Reality

Everyone has been faced with a situation in his/her life that would be classified as horrific.  A loss of a loved one, a terminal or severe illness of oneself, a close friend, or family member, a negative birthing experience, a devastating accident, and/or a loss of a job to name a few.

While experiencing a hardship I often wonder if it's better to live in reality or fantasy.  I personally feel that reality keeps us grounded, keeps us honest, keeps us from getting ahead of ourselves.  While the fantasy can give us hope, our minds a break, and a sense of comfort.  Maybe both are necessary to keep us whole.

I like to be realistic in my dreams for Sonya.  I would much prefer to have attainable goals than unrealistic expectations.  I would like her to use her hands functionally, smile socially, communicate with words, hands, or a device.  I would like her to crawl, pull herself up, cruise furniture, and eventually walk.  I would like her to be as "typical" as possible.  I think that is where my reality dips into the land of fantasy.  Where the two converge in some middle territory without a specific label.

On one side of my brain I have the reality that she is a 7.5 month old baby girl who looks perfect to strangers, yet her perfectly looking body doesn't work the way she wants it to.  Inside that beautifully shaped head of hers at any second is a 4th of July fireworks show ready to light up the sky.  While she uses her thumb for soothing, her fists remain clenched and she doesn't reach or hold onto objects.  She smiles on occasion but rarely on her own accord in response to social stimuli.  The reality is, she is far from "typical".  

So in my mind I can picture her dancing and holding a fork.  I can see her running around with her sisters and brother, part of their little club.  I can see her jumping around and acting goofy.  Yet, it can often feel draining living in a fantasy world.  Yes the grass is greener and the sky is brighter.  There is less worry and fear. In the fantasy, I know anything is possible.  I also know a fantasy can become a reality, maybe rare and a fantasy in itself, but still possible.  

I think at some point it is healthier to just deal with the reality.  The fantasy doesn't change the current situation or the facts. As difficult as the reality is, it is what it is.  Not for good, not bad, not for any specific reason...just because.

I can say that the best part about a reality and a fantasy is when the two blur together in a collision, making a clear distinction between the two a challenge, and therefore giving a sense of comfort without you knowing whether it's real or simply a fantasy in your head.

Belonging

 I have always associated myself in the "in between group" when it came to a group to identify myself with.  I never felt part of the "popular" group or the "unpopular" group; just in between.  I was a part of different teams and organizations; I had plenty of friends, but I was never sure where exactly I fit best.  As I grew up and went to college I ended up joining a sorority and again forged great bonds, but I still feel like I wasn't exactly sure which group within the sorority was "mine".   As a mom I have never classified myself as a "crunchy" mom however, I can identify with some of those philosophies, just as I can as a "non crunchy" mom.  When Sonya spent time in the NICU I also felt similarly out of place because she was only in there a week and I know others who have children spend months of their lives.  It felt wrong to even consider "comparing" the situations.

I now find myself in a new type of placement limbo.  I am part of this "special club", the "special needs mom" category.   Even within this group I don't know my specific space.  Sonya is not medically fragile at this time (thankfully) and when I talk to a mom who has a child who is, I feel out of place.  When I read about other children who have CDKL5 mutations and are having more seizures than her or who are more behind in their development, I feel awkward.  As if I should not feel the way I do about where she is developmentally, or that I sound ungrateful when she has fewer seizures.  I never want to make other moms feel uncomfortable or awkward with posting what Sonya is capable of, if they have a child who does not have the same skills.  Yet I feel excited when she has accomplished something "simple", so naturally I want to share it.  It is a confusing, difficult, and weird place to be.

On the flip side, I have Sonya in a typically developing swim and music class and I don't exactly fit in with those parents either.  There are children who are right around Sonya's age, some even a day younger than her, yet we don't have the "our kids are in the same place developmentally" bond.  I have no negative feelings or resentment towards moms who have same aged kiddos who are typically developing.  It is just unless I know these moms on a friend-level, I don't have much to contribute to the "Ben is pulling to stand; Sarah is crawling all over the place" conversations.   

Odds are unless you have had a child in the "special needs" category it is difficult to really understand my position.  Even if you have had the experience it isn't exactly the same, so we may not be able to relate either.  Maybe I am overthinking things?!  Maybe it is too early to have a specific niche within such a wide varying spectrum.  Maybe I just need to give it a little more time?! 

But I can't help but ask myself daily...where exactly do I belong? 

Protection

"She doesn't know any different".  I've been told these words more than once when it comes to Sonya.  I myself have often wondered if she ever will.  Will she be present enough to know she is not like her siblings, her cousins, other children in her activities? Will she feel like she doesn't exactly fit in? 

What will happen that one time in the not so distant future where an innocent child will point at her and say something about her to his/her parent?! To me?!  I couldn't prepare for that if I tried...I know better than that.  My heart already breaks in anticipation.  

I'm not exactly sure what hurts me more. The thought of what will be said, or the fact that Sonya might not understand something was even said about her.  In the same light, I'd feel a sense of relief if she isn't aware.  I'd much rather her not experience the pain of feeling different on top of everything else she is dealing with.

This is where I find some purpose.  I can't take away her seizures.  I can't make her body stronger than she is capable.  I can't make her smile or look at me.  But I can be her bubble wrap.  I can do my best to shield her from unpleasant words and nasty stares. 

I won't lie to myself and say it won't knock me down, that I won't run to the bathroom or my car in tears.  I'll do my best to make Sonzee proud with my words.  It will be my job to let others know that different isn't bad, that having a challenge whether internally or externally does not make someone worse off.  Because even though Sonya may not know she is different, I do, and it's my honor to give her a lifetime of momma bear protection.

Charlottes Web

There is no specific time during the year that you can decide it's time for a change.  I see everyday that friends on Facebook are challenging themselves to live healthier, to become better in various ways.  For those of us who believe in the Jewish faith, and for some other religious groups, tonight marks the beginning of the celebration of a new year.  We are entering into the Hebrew year 5776 and similar to the traditional January 1st New Year, we have decided it is an auspicious time for us to try something new for Sonzee.

It is a hot topic these days, the discussion on medical marijuana and canabidol oils. There are so many unknowns; similar to our current more "traditional" approach to treating Sonya's seizures.  We have been told by some doctors that the outcomes of MM and/or CBD oil are "unknown" and we should stick to the "tried and true".  Clearly these doctors don't have a child with a life altering diagnosis, because if they did I can only imagine they too would give anything a try at least once.

We know the long list of side effects that come with her current medications; they are attached to the drugs in a folded over 8 x 10 paper pamphlet stapled to the bag, and in size 12-14 font is a list in bold writing "common" and "rare", always followed with "contact your provider if...".  I can thank the pharmaceutical companies who have conducted their trials on these medications, because hey afforded me a list of these "potential side effects".  From our experience, I cannot offer my compete gratitude as they have not yet proven themselves to be "tried and true".  Sonya still experiences daily seizures, and odds are she always will, no matter the cocktail she tries.  

Charlottes Web Hemp Oil contains less then 0.3% THC.  It's long term side effects while unknown due to its relatively new existence and lack of long term scientific data, realistically could not be worse then the pages that are attached to her pharmaceutical medications.  Some children have tried medical marijuana and or hemp oils and have been unsuccessful with achieving a decrease in seizure activity.  In some of those children, despite the lack of seizure control, they exhibit a better quality of life.  That's a win in my book.  Other CDKL5 sisters of hers swear by their chosen brands, and their families are extremely vocal in the positive changes they have experienced.  Thanking the oils for "bringing them their daughter".

It is with blessings from her neurologist and gratitude to Hashem and the Stanley brothers for providing a more viable natural medicinal option, that we say thank you and may this year be better than the last.

Who is she?

Every experience we have throughout our life helps to mold us into the person that we are.  Each personal encounter, each school we attend, the way people treat us, the way we are loved, all of these contribute to our wholeness.  As an infant or toddler we are more mailable.  What happens during these early times impact us in such drastic ways whether negative or positive.  The younger we are, the easier it is for us to bounce back from a more tragic or difficult situation, but on the other hand, the more impressionable we are to or exposures.  It is during our earliest years of  life that we are most vulnerable.  

A constant shadow hangs over my head when it comes to Sonya's medical treatments.  I am constantly left thinking who will she be if we did or did not do x, y, and/or z.  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?!

Gosh I HATE this.

I really don't have any negative feelings towards G-d, I don't hold anyone responsible, because I don't feel there is anything or anyone to blame, but I am just so utterly upset at this situation.  I simply detest the fact that we are even in a situation that we have to balance side effects of drugs vs seizures that could cause brain damage.  It is so difficult to differentiate when she is grouchy because of an impending seizure, because of her medication, or simply because she is an almost 7 month old baby.    I cannot express how upsetting it is when I think about the fact that I don't really know my own daughter.

I often wonder who she would be without these drugs, but then the idea of her seizing 1 minute longer or 1 more additional time during the day due to my selfish desire smacks me back into reality.  

Full circle

This past weekend our entire family took a nap on Saturday.  I am not talking just a quick 30 minute nap.  I mean everyone in our house slept between 3-4 hours, and it was much needed and much appreciated by Sam and myself.  Due to this nap, Sam and I decided we should do a dinner and movie night with the kids.  The movie choice was The Lion King, I think it might have been a little bit braisen for it being our first nighttime movie experience, but overall a success.

A general theme of The Lion King is "the circle of life".   It really is such a great concept, and it applies to so many situations throughout life.  If you really think about it, a lot of things we experience in life follow a circular trajectory.  It's the circular motion of tires that assist in the proper movement of a car.   It is the process of being born and cared for 100%, to becoming independent, and then ironically ending up in a similar fashion to being a newborn before we die.  It is the symbolic presentation of a solid round wedding band that represents a marriage.  It can be found in the general process of life's peaks and valleys.

With the birth of a child you start on a circular journey.  Your happiest moments begin at his/her birth and then a multitude of emotions can set in.  Challenges ensue in parenting in general, regardless of whether or not you are on a "special needs" course.  In order to feel the lows, you have to know what it is like to feel the supreme highs.  It is all necessary to complete the circle.

We have decided to put Sonya in the swim class that follows with her age, so she is now in a class with typically developing 6-17 month old kiddos.  I won't lie and say that during our class I am not choking back the tears; because to be honest, the difficulty of seeing a typically developing child right in front of my face can be a bit hard to cope with.  It is during this time that I am smacked with the reality of what Sonya is not doing.  It is during this time that it's hard to not think about what Sonya would be doing had she not been born with a mutated CDKL5 gene.

At the same time in this class we are blessed to have a coach who is also part of the "special needs" world; our new world.  She happens to have a daughter who is not "typically developing".  Luck would have it, for me, that she has been in my shoes.  I was able to ask her last week how long it took for her to be able to be "okay" with seeing other same aged peers as her daughter doing more typical things and not get choked up.  I had a feeling her answer would be similar to what it was...that even after many years, she isn't always "okay".  She still has her moments.  She focuses on the amazing milestones her daughter has achieved and it makes achieving new milestones all the sweeter to enjoy.  It makes watching her other children's achievements that much more amazing.  

In my limited exposure to this new "new", I can relate to her words.  It is a constant state of up and down.  In order to experience the thrill of Sonya mastering a new task, I have to acknowledge the sadness of the skills that are more of a challenge.  In order to appreciate what she can do, I have to accept there are things she can't.  It is all part of the circle.

The thing about a circle is that because it's round it is in a constant state of motion.  It is always moving and therefore it keeps going.  I am trying every day to understand that in order to be thrilled with the good, part of this same journey is allowing myself to be okay with the less desirable outcomes.  Everything in the end comes full circle.  The best part of a circle...it always keeps turning.

In 5 years

Last week our oldest daughter went to her first day of Kindergarten.  She was so excited she was literally waking up for at least 4 days prior asking me if today was the day she was going to go to school.  I was so excited for her as well.  In my mind Kindergarten was no different then her going to preschool; except this would be her first time attending school all day and she would be wearing a uniform.  I knew she was ready and so I happily counted down the days with her. 

Finally the anticipation was over and the day came.  She got up before her alarm clock, she got dressed in record time, she did all of her morning routine with excitement and it was time to drop her off at school.  We walked her into her classroom, and I am not sure what exactly is in the air in a kindergarten classroom, but all of a sudden my vision became blurry.  Maybe it was one of the students who was crying for his mom that got to me?  Or was it simply that my baby girl placed her backpack and lunchbox into her cubby, found her desk with her name on it, sat down and began to color with the biggest grin, all while holding her head up proudly?!  (Oh to be five again.  If I could freeze time at any age, five has always been the age I would go to).

My heart was so excited for her, but at the same time I felt so many other emotions.  We quickly left and I was so proud of myself for holding back the potential waterfall.  We dropped our son off in his preschool classroom, and those darn tears were back,  but again I pushed them away.  As we left, Sam asked me if I was ok...and I nodded "yes".  I was more than ok.  I was so excited for both of my kids for their new experiences they were going to encounter.  It was just a bit sad that I wouldn't be there to experience them.

Later during the day I looked at all the pictures I took of them in front of our chalkboard holding their grades on a sign.  That is when the thought snuck in...will Sonya go to school?  If she does, will it be to the same school that the other three will go to?  Why does it matter if she goes to a different school?  I am aware any of our children could end up in different schools, so why be worried about it?!  What will she look like when she has her sign?  I can already picture our middle daughter holding her school sign next year.  Her dark hair, brown eyes, and little face shining brightly.  Her smile is one you can see for miles.  She will hold her sign proudly and be so excited that she finally gets to stay at the same place she has been to drop off and pick up her brother and sister. 

When I look 5 years down the road, I don't have a clear picture of how Sonzee will look.  So many unknowns, so many paths we will have to cross before then. Hopefully we will have many many milestones to celebrate with her along the way.  Regardless if she is sitting, standing, or physically supported you can bet it will be in front of a chalkboard wall, next to her proud siblings with a sign that says Kindergarten.

Controversy

As a parent we don't want our children to be in any pain, suffer or face any problem.  No matter the situation, it is our natural inclination to jump right in and try to find a resolution.  In nine out of ten times the solution is easy.  A bandaid for a cut, a tissue for tears, antibiotics for a cold, a hug and a kiss, or a gentle pat and the words "you're ok".  Then there are those times that aren't that simple.  When you have a toddler that you can't understand and you have to perform what feels like a triathlon combined with a doctoral program just to figure out the best way to console him/her.   You have tried the bandaids, the hug, the kiss, but nothing seems to be working so you offer a sippy cup and randomly they have no idea why you look so frazzled because all is right in their little world.  

With every decision we make we are doing it with our specific child in mind.  How can we make his or her life better, more productive, just plain easier?!  Sometimes our choices are exactly what 99% of other moms and dads would do.  Sometimes our decisions come with outsider opinions or bias.  Sometimes we just don't simply care what others have to say because we know what is best for our child.  

A lot of factors can influence our decisions.  We may feel judged, think we are judged, or be fearful of the judgement that may come along with our choices.  We may let that fear determine our course of action.  We may be nervous of the outcome, we may be scared, we may  simply be unsure of ourselves, and full of doubt.  So what then do we do?

Growing up my mother would always say, "you make the best decision based on the facts you have at the time" (I may have mentioned this in a previous post).  I like to refer to this quote on a daily basis when it comes to our decisions for Sonzee's medical care.  However, lately I have found myself at a crossroads.  

We all know the controversy behind medical marijuana and its impact on seizure control.  If you know Sam you know if we never had a Sonzee with a mutated CDKL5 gene we would never be entertaining the use of marijuana.  If you have talked to Sam recently he will be the one to tell you he went to Harvest of Tempe and we have Charlottes Web oil (from the documentary) sitting in our fridge.  He will be the one to tell you it is actually me who has not given the green light.  Why you may ask?

1. It would mean adding a third drug to her daily routine

2. It would mean we would have 8 medication alarms throughout a 24 hour time period

3. It would mean she might have seizure control, but it's not a guarantee.

4. It would mean we have now used our last gun in the arsenal (without using other pharmaceutical medications).

While our neurologist is extremely excited, I am petrified.  What will people think of us as parents? Why do I care? What if we use it and it doesn't work? What if it does? To quote one of the most famous antagonists of Disney, "life's full of tough choices, isn't it?!"

Dust Storm

I found myself and the kids caught driving through a dust storm on Tuesday.  I didn't receive the weather alert on my phone until after the rain was pouring, the wind gusts took down tree limbs, and we had arrived at our destination in Scottsdale.  The alert went off on at least 6 or 7 other phones simultaneously, and I gave a quick chuckle while thinking..."thanks?!"  The alert is kind of comical in its own way, as I was definitely well aware of the weather this morning as I loaded the kids into the car. The sky was a dark greyish brown when I looked toward the east.  I could literally see the wind picking up and dust flying parallel to me.  I took a moment to really appreciate all the actions of the storm; how fast the dust was flying, how gusty the wind was how the sky opened up and cried.  In a part of my mind I wondered if G-d was simply having a bad morning.  Did he just need to let it out?

We all have days where we push our feelings to the side.  It can be easier to do that then to simply deal with it all.  Maybe it's that we worry that we will be perceived as weak.  Maybe it's that we don't want to make ourselves a burden to others.  Maybe we aren't sure people really want to know what we are actually thinking and/or feeling.  There are those days that we just keep up with appearances.  We follow schedules, and daily routines.  We smile, and move through the motions.  All along a storm is brewing within us.  We never know how much will be too much, what is going to tip the scales.  We just go with the flow unsure of when all of our pent up feelings and emotions will need to be freed.  

Then it happens.  We get in a fight with a loved one.  Our child forgets his/her sippy cup in the car.  You are running late for work.  You are angry over situations you have no control over.  Your thoughts run wild and rampant.  You can't make sense of anything, and you just need to have a release.  Everything has built itself up so much that there is just not one thing more you can take.   You feel like a train letting off steam.  You may cry.  You may scream.  You may do both.  It isn't always rational, but it's necessary.  

Maybe right before it begins we get an advanced warning; but usually it happens so quickly that it isn't until we review the series of events that led up to the storm that we realize hindsight is 20/20.  We just have to hold on until it passes and go with it.  We have to acknowledge the feelings and allow them to be felt.  We have to appreciate the chaos and disorganization that may occur and embrace the beauty that will follow.  Because after every storm, the clouds eventually part, a ray of sunshine appears, the ground will dry, sometimes a rainbow will present itself and we know everything will be all right.

What's in a Name?

We have been told that having a diagnosis for Sonya this early is so amazing.  Being that I have not had to sit awake at night wondering if her Seizures will disappear by their own volition, I would have to agree.  No, I have not had to stress and anguish over why her development is not on target.  I have been afforded the opportunity of diving head first into therapies to keep her as much on track as possible.  However, the problem with having a diagnosis so early is you find yourself, and others making statements such as, "She is doing great for having CDKL5", or "Most kids with CDKL5 don't talk, eat, or feed themselves", or "These are the things you can expect with a kid who has a CDKL5 diagnosis".  I am sure this holds true for any parents who have a child with a specific diagnosis.  The problem with having a specific diagnosis so early is that you have to literally FIGHT to NOT let the diagnosis define your child.  Shakespeare had it right when he penned Juliet's words. "What's in a name? That which we call a rose by any other name would smell as sweet." 

There seems to be a classification system for all children, typical and those who fit into a specific diagnostic category. I feel like it's rare in any instance that we actually see a child for who he or she truly is.  We as a society tend to lump children into categories based on physical appearance or their shared characteristics.  The geneticist we saw even made the statement that a syndrome is "found" when many children are presenting with the same symptoms/characteristics.

It is great to use a diagnosis as a target for addressing skills or starting point for parents to gain comradery, but it is unfortunate when we use a diagnosis to define our children.  Sometimes knowing the "typical outcome" of other children who share the same diagnosis can be catastrophic.  If a parent learns of this diagnosis and they already feel defeated, this can add a level of complacency, of not bothering to work on anything because "what's the point?"  It can lead to the absolute opposite of what we want to achieve as parents.

Each child/person with a disability has a soul and a purpose just like those of us without a physical, mental, or emotional disability.  Everyone is required to complete the puzzle.  We must focus on the child as a contributing member of society, and not let the disability dictate our actions towards him/her.  It is our job as caregivers, family members, and friends to help the person reach their highest potential and fulfil his/her mission regardless of the obstacles presented by the disability.  

It should not matter whether our children have a genetic disorder! It should not matter if they have Cerebral Palsy, Down Syndrome, Hypertonia, Epilepsy, or Spina Bifida!  It should not matter if they have a physical, mental, or emotional difference.  We should always remember to put our children first, and if at all, their diagnosis second.