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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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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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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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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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-English, First 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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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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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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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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Mommy Instincts

I am usually confident in my parenting choices, usually secure with any thoughts related to our children's well-being.  After I analyze facts, I make a decision and I trust that my instincts won't mislead me.  If I feel one of the kids has strep, when I take them to the doctors and request the swab, I am correct.  When they have a cold, I am typically good at telling whether it will pass on its own or require medication.  I am usually right on with my mommy instincts.  However, as we journey further into the neverending desert of CDKL5, I feel like I am losing my footing.  It is as if I am standing in quick sand and no matter how much I try, I am being swallowed alive.  I have lost my ability to differentiate between what is “typical baby” versus what is cause for concern.  I am so frustrated I am in this position because I don't know what is "red alert" and what is "yellow alert". I find myself second guessing every thought, every decision, and every idea that infiltrates my head.  In short, I have lost trust in my mommy instinct.

This makes me sad.  This makes me angry.  This makes me fearful.

I first took notice of my disappearing instinct about two months ago.  Sonya was fussy and she kept throwing her head back.  It went on for about four days and each day I grew increasingly concerned.  I mentioned to somehow she had been similarly cranky about 3 weeks prior, and she was diagnosed with an ear infection.  The thought never occurred to me that she could have another ear infection so close together; and no way could she just be a cranky teething baby.  Naturally, I assumed she was experiencing symptoms of a sensory integration disorder.  I went onto Amazon and like all moms who have a cranky baby who tilts her head; I purchased two books about a sensory processing/integration disorder and called it a day.  It was the following night when talking with Sam that my lightbulb went off and I realized I should probably bring her back to the pediatrician.  In the end, it was another ear infection.

My second experience was after watching Sonya make movements during her sleep, which caused me to panic.  I am starting to think I may have some post-traumatic stress from this whole ride.  Every little twitch, jerk, head movement, sigh, blink of her eye, change of her breathing, or slightest change to her sleeping demeanor has me leaping from the bed hovering over her like a helicopter.  Could it possibly be that she is just moving in her sleep and making a typical baby movement?  Nope, psycho mommy over here is 100% sure her brainwaves are now in a constant state of seizure.  It is only natural to schedule an EEG to rule this out so I can go back to being a neurotic, sleep deprived, hovering mommy; after all, it seems to be working out just fine.

We can skip over plenty of others and focus on the current situation.  Sonya has been in and out of the pediatrician's office for two and half weeks.  Both of her sisters finished antibiotics this past weekend and so I was nervous she would catch strep as well (yes, I know it is so rare for any child under two to get strep.  I also happen to have three kiddos who ALL had strep when two or younger and one of them did not even have his tonsils...so I tend to have over achieving rule breaking children).  Each time I have taken her in, they have told me it was "just a cold".  Over the weekend, her cough grew worse and so I had a panic attack when I remembered she never had her DTap shot, and what if she has pertussis?  The doctor humored me by doing the swab (results will be back next week) and gave us another round of antibiotics to get rid of the potential "sinus infection" she might have resulting in all of her symptoms.  She has been sleeping a lot more than she has been awake and while I am slightly concerned, my mommy gut is numb.  Am I just being a good old nutcase or do my concerns have any real validity?  Half of me says take her back to the doctors, run more tests; find out what is really wrong.  The other half...it tells me do not listen to what the other part of you is saying.  

Whether consciously or subconsciously the words "What does your gut tell you?"  cross through the mind of every mom on a nearly daily basis, yet when these words flash inside my head, I am lacking the confidence to know the answer.

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Does she know?

I will admit that just about every week on either Friday night or Saturday morning I open a tabloid magazine and read it from cover to cover.  Do not judge me; I consider that being a good wife because my husband owns magazine websites.  I consider this my "mindless" time and enjoy living vicariously through the celebrities lives that are mentioned.  The most intriguing page to me is the one that has the little blue birthday box.  There is a list of celebrity names, birthdays, and age they are turning.  I usually have mixed feelings of envy and disbelief.  Envy because of what my life could have looked like, had I modeled, acted, or became famous; utter disbelief that those little kids on the Disney channel are about my age or just a few years younger.  I cannot imagine I am the only person who lets her thoughts drift off to imagine a life of "what ifs".  Oh, to be able to bathe in money, to fly on a personal jet, to have a billion followers of Sonya's Story, my list could go on.  These thoughts lead me to my recent internal dialogue regarding Sonzee.  I wonder as she gets older will she wonder what her life would be like if she did not have a mutation on her CDKL5 gene?

People have told me "she won't know any different", but is that true?  Will she look at her siblings and see all they can do and wish her body could do the same movements?  Will it make her angry because she cannot move her muscles the way she wants, or say the words aloud that she is thinking in her mind?  Will she even be aware of all the battles set before her?  Is it that she will be trapped, locked in her own mind, unable to get her message across because her brain has difficulty communicating with all the parts of her body?  Rather, will she just be content because "she doesn't know any better?"  I wish I knew what really goes on in that pretty little head of hers.  I cannot really figure out which I would prefer for her.  Would it be better for her that she knows she is struggling or not even have a clue about the parts of life she is missing?  I truthfully cannot figure out which would be worse.

I try to put myself in her body.  How frustrating I would find it to have absolutely no control.  To be screaming in my mind all my thoughts, but not being able to let others know what they are.  To want to move my body but unsure how to communicate to my brain which limb I want to move and to where.  Those examples suffocate me to the core.  I can only compare that to being buried alive, screaming for someone to take the dirt off my body, but no one being able to hear me.  On the other hand, if I had limited to no thoughts going through my mind and I just stared out watching "life pass by" I suppose I would be content.  From my point of view as a parent that would make me sad.  If it were Sonzee though, would it make her sad, or would it really be that because she does now know differently, she is just satisfied?    

Am I unbiased when it comes to my feelings either way?  Am I considering her potential struggles frustrating, and her potential indifference to be "sad" only because I know differently?  Is the main reason we "feel badly" for others simply that our personal experiences tell us someone else's situations are less than, worse, or, different from ours?  All of my thoughts lead me full circle back to my original thought, will Sonya know she is any different?  If she does know, will she even care?  I guess the bigger question for me is if she does not care, should I?

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