Wednesday, September 30, 2015


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.

Friday, September 25, 2015


 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? 

Sunday, September 20, 2015


"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.

Sunday, September 13, 2015

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.

Wednesday, September 9, 2015

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.  

Wednesday, September 2, 2015

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 always keeps turning.