A Year Ago: Monday: Drafted on 9/21/2015

I sat down to write a new blog post and saw that my first guest post was written a year ago today.  This was for "A regular day in" series.  It was a year ago but I don't have to reread my words to remember exactly how this day went, this was how many of Sonzee's days have gone in her life.  I look back on this and smile because in a sense we have come so far from where we were just one year ago today.  I will be sure to follow this one up with a recent view into our daily lives.

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Monday: September 17, 2015

There is a low tune playing behind my head.  I reach back quickly to swipe the arrow across my iPhone so the alarm ringing won't wake Sonzee up; it is 2:55am, time for her Charlotte's Web Hemp Oil.  I hit the dim setting on the light behind the bed, and grab the bottle sitting on the pull out drawer in-between Sonzee's bed and myself.  Through blurry eyes I manage to shake the bottle, grab the dropper, and stumble awkwardly over to her.  I count out 4 drops...or I attempt to considering I can barely see straight and she is not so forthcoming about opening her mouth.  She turns her head from side to side in protest as I am sure I just interrupted what was finally a nice dream.  I watch her swallow (as I pray to G-d she won't get annoyed with me, wake up, and then want to be fed at this ungodly hour), count out another 3 drops (I hope).  I place the dropper back in the bottle, tighten the lid, hit the light switch, and back to sleep we go.

I hear a whimper...it is 3:13am and it appears my attempts at quiet were futile and now it's time for a midnight snack.  I am really starting to develop negative feelings towards this hemp...it better work some hardcore magic.  In a drunken stupor I carry the bear over to the rocking chair so my back doesn't protest while she eats.  Even our almost 7 year old cat knows the routine as she attempts to uncurl herself fast enough in hopes tonight I won't sit on her.  It's a near miss, but clear escape for her this time.  I hear the deep breaths of daughter #1, and low and behold she is sleeping next to hubby...AGAIN for the third night in a row.  I silently debate the pros and cons of this arrangement and decide I have no energy to wake either of them and besides she is only young once.  It is now 3:23am; let's try this sleep thing again.

The last thing I am aware of is the back of my eyelids when I hear the scream.  My body knows this scream like a lifelong friend...my feet hit the floor before my eyelids are lifted.  Her body is equivalent to the feeling of a dead hamster, yet I somehow manage to get her in a hugging position.  I swipe my phone; it is 4:18am.  I rock her and kiss her wondering if I burped her well enough an hour ago.  When it's finally over I see it is only 4:21am, good 3 minutes, it felt much longer.  Her body continues to tense, but her limbs are limp so I call for Sam who holds her and reassures me it is just the chills.  I hear daughter #2, maybe her body is silently woven to her sister because she makes a sleep whimper and puts herself back to sleep (thankfully).  

Sonzee and I cuddle under the blankets, and yes, it was just the chills as she is now back asleep and relaxed.  The damn cat is trying to cuddle as well...I have tried to shoo her 3 times already since the seizure began, can't she take the hint?!?! It is 4:37am; I place Sonya back into her bed and cover her.  She is so peaceful looking.  She shuffles a bit and I wonder if she'll need another snack.  It is 4:42am and I am actually contemplating this sleep thing again....

 

Sleeping after her 3am seizure

Again there is music in my ear; it is 6:55am and time for Keppra.  The syringe sits prefilled next to the Hemp Oil so I don't have to do more than roll out of bed to administer it.  I glance over my shoulder and see a sleeping Sam and daughter #1.  Normally by 6:00am little man would have been by the foot of our bed telling us why he does not want to get dressed for school, but of course, not today.  I tell my husband to move, and then drift off to sleep, even though I know I have to get up to pack lunches.  7:14am reads the clock; I encourage everyone to start moving.  Daughter #1 is turtling her way about her morning routine, and our dear son has started his morning protests...daughter #2 and Sonzee remain asleep, for now.  

I walk out to the kitchen and check the lunch menu, "Macaroni, grapes, and snacks"; thankfully the box of noodles can cook in 5 minutes since that is pretty much all the time I have.  18 minutes behind schedule, the kids are off to school.  Daughter #2 is ready in her gymnastics clothing and I finally start to get ready myself.  I throw a load of laundry into the wash, switch the wash load to the dryer and begin to fold the clothing that sat in the dryer overnight.  Around 8:20am I hear Sonzee start to whimper; it is her post seizure coma whimper, she is finally ready to eat after her episode from 5 hours ago.  I feed and change her, and my sister and nephew pop in to say good morning.  My phone has already rang twice since 8:00am, but I have not checked it.  I am packing Sonzee's swim stuff because today is aquatic therapy day.  I hit play on the voicemail assuming it is just the follow-up call to our OT evaluation last week, that I never had a chance to return on Friday, but instead it is the office calling to tell us Mr. Mike is sick, and there won't be therapy today. 

The tears fill my eyes as I realize she has not had PT since August, nor will she until October due to scheduling conflicts.  I feel like I am a failure.  I send Michelle, our movement lesson guru a FB message asking if she has any additional morning slots open, knowing she is booked, but hopeful for a cancellation.  Sonya still hasn't built up her energy from her earlier seizure and she is asleep on her play-mat.  I move her bed.  It is 9:28am, when it dawns on me that I hit snooze on her 8:55am Topamax alarm because I was on the phone, I HATE WHEN I DO THAT.  Thankfully it is within the hour window, so I go over to her and she takes it while she sleeps.

She of course wakes up and I feed her.  Then it’s back to work for her on her tummy in an attempt to work on her arms.  I bought a wedge off of amazon, it isn't what I anticipated, but it will work.  She can at least stretch her arms to try and bear some weight.  Daughter #2 is eating some yogurt and skittles (I know so healthy).  My alarm rings for her 10:55am Hemp Oil.  

Sonya doing tummy time

We get all packed up and head off to the chiropractor by 11:40am.  Sonzee gets adjusted and Dr. Danielle and I chat so we are there for about an hour or so.  Sonzee has a quick lunch and diaper changes occur.  Afterwards we head off to movement lesson, Mickey Mouse and the Three Musketeers is playing for dear daughter #2 while she eats her lunch.  We get to Michelle with a minute to spare before our 2pm lesson.  We discuss my most recent concerns regarding Sonya's questionable physical movements, I am not sure if they are sensory related, CDKL5 related, or just "baby do weird things movements".  I show her a video of Sonya holding her toe and sucking the pacifier while we were with Dr. Danielle!!!  

Sonzee getting adjusted with Dr. Danielle

We rush out of Movement Lesson and I mute the 2:55pm Keppra alarm.  I call Sam to tell him to meet us at gymnastics so we can do the child swap.   He meets me at 3:52pm; no way will we make it to dance 60 streets away in 8 minutes.  Daughter #1 changes quickly in the car, he hands me the requested Tylenol I texted him about earlier due to Sonzee's crankiness, and daughter #2 gets transferred out of my direct care.  

Daughter #1 and I share a little small talk and then she drifts off to sleep for five minutes.  Surprisingly we get to dance only 8 minutes late.  Of course it dawns on me as we are rushing out of the car that I AGAIN forgot to give Sonya another medication on time today.  This time her 2:55 Keppra dose will be an hour and 15 minutes late.  I yell at myself again.  I lug the car seat out of the car with Sonya's bag and daughter #1's dance bag.  Sonzee and I take up our usual spot on the floor outside dance class.

Sonzee in her carseat at dance

 Sonya decides she wants to eat again, so we alternate sides and then she chats up all the dance moms.  She always likes to talk to people when we go out, and it is so nice to hear her cute little noises.  We go upstairs for daughter #1’s second class and Sonzee can get some floor time in.  She does some rolling and ends up on her tummy.  At 6:00pm class is over, but daughter #1 enjoys taking her time, and I talk with people in the studio so we don't leave until 6:18pm.  We finally arrive home close to 6:45pm and Sonzee goes on her play-mat and gets the Tylenol I forgot to give her, daughter #2 and little man get some tickle time, and daughter #1 is asked 3 times to put her clothing in the hamper, change into her PJs and eat her dinner.  6:55pm the alarm rings for Sonya’s hemp oil, this time I only forget for 3 minutes before the panic of missing the dose sets in.  She eats again while I eat my luxurious dinner of chicken nuggets and french fries Sam threw into the oven for me.

I hand Sonzee off to Sam at 7:40pm and jump into the shower for some much needed alone time before he will head off to hockey and I'll be back to manning the post.  I sit down at the computer.  All kiddos are in their beds; it is 8:35pm. 

Then the scream.  For 3 minutes I hold Sonya tight as she convulses against me and whimpers.  The tears fill my eyes, anger fills my entire body, Taylor Swift plays in the background and I just picture Sonya "in a nice dress, staring at the sunset, red lips and rosy cheeks".  The alarm rings, it is 8:55pm.  I am back in reality.  Her last Topamax has been given for the night, her two dosages of Keppra are filled and ready to go, sitting next to them is her Charlotte's Web hemp oil; and I'll be heading off to have some of my “Wildest Dreams”.

CWHO, morning Keppra, night Keppra

30 days and 12 hours (9/18/16 at 9pm)

It has been 30 days and 12 hours since our little bear had a seizure (as of this post being written, and I hope by the time this publishes I do not have to make any corrections.)  I can still remember the exact way she looked, where we were, who else was present, and the emotions that flooded through me.  I have a feeling that no matter what length of time that may pass, the details of her past seizures will always be there in my mind and haunt me.  Every body movement, eye roll, and sound that she makes sends a jolt through me that takes my breath away.  I often wonder if that will ever subside.

She is doing absolutely fantastic in so many ways.  Her head control is the best it has been in her life.  People that do not often see her make comments on how healthy she looks and how big she has gotten.  While she does not look directly at people who walk up to her, if someone talks to her in an excited manner and they wait patiently, she will give them one of her signature smiles.  It does depend on her mood how big or small the grin is, but she loves to give them out.  She loves to be around people and to interact.  In the past when she was upset, she preferred to be left to herself, but yesterday I did my usual "try anyway" approach, and she actually fell asleep while we were cuddling in my bed.  A moment that may never occur again, but was photographed and etched into my mind forever.  How long will this last?

Others have asked me this question AND I cannot lie, I wonder the answer myself.  I also wonder if I actually want to know the answer.  There used to be a part of me that would say "yes", please tell me how much longer our Sonzee bear has of being free from the havoc of seizures.  I would rationalize that I would need to know so I could enjoy every second and truly cherish the moments.  If I was at a different point on this journey, my answer might not be the answer I am comfortable with right now.  However, I know what is different and I know why.  

Not so long ago I wrote a post about change and how the entire concept confused me in regards to what roll "change" had on me.  I look back at the past four months, I can see how I am different, and I can even tell you why.  I can tell you that during Sonzee's 28-day hospitalization at Phoenix Children's Hospital there were days I actually pictured walking out of the doors without her coming home.  The thoughts I had during some of those days are honestly too challenging to relive just yet, but I can tell you they did make a positive impact to the me of now.  So if you ask me now if I want to know when this dream will end, the answer is NO!  I can promise you that I am enjoying every moment to the fullest, and I am cherishing every typical and atypical Sonzee moment she has to offer.  Even the Type A part of me is quietly hushed in the corner knowing all too well that her opinion does not matter.  

Whatever amount of time we are afforded with our bear in general and as a bonus with her being seizure free we will take with gratitude and appreciation.  Despite the bated breath that each movement, eye roll, and sound she makes brings to me I will continue to be grateful for each minute that she is not in pain and that she is not seizing.  No matter what happens to her seizure control, no one can take away the past 30 days and 12 hours of pure peace and joy that we have all been fortunate enough to experience.

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Ryan House

In the beginning, once it becomes public knowledge that you have a child who requires extra attention, you are told the following phrase in many variations, "take time for yourself".  Friends, family, even the veteran special needs parents you have just befriended, essentially every person you talk to has this advice as if it were the most important bible passage ever to be referenced.  If you are like me (which I think many rookie special needs parents are) you nod your head in agreement, state that of course you will, and then you go back to doing the exact opposite of the recommendation.  Days, weeks, months, and maybe even in some cases, years go by before you realize that you really do need to ensure you take time for yourself.  Not just an hour in the evening or a quick run to the salon for a massage or mani/pedi.  Sure, those are great, but in all honesty, they are not going to leave you as refreshed, renewed, or roaring to go as they might have in the past.  You really need to take time for YOU.

As a special needs parent things are different.  Trust me; it is not an elite club that you should try to be a part of.  While qualifying for additional state services such as insurance, therapy services, nursing, respite, etc. might sound absolutely amazing to those who aren't part of this system, I can assure you (from personal experience), this is one of those clubs that whomever is in it will embrace their position, but they wouldn't wish it on their worst enemy.  The stress, worry, guilt, lack of sleep, constant daily battles with the above-mentioned perks, hospitalizations, ensuring the rest of the family doesn't fall apart, and essentially every other possible thing you can think of is enhanced tenfold and it makes functioning on a daily basis much more daunting.  It is not to say being a parent in general is not exhausting or full of crazy emotions and tasks, it is just, this is different.  (I can say that with certainty as I parented two 100% healthy children and one with a "mild" heart defect prior to the birth of Sonzee Bear).

I recently received a message from another mother of a special needs child.  I have used this mother's guidance and advice literally as my bible since Sonzee was diagnosed.  She has other children, she has experienced more than I have, she is a person to be trusted, let us just say, she knows her stuff.  What she told me has been repeating in my mind since I received the message.  She mentioned that I need to make sure I take time for myself to be the best mom I can be.  She said if she could do things differently from the start that would be an area of focus for her.  Respite.  This message could not have come at a more perfect time as I have been feeling drained and while things are at their calmest in terms of Sonzee, I have been essentially running a special  needs mom marathon since this little girl has been born.  I have referenced marathons before, they require a lot of preparation, preparation I did not have.  

Caring for Sonzee on a daily basis requires many alarms.  Alarms to give medication, alarms to refill her formula in the feeding bag, weekly doctor appointments, and therapies, reminders to refill medications, insurance phone calls, etc.  She is a lot of work.  I do not say this to earn sympathy or to complain, I say it as a blanket statement.  Special needs children require more.  Hiring a babysitter for children in general is not easy; you have to be extra diligent these days.  However, trying to find one you trust enough to not become frustrated with a nonverbal child who doesn't have control of his/her limbs, and has medical needs is no easy fete.  Sure if someone qualifies for nursing you might think their family has it "easier" because the medical portion is covered, but now you are trusting someone to give your child medications appropriately and that is never easy.  Our family has been extremely fortunate with our caregivers, they are practically family, however, they have lives as well.

Over the last month in various situations, the name Ryan House was mentioned.  It is a facility in Phoenix that provides respite to families with a child who has a life limiting diagnosis.  Respite comes in the form of a minimum of 24 hours up to 7 days at a time.  I have been hesitant to look into the benefits of the services they provide because of the guilt of leaving Sonzee with others.  While I worry other moms of special needs children will say they could never use this service themselves, I am starting to truly understand that if I want to function at my best not just for her, but also for all of our family, then I truly need some longer time respite.  They require an initial family stay of 24-48 hours so they learn how to care for Sonzee just as we would.  For future stays, the entire family is allowed to stay as well and the nursing staff will care for Sonzee while we can have a family-bonding day.  Even her beloved Miss Holly can stay there as well (Isn't that exciting Miss Holly??  Since this is the first time you are hearing of this.)  I just took the first step and we have a tour scheduled for tonight shortly after this post goes public.  I am nervous but eager to learn more about what the Ryan House has to offer.

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363 Days

As I sat down to write my post I could not remember the topic that I had been planning on sharing.  That happens more often than not these days with the lack of sleep I am getting and the usual typical mommy brain.  So I looked back a year to see where my mind was and I came across a post titled who is she?  Similar to the other "I wonder if we are making the best decision" posts, I was worried that we were the ones preventing her personality from coming out because of the side effects of the medications she was taking.  I was worried about the harm all of her medications were causing her.

September 9. 2015

"If one of the side effects of keppra weren't irritability, would she be a baby with a constant toothless grin?!  If it weren't for topamax would she be a bit quicker cognitively?!  How much of the Sonzee bear that we know and love is actually Sonya?!  How much of her are we missing out on?!"

While I think it is "safe" to say that we won't ever be able to differentiate whether all of her personality is due to a specific drug she is currently taking, a long lasting side effect from one she is no longer taking, or if she is acting just as a non-medicated Sonzee bear would, I have so much to say to the me from one year ago.  Sonzee is practically on a non-therapeutic dose of Keppra as we continue to wean her slowly.  At her highest dose over the past 17 months, she was on three times the amount she is currently taking.  She is on Sabril and RSHO hemp oil and is experiencing the best seizure control of her life (poo poo poo, chamsa chamsa, knock on wood, and every other possible superstitious saying from every culture) at 23 days 13 hours and 15 minutes (as of the writing of this post).  She is the happiest little girl, with the most beautiful and amazing open-mouthed tooth filled smile.  She attempts to giggle and makes a Sonzee exclusive little laugh.  She plays with her feet and interacts with everyone.  She loves to be silly and her personality is shining.  She has been off Topamax for 6 months and immediately we saw her cognitive abilities enhance with the elimination of that drug.  HOWEVER, 100% of the Sonzee bear that we have known and loved IS ACTUALLY THE SONZEE BEAR.  

All of the medical choices we make on this journey we obviously make for her, so she can be the best little bear that her little body allows her to be.  Every smile, every laugh, every milestone she achieves is due to her being her no matter what medication she is on, no matter what obstacle that drug puts in her way and no matter how amazing it helps to make her.  Every tear, every setback, and every hurdle she has to overcome and reattempt are all because of who she is.  I want my old self to know that we were not missing out on anything that she had not shown us because at that specific time, that was not who our little bear was. 

There will come a time when I know this post will serve me well.  I hope that when I reread the words I am writing I am taken back to this specific moment in time.  The time when our days were filled with less tears of sadness and more tears of joy.  The time when we started to meet our little bear like we would any typical 19-month-old child of ours.  The time when we celebrated every little tiny moment of positive outcome as if it was going to be the last, but hung to the hope that it would not be.  The time when we worried that our days such as this could very well be numbered, but we would rather experience them this way regardless.

It has been 363 days (give or take) since I wondered who my fourth child was.  I wondered who she could be without the assistance of an anti-epileptic drug, yet would never allow myself to give the okay of letting her not take one.  Today, I am celebrating who our little Sonzee bear is DUE to the seizure control she has been blessed with while also on a drug that I once worried would take so much of her away.  To that, all I have to say is what a difference a year can make.

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Waiting...it can be worth it

I wrote on Tuesday that I feel like all I do these days is wait.  The worst part about waiting is the obvious part, because let's be honest who enjoys waiting for things? (Well I guess that does depend on what exactly is being waited on and if you happen to excel in the area of patience). For me (since we all know patience isn't exactly my thing) waiting just builds anticipation and potential hope and the outcome isn't always what I personally intended it to be.  However, It is always extra spectacular when all of the waiting I have done turns out to be beyond worth it!

As we continue counting Sonzee's amazing seizure free streak (she is currently 20 days and 7 hours in case you were wondering) we have been privy to witnessing some amazing accomplishments that I was unsure she would add to her personal list.  Her head control is amazing, she can sit supported (when she wants) for a large amount of time, she only arches her back when she wants to be "all done", she absolutely loves her sensory box, and my most favorite addition is she is able to have and enjoy an actual bathtime experience.

Had you asked me a couple of weeks ago I would have said "we need to really pursue a bathtime chair that reclines because she is definitely way too big for the infant tub she has been using (yes, we have been bathing her in the infant tub we have used for all the kids...yes she still fit...but not for too much longer). Last night I was so eager to get her in the tub. I was worried that my timing would be off and we wouldn't have a happy bear on or hands.  In between painting my oldests bedroom and getting the kids to sleep I decided it was the only time to perform my little experiment.  I took little bear and as I filled up the tub I placed the light up toys and bubbles in the water.  I placed her in her seat and held my breath.

Then the stars aligned.  Not only did her experience exceed my expectations, I was so appreciative that everything worked out beyond my wildest dreams.  There was nothing better than that 6 1/2 minutes where she focused on the toys, tried to grab them, and sat herself up in the chair!!  These are the moments that make the waiting bearable and WORTH EVERY CHALLENGING MOMENT UP TO THEM.

So now I dare myself to look forward to the moment Sonzee sits by herself without support because I know when that moment happens I better have a box of tissues nearby.

Waiting

Waiting.  It seems to be a majority of what I am doing these days.  Waiting for appointments, waiting for offices to call me to schedule said appointments.  Waiting for tests then waiting on those results.  Waiting to start medications, waiting to wean medications.  Waiting to see the outcomes of all of the playing we do with her medications.  Waiting for her skills to emerge and hoping that none of them disappears.  Waiting is not my strong suit by any stretch of the imagination, but the absolute worst waiting of all...waiting for the damn seizures to return. 

I feel like Debbie downer sitting here waiting for the shoe to drop, but let us be honest and realistic...it is bound to happen.  She has been spasm/seizure free for 18 days and 3 hours as of this posts composition.  This is by far her longest period of freedom since her last round of spasms that we treated with high dose steroids.  I have experienced this waiting game before.  It was as soon as I started to think we might have outsmarted the seizures that they rudely showed back up at our door, not welcomed.

It is challenging not to let the fear get the best of me, yet I know it does nothing good for anyone.  So while I am part of this awful waiting game, I try to enjoy and cherish every moment.  I try my best to balance between encouraging little bear to gain new skills while being skeptical that I might have pushed her too hard, which might trigger them back.  I try to video every smile and giggle so I have them documented and ready for the future when I have to watch them as reminders of what she is capable of while also viewing them to keep my hope.  I try to surround her with the things that make her most happy because this is the time she can enjoy them the most.  

I really dislike this part.  The part where I am most excited about how far she has come and so fearful that she will lose everything she has worked so hard to gain.  This for me is that part of the coaster where the tracks are hidden and it is uncertain which way the ride will continue.  Will we keep moving steady, take a slight climb, or drop 40 mph downward with little to no warning?  Regardless of the way this portion of the ride will end, one thing is for certain...my harness is pulled snugly against my chest.

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Are you done?

Ever since Sam and I married, we have been asked about having children.  First, it was "when do you want kids?”  If you know me at all, you know that I have wanted kids since I was a little girl, so that was an obvious answer.  The next question was "how many?”  I am unsure if Sam and I had a concrete answer at the beginning.  As a child I had always envision between four or six, because five is an odd number.  With each child, we added into our family we would stop and consider what changes an additional child would add to whatever our current situation was.  Then we were given Sonzee.

Prior to Sonzee, I honestly never really considered that we would have a special needs child.  Being in the field of speech language pathology, I was not even really fearful of having a child who might require additional attention, but then again I had never heard of CDKL5 prior to April 17, 2015.  

When I was pregnant with Sonzee, we thought for sure she was a boy.  We had two girls already and only one boy, so obviously this baby was a boy.  I spent an entire eight months envisioning a "girl’s room" and "boys room".  It only dawned on me a month before she was born that this baby could very well be a girl.  I nearly had a panic attack trying to figure out how we would be putting three girls into one bedroom.  (I suppose I should thank G-d for solving that problem).

When we were asked if we would have more children we would joke and say "fourth and final".  I wanted to put that on a sticker for my maternity pictures, but Sam said, "Don't do that, because what if we have another and then that child thinks he/she wasn't wanted".  (No, I am currently not expecting, but I suppose that was some decent foresight).

Prior to Sonzee being born I think I was undecided if I would "want" a fifth child, but I was fairly “certain" that we would be good with four kids.  Six is a nice solid family number, four is an even number of kids, and it would be the "perfect" family.  Now we have Sonzee and three other amazing children.  Yet when I am asked, "are you done?" my reply is not so straightforward.  "Undecided" is my typical response.  

I know I do not owe anyone an explanation as to why we would or would not want another child, but I often struggle with what people would think since we already have four kids and one is special needs.  Would our choice to have a fifth make people think negatively of us?  Shouldn't we just be happy with the kids we already have?  I struggle internally as well.  There are so many positives to having another child, but also so many unknowns.  

I personally do not worry about whether another child of ours would have a CDKL5 mutation, anything is possible, but it is not a hereditary genetic disorder in our case.  Could another child have a disability?  Sure, they could, but that would obviously be what was in the cards for us.  Are we crazy?  Well I would say yes since we have chosen to have four kids on separate occasions.  (Insert stick out the tongue face).

Usually I wonder about my older kiddos, but they have mentioned to us about wanting to have another sibling on multiple occasions.  Would Sam and I get a chance to be better "first time parents" in a sense?  (There would be nothing taken for granted that would be for sure).  What if Sonzee had a bad year the same time a new child was born?  So many questions to siphon through, so many answers we might never get.  Nevertheless, since everything often circles back to Sonzee, what I have been sitting here meddling with is maybe becoming a big sister is something we need to add to her adventure list?!

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"hope"

Hope.  Another small string of characters that play with my emotions on a daily basis.  I rely so heavily on this word and its definition, yet at the same time, I would prefer not to give its meaning any time or day.  There is a reason I have a love and hate relationship with this word.  It is one of those words that can make you feel elated and excited.  It can give you something to hold onto when there seems to be nothing to grasp.  Then on the flip side, it allows your mind to wander into a dangerous territory, into the unknown, and to give homage to Gene Wilder, "in [to] a world of pure imagination."

Hope is something I prefer to keep in my back pocket because I am more grounded without it.  There are those rare situations where my guard is mysteriously let down and I let hope sneak up on me.  I really dislike when that happens because when the situation unfolds in a manner that wasn't part of my dream of hope, well, it is safe to say it takes some time for things to get back to normal (and yes, definitely ice cream).

I predicted the results of Sonzee's EEG.  She has done enough of them (18 to be exact) for me to qualify myself as an accurate EEG result predictor.  I am by no means saying I could translate the actual EEG itself, but I can give a fairly accurate description of how the reading will be interpreted.

On Monday I shared my predictions, "I am pretty positive the reading will be "typical Sonzee", with her usual spike waves here and there, but nothing too shocking for a child with a CDKL5 mutation.   What I did not really say in my post were the words on the soundtrack that was playing in my head.

I did not share that there was a part of me that hoped and almost believed the reading would be "typical".  I had dreamt in my mind that her epileptologist would write to me and say, "Randi, this is her best EEG ever.  There is no seizure activity and her background is normal".  Along with the monologue in my mind, I envisioned Sonzee sitting, alone, unsupported.  I pictured Sonzee's picture watermarked with not only "sonyasstory", but also as an advertisement of how a medical cannabis product had completely changed her EEG.  Do not get me wrong, the RSHO is helping her cognitive capabilities (we think?), but nothing has performed the miracles I had hoped.

So now, I am sitting here thinking about hope.  Aggravated with the word even more because it is a necessary evil in order for me to travel along this journey, I would not be able to survive without it.  Yet I am so drained from repeatedly having my hopes blow up in front of my face like a latex balloon (if you are unaware of my fear and hatred of latex balloons, consider this the moment where I let you in on my secret).  While I am so incredibly thankful, that Sonzee's hypsarrhythmia is NOT back.  I am definitely saddened and disheartened that her EEG was not what I dreamed it to be...I guess that is just par for this course.

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Realization

It's EEG day.  I am much more relaxed about the possible results since she started Sabril 2 weeks ago.  I honestly do not expect to be told she has hypsarrhythmia, nor would I expect her background to be typical normal.  I am pretty positive the reading will be "typical Sonzee", with her usual spike waves here and there, but nothing too shocking for a child with a CDKL5 mutation.  Yet I am sitting here for the first time in her life wondering why we are even doing this EEG in the first place.

I have known since her diagnosis that seizures were the most challenging component of a CDKL5 mutation.  We have lived in a constant state of fear that they will cause significant brain damage or take her life.  We have treated her spasms (the most dangerous to development at her age) with steroids and now Sabril.  We have chased after complete control with practically every marijuana and hemp based CBD oil, along with straight THC (go ahead you can judge us).  There is always that wonder about what Sonzee would be like if we could control the seizures.  The fog of seizure control completely taking over the simple fact that she will always be missing a complete CDKL5 protein. 

Despite knowing that seizures are just another side effect of her missing protein, I often forget that even if the seizures are controlled, she will not ever be typical.  Even with complete control, she will always have challenges.  Truthfully, with complete seizure control the types of challenges I have seen in other children with the same diagnosis are in my opinion sometimes more challenging.  To the naked eye our kids look typical, but get up close and it is clear they are not like the average child.  

There really is no winning when it comes to the outcome of Sonzee's EEG results.  No matter what, the outcome is still the same.  If her background is typical, she is not going to miraculously be a typical 18 month old when the leads are removed from her head.  If they are typical Sonzee results, well then tomorrow is just like every other day she has had.  If for some reason my mom gut is on a complete vacation and it turns out that she does have hypsarrhythmia, well I am pretty sure Sam and I are not having her endure another round of steroids.  I personally cannot put her through that again myself.

I am coming to terms with the realization that no matter what we do to stop the seizures, there is nothing we can do to change the importance of the CDKL5 protein...and for that, I need to go and buy myself some more ice cream.

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New realities

It is a Ben and Jerry's Salted Caramel type of night (mainly because I am out of The Tonight Dough starring Jimmy Fallon).  Really, it is more of an ice cream for all times of day type of week.  There have been way too many firsts in too short of an amount of time for this momma bear to process, and by the time this posts, it will only be Wednesday.  The areas leading me to binge eat frozen yummies both leave me (yes you guessed it) with mixed emotions.

On Monday morning, Sam handed me the mail I missed opening on Friday when Sonzee and I got home from California.  It was an envelope from the DMV addressed to Sonzee herself.  I opened it up and placed between the folded pieces of paper was a blue rear-view mirror hanging handicapped tag.  I ran outside to show Sam before he pulled away, to which he flashed me a quick thumbs-up.  I went back into the house with it and placed it on the counter.  I brought it into the car later on and placed it on the top of the center console.  I did not intend to use it, but it was there for that "just in case" moment.

I am filled with sadness that she qualifies for the placard.  I am filled with relief that on 100+ degree-days she will not have to be subjected to the extreme temperatures by us parking further away from where we need to walk.  I am filled with guilt that she is not in a wheelchair, she is so young, and I have a placard for her.  I know the overall definition of my feelings right now is "denial".  I have been here before.  It is a place where I feel the need to justify all of my feelings and simultaneously talk myself out of every justification.  It will take me some time to come to terms with this new reality.  The reality that Sonzee needs a handicap placard.

On Tuesday afternoon, Sonzee had an appointment with a palliative care doctor.  As I mentioned in a Facebook post, palliative care "is specialized medical care for people with serious illnesses.  It focuses on providing relief from the symptoms and stress of a serious illness.  The goal is to improve quality of life for both the patient and the family."  Dr. Wendy has an amazing reputation and I am so grateful that she has taken Sonzee as a patient.  She will be a liaison between all members of her current team.  She will make our hospitalizations a better experience.  She is developing an ER protocol for us to bring when we go, and I am already at ease thinking about any future visit we will be making to PCH.  She will help us with any life altering decisions that may need to be made.  I am so very excited to have Dr. Wendy on our side and on our team.  Yet again, I am so sad that Sonzee requires the use of a palliative doctor.  The topics discussed during our visit today have never been brought up during well checks with any of my other children.  We did not discuss anything that Sam and I have not talked about on our own, but it was the first time we were asked some of the more not so publicly discussed topics.  It is just another new reality.  The reality that Sonzee, as well as Sam and myself, will benefit from her care.

Overall, I feel my emotions are in balance, in that both the sadness and happiness are being evenly held.  This is just another chapter in Sonya's Story, and we will keep on following where she takes us, I will just make sure there is a fully stocked freezer of Ben and Jerry's.  

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