Friday, November 27, 2015

Being Thankful

Life is constantly a balance between yin and yang; day and night, light and heavy, up and down for example.  Neither can really exist without the presence of the other.  As I scrolled through my Facebook feed over the past 24-48 hours reading status after status about what my friends are thankful for, I was thinking about what mine should say.  In all honesty while I am thankful for so many things, my thoughts are clouded by my desires for things I cannot control, and you guessed it, related to all things Sonya and CDKL5.

I wish I could say that "I am thankful I have four 100% healthy children, that I love how Sonzee and her older sister have the same bond that our oldest two children have (I was so looking forward to our 2nd daughter having her sidekick), that Sonzee is learning to crawl and can sit like a champ, that I am planning her first birthday party with excitement and can hardly wait to see if she reacts like her siblings when she sees her cake, and that our traveling was actually a challenge because entertaining a 9.5-month-old is so difficult."  These are simply a snapshot of what I WISH I could have written; part of the long list of things I want.  If I focus on those items it is easy to forget all of the things I do have.

It goes without saying that I am thankful for great friends and my family.  I am so extremely thankful for Sonya's medical team and all the medical interventions that have been provided to her.  I am thankful for our online CDKL5 support group where I have become instant friends with so many on a level that others will never fully comprehend.  I am thankful for the support shown to our family as we continue on this lifelong journey.  I am thankful for ALL of my children, and especially the bond our 3 older ones share.  I am thankful for how each of our older children the Sonzee bear with such love and care, and while they know she is different and wish she was not, they still interact with her as if she was typical.  I am thankful for Sam, all he puts up with, and all he provides for our family.  My list could definitely continue, but I will spare you all.

What I have realized over this Thanksgiving holiday is that in order for something to be complete, it needs to be composed of both a negative and a positive so a balance can be achieved and maintained. Our journey may not always be what we intended for ourselves, but it is what was provided to us so that we in turn can become balanced, whole, and complete.  This year especially I am thankful for my list of desires because it makes me beyond thankful for the things I actually have.
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Tuesday, November 24, 2015

The hard stuff

its gonna get harder before it gets easier

I knew from the very beginning that this "journey" was going to more of an emotional, physical, scary, and crazy, you name it roller coaster ride, yet I still do not feel that I was adequately prepared.  I can safely say 8 months in and no amount or specific type of pep talk could prepare me for everything I am experiencing emotionally.  It is a bit difficult for me to accurately articulate all the thoughts that are going on inside my mind.  To give you a visual image, it would be equivalent to a ping-pong match.  

The last couple of weeks I have found myself fearful of what I do not know lies ahead.  Seizures aside because sadly those do not scare me, or maybe it is more that I am just numb to them already.  I am fearful of what lies ahead for Sonzee in the developmental department.  There are no videos, no pictures, no other Sonzee's before us that tell me "this is the exact road that Sonya will be following".  Everyone is quick to tell me that I should not worry, that I should relax, that I should take it one day at a time, but be honest, if Sonzee was your child, would you listen and follow that advice?  I get it, the worrying does not do anything for me, but right now it is really the only thing I can do.  

When I take Sonzee out in public, the main comments I am told are "she is so pretty" and "look at the little baby".  It is still difficult for a stranger to notice she is different with just a 2-3 second glance.  In an ironic twist, I am thankful she is on the smaller side for her age.  It only would cause someone to think twice if they ask me how old she is and they happen to know a thing or two about typical baby development.  I get the most nervous when I tell someone her age because it is obvious at that point she is behind the curve.  In the same breath I want to go into automatic momma bear defense mode and tell them her story, but that would be more than they bargained for.

I realize as the days continue to pass we are getting closer and closer to her first birthday.  While on one hand I am happy to celebrate how far she will have come, I am honestly dreading it.  There will not be a smiling little girl excited to play with her toys or the bags and boxes they are packaged in.  She most likely will not be crawling through a smash cake making a trail of chocolate as she moves.  She will be dependent on me and others to pick her up, move her around, feed her, and perform every other life skill that has been done for her since she was born.  It is definitely not how I envisioned I would celebrate a child's first birthday.


As time continues to speed by, my baby girl is growing up, but I am fearful she will always be my baby.


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Monday, November 23, 2015

Hindsight

Over the weekend, close family friends of ours called to let us know that they were sure their daughter was going to be born sometime during the middle of the night and Plan A for who would be watching their son was not answering the phone.  We invited them to come labor at our house and if they needed to leave their son, it would be our pleasure to watch him.  Their prediction was correct and shortly after they arrived, they left our house, and I received a text that the baby was born.

Immediately I was transported back to 9 months and 11 days ago.  My friend’s labor mimicked Sonzee's so much it has given me chills.  How quickly it started, how quickly it ended.  I made a joke it had to do with our awesomely renovated master bathroom, with the luxurious soaker tub Sam insisted we put in.  Plenty of times I find myself reliving Sonzee's birth and the 20 minutes following, when I knew something just was not right with her breathing.  I play the conversation I had with my doula over and over again.  I remember after asking her opinion of the situation, she agreed with me, making me even more nervous because this woman is usually very apprehensive with interventions unless they are 100% required.  I remember she told me a story of a birth she had been at where the mom asked about the baby's eye movements and everyone shrugged them off to "weird baby movements", only to learn five days later that he was suffering from seizures.

That story stuck with me the entire time I was with Sonzee in the NICU.  I have a fairly good inkling looking back that the little leg twitches and body jolts I witnessed and asked the nurses and doctors multiple times about were actually seizures.  It makes sense they were not as evident as she was on three different types of antibiotics and after months with the Sonze, we know she does her best when she is on them.  The doctors/nurses reassured me numerous times that "babies do weird things" and that after her course of antibiotics Sonya would be a perfectly healthy baby girl.  When I look back on my week in the hospital with her, it brings numerous feelings to the surface.  I honestly do not think I have properly dealt with all of my emotions from that experience just yet.

What resonates with me now is the fact that we did not get her treated for seizures until she was over 4 weeks, but I am certain she had been having seizures from birth.  If I think back to the comments I made to Sam about her movements while I was pregnant with her, she was probably having seizures in utero as well.  When she was 3 weeks old I asked my dad, "what if she is having seizures and we aren't aware of them", his reply made me a bit more on edge since he did not brush off my concern, but instead said, "The thing about babies and seizures is you just have to wait and see".  It makes me sick to my stomach to think about it.  I wonder how different would she be if we had given her anti-seizure medications sooner.  Would it have made any difference?  I like to think not, but is that the case?


I know there is nothing I can do about it, and there is no reason to dwell on the past.  I know I did the best that I could and it isn't as if I had experienced it before so how could I have known differently?  I cannot change the past and I cannot beat myself up over how things unfolded, but the fact that hindsight is 20/20 is just another thing added to my short list of things that are truly filed under "things I hate".

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Friday, November 20, 2015

We are ranked #...

Thank you everyone who goes to Rate My Blog or clicks on one of the Top Mommy Blogs banners on a daily and or weekly basis!  I am so proud that Sonya's Story is ranked #3 in the special needs category.  It is truly amazing to be ranked so close to the top ensuring that others will be able to come across my blog and learn about CDKL5 and help us raise awareness!  


This all because of YOU and is much appreciated!!!


Sonyas Story A Journey 

With CDKL5 Give Sonyas Story A Journey With CDKL5 some cupcake love!                         


blog address: http://www.sonyasstory.com
blog details: Sonya was diagnosed with a mutation on her CDKL5 gene when she was 2 months old. She began having seizures at 4 weeks and 3 days, and after genetic testing we learned the cause. She deals with daily seizures as well as global developmental delays. This blog is used as an outlet to discuss feelings along the special needs journey.
keywords: CDKL5 Sonya's Story Epilepsy
member since: September 26, 2015
overall rank: #71 | category rank: #3

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Thursday, November 19, 2015

Who am I here for?

With every activity, therapy, medical procedure and doctor I choose for Sonzee it is of course always with her best interest in mind.  I try really hard to think about what she will benefit from on a developmental level as well as her own personal enjoyment.  There have been times lately while we are in one of her scheduled classed that I find myself wondering who am I really in the class for.

With all of her activities and appointments her participation and awareness really depends on the minute.  I wish she would print out her anticipated seizure schedule because it would be extremely helpful for me as I create her schedule.  If she's tired or cranky and has had a recent seizure this obviously negatively impacts her involvement.  I try hard not to get frustrated since there is nothing I can do about it, but I have had to leave classes or sit to the side because it was just not going well.  It is on these days especially, that I tend to question my reasoning for putting her in the classes.

Is she really benefiting from being a class that is geared towards typically developing kiddos?  Am I only putting her in these classes because all of her siblings went through the classes?  Is she in these classes simply because it is what I am used to doing with a child her age?  Is she cranky because she is telling me this isn't the right class for her?  Am I doing this class because deep down I hoping she will be more typical?

When I people watch during these classes I can usually see the concerned looks from other mom's who don't know about her diagnosis.  They watch me interact with her and then give me a half crooked smile as our eyes meet.  They watch her, they look at their child and they ask me if Sonzee was a preemie or how old she is.  Sometimes I wish I could read their minds accurately because I would happily answer the questions it appears they are wondering.  I wonder during these times if I am making a bad choice putting her in this type of situation. Or is it my feelings I am wondering about?

I tell myself it will be great for her in the long run being exposed to typically developing same aged peers, but will it?  Or am I simply questioning my decision because of my discomfort?  The awkward way I feel when I look around the room at all the typical kids.  I wonder how much of my discomfort is in my head.  I wonder if she would benefit more from a group interaction with others who are in the same developmental stage?  Or is just me who might feel more comfortable?

When I am in these classes I am constantly wondering,  "who am I in here for?"




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Wednesday, November 18, 2015

Thank You

A big thank you is in order to all of YOU who have joined our journey, spread awareness, purchased Team Sonya shirts, and participated in our fundraisers.  It is amazing to have such support and it would be impossible to spread awareness of CDKL5 or epilepsy without you!

We have been having some incredible Team Sonya fundraisers here in Phoenix throughout November.  It was a great turn out for the Saturday night Arizona Coyotes Vs. NY Rangers ice hockey game, November 7.  Thank you to all of you who came out and showed your support!




We also had a great time hosting a CDKL5 and Epilepsy Awareness table at a local health fair this past weekend.


Thank you to everyone who made donations and now has pens, water bottles, and totes to help spread more awareness.

Another successful event was our in house Mary Kay party, unfortunately I do not have any pictures from the night because we were pampering ourselves, but it was a lot of fun, and more money was donated to the International Foundation for CDKL5 Research.  A HUGE thank you goes to my soul sister Jennifer Causby for flying all the way to Phoenix to be our Mary Kay rep!!!

It is truly heart warming to see so many of you help raise awareness for CDKL5 and Epilepsy.  I appreciate all of you who have offered to host parties for your products, you are ALL fantastic!!!!

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Monday, November 16, 2015

Raising Awareness

As of a November 13, 2015 article published, 1 in 45 children are suggested to have been diagnosed with Autism based on a new government survey of parents.  Due to the numbers coming from a parent report, the official estimate according to the U.S Center for Disease Control is 1 in 68 American children are diagnosed with an Autism Spectrum Disorder.  Most recently in the last 5 years more research has determined that the cause of Autism is both gene related and due to environmental factors.  There has been a TEN fold increase in the past 40 years, and the increase is attributed to both improved diagnosis AND awareness.

According to the ALS Association, in the summer of 2014, millions of people began discussing Amyotrophic Lateral Sclerosis by simply making a video of dumping ice cold water over their heads and nominating others to do the same or make a donation to the ALS Association.  Before the time of the "Ice bucket challenge", significantly less people knew what ALS was.  Due to the social media frenzy surrounding the ALS Ice bucket challenge, a critical effort was made possible in paving the way for "drug development guidance designed to accelerate the development of therapies to slow or stop ALS".  There is currently one FDA approved drug that "modestly slows the progression of ALS in some people". 

The Susan G. Komen non-profit organization brings awareness and advocacy for the fight to end breast cancer by providing the 3-day race for the cure, selling clothing and holiday theme cards, and offering credit cards with pink ribbons so more women learn about early detection methods.  There is now a 99% 5 year relative survival rate with an early stage breast cancer.  

If you ask me why I began Sonya's Story, I will tell you two answers.  My first would be simply because my mother (and Sam) told me I should do it.  It would of course be a great outlet for me and it would be a great way to document our journey.  The second answer, which is weighs more in my mind, is solely due to my desire to raise awareness for CDKL5.  

Unless you have come across Sonya's Story or know one of the other approximately 1000 families impacted by CDKL5, then you are part of the billions of people that have no idea a mutation on the CDKL5 gene is even possible.  Before April 17, 2015, neither Sam, nor I, nor our family or friends had uttered these characters together.  We did not know the challenges 4 simple letters and 1 number could provide.  We did now know that we would have a child living with an incurable disorder.  We did not have a cause.  

 While donations are amazing because they pave the way to a potential cure, what is even more important is getting the accronym "CDKL5" to roll off your tongue fluently.  It is sharing the symptoms so others who have undiagnosed children experiencing seizures paired with developmental delays and other hallmark signs might be able to get their answer.  It is teaching professionals about a disorder so they do not tell parents "babies do weird things" when there is something more serious going on.  

Why do I feel it is important we raise awareness for CDKL5?  The more people who know about the disorder the more attention it receives, the more it is talked about, and the more I feel like I am actually doing something that could benefit Sonya. 




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Thursday, November 12, 2015

Joy

As you watch your child learn and explore it brings such joy to you as a parent.  They see the world from an entirely different view, and as a parent it can only bring a huge smile to your face to witness the pure innocence and intrigue.  With all three of Sonya's siblings, I have felt my heart burst with love, appreciation, joy, admiration, and pure excitement as I have watched them develop each of their own personalities, and turn into the little people they are.  They each make my heart swell with delight daily as I watch them interact with one another, learn a new skill, or just watch them be themselves.

If you had asked Sam 7 months ago if he thought Sonzee would bring us as much joy as our other children, he would have told you he doubted it.  While I was slightly offended that he felt that way and I was quick to reassure him that she could and would, I secretly held a bit of doubt within myself.  I thought to myself "how could it be possible for a child who is not supposed to be a functional member of society be able to do anything that could bring the same amount of fullness to my heart as her siblings."  It may sound awful, but when you find yourself in the deepest and darkest hole, the thoughts you have are not always ones you wish to look back upon with fondness.  I feel that our darkest days were justified at the time, but if I could go back to my "initial diagnosis days" self, I would tell her "it may not be what you intended for Sonzee, but just wait, you will see her prove you wrong in so many ways and so many times".


Just about every Tuesday afternoon I load up Sonzee and her older sister, and we head off to school to pick up their older siblings.  More often than not the Sonzee bear is taking a little nappy poo, and on those Tuesdays everyone piles into the minivan and we head home.  However, there are some Tuesdays where she is awake and appears to be taking in the scenery.  We pull into the parking lot and she is looking out of the window, often sucking her thumb.  I go and sign out her brother, and her sister follows shortly after.  They take off their backpacks and I load those into the front seat while they both climb to their car seats in the back.  As they enter the car they are greeted by an extremely ecstatic 2 year old shouting their names and so happy to be reunited.  They both need to be reminded at least 4 times to "say hi", and "be nice" all within 90 seconds of their arrival.  As our oldest makes her way to the back, she glances at Sonzee and notices she is awake.  No words are necessary for the story that the following pictures tell.

 
It is a completely indescribable feeling when you see your atypical child react in such a typical manner.  It is a moment like this that makes me convinced beyond any reasonable doubt that Sonzee bear is aware of her surroundings, that she is "cognitively with it", and that she loves and adores her "twin girl".  It is a moment like this that makes my heart overflow with such happiness, gratitude, joy, and love in such a way that I cannot articulate, nor even knew was possible just 7 months ago.  Without being placed in this situation, I never would know just how much joy I could experience in one single moment.  So in a way Sam was correct, Sonzee won't bring us as much joy as her siblings, she will bring us more.  


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Tuesday, November 10, 2015

Unpictured

**The post was written a month ago when Sonzee turned 8 months old

The first thing that I do when I see this picture is smile.  My beautiful blue-eyed eight-month-old daughter is smiling with the biggest grin on her face.  For a split second I do not think about anything negative and I enjoy the feeling that is circulating through me.  The smile alone in this picture helps me to “ignore” the steps that it took to lead up to this fantastic pose.  You see, this picture is staged.  The amount of strength, perseverance, and time it took to make this moment possible is unclear with just a simple glance. 

Yes, I staged my 8 month old’s “monthly birth day” picture on the corner of the black couch in the living room.  I originally attempted to do the photo shoot on the rocking chair in our master bedroom but failed miserably.  What you do not see in this picture is that our eight month old cannot support her own body in a seated position.  Due to the height of the armrest and the location where it joins the back of the rocking chair, her body was not sufficiently supported.  This resulted in her head falling backward, and she was quite displeased.  I then tried moving her into the middle of the chair in hopes it might offer more support; that backfired on me as well due to the angle of the chair and her poor neck control, so she kept falling to the sides.  Being fearful her discomfort and dissatisfaction would prematurely end our session we relocated into the living room. 

She was now placed in the corner of the black couch, which gives her enough cushioned support to hold her own body.  I whispered to her “we are almost done, just give me one smile”.  Another 14 snaps occurred before a small upward grin emerged.  What is not pictured is my other daughter and I cheering her on for all 14 attempts.  We were making silly noises, and smiling so fiercly my face began to hurt.  What is hidden from this side of the camera is me feeling frustrated and defeated (as I tend to do each month) because she just would not smile.  My husband walked into the room and I plead for his assistance.  If we had a behind the scenes camera set up, you would see a 33 year old man with a huge smile on his face, squealing to our daughter in his highest pitch possible.  Three more pictures taken and on the fourth snap, FINALLY, this gem was captured.

You might be curious as to why so much effort must go into a simple eight month old’s photo.  The reason; because what is not noticeable in this picture is my daughter’s medical alert bracelet stating she suffers from epilepsy due to a rare x-linked genetic disorder, Cyclin-Dependent Kinase-Like 5.  A disorder so rare, the community references it only by the abbreviation of the specific name of the gene, CDKL5, which describes what it does.  This gene is responsible for providing instructions for creating a protein that is essential to normal brain development.  What is not depicted is a severe developmental delay causing smiles for this beauty to come following intense physical, mental, and emotional effort from both herself and her cheer squad.  The amount of energy it takes for my baby girl to hold her head up and smile at the same time is something you nor I will ever be able to fully comprehend.  While based on my daughter's expression she is pretty pleased with her father's antics, what is not evident is how much inspiration, joy, and amazement her mother receives by one wide mouth, toothless grin, on her monthly birthday.

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Monday, November 9, 2015

Epilepsy Awareness: 40 Different types of seizures


Did you know there are 40 known seizure types...

Sonya has experienced the following seizure types:

1. Focal/partial seizures
2. Secondary generalized seizures
3. Myoclonic seizures
4. Nocturnal seizures
5. Complex partial seizures
6. Simple partial seizures
7. Tonic seizures
8. Reflec epilepsy (excessive stress can bring on her seizures)

For a complete list of the 40 types of seizures that are known, please visit: http://epilepsywarriors.org/epilepsy-warriors-resources/40-different-types-of-seizures/

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Thursday, November 5, 2015

Photographs

When G-d brings certain people into your life, the reasons may not initially be so clear.  Almost exactly six years ago, Sam and I enrolled in a Bradley Method Childbirth class before having our first daughter.  In those days our amazing teacher (and doula through all four births of our children), had intimate classes held in her home.  I remember the day we introduced ourselves and learned that the couple sitting to our right was (also) pregnant with a little girl (we learned when our daughter was born we had that in common), also had a due date of February 5, was also being seen by the same medical group, and was also delivering at the same hospital.  We exchanged contact information, became friends on Facebook, and learned how talented these two people were in the art of photography.  

Over the years their business has blossomed, and despite the fact they found their niche to be engagements and weddings, they always manage to find the time to take our family photos.  I have always stood by their work and even though I am always sure the most current sessions resulted in "their best work yet", I continue to be amazed at how amazing the next ones turn out.

I have been fairly consistent over the years having pictures taken two or three times a year.  I am slightly obsessed with making sure we have milestones of all the children captured.  With Sonzee bear, I have slacked a bit.  Chalk it up to worry about how the pictures would turn out, or maybe holding out hope and wanting to wait until she would be sitting independently; I procrastinated on scheduling our family pictures.  When I finally reached out to our friends, they gave me a date, and we booked it.  I was torn about the location, and in the end, we decided to attempt a "Lifestyle" session since that is one we had not done before, and I really wanted to capture our family's essence.


I always love how our pictures turn out, but for the first time, when I scrolled through the many images they captured, my eyes filled with tears of happiness.  I was drawn to the story each picture told.  Each of our children’s individual personality screams out.  What a talent there is in capturing such raw, incredible moments.  What a blessing it is, that these people are able to capture our craziness, and show the true beauty of our chaotic, messy, and unpredictable life.  

My favorite thing about these pictures is the realness they capture.  No, the Sonzee bear is not sitting independently and no, she did not smile on command, but that is okay, because Sonzee doesn't do those things on a regular basis.  There are some images that I look a little sad, and to be honest, that's the truth as well.  All of the photos capture our family as we are right now, in the moment, with no censoring.  I feel a conglomerate of emotions while I look through all of the images, yet gratefulness, love, and blessings are the top three.  Without furthure adieu.  Here is a glimpse into an evening of our life.








THIS POST IS DEDICATED TO OUR AMAZING PHOTOGRAPHER FRIENDS WHO HOLD SUCH A SPECIAL PLACE IN MY HEART.  THANK YOU FOR THE HUNDREDS OF PICTURES, THEY MEAN MORE THAN YOU CAN IMAGINE!


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Wednesday, November 4, 2015

First Aid for Seizures

You never know where you might be when someone around you experiences a seizure.  Here are some quick handouts for you to view that explain First Aid for Seizures-EnglishFirst Aid, and First Aid for Seizures-Espanol from the Epilepsy Foundation.

Also available on Google Play and at the App Store, is the Seizure First Aide App, download from here.

The following features are available on the App:


1. Basic First Aid for all seizure types
2. Seizure Timer
3. To view videos of the 5 most common types of seizures
4. Get Immediate Help
      A. Call 911 (Depends on situation)
           a. If a seizure lasts more than five minutes
           b. The person:
              • Is pregnant
              • Does not regain consciousness
              • Does not breathe after one minute
              • Has one seizure after another
              • Is injured • Asks for help
              • Has no epilepsy ID

      B. A 24/7 Help Line


This App was created by The Epilepsy Foundation of MN and does not provide medical advice/services; it should not replace skilled medical personnel.  This app contains videos of actual seizures; viewere discretion is advised.

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Tuesday, November 3, 2015

To the parents of an older child with special needs,

I have barely even begun this journey and I am exhausted.  Many days I wish to throw in the towel and give up; instead, I give myself a proverbial smack, wipe away the tears, suck it up, and just keep on going.  More often than not I follow my schedule as if I am an empty shell, simply going through the motions, but not really present.  There have been a couple days where I do not know how I functioned at all.  I feel so guilty because I am sure my other children can tell.  I have conversations in my head about what they will say about me when they are older; that I was always preoccupied or appearing sad or frustrated all of the time.  It is often during these more challenging days and times when I think of you most.

I think of how many times over the years you have had to pick yourself off the floor on days when it just plain sucked.  I think of all the times you must have wanted to say, "I've had enough".  I think of all the challenges you might of endured, and I am sure there are some that I don't even know exist.  It all makes me wonder, how have you done it?  How do you do it?  How do you keep doing it?

People have told me I am strong, that they do not know how I do it, and that I am an inspiration.  You know better than I do, that I am only doing what I have to, what is essentially required of me as a parent, what any parent who was put into my situation would do.  Maybe you can relate when I say being told I am "strong” or that I make someone "proud" is not always enough.  Sure, those sentiments make me smile, and give me a little boost of reassurance, but then looking at my daughter, being "strong" and "inspirational" has done nothing to help her situation.  

I know this journey is going to be an uphill battle and there will be depressing and challenging days.  I also know the journey will be filled with plenty of celebrations that will counter balance the negatives, and of course, in the "end", "it will all be worth it".  No one knows more than you that this road with all the bumps, forks, and unpaved paths just plain stinks!  Tell me, how do I maneuver through it all?  I know like parenthood and life in general, we all experience things differently, and I am sure I will learn along the way, but what advice can you give a rookie that will be referenced for many years to come?

What I am asking you, dear moms and dads who have traveled this road for much longer than I have, what gets you out of the slumps?  What makes you stay sane?  How do you balance your fears alongside reality?  Is there anything that will help heal the feeling in the pit of my stomach or the ache in my heart?  When all you have is hope and faith and you begin to see those fade, how do you get them back?  How do I climb to the top of the mountain and get some fresh air?  If I keep my eye on the prize, what does that look like?  If I am honest with myself about what the future holds, have I given up on my daughter, have I already lost the hope?  If I keep dreaming about what the future might hold, am I just naive if I think those dreams might actually become a reality?

My motto over the past eight and half months is that we will try everything once.  It does not matter if the idea appears ridiculous, or holds no water.  If someone tells me dancing in rain puddles will get my daughter to laugh, you bet I will be placing her outside in the storm.  I will continue to dream and I will continue to take chances, but how do I protect my heart from the extreme pain that follows when those "miracle treatments" just do not work for us?  How do I balance the fact that I feel like a failure, when I know deep down it really will not make much of a difference if I sit that one "potentially life altering experience" out?

If you, my dear veterans, could give some advice for how to best survive this journey with my child with special needs, what would it be?

Sincerely,

A rookie mom to a special baby girl who has special needs




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Monday, November 2, 2015

What can YOU do?

Throughout this month, Sonzee would love to challenge you to wear something purple in honor of epilepsy awareness month.  Please send us a picture while you are sporting purple by:

  1. Emailing info@sonyasstory.com
  2. Tweeting @SonyasStory and use the #epilepsyawareness
  3. Post to our facebook page: https://www.facebook.com/Smiles4Sonya/

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Sunday, November 1, 2015

Brief facts about epilepsy

November is epilepsy awareness month.  A main characteristic of CDKL5 is having seizures.  For families impacted by CDKL5, not only do we get to spread awareness for CDKL5 in June, but we get to spread awareness of epilepsy in November.  

Here is an extremely brief introduction into epilepsy. Please stay tuned for more facts about epilepsy throughout the month!
"More people live with epilepsy than with autism spectrum disorders, Parkinson's disease, multiple sclerosis and cerebral palsy -- combined."  (Credit of the Epilepsy Foundation)

What is epilepsy?

  • a term used in place of the term seizure disorder
  • a general term use to describe a condition in which seizures are a symptom

What causes epilepsy?

  • Causes vary depending on age of a person.  Causes can include infections, stroke, neurological disorders, and genetics 
  • In six out of ten cases, the cause of epilepsy is UNKNOWN
Who gets epilepsy?
  • Any person
  • Any age
  • Any ethnicity
What are some treatments of epilepsy?
  • Medications
  • Brain surgery
  • Diet
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