and for us, but this gambling is breaking me down.  Every decision if it has a positive outcome is short lived, and ultimately ends in heartbreak for us and it seems pain or discomfort of some sort for her.  I wish there was a crystal ball that gave us the right answers on how best to help her, but there aren't any right/wrong...it’s just outcomes that come from the best decision we can make at the time with the information we have....


...but no matter what, it will always be a gamble.

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Thursday, October 19, 2017

Memories

Tuesday was the first time in a long time that I waited for Sam to get home from an activity with Sonzee's sister, so I could take little bear over to the ER.  It had been so long, but the motions were so routine it was as if this was part of our daily schedule.  The same wave of feelings crashed over me, which was basically a contradiction in and of itself; a slow motion out of body experience of not wanting to go, paired with the rush of having to get there before the stranger somewhere else in the Valley who was inevitably racing to beat me, so we could both "beat the rush".  I have learned over the past 2 years and 8 months that it doesn't matter how long it has been since we have been to an ER, stayed in patient, gone for a routine appointment, the emotions and memories within won't ever go away.

You can literally see the top lights of the children's hospital from our street as you pull out of the driveway.  The drive itself is at most 10 minutes covering 4.9 miles.  Our house backs up to the freeway, so it only involves the street lights to get on and off, other than that it is a straight drive, 4 exits.  There is no thinking involved, except for the thoughts that inevitably push their way to the front of my mind.  The thoughts that bring the cloud of tears that I spend a good majority of my time pretending don't exist.  The thoughts that tear at my heart and remind me that our life won't ever resemble typical.  

It was how I scarfed down dinner and three children gave us both hugs and kisses goodnight, while one asked in a blunt manner if Sonzee would be coming home.  How none of them were phased by this event.  How I got to the second set of lights prior to turning into the hospital and I had a complete breakdown of fear wondering how this was going to work with a brand-new baby in just a few more weeks.  All these thoughts compounded with the worry of whether going was the best decision and what could possibly be causing one of her first fevers that wouldn't settle even with alternating Tylenol and Motrin.  


It was a bombardment of thoughts that wouldn't let up, the ones that don't give you a second to catch your breath, the ones that are far enough away on a daily basis that you don't feel their constant weight sitting on your chest, thankfully because it allows you to breathe.  In a simple moment you realize they never really went away, they were just hidden in a compartment to keep you sane and functioning.  It doesn't matter how much time passes or how "good things may be going", they are there like a swift punch to the gut to bring you back to the reality of the special needs life you are part of, the one that no matter what, you won't ever be able to escape.


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Monday, October 9, 2017

Simplicity

On Sunday we take our older children (with Sonzee in tow) to their weekly swim classes.  During their session in the baby pool to the right of the "big kid pool" is the class for babies 2 months to 6 months old.  Little babies that are getting acquainted with the water while bonding with their mom or dad, or both.  Sonzee participated in this class when she was that age.  I have distinct memories of her sleeping the entire half an hour due to having a seizure before entering the pool.  The other parents would all smile and comment about how cute it was that she was able to sleep the entire time, they never knew why.  I enjoyed that class because it was a time when Sonzee was "the same".  It was a time that I could pretend that she was not developmentally behind.  It was a time that her seizures, CDKL5, and our lives were essentially a secret to outsiders.

Today as I was helping Sonzee's twin girl get dressed, I was standing right next to the baby pool.  I could not help but stare at each baby and his/her individual experience.  There were 5 boys and 1 girl in the class.  Mostly dads were present and they all appeared to be on the younger side of the age range.  The mom or dad was taking a cup with holes at the bottom and letting the water fall over each baby's head.  I took note of all the reactions present; surprise, eyes closed with a squirm, and some pure delight.  I could not help but smile.  It has taken me 8 months to feel ready to blog openly that Sonzee is going to become a big sister in the next 6-8 weeks.  I have had so many experiences along this journey that I have wanted to put to paper, but it was not until today when that first baby in the pool gave such a huge smile as his reaction to the water over his head that I knew I could do it.


Chalk it up to fear of opinions, fear of something going wrong, fear of comments, fear in general, or maybe it is just the uncertainty of how our family dynamic is about to change adding another child into the mix.  Whatever the reason, I could not bring myself to "admit" that our world, Sonzee's world is going to change and deep down I know it will be for the best but on the surface, there is an immense amount of fear of the unknown.  What I have missed most about having an atypical child is the simplicity that a typical baby brings.  Yes, there are sleepless nights, there is the typical parent worry, there is the typical unknown, there are the typical challenges a new baby brings to a family, yet after having a Sonzee there is an appreciation for the simplicity that I am praying to occur with this baby.  Fear is deeply etched into this hope of everything working out the way I am so anticipating.  Sometimes the fear is so suffocating it is paralyzing, not that this baby will have CDKL5 (yes, we checked the best we could for those of you whom I know are curious) but of every other rare situation that could possibly occur.  Once you enter the world of rare you realize how not so rare it is.  However, in the recesses of my mind and heart is just pure faith that this baby is exactly what our family needs to pull us all together and keep us grounded in a manner of simplicity I am ready to appreciate in a completely new manner, all thanks to Sonzee.  

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Tuesday, October 3, 2017

Clarity

Since Sonzee's CDKL5 diagnosis I have always done my best to make sure that she is looked at as "Sonzee", as an individual, as a person first before the 5-character string that sits "quietly" next to her name on every document that I fill out for her.  To be honest when a doctor uses CDKL5 as their reasoning behind whatever symptom or situation we find ourselves in, it infuriates me to no end.  I have at times considered it to be an excuse, a way for them to place a "blame" on something because they probably do not have a reason themselves as to why she is enduring so much difficulty.  

While I have always felt that her medical team has always held her best interest at heart, there have been so many instances that I felt frustrated with them, thinking that they "just didn't get it".  After all, my rationale was that despite caring for her medically, how could they possibly feel the same way about her as myself and Sam.  After all, they have so many patients, they have so many other priorities, they do not have the time to figure her out.  The situations we find ourselves in with her have taken me on one huge never-ending roller coaster of emotions and it seems around this time of year I tend to have an epiphany and continue to travel on this lengthy journey of grief.

There is usually a situation that occurs that brings the epiphany to light and this year it was our trip to the Children's Hospital of Philadelphia.  We went specifically for Gastrointestinal (GI) motility testing.  Of course, the doctors were aware of her seizures and her overall diagnosis of CDKL5, but I "strategically" did not request a neurological consult while there because I wanted us to just discuss her motility.  I did not want the "blame" to be on CDKL5, I wanted to be told something else was responsible for her situation.  I wanted to know that there was a chance that she could maybe, someday, be a bit more "typical" and tolerate food into her stomach.  Dare I say it, I wanted some "hope".

When we left Philadelphia, that is exactly what we left with, hope for the future, hope for her feeding, and hope for her to be gastrointestinally typical.  I held in my hand an extensive list of potential trials and suggestions and with uncertainty, but "hope", Sam and I walked into her Dr's office this past Friday.  We sat and discussed all of the options, we came up with "the perfect game plan", we spent a ridiculous long time asking questions and listening to what our doctor's thoughts on everything were.  These test results gave us information we never had before, a "reason" behind her issues, and simultaneously the infamous "aha moment" filled my mind as I listened to Sam's final question and heard the answer.  

"Just so we can sleep at night. (Well to be honest I have been sleeping fine), but so we can sleep at night, what these test results show is that her dysmotility was not the result of anything we did?  It was not due to us giving her steroids? It was not due to us having the g-tube placed? There was nothing we could have done to prevent this from happening?"

"No, no, nothing you could have done, this was happening regardless, even before you realized it.  This is just the result of her and the effects of CDKL5".  At that moment I realized how much Sonzee's doctor has been on our side this entire time.  It is so easy to be blind when you are living in the trenches, there is limited visibility when you live in this life.  You pick a team that will hopefully eventually help you to see through the forest.  Just as our doctor left to write out the recommendations and send us on our way I looked at Sam and asked him the question we used to never agree on.  

He went into the hallway and saw Sonzee's doctor standing by her desk and began asking her more questions, the questions that yielded the answers we needed to hear, but did not know to ask.  The answers that proved to us that our doctor was always looking out for Sonzee, but she was also supporting us on this journey.  On our quest to separate Sonzee from CDKL5 we are the ones who forgot to consider the "bigger picture".  No, CDKL5 does not define her.  Yes, despite CDKL5 she can make valuable gains.  But despite only being a 5-character string, the complications set forth from a genetic mutation such as CDKL5 create limitations that will always be present and unavoidable.  No matter what our hearts might yearn for, the specific and individual mutation makes our little bear who she is, and it is the reason she is rare, she is special, and she is HER.



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Tuesday, September 12, 2017

Muddy water....

Image result for quote expectations lead to confusion
When Sonzee was first diagnosed with epilepsy and then shortly after with CDKL5, I would only bring up CDKL5 as the reasoning behind her daily seizure activity if asked, but would just tell inquiring minds that she had epilepsy.  As we added more diagnoses to her file she morphed into what I would begin to refer to as a "medically complex" child.  It was easier for me to summarize her to others with two words vs going into the extensive list of specific difficulties she presents with.  I never really considered that even within the land of medically complex she could be even more complex than any of her diagnoses summarized.  


We flew 2,344 miles from our home to have motility testing ran to help us treat her better.  In my mind, I assumed the results would match up with her symptoms and various GI diagnoses, and they would confirm that her stomach could not tolerate food.  I assumed we might be given different ways to manage her symptoms, but that at the very least her body would perform in the same manner it has for us each and every time we have tried to reboot her system and use her stomach.  Yet here we are and so far every single test is coming back normal.  Do not get me wrong, this is great in terms that her stomach is emptying appropriately, and we have specific evidence she has bad reflux, but it is also extremely disheartening because we do not seem to have a straight forward clear answer as to why she cannot tolerate being fed through her stomach daily. 

I suppose that is an answer, it shows there is no physical reason as to why she cannot tolerate foods.  It shows that theoretically, with time, we could transition some if not all her feeds back to her stomach.  It shows there might be potential for her to be fed by her mouth versus a feeding tube (given she does not aspirate).  However, it leaves us having to sift through the neurological component that is CDKL5.  It means that despite my best efforts to not use CDKL5 as the reason for everything Sonzee related, it seems to be the "only" answer to why that we have left.   

Since she was born I have always been on the search to uncover the cause behind her symptoms.  Maybe that is what all parents do when they are handed their unexpected present of a medically complex child.  In our case we found our overall why and it is known as CDKL5.  Maybe it is just me, but I used to think and say that if I knew the reason behind the "why" that I would be okay, that it was all I needed to know.   Maybe there is just no pleasing me, but I feel there SHOULD be an actual answer to why, other than CDKL5, because all I have learned in 2.5 years is that CDKL5 does not give us any answers and it certainly is not an answer in and of itself.  Then again, maybe there will never be actual answers and I should just stop searching... 



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Wednesday, August 23, 2017

Never

In parenting in general I have always tried to avoid using the words "I will never".  I figured eventually I would most likely become a hypocrite because how could I say "never" when the whole experience was something I had never taken part in and therefore knew nothing about to make such a hefty accusation.  I knew in the back of my mind how I wanted certain things to play out, but then life happens and you just never know what choices you thought you would "never" choose.  

The opposite has been the case when it comes to specific anti-seizure medications.  Once you get thrown into the world of seizures and spasms, and various drug names you quickly get a clever idea of the drugs that you would not want to spill on the floor due to the hazards much less put into your child's body.  From the beginning Sam and I were adamant "we would never" give Sonzee the drug Clobozam, also known as Onfi.  It is a "big gun" anti-epileptic medication, known as a sedative and classified as a controlled substance.  The warnings for this drug are printed in bold on Onfi's very own website.
                    
               WARNING: RISKS FROM CONCOMITANT USE WITH OPIODS
See Medication Guide and full Prescribing Information for complete information.
ONFI is a benzodiazepine medicine. Benzodiazepines can cause severe drowsiness, breathing problems (respiratory depression), coma, and death when taken with opioid medicines.


I find that we are at an impossible crossroads.  I cannot in good faith let my child seize multiple times a day for 10+ minutes each time.  She cannot keep sleeping and seizing.  On the other hand, our only choice is a drug that could literally kill her with respiratory issues and/or make her sleep all day long.  As usual the question of "quality of life" presents itself in a more pronounced manner.  She does not have much quality these days with her seizing schedule.  We are at the point where we must take the chance.  We must play Russian roulette with our 2-year-old and we must pray we will not regret going back on our never.

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Tuesday, August 22, 2017

Playtime Interrupted

Oldest: "Ema can I play with Sonzee in my room?" 
Me: "Yes, just be careful when you push her in the chair not to get her wires tangled"
Oldest: "Come on choupers, let's go"
(Some time goes by)
Oldest coming to me: "Ema, Sonzee is having a seizure, why does she always have a seizure when she is having fun?  I was reading her a book and she was smiling and all happy and then she had a seizure again...it's not fair"
---

Our oldest was just 5 years old when Sonzee was born.  An innocent, light brown haired, blue eyed, loving, caring, full of personality, dancing, playing around, typical big sister who has always loved to dote on her siblings and had to learn at the age of 5 what a seizure looked like in a newborn baby.  At 5 years old, she was wise beyond her years, but still a bit too young to fully understand or grasp all of what CDKL5 meant for her youngest sister.  Sam and I have tried over the past 2.5 years as hard as possible to protect her little mind and heart, answer her questions, give her only necessary information, and essentially trying our best to support her innocence a little longer.  However, our little girl is becoming older, smarter, and now at the age of 7.5 she understands more, hears more, knows more, feels more, and hurts more. 

I am not quite sure what hurts me most about Sonzee's seizures during her sibling playtime, the list is so long.  I hate that it disrupts a happy moment occurring between them all.  I hate that she has seizures in general and they occur so often that this conversation happens at least once a day.  I hate that our oldest must experience at 7.5 what I do now at 33.  I hate the sound of defeat our oldest has in terms of her play session being cut short due to the seizure "because Sonzee was having so much fun".  I hate that my only answer is "I know it stinks you guys were all having so much fun".  I hate that our 7.5-year-old rebuttals with "why does it ALWAYS have to happen".  I wish my reply could include more substance than "I don't know, it is such a bummer".  It ALL hurts.  It ALL breaks my heart.   


The silver lining comes at the end of the seizure, when I relocate Sonzee to her bed to rest and her oldest sister asks if she can finish reading to her in her room.  Our oldest and I have one of our typical sevenager disagreements because she wants to show Sonzee the pictures and cannot reach her crib, and I assure her it is ok, Sonzee will just listen because she is too tired at this point to look at the pictures anyway. I leave the room to two sisters, the 7.5-year-old reading to the 2.5-year-old and can almost for a split second forget the events that preceded and the fact that one of them has intractable epilepsy.  I will replay the events in my mind and will pray that tomorrow's playtime will go differently, but first I will memorize this image...because this gives cushion to the pain.  This love that our oldest has for her "twin-girl" is something that brings tears to my eyes.  She has her own twin size bed, with a memory foam mattress (that I personally think is extremely comfortable), but instead insists on sleeping on a toddler bed in Sonzee's room.  This brings me a wave of comfort even if it is just a ripple.






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Wednesday, August 16, 2017

Spectrum

It has been four days since our CDKL5 family lost another precious little soul.  A sweet 2 year 10-month-old little boy who was just 4 months older than Sonzee.  The pain is a mixture of heartbreak for his family tinged with fear for my own.  Within those four days another CDKL5 2-year-old learned how to take her first independent steps.  My heart filled with joy for all she has accomplished and immense amount of hope for her journey, but simultaneously breaks for what Sonzee might never do.  My heart and mind both torn at the fact that I should be less selfish about my feelings toward other CDKL5 children’s' advancements and just be grateful it's not my turn to be planning a funeral. 

This incurable disorder is just devastating on every imaginable level possible.  The spectrum is so wide and confusing.  We all want to grasp onto hope with the term representing various parts.  We hope our children do not constantly seize, we hope our children gain milestones, we hope our children are happy, we hope our children do not suffer, we hope our children do not catch a common cold that sends them into the hospital and has them clinging onto their lives, and most importantly we hope and pray our time to bury our child does not come today.

I spend every moment trying to keep Sonzee's life expectancy in perspective.  I try not to focus on the "what if" and "when".  I do not let those aspects consume my life, but the thoughts are never distant from my mind.  I know plenty will say "I shouldn't think that way", even other parents of children with CDKL5, but I will not convince myself otherwise when I know how unforgiving these toddler years can be, when I have witnessed Sonzee teeter on the delicate rope between life and death, and when I watch her seizures increase in both length and intensity right before my eyes.  It works the same with her Sonzee-stone achievements, I try not to focus on the "what if" and "When" but just let her do what her body is capable of, trying to truly believe when I say that I am content with where she is at.  


Daily we have new CDKL5 family members added to our group.  Having your child affected by a disorder with such a spectrum is cruel and unfair.  A parent posts a picture a picture of their 14-month-old standing and some say it "gives them hope", while I do my best to not compare an apple to an orange.  No one wants to have their child "more severely impacted", but someone must fill those shoes.  It is just the luck of the draw when it comes to CDKL5 and the role it plays and while we could not have won a bigger jackpot having Sonzee as part of our family, we could not have fathomed how difficult and painful her journey was going to be. 

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Wednesday, August 2, 2017

Sometimes it's just easier

We are spending this week at Hershey Park.  We've done this before when Sonzee was a year younger, and I could justify her constant position of being in a stroller because she actually was "a baby".  It didn't phase me that she wasn't going on the "no infant in arms" rides because she was an infant.  She wasn't impressed last year with the few rides she could go on, the merry go round, train, and the monarail, but we took her on them irregardless because I insisted we treat her like everyone else.  Fast forward a year, knowing her personality better, and respecting her desires and we decided to not even attempt to take her out of her wheelchair.  

Sam and I have a routine of waiting in line with the kids to go on rides and then he takes on the children who want to go that have met the height requirements one at a time.  It's not ideal but we are clearly outnumbered by children so it is what is, and we don't factor Sonzee "as the reason" we wait.  With my parents here this year it makes it easier, but due to various ride restrictions Sam is the sole adult participant for this trip. There are some rides the kids wanted to go on  but that would involve taking Sonzee out of her wheelchair and having her be held in my arms and to be honest would result in a miserable time for everyone in addition to her, so we told the big kids we would take them later because Sonzee would be retiring to the room early.  As my oldest repeatedly said "even though we love her, sometimes it is just easier to not have Sonzee."

"It is easier", after I agreed with her and said the words, the tears swelled in my eyes (thank you $5 sunglasses from Marshalls for hiding this small fact) and I had to choke back the feeling of crying from my chest.  It is a honest truth that certain aspects of our life are "easier" without one of our children, and that is the worst feeling in the world and utterly breaks my heart.  I can't believe I have to say those words much less think them, and I really can't even fathom that it is actually a fact.

It doesn't phase her siblings that we tell them on multiple occasions "we can't because of Sonzee".  They don't have tantrums or get visibly upset over the "excuse".  They are very "go with the flow" type of children, but I am sure it must be frustrating to constantly hear us tell them they can't because of Sonzee.  It warmed my heart to hear my oldest say "we love Sonzee but", but I dislike immensely that there is even a "but" to follow.  She isn't wrong either, it is easier at times without their sister, I just wish that wasn't the case.

Sunday, July 30, 2017

Sensitive emotions

I can clearly remember how Sonzee was 2 years ago when she was close 5.5 months old.  Her diagnoses of CDKL5 known to us already for a little over 3 months.  She had been enrolled into therapies for 4.5 months at that point.  Her seizures were finally under some semblance of control, only happening every other day.  I remember being upset with that form of control.  I remember despite knowing the odds of her sitting, walking, talking, and/or being functional I was filled with so much hope because she was so young.  I remember distinct conversations with her physical therapist where we would both say that "Sonzee will...." and "She is so young....".  I remember feeling like maybe, just maybe, she would be the outlier to the (extremely few) journal articles written that gave the statistics about children with CDKL5.  

I can clearly remember 14 months ago when Sonzee was 15 months old.  Her life hanging in the balance as she spent a month in the hospital with it unknown to us whether she would be leaving the same doors we brought her through in our arms.  Her amazing therapists came and sat there encouraging her along the way.  She was swollen from medications, TPN, and additional fluids.  She had transfusions of blood and various other items to balance her metabolic panel, and developed an allergic reaction to the one seizure medication that at the time she appeared to be responding to.  Her seizures were at bay, but her physical development was far worse due to her failing body.  I remember feeling utterly helpless and wondered if it was going to be our turn to join those who had lost their CDKL5 children.

The years have passed and our attempts to help Sonzee live her best life possible have not gone the way I personally have intended.  Despite the relentless seizures and the awful GI system she was blessed with, we have not ever stopped her therapies.  Her therapists sit in our home whether Sonzee is an active participant for the hours they are scheduled.  They reschedule when Sonzee is having a difficult day and they do their best to help her have the best quality of life possible.  I will never say that the diagnosis of CDKL5 defines who the essence of Sonzee is, BUT I will loudly announce that it plays a crucial crucial role in her body's ability to achieve skills and perform "simple" tasks.  


Last night was one of those times where I felt like such a failure despite all the therapeutic efforts we have tried with Sonzee.  I truly believe that the words that led to my feelings were not intended to cut me like a knife.  I will lend it to me being super sensitive, but I am going to embrace the pain they caused regardless.  No Sonzee does not sit, she does not even want to be held upright at times.  She is wheelchair bound, and this is not changing any time soon.  Her physical abilities do not have anything to do with her personality so I do not let her lack of development negatively affect me.  It is probably irrational of me to be the slightest bit disappointed with myself over her development when just yesterday over an 11-hour period she endured 3 seizures and slept 9 of those hours.  There was no time to squeeze in any attempt at physical therapy.  I will take a guess that her day today will be similar, but she will be up for the challenge in true Sonzee fashion.  She is her absolute best even with the CDKL5 mutation she was allotted and I will continue to tell myself I am also.

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Monday, July 17, 2017

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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Sonzee's Slideshow