Monday, June 18, 2018

Epilepsy Blog Relay: Subtle Seizures


This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018.  Follow along!

When our daughter had her first seizure it was not in a way I would have thought a seizure would look like.  It was subtle, quick, and questionable.  I honestly wonder how many seizures in her first days I missed, or how many I saw but attributed to something else.  I often wonder if I felt them in utero, or if her first one occurred right after birth.  In hindsight, the "wonky eye movement" we saw, that was attributed to just being "weird baby" have become her trademark.  So many times her simple eye roll will be missed by those who are unfamiliar with her, and to be honest even those who know her extremely well can still miss these types, or just think she is being sassy.  They are so fast that epileptologists who are not her own have missed them on an EEG.  They happen when you turn your head to pick something up, when you blink, when you open the fridge, or when you rub your eyes.  They are less than a second and look benign.

So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, "Oh wow, I never would have known that was seizure" and "How did you know that was a seizure?" The worst part about her trademark eye rolls are that they are just as devastating to her brain as her other types.  They tend to occur in clusters, seconds apart, and for lengthy periods of time.  They are the most difficult type for us to stop.  It is this type that resulted in a call to 911, multiple rescue medications, and at the time a new to her fancy diagnosis of "non-convulsive status epilepticus".   

Before 2015 I had never thought about seizures much less known anything significant about how they might present.  Our family has now seen so many various presentations of seizures that our family is quite proficient in identifying most (if not all) types of seizure activity.  It is amazing that our 5, 6, and 8 year old can tell you the intricacies of different types of seizures.  What is so important to know about seizures is that they are not always obvious and they are not what you might envision.  

NEXT UP: Be sure to check out the next post by Abby Gustus Alford at www.livingwellwithepilepsy.com
TWITTER CHAT: Save the date for the  #LivingWellChat on June 30 at 7PM ET.


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Sunday, June 17, 2018

1 in 46,000


One of Sonzee's CDKL5 sister's mom created the image above.  I saw it circulate in our parent support page about 4 days ago and to be honest I kept scrolling.  I am unsure what deep rooted psychological reason it might be due to, but the "easy" answer is just that it seemed almost unheard of to believe 2 children a week could possibly be diagnosed with CDKL5.  It is rare after all, that number makes it feel much, much, much more common.  I let the image go out of my mind for a bit, and then Friday afternoon I reached out to the mom and asked her more about the statistic.  She directed me to the CDKL5 UK FAQ page and then I reached out to another parent for confirmation.  1 in 46,000. 

1 in 46,000, the amount of innocent children, and by default, their families end up learning the ins and outs of living life with a CDKL5 Deficiency Disorder.  This is based on a reliable testing agency in Europe that estimates incidence.  To be honest after I learned this, it just made me angry.  Why is this number as high as it is?  De Novo mutations are the main kind of CDKL5 mutations, meaning that while genetic, neither mother nor father has the mutation themselves and so "no one is responsible", yet 1 in 46,000 times this is estimated to occur.  Do not get me wrong, 1 in 46,000 is still considered "rare", and for comparison sake, the incidence of Rett Syndrome is 1 in 10,000, but welcoming an average of two new families a week to our CDKL5 family just hurts my heart.

Today, like every June 17 of Sonzee's life I will give homage to this day.  It is bitter sweet as I am grateful we have a designated day due to the advances of science, but angry that such a day even has to exist.  This year, our day of awareness coincides with Father's Day in America, and for the first time since 2015, I have not told my kids that today is awareness day.  We spend every day during the year living, breathing, witnessing, and being aware of the effects and impact of CDKL5, so today we will honor Sam and be thankful that Sonzee has an amazing dad and tomorrow we will back to spreading awareness of CDKL5.



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Wednesday, June 13, 2018

Holding

Over the last couple of weeks Sonzee's baby brother had a massive burst with his skill acquisition.  He went from being a little "behind" to right on target with just some little kinks that he will have to iron out as he continues to grow.  He is 6.5 months old and he is rolling around and able to sit on his own for increasing lengths of time.  He is reaching out for and exploring his toys more often and his personality is shining through.  My most and least favorite part of the effects of his current gains is blended into one.  Nothing has ever brought me as much joy as the relationships I have watched develop between my children.  However, this week nothing hurt quite as much as watching my older kiddos run passed Sonzee after they came home and over to their brother, who was sitting up, so eager to see them with a grin wider than his little face could handle.

In one instance I was hit with so many emotions.  They smothered him in kisses and hugs while picking up his hands and getting excited with him.  After close to a minute of watching them interact, I said from behind the counter, "Did you say hi to Sonzee?"  My oldest daughter quickly turned around and went right over to Sonzee and gave her kisses and asked about her day, but the damage was done.  I was not upset or mad at my older children, these situations happen.  I understand what it is like to be drawn to those toothless smiles, the sweet coos, and the reciprocity of a more typical child.  Yet my heart broke for Sonzee.  She had to have known.  She used to be the one they ran to when they came in the door.  Three years into this journey and it amazes me each time I experience something new that brings about the "old" feelings of anger, frustration, sadness, and grief over the loss of what should have been a healthy 4th child.

As this journey continues it does not get any easier, but rather the feelings just ebb and flow.  Some days the weight is almost unbearable and the pain feels as fresh as it did back in 2015.  Then there are times when I am unphased by our situation and "it is what it is".  There is no way of knowing what each day will bring, and I wish I knew in advance because more often than not I am just holding on and barely holding on at the same time.

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Wednesday, June 6, 2018

A wish

I was putting my older girls to bed last night when I decided to ask each of them what they disliked most about CDKL5.  The younger one quickly said "the seizures", and after mulling it over a bit the oldest said "it is sad".  I first asked the younger one, "why do you dislike the seizures?", and she replied by putting her hands up, clenching her jaw, and saying "because you look like this".  I then asked my oldest, "why is it sad?", and I was told "because you cannot talk".  As I am sitting here I am asking myself the same question and I feel like it is similar to being asked, "would you rather be deaf or blind?".  Neither is ideal, both have their challenges, and I would rather none of the above.  However, if I had to choose what I dislike most about Sonzee's CDKL5 mutation my answer would be that she is trapped.

On Monday evening I received an email from one of Sonzee's doctors suggesting we put her back on the pain medication, gabapentin, at a higher dose than last time to help with the visceral hyperalgesia.  What if she doesn't even have stomach or intestinal pain and I am misinterpreting her vocalizations?  What if she is itchy or nauseous?  What if she just has a headache or is dizzy from all of the other medications she is on?  What if she is just a sassy toddler that cannot get her point across and she wants to be doing something else besides what we think she is wanting to do?

If one wish of mine would be granted, I would use it to have a day where Sonya could communicate to me.  A day where we could come up with a system for me to learn her specific movements, facial expressions, and vocalizations so that when our day was done I would still be able to understand her wants and needs.  I would ask her to tell me how she would prefer to be handled during a seizure and how best we could comfort her when it was over.  I would want her to tell me if I have completely missed the mark with my advocating for things I think she wants or my assumptions of her ailments.  There is not much else that is worse than the feeling I have in the pit of my stomach of being wrong about me potentially misinterpreting her discomforts and her being unable to tell me I am wrong.

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Monday, June 4, 2018

More than seizures

Today marks day 4 of CDKL5 awareness month.  It is a month I have been lucky enough to honor over the 3 years of Sonzee's life.  The entire month brings similar feelings to that of her diagnosis day; a mixture of gratitude for having an answer to the "why", and pain because of everything that comes with the 5 characters that don't go away when awareness month ends.  Historically, I spend each day of this month trying to balance the positives and negatives that have come with this diagnosis, not wanting to highlight only the bad but trying to give the weight of these characters their due justice.  The truth is while the hallmark of CDKL5 is early onset, difficult to control seizures, CDKL5 is more than just seizures.

Two years ago yesterday Sonzee was finally discharged from a 28 day hospital stay.  It was a discharge we were not sure would occur, and the experience left us jolted to the core.  It was during that stay that it was clear she would most likely never tolerate feeds into her stomach again, 2 years later and those thoughts are pretty much confirmed.  She is still fighting the same battle and we still have yet to figure out how to help her.  That sadly seems to be a recurring theme, and it weighs heavily on me as a mother.  My job is to not allow her to suffer, and CDKL5 makes that nearly impossible on every level.

Sonzee is 3 years and 3.5 months old, yet our 6 month old moves circles around her, almost literally.  She cannot sit, she cannot crawl, nor can she walk.  I am able to say those words without tears now, and we focus on what makes her happy, but the facts still tug at my heart.  I wish for her that she was able to sit, that she was able to crawl so she could get to toys or places she wants, and that she was able to functionally use her hands to request hugs when she wants.  I wish for her that her voice was not locked inside her unable to communicate her basic wants and needs.

I do not need a month to remind me of everything that having a CDKL5 mutation has taken from Sonzee or our family.  I live the effects every hour of every day, and when this dreaded deficiency takes her earthly vessel from us, it will continue to wreak its havoc on those of us who have fallen in love with her over the years.  What this month simply does is allow me to reflect on the significance this string of characters has on Sonzee and every child impacted and share the weight so that I do not have to carry it alone.

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Friday, June 1, 2018

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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Wednesday, May 30, 2018

But then...

More times than I care to recount in the past 3 years I have made a "prayer request" post for one of our CDKL5 siblings or their family as they were in the hospital, on hospice, or already passed.  The topic no one wants to openly discuss but that every parent who has a child with CDKL5 tucks into the recesses of their mind.  Maybe we can rationalize that these posts are rare.  Maybe we can pretend that because there are much older children who are diagnosed with CDKL5, this won't "happen to us".  Maybe, because this time it wasn't us, we can pray for a multitude of reasons and go back to our reality.  Maybe when we wake up the post will have been a "false alarm" and we can all breathe a sigh of relief.

While there is a numbness that begins to creep into your body after making so many of these types of posts and losing so many of our beautiful children, there are always pieces of your heart that will never be put back together.  A portion that breaks because this child has been "adopted" into your family, and you have most likely been following his or her journey and witnessed his or her struggles and accomplishments along the way.  A portion that breaks because you have most likely stood in this position before with another family and you have an idea of how this is going to unfold and you know a parent is about to part of the group that you still cannot understand even exists and never want any part of.

While your heart is broken for this family, the reality is that your heart is also broken for yourself.  You cannot possibly imagine your child's journey following in the same manner, even if you could imagine it, you do not ever want to.  You cannot fathom how this family is going to make it through this, because it is incomprehensible how you would.  Other families will tell you that you cannot dwell on it, that you cannot live life fearful of this occurring, to an extent I think that is accurate, but then the reality sets in.

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Monday, May 28, 2018

Now


Yesterday was Sonzee's 5-year-old sister's birthday celebration.  It was a planned "girls only" party.  8 girls including the birthday girl were going to spend the morning getting their hair, nails, and makeup done.  My heart yearned for an inclusive experience for Sonzee.  I was apprehensive from the time of booking how this would play out, but I knew it was out of my hands.  I have learned to set the standards high for Sonzee, but to keep my expectations low to protect myself from the potential pain that comes with the "special needs life disappointment".  So, when we arrived at the facility and the girls began to rotate into their respective stations I continuously mentioned that we would try Sonzee, but that it was okay if it did not work out.  I yearned for her to take part without it being stressful for her, without her being upset, and without me wishing the outcome had turned out differently.  

Finally, it was her turn.  I was nervous about how the staffing girls doing hair, makeup, and nails would react to her continuous body movements.  It did require Sonzee's sister and myself to hold her hands and feet to get her nails done due to her kicking her feet around and her desire to want to eat her fingers throughout, but once she realized she was being pampered she settled right down and only got a little nail polish on her shorts and inner thigh.  She did not argue one time while the girl put gel in or combed her hair, or spent time doing a french braid side pony tail.  She loved the glitter shower at the end.  I helped make a beaded necklace with her, to be honest she was not overly thrilled (but those beads are tiny, and I honestly do not care for the patience it takes either).  She danced with her sister, and it brought me such an immense amount of joy watching her be included.  The staff included her, the girls included her, her sisters included her.  My heart was not prepared for the amazingness that occurred.


Lately things have not been the best.  We try to focus on the positive, but the weight of CDKL5 has been increasingly heavy over here.  There is the false sense of security because things have been going okay with the big picture, but the little things are what make the floor fall out from under us in an instant.  When will that happen?  The uncertainty of everything remains only a small thought away, and it takes a toll the further into this journey we travel.  It is easy to get caught up in that ball of yarn.  Yesterday while celebrating the past 5 amazing years I was reminded about happiness and joy.  I was reminded that life passes by in an instant and it will not be slowing down.  I was reminded about Sonzee-stones, simplicity, and the little things.  I was reminded that there is nothing I can do about the future, nothing I can do to fix the past, and that I need to be present in the now.


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Tuesday, May 22, 2018

Able

Image result for quotes about it being one of those weeks

It is 1:29am, the house is quiet except for the washing machine and dryer that are spinning in the background, and my headphones playing music that takes me back to my high school and college years.  The lump in my throat keeps trying to bring itself to the surface and I feel the tears in my eyes trying to break free.  I am honestly not in the mood, so I will force a quick swallow and give a fast blink.   Sonzee's "obvious seizure" seizure freedom came to an end today.  As odd as this will sound, we are thankful.  She has not been herself with them gone.  She has spent the better part of the past week crying, whining, chewing her hands and vocalizing her discomforts.  Pain medication has been her only reprieve and we honestly have no idea what we have been treating.  With the return of a new type of seizure also brought her some much needed calmness, and me some much needed steps toward sanity.

There will never be any winning when it comes to this life of hers missing a healthy CDKL5 gene.  Seizures, no seizures, it all sucks.  I am unfazed by this portion of the journey at this point, completely used to it and out of the umph to convince myself that things will ever significantly change at this point.  I keep wondering how we ended up with this as our path to walk, trying not to question why we were the ones chosen to deal with what continues to feel an insurmountable challenge.  I keep wondering when our reprieve will come, when we will be thrown a bone, because it seems more challenges just continue to get sent our way.  It leaves me wondering what am I doing wrong?  What is it I still need to learn?

Tomorrow our middle girl turns five.  I often wonder what things would look like had we stopped having kids after we had her.  Where would our lives be?  How would her and her older brother and sister's lives look like.  It is hard to believe that had we never had Sonzee or her younger brother our youngest would be five years old.  Things would be vastly different.  While it would be easy to say that things could have been easier, that we would not have any challenges, I do not know if I truly believe that.  Having had Sonzee I have always wondered if she took on the task of a challenging life to spare something horrible happening to one of her siblings.

As the years have gone by.  As Sam and I have been given different experiences on our parenting journey some have been more difficult than others.  Each one has impacted us in different ways, and thankfully made us stronger individually and as a unit.  We do not have the answers, we have no idea where this path is leading, or what the story will look like at the end.  What I can say with certainty is that it definitely has not gotten easier, it most likely will not, but I suppose have been gaining the correct tools along the way and each time something new is thrown our way, we are getting better at handling it.  

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Friday, May 18, 2018

Playing the part

I often find myself wondering why people are "chosen" to live the lives they are specifically given.  I like to equate it to casting actors in a movie.  The majority of the time I find myself saying "no one else could have done that role as perfectly, the casting director did a fantastic job".  Occasionally, there are those movies that might have been a bigger success or at least turned out a bit differently had another person been given the part.  However, there is nothing that can be done after the roles are assigned and the movie is created. In all fairness, it is difficult to see how good or bad the movie will be until it all comes together and at that point the actors did their bests, the movie is what it is, and there is no going back to the drawing board.

The thing about casting is that it is highly subjective.  For whatever reason the specific actor was picked and not everyone might agree with that choice.  I find myself wondering if the actor selected always feels that it was the best choice.  Maybe someone else urged them to try out.  Maybe they went for it on a whim.  Maybe they did not really feel they would get it.  Maybe in the end they did not actually want to be that character.  Yet here they are given a specific opportunity to represent this character.  They have to now give it their all and put their best foot forward.  They have to become one with this character as if they have always been this person.  They have to own their role.  For better or worse this is what it is.  There are no ifs, ands or buts about it. 

This week especially this has been on my mind.  I have been cast into the position I have been for literally G-d only knows why.  Despite my hefty desire to shout up at the sky and say "what are you doing?", "why is it I can handle this?", and "how is this even possible?" I am playing this part because it is mine.  I didn't realize I had been auditioning and I am sure someone else can do this entirely better.  I have no idea in what direction this movie is going, or what the end will look like.  All I know is that this was given to me for a specific reason and like I have been doing since April 2015, I will just keep having to fake it until I make it.



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Monday, May 14, 2018

Revelation



"You can't change the outcome, but you will never get the time back"-Raquel Schnitzer

There have been a lot of different things going on lately, none of which I have any control over, and  naturally that sends my brain into a tailspin.  The fear of the unknown tends to paralyze me in a way that makes me over analyze and panic about every little thing.  No matter what I do it is nearly impossible for me to stay focused in the moment and actually be present because I am dreading what might be.  I dislike the feeling immensely, but also have found it an insurmountable task to focus on anything but, until yesterday.

Yesterday was mother's day.  A day that I have been honoring for myself since 2010 when our first daughter was born.  So much has happened to make me the mom that I currently am over these past 8 years.  Yesterday standing outside a Starbucks after painting pottery Sam took this picture.

Image may contain: 6 people, including Randi Zaila, people smiling, people sitting

I studied this picture over and over, and the quote above struck me like a lightning bolt.  Whatever "big picture" outcome is going to unfold in the lives of my children or myself I will never have a say.  As hard a pill that is to swallow, I cannot do anything about it.  I can assist with the twists and turns, but if I spend all my time and energy worrying about where the roads will lead I am going to miss the entire point and joy of this life.  Eventually the answers to all the questions will be given.  They may or may not be the ones I want, but in the end, what will matter is what we all did together and the fun times we had in the process.  

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Tuesday, May 8, 2018

Handling it...

It has been a year and 3 days since this post was written.  I was around 2.5 months pregnant and too afraid to talk about it, for so many reasons.  I had lost the pregnancy before, we were debating on what, if any prenatal testing we would be doing, and I was so afraid of people who knew our situation with Sonzee judging our decision to have another child.  While the odds of having another child with CDKL5 are extremely rare, especially since neither Sam nor I have a mutated CDKL5 gene, we have 3 other children without a mutated CDKL5 gene, and because Sonzee's mutation is de novo, we were not really concerned that our next child would have the same mutation, but what about something else?  I distinctly remember carefully choosing the closing sentences of that post because I was trying to believe this to be the case.
I do believe everything will be the way it is meant to be, but no, I do not always feel things will always be fine.  I do however believe no matter what it is, you will be able to handle it.
 Here I sit a year and 3 days later wondering if I am "handling it".  Part of me feels like a completely unraveled ball of yarn.  I feel the lowest in my belief of "everything being fine", in having faith that this, our life, is what "is meant to be", and that I am actually able to handle everything being thrown my way.  I do not recall a point in my life that I have been so afraid of what new piece of information I will be given.  When everything "works itself out", will it be what my both my heart and brain want and need?  I do not feel special because I was "chosen to handle" the situations I have been given.  I know it takes a much higher level of person to feel blessed and chosen to be fighting certain battles, and to be honest, I am just not there. 



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Wednesday, May 2, 2018

Weather

We woke up this morning to a gloomy sky and then some morning rain.  I love that the high today will be 74, which beats the 104 it is supposed to get to over the weekend.  Sonzee was up early this morning whimpering and uncomfortable.  She has been back at this routine for more than couple of days now. The catch 22 of her body ridding itself of Onfi is the fact that she is either more aware of her discomforts or now able to express them.  On the one hand it is so disheartening, but on the other, at least she can communicate with us.  Sadly, it does not put her in a much better position because we are still at a loss on how to help her.

It had been so long since she was in routine apparent discomfort, we were not sure why she stopped complaining, so we let it go.  We were fighting bigger battles trying to get her seizures under some sort of control, which continues to seem pointless, but it gives me something to do.  The seizures I know are an endless battle, the GI issues I feel should have some sort of resolve, yet the hamster wheel continues to spin, and we continue to get nowhere.  It is difficult to decipher if the seizures are causing the GI issues or vice versa, the two are so closely intertwined, we are playing another version of "which came first, the chicken or the egg?" and nothing we try seems to help either.


I feel like Sonzee's challenges are like the rain we had this morning, and weather in general.  They come down hard and unforgiving for a period and then they slowly get worked on, but not completely because there will be sprinkles for some time after.  Then eventually the skies will clear, and the sun will shine brightly, and we will enjoy those days for however long they last.  But the rain will become more frequent until monsoon season is in full force and we will do our best to stay dry.


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Monday, April 30, 2018

Wonder

Last night we went to a BBQ for dinner.  Our friends have so many toys and a huge backyard playground, so it was about 5 seconds after we arrived that the kids disappeared.  The weather was actually perfect for Arizona conditions, which meant we were going to eat outside.  "Perfect" still means too hot for Sonzee until the sun sets, so we parked her wheelchair in front of the screen door so she could be with us from the air conditioned house, and we sat at the table right outside.  The children were running around, her baby brother was being passed back and forth between Sam and myself, and she was happily playing with her hands in her chair.

3 years in and I am beyond the daydream of seeing Sonzee playing with her siblings by the swing set or running around.  My mind knows better than to even go into that zone, but my heart, well that does not always get the memo.  I sat at the table having a fantastic time talking, laughing, smiling, and truly enjoying myself, but part of me was with Sonzee wondering what she was thinking.  Was she really happy sitting in front of the screen? Did she want to be running around with her siblings?  Was she really content?  Does the heat really bother her?

I hate that so many times she is physically with us, but we are not completely present with her.  We are unable to cross over into her world, or be privy to any of her thoughts.  Even though we walk over to her, give her a kiss every time we walk by, and say "hey Sonzee, how's it going?", I feel like we are neglecting her.  I can't help but wonder if what we do is okay, or if she wishes it were different, that we were different with her.  As soon as the sun was out of a direct hit, Sam brought her outside and let her enjoy the breeze.  She loves sitting in the breeze, and so there she sat playing with her hands, looking as if she couldn't be happier.  Yet, I kept glancing over wondering if she could be.

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Tuesday, April 24, 2018

Inner conflict

I have been staring at an empty blog page for close to 2 hours.  I have so many things going through my mind and emotions traveling through my body.  My inner dialogue is about as organized as my diaper bag, and to lend some insight, I just took out an extra outfit for Sonzee's baby brother that was a size "Newborn"...he will be 5 months in less than a week.  For some reason, the impact of CDKL5 is all of a sudden just hitting me hard, and I cannot escape it. 

While the more rationale part of my brain tells me “You cannot live like this.”, the other parts are not strong enough to win that argument.  The trauma caused by this diagnosis has planted its roots deep into my psyche, making things feel impossible.  I try not to live in the fear of the potential of losing Sonzee on a daily basis, telling myself that “the length of life is not certain for any of my children”.  I am trying to convince myself that Sonzee’s baby brother is going to be a typically developing child, and that when my children have “minor aches and pains”, they are just minor, that they “will not be the worst case”.


I cannot decide if I am spending more of my time panicked about the potential “worst cases” or trying to thwart those thoughts?  Each day I wake up and for a split second I feel calm and at inner peace.  Then the panic fills my chest as if I just breathed it in, and then it finds a nice cozy spot inside and just sits.  I cannot breathe it out, I cannot make it go away.  Every moment from that point on is spent trying to tell myself that what I feel is not healthy and that I need to not focus on these things.  I can only try to take deep breaths, ignore the heaviness, and pray for it to go away. 

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Tuesday, April 17, 2018

Getting too comfortable

This past week I feel like I have been sucked into an uncertain realm of chaos.  The little control I thought I had over anything has vanished into thin air with such speed that I can feel its whiplash.  I have looked up at the sky about five times since last week convinced that my life is listed in the dramatic comedy section of G-d’s library.  My brain is overtired, I am physically and emotionally exhausted, fear of the unknown is debilitating, and I feel like my world is closing in on me.  Moments like these I wonder where things would be if we did not have the CDKL5 component.  How would I be different?  How would our life look? 

The way my brain functions these days I know has been significantly influenced by what I have been exposed to over the past 3 years.  I know I have reason to have the thoughts and fears I have, but that does not change the fact that I wish that were not the case.  I wonder if there was a study done on my brain in January of 2015, before the birth of Sonzee, and then now, how things might look different.  Surely the psychological effects of watching your child seize every day and face near death experiences must play a role with how your brain continues to function from that point forward. 

I know the events of last week sent me into this 100mph tailspin because they caught me completely off guard.  I bought a new hospital bag weeks ago after a parent in a local support group raved about a new backpack that comes with a charger and speakers among tons of storage pockets.  It was on sale at Walmart and I thought, “I have to have this even though we haven’t had a need for one, because the current bag I use has only two compartments”.  It came and sat in Sonzee’s room with the tags on every zipper. 

Last Monday Sonzee went to school, she had her typical day and had a seizure with her nurse.  All afternoon her nurse, Sam, and myself sat waiting in anticipation for her next seizure.  When it happened at 6:10pm, I said “oh, there we go Sonzee…we have been waiting for it”.  Never had one seizure resulted in the use of 911, or as much medication as we loaded her with, for it to stop.  We have used the same cocktail to help with a day when she has a ridiculous amount of seizures, but this was our first experience with a seizure not stopping on its own, and even after rescue meds.  I guess that is what I get for getting too comfortable.  I guess that is what I get for thinking, “why would I need to have the new bag packed?”


You would think that I would have learned in 3 years there is no such thing as “letting my guard down” or “getting comfortable”.  It is just not possible.  Things can easily change in a minute, seizures have quite a way of smacking me back into reality when I start to get content with what her "typical" is.  I now have her new hospital bag packed and ready to go in her bedroom.  I can bet the majority of the money we have that it will get used again.  It will be when I am least expecting and at the moment I have gathered enough strength to think “things are going so well, how could they possibly change?”

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Monday, April 16, 2018

Today is D Day...

April 16...we meet again.  3 years ago, today I was handed this piece of paper.  You were electronically signed 5 days ago, but I was blissfully unaware.  


Oh, how I pray that the chain of events leading up to that moment never had to happen.  I wish time could go back to the exact moment that the CDKL5 gene was forming in Sonya's body and do something differently.  If only we knew what or if there was something different that could have been done during that one split second.  I still often wonder why she was the chosen statistic and I am still unable to accept this is part of her life or our life, yet there is still nothing that we can do.


Today my heart is heavy, and it hurts.  I cannot officially say it hurts more than it did 3 years ago, but I can certainly say it is different.  3 years ago, my heart hurt because there was a reason Sonya was experiencing seizures and she never would "outgrow" them.  3 years ago, my heart hurt because we were told our 8-week-old baby girl might not develop in a typical fashion.  We were filled with fear and doubts over the trajectory she would travel.  3 years ago, my heart broke as I watched and heard Sam's break.  3 years ago, our hearts broke because we felt like we were at the bottom of the barrel.  


Today my heart hurts because 3 years have passed, and we watch our Sonzee bear seize multiple times a day.  We give her medications that help to an extent, but will never take away her pains, struggles, or seizures.  My heart hurts today because I have watched Sonzee try so hard to hold up her head, put weight on her legs, and try to sit, but her body still has its limitations.  My heart still hurts over the unknown trajectory of her path and the doubts and fears still present every day.  My heart hurts because I am more aware of what a missing CDKL5 actually means.

Over the past 3 years I have watched so many fellow CDKL5 children suffer and lose their lives and I know how real and likely this scenario is likely to become.  The past 3 years have taught me that while the selfish mom in me wants Sonzee here with me forever, the mom who has been present and watched her suffer for the past 3 years begs she won't have to continue to endure the absolutely horrific trials she has had to every moment of her life for so much longer.  

Over the past 3 years I have learned there is not much good that comes with a CDKL5 diagnosis, but good memories, great moments, and amazing friendships can still be made.  There will never be a moment that CDKL5 will ever be far from my mind.  The impact of this string of characters has been monumental.  There is so much I have learned over the past 3 years and so many changes that have been made.  While I wish with every fiber of my being the events that led up to this day 3 years ago never occurred and we were not the ones who had to learn all the intricacies of living a life with a child who is missing CDKL5 protein, that was not the case and we were...so here is to putting one foot in front of the other, waterproof mascara, a few runs to Starbucks and embracing Diagnosis Day. 


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Monday, April 9, 2018

"Hope"

There was a post over the weekend in our CDKL5 support group of a mom of a 10 month old who was recently diagnosed.  Change the date by 3 years and 7 days, and her daughter's age to 8 weeks and there we were.  She mentioned her daughter's current status, and she sounded pretty similar to Sonzee at that age.  I skimmed the replies and had zero intention of replying, after all, she was caught off guard by the diagnosis, in shock, and was looking for some hope.  I know what she is looking for, I know how she is feeling, I know what she wants to hear, and I know I am not the support she currently needs.  I am having a difficult time myself defining what hope even looks like at this point.

I remember 3 years ago it was merely a voice in the back of my mind that was saying she would not outgrow the seizures she was experiencing.  I remember 3 years ago how often Sam said exactly the opposite, he not only hoped, but really believed that when she was a little older the seizures would stop and she would be just like her siblings.  Her stint in the NICU and subsequent 8 day PCH hospitalization would become a distant nightmare and not part of a recurring adventure.  I wonder if deep down I clung to any minuscule amount of hope that I wouldn't allow myself to consider out of the devastating fear of the reality crushing me. 

It was 3 years and 6 days ago we received that phone call that redirected our focus on the path we had been journeying.  The phone call that told us we had an "answer".  I remember feeling at peace that we had an answer, eager to not want to wait the night to hear what it was, but "at least we knew what we would be dealing with".  Later on that day, Sam told me nothing we were going to be told was going to be good.  It was an odd switch of roles.  I asked him how he knew, and he told me he looked up the infant epilepsy panel and only two diagnoses were "good" and they were not what Sonya had.  I think it was one of the few times I remained more calm than him, and said, "well, we will know what it is tomorrow".

From the moment we read "CDKL5" on that genetics report, we clung to the hope that Sonya would not fall victim to all of its devastating effects.  Day after day, week after week, and year after year, I have watched her with my own eyes become its prey.  There have been some successes on this journey, and invaluable experiences, but my faith and trust in hope has been shaken to the core.  I hope she isn't suffering.  I hope that she knows she is loved.  I hope she feels we are making what we feel are the best decisions for her.  Gone are the days where I place the measurements of my hope on her accomplishment of typical milestones.  I would still love for her to sit just one time unsupported in her life, to take her first steps, to say one word, to purposefully communicate with her family, and to interact with her siblings, but if someone asked me to give them hope for their child diagnosed with CDKL5, I would say there is certainly hope, but, the reality might not follow in those footsteps.


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Thursday, April 5, 2018

Mommy-ing

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

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

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


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

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Tuesday, April 3, 2018

13 Days

In 13 days we will celebrate the 3-year anniversary of Sonzee's CDKL5 diagnosis.  A day that no matter how much time has passed on a calendar, the details of that day will remain forever etched in my mind.  A day that I can confidently say "changed my life", and one that I feel I should say "for the better", but honestly, I do not believe that.  I can twist this scenario into being something positive.  I can say how my perspective has changed in many areas, or how I am a different,  and or there are people I met because of all of this, and how great these experiences have been, but today I am honoring the part of me that stays tucked away, afraid of being judged.

I loathe April 16.  It ranks up there among the days I wish could be erased from the 2015 calendar.  A day I wish would never have happened.  It is a day that no matter what, will continue to play out for the rest of my life.  It will forever remain a staple.  It is a day that cannot be erased, ignored, or forgotten because it was just a starting point.  It was the day we were first introduced to the string of characters, CDKL5, to a world that was essentially out there and just waiting for us to find.  That day we learned there was a community, an actual family for us that we never realized existed.  There were families that had already been affected by CDKL5 living their daily lives right alongside ours, and we never knew.  There were children who had already lost their lives due to one of the many complications that can arise being diagnosed with CDKL5, and I had spent 31 years oblivious.


Lately, I have found myself trying to envision what life would have been sans anything CDKL5.  It is hard to tell what exactly would be different.  Would I have had 6 pregnancies?  Would we still have had 5 children born?  Would we travel more?  Where else would I be dedicating my time and energy?  Was CDKL5 bestowed upon Sonzee to prevent something else from occurring to one of our other children, Sam, or myself?  I know the answers to these questions will one day be answered and so many more questions will eventually be asked.  After all, during this time 3 years ago somewhere in a science lab, a test was occurring that would give an explanation as to why my newborn baby was seizing, it just was not the one we wanted.



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Tuesday, March 27, 2018

Purple

Yesterday was Purple Day, a day to help raise awareness for Epilepsy by wearing the color purple.  For me, to be honest, I just love any opportunity to make something cute or fun about CDKL5 and whatever situation we are faced with as a secondary consequence.  I picked out Sonzee's outfit on Sunday night, and even decided on wearing purple leggings in advance of 7:00am in the morning.  I went onto Facebook and chose the frame I wanted to display for my profile picture as my first attempt to spread awareness of a day that effects 3.4 million families in the nation.  In fact, according to the Epilepsy Foundation "there are more people who live with epilepsy than autism spectrum disorders, Parkinson’s disease, Multiple sclerosis, and cerebral palsy combined", and as of 2015, the CDC reports 0.6% of children 0-17 have active epilepsy*.

20-40% of those who suffer from epilepsy will have drug-resistant epilepsy, which is defined as a patient with epilepsy who does not become and stay seizure free with adequate trials of two anti-epileptic medications.  Sonzee fell into this category by the time she 2 months old, and sadly not much has changed.  Over 3 years she has been on at least 7 seizure medications, while each new drug gives a sense of hope, reality has said otherwise.  Unfortunately, for some reason each dose change, each new medication, each potential for some relief continues to give me a split second of hope and a subsequent broken spirit.  

It was fitting that for 36 hours (12 of them during epilepsy awareness day), Sonzee had not had any of her big seizures.  It was enough time to get excited, not enough time to truly enjoy the moments, but enough time that I am mad at myself for considering the medicine and VNS changes we just made would actually work.  It was enough time for me to be left wondering how I gave into the false sense of hope again.  My mind filled with the thoughts, "You know better",  "Why did you do that to yourself?", "This is not the first time this has happened, you knew how this would end", my heart is filled with brokenness, aching, and longing for a different outcome for her, and my eyes, they are filled to the brim with tears, again.


If you asked me when I was 4 what my favorite color was, I would have eagerly told you it was purple.  It has always been my "signature color", and if you know me personally, you know it was an accent color almost 10 years ago at my wedding.  Yet for the past 3 years it has become a color that I rely on to spread a message.  Maybe one day there will be a cure for epilepsy, but even then, I will not ever look at the color purple the same.

*https://www.cdc.gov/epilepsy/about/fast-facts.htm

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Thursday, March 22, 2018

Epilepsy Blog Relay: Time

This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!




Before you become a parent, you are continuously told "time goes by so fast", "cherish every moment", "Before you know it, your children will be out of the house", and so many other phrases that insinuate life is about to move a whole lot quicker.  You smile and nod at everyone who tells you these phrases, and you might even think you understand what this means, but then your child is born, and your comprehension of those words and phrases take on a whole new meaning.  From the second your child is born you are instantly placed into a lifelong game of tug and war with time, wishing time would speed up, yet simultaneously begging for it to slow down.  If you become one of the chosen parents who are gifted a child with epilepsy, all the above takes on a whole new meaning.

That moment you witness your child's first seizure, or the moments following the realization that what you just witnessed was your child's first seizure, the concept of time takes on an entirely new meaning.  Seconds have never felt so long, yet by the time the next seizure occurs you wonder how time flew by so quickly.  There is now a new version of tug of war, this time it is wishing time would fly by faster so a seizure could end, but then praying time would stand still so you never have to experience those moments ever again.  Yet just like with everything else, the clock does not slow down, it does not stop, it just continues to tic on by.

If your child has epilepsy secondary to a life limiting diagnosis, the tug of war with time game takes on another shift.  Your life revolves around time and an unspoken ticking clock that only you are aware of, that can make you cling to every aspect of the seconds going by, no matter how good or bad they are spent.  You prefer for them to be spent with your child experiencing more happy moments vs moments filled with seizures or other medical complexities, but yet you will take any and all moments you are gifted with him/her.  

Living life with a child who has epilepsy makes a person appreciative of time, never knowing what each second holds, you learn to accept whatever comes your way.  You soak up every second, hoping and praying it won't be the last, but with the fear of the unknown, and realistic potential of that occuring keeping you on guard and in the moment.  You do your best to always be in the moment, but try not to be paralyzed by it.  You anticipate the next seizure while trying to not live in a constant state of fear or panic.  One of the hardest parts of living life with a child who has epilepsy is learning the balance of holding onto time, while also trusting enough to let it pass by. 


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Tuesday, March 20, 2018

The other side

I cannot remember exactly where my mindset was in October of 2015 but being a rookie on this journey I can guess I was in a more optimistic position.  I had witnessed fewer seizures, experienced fewer moments of overall defeat for Sonzee, not fully addressed her diagnosis of her being Failure to Thrive and had not done her first medication wean.  I had thoughts about wishing things would be better for Sonya, whatever that meant in my mind at the time, but then wrote a post about being content with where things were personally, because you just never know what the alternatives really are, even when from the outside others situations appear more ideal.  

There is honestly NO ideal way to have a CDKL5 mutation.  No mutation is "better" than another, they are all essentially awful and unwanted, and each child presents with unique strengths and challenges.  There is not one parent of a child diagnosed with CDKL5 (that I know of), who prayed for their child to have a mutation in their CDKL5 gene and present with whatever skill sets and or medical complexities they do because of that mutation.  Some children with CDKL5 do walk, some do crawl, some can sit, some have a limited vocabulary but are able to communicate verbally, some have behavioral difficulties, some have respiratory issues, obviously the majority if not all, have the seizure component, but there are no two kiddos who are exactly alike.  Every child who has a CDKL5 diagnosis and their family experience heart aching, gut wrenching struggles, yet I am sitting here wishing Sonzee did not have the specific challenges she has.


Why do her struggles have to be what they are?  Why couldn't she be one of the more mobile children with fewer GI and motility issues?  Why couldn't she be one of the miracle stories where CBD worked?  Why couldn't she be one of those kiddos that thrived when her seizures have been momentarily controlled?  What would it be like in our house if she showed negative behaviors such as wreaking havoc on the playroom and eating non-food items?  Why can't she tolerate the amount of food she NEEDS to survive?  I know handpicking the way CDKL5 could affect her would not be a better idea, and knowing my luck, I would probably not do her any better justice, but I wish I could have an alternative version of her story playing out next to me for me to see what it would be like if she did not have the specific set of challenges she was given.  Yet 2 years and 5 months after my optimistic approach at turning lemons into lemonade, knowing that "the grass is always greener on the other side" is not always the case, I can't help but wish so deeply that she had "the other side".   

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Thursday, March 15, 2018

Quality of Life

The moment I became pregnant with my first child I began fantasizing about the future.  Unsure of her gender during the pregnancy I had wanted a boy because I had an older brother and while we had our moments growing up, we were always close, and I considered him my protector and defender, so I wanted my first to be a boy.  At the same time, I thought how fun it would be to have a little girl.  I knew no matter what gender she turned out to be, Sam and I would become smitten.  When she was born we both could not have been happier with the outcome, our journey into parenthood began, my dream of becoming a mother came to be, and life was absolutely amazing.  Our little girl was happy and so we were happy, it was that simple.  Then 5 years and 23 days later we were introduced to Sonya, and everything we knew about parenting, about simple, and typical, was essentially thrown out the window.  Our life became rare with a huge emphasis on quality of life.

The phrase quality of life has become our household staple, it is how we respond to every situation and it is what weighs heavily on my heart 100% of the time, but what does it mean?  I realized after a conversation with one of my closest friends recently that when you do not have a child with a life limiting diagnosis, grasping the concept of what quality of life really stands for is about as clear as mud.  It also means something different to everyone, even parents of children with the same or similar diagnosis.  This is one of those tough to understand, tough to explain phrases.  There are many many interpretations of this phrase, but there is absolutely no right or wrong, no better or worse, it is purely subjective.  This topic can cause judgement and controversy but is 100% individual and that (to me) is all right.


We have found ourselves at what I consider a pivotal moment on our quality of life journey for Sonzee.  The point where keeping her needs for sustaining her life and ensuring her quality of life meets head to head.  The crossroads of where the selfishness of parenting a gift from g-d  and respecting the selfless act of what mothering really is, parallel.  This is an extremely difficult place to be.  While I know deep down there truly is no right or wrong, my brain is having a challenging time trusting in that, because there must be.  As we were told yesterday, even if something negative occurs as an outcome to the decision we make, it does not mean we made the wrong decision.  While I want to believe this to be true, it is difficult for my heart and brain to be on the same page, but as George Michael said, "you'll never find peace of mind until you listen to your heart." 



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Sunday, March 11, 2018

Go with your gut

When I signed onto Facebook this morning there was a notification telling me that I had 8 memories over the years "on this day".  Naturally I decided to go and see what they were, and I saw Sonzee's one-month picture from 3 years ago.  My caption read "1 month already?!?!".  Looking at this picture I recall vividly how many pictures I took to find the "right" one to post.  It was different than with my other children.  It wasn't because the pictures were not the perfect picture because I was trying to get her to lay a certain way or I wanted more of the background to be a specific way.  It was not because I was trying to find her cutest pose and post that one.  It was because something in my gut was nagging at me.

"Something was not right", I said those words so many times during her first month of life and they fell on deaf ears.  I felt it was so obvious in this picture, and while I wanted someone to agree with me, I was afraid of someone agreeing with me.  Her eyes were facing directly at the camera, but they were not looking at me.  Someone made the comment, "so alert" (for the record, I HATE THAT PHRASE).  I wonder if they could not figure out what was off in that picture, so they chose that overused phrase.  

It was a few days after this picture that I finally ignored others best attempts to tell me "baby's do weird things" or that I was just being crazy, and I decided to go with my gut.  It was within 24 hours that my gut feeling was confirmed.  All those twitches, shakes, and random eye movements were actually seizures, I was not crazy after all.  While there was some validation in knowing I trusted my gut and it was correct, there was not an overwhelming sense of victory when it just confirmed my worst fears.  


The past 3 years have been filled with so many doubts and questions where I continue to question my gut, but time and time again my gut wins.  So many times I challenge my own gut to play devil’s advocate and a lot of the time it is simply done because I want so badly for my gut to be wrong.  I still hold out hope that just once it will be and I tend to cling to that more often than not.  But if I could give anyone starting out on their parenting journey, special needs or not a piece of advice, no matter what others tell you.... go with your gut.

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Monday, March 5, 2018

Treading

For the past three years we have been faced with making decisions on behalf of Sonzee that have  altered her quality of life, and every once and awhile, literally her life.  It is the latter that throws me into a constant state of anxiety and panic, that to me, has to be similar to the feeling of drowning.  There are bobs back up to the surface for me to take a gulp of fresh air, but then I find myself falling back deeper in the water only to look up at the rippled surface.  As I look up I wonder how it is we are back in this position?  Didn't we do everything we were supposed to in our best attempt to avoid this situation?  How do I get back to the surface?

I am trying to filter out the clutter and confusion in my mind by conducting research and weighing pros and cons.  I feel like no matter the decision, it will only buy us a little more time before the next situation presents itself.  Nothing seems clear.  I hate to say that making these decisions does not seem fair, because it isn't about what is fair, it is about what is best for Sonzee.  I find the most challenging part of my job as her mother is removing the distractions of what I want and honing in on what she would want.  That in and of itself is suffocating.  What if I am completely off the mark?  What if I misread my gut?  Simply put, what if I am wrong? 

You would think that essentially repeating this process over and over again would make us professionals at it.  This is where the complexity of medically complex parenting comes into play in a different manner.  So many aspects to consider, so many ways to falter, so many ways this could knock down every domino we have tried to stack in her favor.  I guess this is when I have to really dig deep and give way to faith, faith in what is meant to be.  So as I sit here holding my breath deep under the water, I will do my best to swim to surface to take another breath and keep treading water.





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Thursday, March 1, 2018

...Seizures...

It was at some point in April 2015 where I became so used to watching seizures occur that they lost their "wow factor".  Sonzee was only 2 months old.  I have seen so many varieties of seizures, so many different presentations that it takes a lot to make me lose my composure.  The first time of a new seizure type it usually takes me a quick second to adjust, but then like becoming comfortable with any new area of parenting, they too just become the normal.  We have been used to 10-15-minute seizures since August, some have needed oxygen, thankfully the majority do not.  This past weekend however, was the very first time Sonzee had a seizure longer than 15 minutes.  We gave her rescue medication and expected her to stop seizing, but it was not until 7 minutes later that she finally came out of it.  I admit the thought of dialing 911 crossed my mind, but I knew she was fine and I knew she would stop, and she did.

Yesterday was the first day this week I had not received a phone call from school telling me Sonzee had a seizure.  I was honestly a little surprised considering she had 2 within 2 hours of each other before school, but when I walked into her classroom I saw her nurse and teacher standing next to her and I said, "I was thinking it was odd you had not called me yet".  She was already a few minutes into her seizure when I gave her kisses, rubbed her arm, and started to talk to her teacher.  Her nurse was doing the timing and we were just waiting for her to stop.  Minutes continued passing by, her nurse letting me know every so often where we were on the time.  A mom friend walked by the classroom, we spoke for a little, and Sonzee continued to seize.  I met her school occupational therapist and she and a couple of others gathered around to learn about Sonzee's seizures.  The clock ticked on, 13...14.... 15....I started to take out her rescue medication and at 16 minutes I told her she had 10 more seconds before I had to give it to her.  10...9...8...7...6...5...4...3...2...1....rescue med given.

Then we waited.


We all continued to talk about her seizures and then finally 7 minutes later it stopped.  We were finally ready to head home and Sonzee agreed because she went from seizing to being rescued to playing with her hands.  I mentioned to her nurse, "Only Sonzee could go from having a 22-minute seizure that required rescuing, to playing with her hands as if nothing happened".  I do not like that her seizures are like the "boy who cried wolf" and it makes me a little sad that they do not all impact me, and that I can sit around for 20 minutes while she seizes carrying on as if she was watching Octonauts on T.V.  I know I do not have the psychological capabilities of entertaining each one like it won't be happening 3-5 more times each day, because they will, they do, and this is just part of her life, but it just hurts that this is where things are at.  


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