Light

One of the most important lessons I have learned while being part of Sonya's story is that moment to moment everything can change and without warning.  One minute we were celebrating seizure freedom and the next we had the seizure tracker app opened and the timer ticking by.  One minute we were trying to give her a little taste of ice cream or frosting and the next we were changing her clothing and cleaning up the mess brought on by a miniscule amount of food.  One minute we were relishing the fact that she was able to roll from side to tummy, and the next we had to worry about potential bone she could be fracturing.  Trying to keep the imaginary see-saw of positive and less desirable balanced is a skill we have not yet mastered, yet we continually strive for.

As we near on two weeks since our 10 days in the hospital I am slowly coming closer to crawling out of the hole I fell into.  Every day home is another day our family gets to rebuild.  It is another day we can make memories together and another day we can attempt to celebrate the successes, whether big or small for each specific moment that occurs.  The further we get from day #1 of admission is another day to reflect on something potentially positive that is happening, which is honestly a daily struggle for me, but I do try.  I have to constantly fight within my mind to focus on happy thoughts and push away the ones that ultimately bring on fear, panic, and anxiety.  Then the rain came this past week to Phoenix.

Heavy downpours came from the sky, roads were flooded, debris was scattered into the streets and then just as fast as the storms came in, they passed.  They left behind floods in some areas, but overall, the sun came out and light blue sky returned along with 65-70-degree weather.  Then today, Sonzee smiled.  The breeze hit her face as I placed her into her wheelchair while I took her out of the house for her first activity since September 16 and our little bear smiled.  She smiled throughout the entire 2 hours she was with her (best) buddy Emma and she smiled when she came home.  Today was just another reminder that the storms will undoubtedly be back, but the image of her quirky little grin while holding her pacifier in her mouth will make the next one a little more bearable.

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Dear parents

Dear parents who have a child with a life limiting diagnosis,

I know you are afraid.  You dreamt about this child long before he or she was born, and those dreams did not involve a rare disorder.  Now you have found yourself parenting in uncharted waters, unsure of how your child's particular story is going to end but knowing in the deep recesses of your soul it most likely will end before yours.  Not everyone will understand, not even every parent who has a child with the same diagnosis of yours, but that is okay, your fears are real, and the thoughts are okay.

I know this is scary.  Each day you wake up wondering if today will be your child’s first time completing a long overdue inch-stone, or the last time he or she will make an attempt.  You do everything you can throughout the day to ensure that if tomorrow does not occur you did the best that you could, hoping that it will maybe prevent the inevitable guilt you will most likely feel when eventually tomorrow does not come.  When the day comes to a close you secretly wonder if this will be your last time you will both take part in their bedtime routine.  You kiss your child goodnight and give an extra squeeze, you just never know.

I know this is lonely.  The subject remains taboo.  You fight within yourself whenever one of these negative thoughts pop into your mind.  Others will tell you to "not to think like this" and or that "it is not healthy", so you are left to wonder if you are the only one who thinks about these things.  You are afraid to talk about death and your child in the same sentence openly, not wanting to be silenced by those who might disagree with your feelings or be misunderstood by those who really have no idea.  You feel a sense of entrapment, suffocation, and uncertainty.

I know this is your life.  So, do your best to make the most of every situation.  If you have other children, then these thoughts in the back of your mind will inevitably make you a better parent.  I know you are not alone, because I am someone who gets it, I am someone who thinks these thoughts, I am someone who lives this journey along with you, and I am someone who will be here when your reality becomes real.

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Looks can be deceiving

I have been keeping Sonzee's baby brother out of the public as much as possible since he was born because once you have a had a newborn baby hospitalized, regardless of the reasoning, you don't want to relive any part of that hellish event what-so-ever.  So with it being a particularly bad flu and RSV season, limited exposure to others has been our way of life.  With him being a little over a month, I decided to take him with me this morning to pick up curbside groceries and then to the post office to run in quickly to buy some stamps and send out 4 larger brown envelopes.

I was carrying him on my chest and was waiting in line to weigh the envelopes when a nice older woman walked up behind me and started with her doting comments. 

"Ooooohhhh, a brand new baby"

(I smiled)

"Ohhhh, so tiny...how old?"

("a month")

"Oh, 30 days...so sweet....well, he looks healthy...."

(head nod and smile)

There I stood in the line at the post office, stunned into silence, not knowing what to say and not wanting to engage in dialogue, but with my mind having so much to say.   "Ya, so does my atypical toddler who has a rare genetic mutation and is at home with her nurse"..."What does that even mean? What exactly is your point? and What made you say that?"  My heart stung a little and sadness overtook me for the split second that it took before it was my turn at the kiosk.

When Sonzee was a month old she was already diagnosed with epilepsy.  For all intents and purposes, she too "looked healthy" despite graduating out of the NICU just 2 weeks prior.  She was growing typically and in fact was my only daughter to be in the 50th percentile for height and weight (ever).  She didn't have any feeding tubes or surgical scars.  She had already had 3 lumbar punctures, a 45 min EEG, MRI, numerous blood tests, genetic testing pending, and a PEMU stay under her belt.  She was already delayed in all areas of her development, but her deficits were not visible to the naked eye.  I remember how torn I was by the fact that people couldn't tell her daily struggles by merely looking at her.  No physical representation of the inner hell she was experiencing daily or the struggles we were facing.

I kissed Sonzee's brother's head and wondered what this woman thought "unhealthy" looked like.  I wondered what experiences in her life, with maybe her child or grandchild, specifically compelled her to make the comment.  I can't and wouldn't honestly be able to wrap my head around Sonzee's brother (g-d forbid) not being healthy, but we don't know what his journey has in store, and all I have to say is from my personal experience, looks can be deceiving.

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Trying to find the positive

Whenever I find myself getting sucked into the trenches I try to focus on something positive, even if it is a reach.  There is always a fine line of looking at the bright side of a situation and embracing it, but not fully relying on it remaining that way.  For me I have to be careful because the path of this journey can change in a second (literally) and then the positive reference is no longer.  It is because of the experiences we have had over the past two years, (during springtime especially) that I am having finding it more challenging than usual to find the "right" positive point.

It has been a little over 24 hours since Sonzee's last seizure.  It wasn't one of the scary ones, it didn't require oxygen after it was over, and she didn't sleep for hours on end.  I am so grateful for the past 24 hours, but I know better.  Maybe her medication increases are finally working.  Maybe her brain is being nice to her and giving her a break because it's been a pretty awful week, or maybe it is just giving her some time because of what is yet to come.  I wish I could be as excited as I once was over making it to 24 hours, but two years in and I know while it is a huge deal, the celebration will not last.  I am numb to seizures.  I wait and expect them and am more surprised than not when they do not happen.  Truthfully I prefer knowing they are coming because it is a certainty, something I can "plan", something "reliable", I do not like to be sitting here in anticipation.  So I am trying to focus on the past 24 hours...but I know the clock will reset.

It has been a significant amount of time since Sonzee has been inpatient and last year we spent approximately 3 out of 5 months in the hospital (not consecutively) from January-June.  Her health since her NJ tube was placed has been relatively stable, her feeding continues to be tolerated, her seizures haven't landed us in the emergency room requiring rescue medications.  I am truly appreciative of these blessings, but I know things can change by the time this post publishes.  I know too much of what can happen and I know she is not immune to anything.  I am trying to focus on the positive of all I have listed, but that almost feels as if I am asking for a challenge...and I am not all for tempting fate.

It would be nice if the current situation we were in did not leave me feeling a bit uneasy.  It is as if my brain and body subconsciously know things are going to spiral out of control.  I hope it is merely the fear of history repeating itself.  Since we are in this uncertain limbo, I am going to do my best to focus on the fact that she is stable and continue to try and find the "perfect" positive.
 

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Meant to be.

So much has happened in our lives since Thanksgiving of 2015.  As I take a look at our "year in review" it is brings up a multitude of emotions.  There were days that were just so amazing it is challenging to give them justice with only words.  At the same time, there were days I would rather have never had and wish I could forget.  As a family, we participated in some experiences that were no different from years past, but there were also new ones.  No matter what the outcome of each one was, the experience itself continues to mold me, strengthen me, and help me to complete my purpose here on earth.  I know the same holds true for Sonzee and all of our children.  

As I read the quote posted above and I apply it to Sonzee, I am so thankful that she is laying in her favorite position on the floor half in her sensory box with her right thumb in her mouth and asleep.  She has managed to be outpatient for 28 days (hmm, I see that must be our magic number), we may finally have a solution to her GI issues and she has a new activity chair that makes her capable of being an active member of our family.  There are so many things to be thankful for when it comes to how she is doing and I am so thankful that this is where she is meant to be.

I think this is going to be one of those refrigerator magnet types of quotes for me.  While there were many outcomes that occurred for me personally over this past year that I may not have agreed with, they needed to happen for me to be where I am at emotionally, physically, and spiritually.  While all of those are different than where I was typing my Thanksgiving post one year ago, and while I may not be 100% okay with that now or for whatever is in store for me over the next year...it will always be exactly where and how it is meant to be.

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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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"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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What's wrong with her?

They warn you to brace yourself; to be sure you are ready for that dreaded moment.  The moment that will come out of the blue, unexpected and will catch you completely off guard.  The one where you are simply just being a typical mom and then the innocent question presents itself.  "What's wrong with her"?  If you have a child with special needs, you might have even prepared a script for when this moment might occur.  Odds are even if you did, you will forget it when the time comes anyway and in some instances that might not be the worst thing.  What is not always shared is that sometimes this question will actually evoke a feeling inside you not of anger nor of sadness, but actually of pride and happiness.

There we were at a playground on Saturday afternoon.  Two seven-year-old girls playing with Sonzee's older sister walked over to the stroller.  They looked at little bear and they said, "What's wrong with her?" as they pointed to the feeding tube coming out from her nose.  A look of curiosity and confusion filled their faces.  I did not feel the punch in the gut that I would have expected.  I did not panic, and I did not want to crawl inside a cave.  I wanted to celebrate.  I wanted to educate.  I wanted to explain as much as they wanted to know.

What courage it took these girls to ask and not point, stare, and walk away.  They were so interested in what I told them, they continued to ask questions.  They looked at her and said "Hi", of course, Sonzee did not give a bright-toothed grin, nor did she even acknowledge they were there.  "How old is she?", "17 months"...Does she talk?”  ..."no, she can't", I still turned to Sonzee and I said, "Say hi Sonzee"...."How does she say hi if she can't talk?”  ...I am still figuring a good answer for that question and it has been 2 days.  I explained her feeding tube in the best way possible so that two young girls who probably have never thought about their anatomy involving the digestion of food could understand.  They walked away satisfied with my replies.  I felt relief at how the exchange occurred.  I felt excited they cared enough to ask questions.

I anticipated a moment like this to leave me choking back tears and feeling discouraged.  Instead, I found myself beaming with pride and happiness that Sonzee mattered.  There are so many times that I am asked, "How old is she?”  I reply "17 months"....silence follows.  I often wonder if I lied and said she was 7 months would people then reply, "Oh she is so cute", "Look at her little rolls", "She is just so yummy".  I can see the discomfort on the faces of many when they walk over and see the tube in her nose.  I know they want to know why.  I so wish they would ask.  I will continue to brace myself for the day that a question rubs me the wrong way, but celebrate the opportunity to educate another person.

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Closer than yesterday

I have always been my own worst enemy when it comes to expectations I have set for myself.  I can be hard on myself for getting easily frustrated with the kids, not being as well put together as other mother's, not being able to do everything that I have set forth on my agenda for the day.  There are plenty of days that I stare into space for a good majority and then find myself upset that I did not take advantage of the time I could have spent doing other things, maybe "more" necessary things.  I am sure there are people who tell me that I did the best I could for the day in question.

If you are a part of our Facebook family then you probably have seen the pictures of Sonzee bear working hard on her physical skills.  I cannot speak for her, but I can guess that if she could use her words, she would tell me how frustrated she is with herself for not being able to bear weight on her arms and knees.  I think she might express disappointment within herself for not having met the age appropriate milestones that have passed by.  If she could talk and she did tell me that, it would be beyond heartbreaking.  I know how hard she is working, I know that even though it may not appear obvious to the casual onlooker, each day she is achieving little Sonzee-Stones.  

I have been speaking with others who are feeling as if their life is not all wrapped up neatly in the perfect box with the perfect bow.  Things in their life are a little off kilter and they are not sure how to regain their focus.  They have conveyed their fears and their anxiety, and admitted they are just so unsure about the direction their life is going.  They have doubts about employment, mothering, and their day to day actions. 

It can be so easy to be bogged down by the hustle and bustle of everyday life that we do not really see the bigger picture.  It is not every day that we typically sit in a moment of reflection and really realize all each of us has endured over the years causing us to make certain decisions.  We all have personal challenges and difficulties we must overcome and little by little every day we all do just that.  Every day is a new day and a chance for us to start fresh but not to forget how hard we have worked to be where we are at this exact moment.  I think this is one of those quotes that need to be turned into a magnet and placed in the kitchen, because...

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Summer changes

It has been a week since our adventure on the east coast began.  The fantasy of this experience has been building up in my mind for about 2 years and more so since we paid the deposit on the town house rental back in February.  When Sonzee landed herself inpatient in May, we quickly realized that our planned summer of tranquility and family bonding might not occur in the way imagined.  As June approached at an insanely fast rate, this trip felt slightly out of reach.  Similar to a person reaching out their hand, but they are just a fingertip shy of being grabbed.  Thankfully, in this case we were able to get a grip at the last minute.

I am not naive enough to think that by flying multiple time zones away that Sonzee's challenges and our predicament will simply vanish.  I know no matter where we go or where we are that things will not drastically change.  Sonzee is not going to have a functional CDKL5 gene just because we are in a calming and cooler climate.  Yet, somehow the fresh air, the ability to take multiple outdoor walks, the chance for her to swing and go to an outdoor park in the middle of summer are making this journey a gazillion times better.  

The fresh air of the Catskills is doing wonders for all of us as a family, I especially.  The kids are able to run wild and free outdoors.  They walk to their friends and play in a grassy field with other children and I am able to fight my urge to be the helicopter mother.  The pace is ironically slow for us being in New York.  There is only camp drop off and pick up besides Sonzee's medication alarms that provide an actual schedule.  I have been able to spend more quality time with Sonzee's siblings, my patience is slowly growing, the weights and pressures of everyday are slowly lifting.  I am so glad this summer dream was able to become a reality, and I look forward to making many more memories this summer and in years to come.  Sometimes changing your environment can actually change your perspective in more ways than can even imagine. 

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